PAIN RELIEVING DRUGS IN 12 AFRICAN PEPFAR...

Dr Richard HardingDepartment of Palliative Care, Policy and RehabilitationKing’s College London, England

Richard A. Powell, Fatia Kiyange, Dr Julia Downing, Dr Faith Mwangi-PowellAfrican Palliative Care AssociationUganda

January 2007

PAIN RELIEVINGDRUGS IN 12AFRICAN PEPFARCOUNTRIES:Mapping current providers, identifying current challenges, and enablingexpansion of pain control provision in the management of HIV/AIDS

We are grateful to Presidents Emergency Plan forAIDS Relief for funding this study, to the members of the US Office of the Global Co-ordinator andMembers of the USG Palliative Care TechnicalWorking Group who gave useful input andcomments on protocol drafts, and to all the sitesand INCB competent authorities that participated.

Executive Summary 3Rationale 3Methods 3Main findings 3

Site configuration and activity 3Opioids 3Regulation 4

Recommendations 4For practitioners 4For educators 5For funders 5For policy makers and regulators 6For researchers 6

Background 7Defining palliative care 7The holistic nature of palliative care 7Palliative care in Sub-Saharan Africa 7Opioid availability 8Barriers to opioid availability 9

Study aim 10Study objectives 10Study design 10

Methods 10Procedure 10Recruitment and data collection 10Survey items 11Data processing and analysis 11

Results 11Palliative care sites 11

Site sample characteristics 11Disease groupings served and antiretroviral therapy provision 13Number of adult and child patients seen 14Clinical staff on service 15Pain and symptom control prescribing and dispensing 16Government, country and policy context 18Opioid training, expanding access and current challenges 22Current challenges: purchasing, producing, dispensing and prescribing 26

INCB competent authority data 29Respondents 29Current opioid supply and regulatory system 29Comparison to site responses 31

Expanding Pain Control in 12 African PEPFAR CountriesPAGE 1

TABLE OF CONTENTS

Discussion 32Definitions and components of palliative care 32Antiretroviral therapy 32Patient population 32Staff skills 32Analgesia and symptom controlling drug availability 33The service perspective on opioid access: factors hampering provision, expanding access and facingchallenges 33

The INCB and Provider data: common goals and disparate perspectives 35Advocacy for greater access 35Drug availability: INCB and site views 35Limitations 35Conclusion 36Recommendations 36

For practitioners 36For educators 36For funders 37For policy makers 37For researchers 38

Acknowledgements 39

Department of Palliative Care, Policy and Rehabilitation, King’s College London 40

African Palliative Care Association 41

References 42

Appendix 1 APCA's Tool for the Classification of Palliative Care Activities 43

Figure 1 The WHO Pain Ladder 8

Figure 2 Challenges and responses: data integration 34

Table 1 Country of respondents 11

Table 2 Category of care site and components of service delivered 12

Table 3 Sites of care 13

Table 4 Disease groupings and antiretroviral therapy 14

Table 5 Number of patients seen per year 14

Table 6 Clinical staff mix and opioid-prescribing staff 15

Table 7 Analgesics prescribed, dispensed and supply continuity 16

Table 8 Opioid sources 17

Table 9 Symptom control drugs prescribed, dispensed and supply continuity 17

Table 10 Opioids, essential drug lists and legal requirements 19

Table 11 Opportunities and challenges: expanding opioid provision 23

Table 12 Current issues in opioid provision 27

Table 13 INCB views: current opioid supply and regulation 30

Table 14 Comparison of INCB and provider data: opioid availability 31


TABLE OF CONTENTS

Rationale

1) Pain is a significant and distressing problemexperienced by people living with HIV/AIDS. In order to adhere to the World HealthOrganisation’s (WHO) pain ladder, it is essentialthat HIV care providers can access opioidanalgesia for their patients. Although palliativecare is defined by its multidimensional focus onphysical, emotional and spiritual pain, the lackof access to opioids in Sub-Saharan Africa hasbeen identified as a major challenge. This studyaimed to identify current opioid prescribingservices and regulatory bodies within 12PEPFAR countries, and to describe barriers to,and potential for, expansion in the number ofopioid providers, for people with HIV/AIDS.

Methods

2) A cross sectional survey questionnaire wasdistributed to palliative care sites in 12countries, and a telephone interview conductedwith International Narcotics Control Board(INCB) competent authorities in each. The datawere analyzed and integrated to identifypotential strategies for opioid expansion.

Main findings Site configuration and activity

3) The majority of the sample (56.4%) were‘integrated’ Non-Governmental Organisations(NGOs) offering a range of HIV services,including a component of palliative care. These services focused on general counseling,family/community education, food parcels/grants/income generation, HIV prevention andtesting. The palliative-only services (35.5%, e.g.hospices) stressed bereavement counseling,family support, spiritual care, professionaleducation and advocacy.

4) All sites concurred with the WHO definition ofpalliative care, with no deviations or adaptations.

5) Although palliative care should be offeredalongside antiretroviral therapy (ART), only 11sites (17.7%) were ART providers, and 5 (8.1%)had no local access at all, the remaining 40(64.5%) having nearby provider access for their patients.

6) Palliative-only services cared for significantlyfewer patients per year than did the integratedNGOs and were significantly more likely toprescribe opioids to both adult and childpatients while under their care.

7) Comparing palliative-only to integratedservices, there was no significant difference inthe number of clinical staff, nor in theproportion of staff able to prescribe opioids.However, the palliative-only services had asignificantly higher proportion of clinical stafftrained in palliative care.

Opioids

8) 36 sites (58.1%) were currently dispensingopioids. Less than constant supply of analgesiawas reported by sites at all three levels of theWHO Pain Ladder. Seven sites reported lessthan constant supply of Step 1 analgesics.

9) 18 sites did not report access to an agent forthe management of neuropathic pain, acommon symptom of HIV disease and an ARTside-effect. Again, there were breakages in thesupply of antiemetics (11 sites), anxiolytics (7sites) and neuropathic pain treatments (7 sites).

10) The common factors hampering opioidprovision were: Supply (e.g. central stores notstocking adequately, overly tight control,unreliable stocks, few dispensers); Legislation(e.g. regulations, lack of national policy onopioid use, bureaucratic processes); Education(e.g. existing clinicians do not know how toassess and treat pain, fear of addiction, poorpatient compliance, palliative care stresses itsspecialty to the point of exclusion, doctors lackinterest in dying patients); Practical (e.g. costs,storage requirements, not enough prescribers,unqualified staff in home-based care, poorinfrastructure to follow discharged patientshome, lack of sugar for making up syrup, andshort shelf-life of morphine).

11) Responses suggesting mechanisms to assistmore providers to access opioids: Advocacy atgovernmental and public levels on the need foropioids, and on lifting restrictive legislation;Collaboration with prescribing doctors, acrossprimary and secondary care, with hospital

Executive Summary


pharmacies; Training in pain assessment andmanagement, in all curricula, on palliativerather than supportive care, and shortercourses for prescribing; Coverage to rural andhome-based care services.

12) The identified challenges to expansion were:Political, achieving motivation; political will andto support opioid use Educational, challengingmyths, teaching that HIV requires Step 3 painmanagement, and achieving medical culturalchange; Resources, time for doctors toprescribe, drug costs, storage facilities, numberof pharmacists, supply breaks, building up ruralservices, and the number of prescribers.

13) The suggested methods to overcome thechallenges included: Education, training forhealth care workers, input to medical curricula,teaching for HIV services, and the developmentof shorter courses; Advocacy, support throughAPCA, and government lobbying;Organisational, central supply of drugs andcollection points to be facilitated bygovernment, and better linkages with hospices;Resources, funding for drug storage facilities,increase in hospice capacity, more pharmacists,and the employment of professional staff inhome-based care (HBC) organisations.

Regulation

14) There was considerable difficulty with Ministriesidentifying and contacting their INCB competentauthorities, which suggests potential problemswhen addressing one of the key mechanisms for expanding opioid access, i.e. advocacythrough governmental and other bureaucratic organisations.

15) In each of the five countries, the INCBcompetent authority cited specific opioids theybelieved to be available in the country that were never cited by any site in the surveyprovider data.

16) The majority of INCB competent authorities felt that the current regulatory procedures were working well, which contradicts theprovider data.

17) All INCB competent authorities except one feltthat there were currently adequate numbers ofopioid prescribers in their country.

18) While there is a consensus within the palliativecare movement that access to opioids should bewidened, this was not reflected in the INCBdata. INCB competent authorities stated doubtsregarding their capacity to regulate increasingnumbers of services, and questioned thecompetence of current prescribers.

19) The majority view among INCB competentauthorities was that access could be expandedthrough education: increasing numbers ofmedically trained personnel, addressing opioidfears among existing personnel, and improvingthe caliber of those currently able to prescribe.

Recommendations For sites and HIV care practitioners

1) While the presence of both specialist andintegrated centers should be encouraged, it isessential that each can offer the basic serviceelements of the other when needed. Examplesof this from our data would be expansion ofbereavement care and family support inintegrated services, and economic supportactivities in palliative-only centers. However,this expansion of core skills and servicecomponents should occur with the proviso thatspecialist palliative-only centers have referralcriteria and capacity to offer care for morecomplex cases.

2) Referral networks between ART sites andpalliative care services should ensure that notonly are patients under palliative care referredfor ART, but that mechanisms of clinical supportand consultancy are offered so that ART sitescan access palliative care when treatment isinitiated, maintained and discontinued.

3) With the wide range of distressing andburdensome HIV and treatment-relatedsymptoms, practitioners should remember toassess and treat the full spectrum throughoutthe disease trajectory including ART treatment.Also, any side-effects of opioids must beconstantly monitored and controlled, and drugsmade available to achieve this.

Executive Summary


4) Where opioid access is poor, networks shouldbe established with current hospice andgovernmental providers to establish routes for dispensing.

5) Rural and HBC services should consider theirpotential routes to palliative care drugs whenarranging palliative care training for their staff,as spiritual and emotional pain cannot beoptimally managed without the control ofphysical pain.

For educators

6) All services, whether palliative-only, integratedNGO or government facilities, must ensure thatall clinical staff are trained in palliative care to abasic agreed level. This would assist staff toassess palliative care needs, to provide generalpalliative care, and be aware of when to makeappropriate referrals for specialist input.

7) Training and education providers should formcollaborative teaching activities with currentclinicians. Those in practice require ongoingprofessional education to improve the paincontrol of those living with HIV, and to meet theneeds of the dying.

8) Training and education providers should formcollaborative teaching activities with futureclinicians. The inclusion of palliative care inmedical school curricula should be a goal for all countries.

9) Education must take a long-term view of theprocess of teaching, and mechanisms put inplace to ensure follow-up to support theapplication of skills learned.

10) Shorter palliative care courses that focus on prescribing should be considered for current clinicians.

11) Educators need to redouble efforts to addressthe public fears of opioids. A potential means toachieve this may be through the existingsignificant global networks for HIV advocacygroups such as ICW and GNP. Currently theissues of palliative care and opioid use are notcampaigning issues by advocacy groups ofpeople living with HIV/AIDS.

12) There may be educational opportunities to work with INCB competent authorities todemonstrate the successes of opioid use andthe current limitations that could be addressed.Such consultation may also offer INCBcompetent authorities an opportunity to sharetheir concerns. Interactive education andsharing of viewpoints may offer better potentialfor feasible and acceptable strategies for opioid expansion.

For funders

13) Funders must take account of the high burdenof pain and symptoms that affect quality of life and allocate resources to ensure that these manageable problems are adequatelycontrolled.

14) Patients should have local access toantiretroviral therapy at all services that offerpalliation whatever disease stage the servicefocuses on. Referral and co-management care pathways should be in place to ensure that even if palliative care and therapy are not available at the same site, they are co-ordinated to ensure that they can beintegrated across services.

15) Currently, palliative-only services see fewerpatients. While not all people living with anincurable life-limiting disease should requirespecialist palliative care, and not all people atthe end of life should or could access hospicecare, resources are required to increase thecapacity of these institutions to enhance theireducative, advocacy and specialist role forcomplex case management.

16) Funding for clinically trained staff is essential inHBC HIV sites, as opioids cannot be utilizedwithout staff able to prescribe.

17) Funders should consider the structuralrequirements of sites, e.g. the essential currentproblems of adequate opioid storage facilitiesand pharmacy facilities, in addition to staff andtraining costs.

18) Funders should consider those analgesicsbeyond opioids, i.e. neuropathic pain agents,which are essential for pain that often cannotbe controlled with opioids.


For policy makers and regulators

19) The current opioid (and non-opioid) drug supplysystems experience a number of blockages anduncertainty in supply. Any expansion willrequire identification of the strongest routes,and to strengthen these further, beforeexpanded drug supply can be achieved.

20) The emphasis on expanding opioid supply isbeing pursued to enhance adherence to theWHO pain ladder. It is clear from the data thatthis requires attention at all steps of the ladder,including in some cases provision of Step 1pain-relieving drugs.

21) Policies to expand opioid access must carefullybalance the need for expansion with the threatof additional pressure on unreliable currentpurchase, production and dispensing.Expansion should not be at the cost of reliability to existing providers.

22) Any strategy for expansion must take account of the concerns of INCB competent authoritieswith respect to regulation. Advocacy andlobbying must convince this essentialstakeholder group of the feasibility ofexpansion programs, as current INCBskepticism may prove a significant barrier.INCB’s need adequate resources to monitor and support existing and new opioid providers.

23) The synergies of strengthening supply systems for opioids can also enhance othersymptom-controlling drugs, such as antiemeticsand anxiolytics, which are also essential for this population.

24) Any strategic approach to opioid expansionmust use a multi-pronged approach takingaccount of: supply (e.g. ordering and stocking, consistency of availability), legislation(e.g. regulations on storage and prescribing),education (i.e. ensuring that opioids are usedappropriately) and practical site-specificsupport (e.g. adequate numbers of trained and able-to-prescribe staff, funds and storagefacilities). Failure to address each of these areasis unlikely to achieve sustainable success.

25) Each country should undertake a wide-rangingconsultation process to appraise its currentlegislation and identify the potential to pilot and test safe, feasible and practical legislationfor the prescribing and dispensing of opioids.

26) Policy change, across the legislative andregulatory settings, can only be achievedthrough co-ordinated advocacy that takesaccount of governmental disinterest andprofessionals’ fears of opioid use.

27) Current funding goals to increase the numbersof patients accessing palliative care should takeaccount of the current limitations on opioid useand supply, and address the likely pressure onexisting infrastructure.

28) In order to address the current weaknesses insupply, and build capacity for expansion,greater emphasis and capacity needs to beplaced on training and employing pharmacists.

For researchers

29) In the light of different models of care andnumbers of trained staff and patients seenaccording to service model, multidimensionaloutcome evaluations are required, includingmeasurement of pain and symptom control.

30) Evaluative studies should compare botheconomic costing and levels of analgesiaavailable, taking account of comparativebaseline patient need across models.

31) Referral criteria and care networks should beexamined to understand the movementbetween sites as patients move up and downthe pain ladder.

32) All strategies and programs to expand opioiduse should be evaluated at the site/countrylevel to ensure that lessons can bereplicated/adapted for use in other sites.

33) Longitudinal evaluation of education forinitiatives in opioid use should be conducted to measure practice outcomes.

Executive Summary


Defining palliative care

The World Health Organisation (WHO) describes the goal of palliative care as aiming to improve:

‘the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocialsupport from diagnosis to the end of life andbereavement’. (1)

The holistic nature of palliative care

As demonstrated above by the WHO definition,palliative care is concerned with pain in all itsmanifestations among patients and families affectedby life-limiting incurable disease. This embracesphysical, emotional and spiritual pain (13). Palliativecare can only be said to be present if this ‘total care’package is evident in whatever format is feasible and appropriate in the local setting. Pain controlwithout good psychosocial care may be termedanesthesiology; psychosocial care without adequatepain control is supportive care. This study focusedon the physical pain control tasks of palliative careas this component has been identified as a particularchallenge in the African context. However, werecognize that there is equally important research tobe undertaken into the provision of control ofemotional and spiritual pain, and family support aswell as distressing symptoms other than pain, and in training initiatives.

Why do we need PC as we roll out access toantiretrovirals?

Although palliative care is based on a multi-disciplinary family-based approach to care andsupport, the defining feature of palliative care thatdistinguishes it from supportive care is the elementof pain and symptom control. Given that pain isexperienced throughout the HIV disease trajectoryfrom the point of diagnosis (2), and that severe painis experienced by approximately 80% of those withadvanced HIV disease at the end of life (3), palliativecare has been advocated by the WHO as:

‘an essential component of a comprehensive HIVcare package because of the variety of symptomsthey can experience – such as pain, diarrhea, cough,shortness of breath, nausea, weakness, fatigue,fever, and confusion. Palliative care is an important

means of relieving symptoms that result in unduesuffering and frequent visits to the hospital or clinic.Lack of palliative care results in untreated symptomsthat hamper an individual’s ability to continue his orher activities of daily life. At the community level,lack of palliative care places an unnecessary burdenon hospital or clinic resources.’ (4)

A recent systematic review of patient outcomes inHIV palliative care found significant improvements in pain and symptom control, anxiety and patientinsight (6).

Palliative care in Sub-Saharan Africa

To achieve adequate patient care, the WHOrecommends a three-part strategy for developing acancer pain relief program (7). This strategy can betransferred to other life-limiting illnesses, includingpain management for HIV/AIDS. The three step-strategy states:

(a) Government policy – the national governmenthealth and regulatory authorities shouldestablish and support a policy that makes painrelief a high priority in the health care system;

(b) Education/training – the public, policymakers,and regulators should be informed that pain can be relieved, and health care professionalsshould be trained to manage pain using thethree-step ladder; and

(c) Drug availability – analgesics, including opioidssuch as morphine, should be made available.

Current provision of palliative care in Africa is patchyand is often thought to be provided from centers ofexcellence rather than integrated into the health care system. Home-based care (HBC) (the primemodality of African HIV care provision) has beencriticized for the often inadequate pain controlclinical skills and use of appropriate pain-controllingdrugs (5). A current challenge to improve patientoutcomes is to disseminate lessons learned by thosewho have pioneered palliative care and to balanceexpansion of coverage with quality (8).

Providers of end-of-life care have identified paincontrol availability as a primary challenge (9). The need for adequate pain control will increase asantiretroviral therapy is rolled out across the region,

Background


because side effects can be highly prevalent andburdensome (10) and need to be managed toenhance adherence, while the emergence of otherlife-limiting co-morbidities require palliative therapyas the chronic disease phase increases in length (11) (12).

The growth of awareness of the need to expandpalliative care in Sub-Saharan Africa, and increasingavailability of funds available, have been majordevelopments in patient care in recent years.Increasing numbers of HIV care providers aredemanding to acquire palliative care skills, and themeans to support this growth need to be identified.

Opioid availability

Opioids are essential for the management of severepain, and can effectively control the vast majority ofpain presented. It is not possible to control the rangepain intensity in the clinical care setting withoutaccess to the Pain Ladder, i.e. drugs fromparacetamol to codeine to morphine. The WHOExpert Drug Committee on essential drugs hasdesignated morphine, codeine and other opioids as essential drugs, defined as those that satisfy thehealth care needs of majority of the population, that should therefore be available at all times inadequate amounts and in appropriate dosages. Oral opioid analgesics such as codeine, fentanyl,hydromorphone, morphine, and oxycodone areconsidered to be the cornerstone of good painmanagement. Drugs from these classes of analgesicmust be made available for medical use if acomprehensive palliative care program is to succeed. According to the WHO pain ladder, opioids must beavailable to manage pain in patients whose pain has not been adequately controlled by the use ofnon-opioids, weak opioids and the addition ofadjuvants (see Figure 1). In addition, it is requiredthat opioids are delivered:

‘by the ladder’, i.e. according to Figure 1

‘by the clock’, i.e. titrated for consumption atregular intervals to avoid the unnecessary anddistressing experience of breakthrough pain

‘by the mouth’, i.e. oral morphine for simple selfadministration in the home setting, and absorbedto avoid peaks in the analgesia levels.

Figure 1The WHO Pain Ladder

Source: www.who.int/cancer/palliative/painladder/en

These drugs have, however, proved extremelydifficult to obtain in many African countries.Although in theory many countries permitimportation and distribution of the drugs, it can beimpossible in practice to obtain the necessaryauthority from regulating bodies to prescribe thesedrugs. Indeed, the International Narcotics ControlBoard (INCB, the global authority which monitors thecontrol and supply of narcotics) found that one ofthe biggest obstacles to the use of opioids was thefear among health professionals of legal action thatmight be taken against them if they prescribed these drugs.

There is little or no use of morphine in nearly half ofthe countries in the world. Almost all morphine isconsumed in developed countries. Indeed, in manyparts of Africa, there is limited availability of evensimple pain-relieving drugs. Opioids in countries likeKenya, Malawi and Zambia are only accessible orimported within very tight regulatory frameworks.Since access to appropriate medication for pain

Background


Pain 3

STEP ONENonopioid with or without adjuvant

STEP TWOWeak opioid with or

without nonopioid,adjuvant

STEP THREEStrong opioid with or

without nonopioid,adjuvant

Pain persisting or increasing 3

Pain persisting or increasing 3

Freedom from cancer pain 5

relief and opportunistic infections is central topalliative care, identifying the means to increase thenumbers of HIV care providers who can offeradequate pain relieving drugs, and have thenecessary palliative care skills, is a key stage inscaling-up palliative care in the region.

Barriers to opioid availability

International health and drug regulatory authorities have recognized that opioid analgesicsare not sufficiently available for the treatment ofpain in many places throughout the world. The INCB has asked all countries to take thenecessary steps to assure that opioids are available for pain management.

A number of economic and historic factors contribute to the current lack of oral opioidavailability. Many countries do not have theresources and health care infrastructure to produce and distribute medicines. Traditionally, the treatment of pain has not been as high a priority as the treatment of disease. Injectablemorphine has long been recognized as a potentanalgesic, but the broader realization that oralmorphine is also very effective is more recent.Although the international narcotics control treatyhas recognized for many years that opioids areindispensable in the management of pain, somecountries have drug legislation that prohibits orrestricts the availability and medical use of opioids.In addition, misunderstanding and fear of addictionimpede the rational use of opioids in pain reliefthroughout the world.

The global barriers to opioid availability can besummarized as:

Stringent and outdated laws and regulations forimportation of opioids.

Bureaucracy involved in obtaining authority fromregulating bodies to prescribe drugs.

Fear of addiction to opioids among healthprofessionals.

Poor or no health infrastructures.

Cultural attitudes that make pain relief less of a priority.

Ignorance of the availability and potency of oralmorphine, although the potency of injectablemorphine is known.

Inadequate numbers of properly trained staff toasses and treat pain.

Inadequate resource allocation of medications.

Low funder priority for pain and symptom control.

Lack of training in paediatric palliative care, and lack of availability of drug formulations for children.

Symptoms other than pain

People living with HIV disease experience a range of symptoms beyond pain, and these can be verydistressing and may appear to clinicians to beuntreatable. These symptoms can appear early in the disease trajectory, and may also be a result oftreatment. Symptoms can include diarrhea,rash/itching, anxiety and depression, sexualdysfunction, and fatigue 1-5 6. Therefore, it isessential that clinicians are able to assess and treatthe full range of symptoms, which includes havingaccess to symptom controlling drugs.


This study aimed to identify current opioidprescribing services and regulatory bodies within 12African PEPFAR (Presidents Emergency Plan for AIDSRelief ) countries, and to examine the barriers to, andappraise the potential for, expansion in the numberof opioid providers, for people with HIV/AIDSaccording to the WHO pain ladder.

Study objectives

The three study objectives were:

1. To identify the policy and practice context, and the necessary steps for providers toincorporate step 3 analgesics prescribing in 12 PEPFAR countries.

2. To identify current challenges, practice andopioid supply issues, and practical steps forexpanding the number of palliative careproviders in the 12 PEPFAR countries.

3. To describe the country context of opioidprescribing, the current opportunities andblockages in opioid prescribing, and identifysteps that services in the 12 countries can taketo integrate palliative pain control into theirexisting HIV care services.

Study design

The study utilized a cross-sectional surveymethodology, collecting data from palliative care providers and INCB competent authorities,integrating and comparing findings at the country and continent levels.

Procedure

The study population was defined as servicescurrently in operation defined by the AfricanPalliative Care Association (APCA) as a palliative care service. A clear definitional framework wasutilized (see Appendix 1), with any service thatoperated at Levels 2, 3 or 4 included. Therefore,according to the APCA classification, the minimumservice package that met the inclusion criteria wasuse of health care professionals as well ascommunity health workers, and delivery of clinicaland supportive opportunistic infection management,and at least Step 1 analgesics.

Recruitment and data collection

A comprehensive list of potential palliative careservice providers was compiled from:

The APCA contact list.

The International Observatory, University of Lancaster.

USG representatives and their partners.

The Hospice Africa Uganda Distance LearningDiploma and other contacts.

University of Cape Town MSc in Palliative Care.

Mildmay Uganda contacts from their training courses.

Further contacts proposed by the project’sSteering Group members.

All services identified as meeting the study inclusion criteria were contacted initially by email.The questionnaire was formatted electronically andattached to the mailing. Contact details wereidentified for services without electronic contactdetails and these were telephoned. Hard copies wereprinted and posted to those without access to emailfacilities, and hard copies delivered by hand to thoseservices that were visited by the APCA team duringthe period of data collection.

The INCB competent authorities were identifiedthrough each country’s Department of Health andcontacted by telephone to ask for participation.

Study Aim Methods


Where telephone appointments were refused, thesurvey was sent electronically for self-completion.

Reminder emails and telephone calls were made tonon-responders periodically throughout the datacollection period, which ran for a period of 8 monthsfrom August 2005-March 2006.

Survey items

For the provider survey, the items addressed theiroperational definition of palliative care, servicecomponents and activity, ARV use, health careprofessional staffing, analgesia and symptom control prescribing and dispensing, the nationallegislative framework for opioid use, and challengesto opioid provision.

INCB competent authorities questions investigatedopioid availability, essential drug lists, legislativerestrictions, and current challenges.

Data processing and analysis

Data were entered into SPSS V.12® for cleaning,checking and analysis. To ensure the anonymity andconfidentiality of responding services, the codeddata was subjected to restricted access; completedquestionnaires were stored in a secure location.

The inputted data were subjected to profilingdescriptive statistics, and inferential statistics, inparticular, the Chi-square (x2) test for categoricaldata, and the t-test and the ANOVA for continuousdata to determine statistically significant differences.Where open-ended questions had been asked, post-hoc coding frames were developed to presentdata thematically.

Palliative care sites

Site sample characteristics Sixty-two sites participated, a response rate of 61%,with responses broken down by country as follows:

Table 1 Country of respondents

Frequency Percent

Botswana 1 1.6Cote d/Voire 1 1.6Ethiopia 1 1.6Kenya 6 9.7Mozambique 1 1.6Namibia 1 1.6Nigeria 3 4.8Rwanda 1 1.6South Africa 27 43.5Tanzania 4 6.5Uganda 8 12.9Zambia 8 12.9

TOTAL 62 100

The sites categorized themselves as either 1) a palliative care-only service (e.g. Hospice), 2) a non-governmental organisation (NGO) offering anumber of services including palliative care (i.e.integrated care), 3) or as a Governmental service(e.g. Hospital or clinic). In addition, they were askedto list the main service components that theyprovide, which are presented in Table 2 overleafaccording to category of service. In addition,participants described their sites of care (Table 3).

Responding sites were required to categorisethemselves as 1 of the following:

1) A palliative care-only service – These servicescan be characterized as providing solelyspecialist palliative care. The most commonexample of this is the Hospice (which mayprovide home, daycare and inpatient care),although there are other specialist palliativecare teams, for example those based inhospitals offering consultancy.

2) An NGO offering a number of services includingpalliative care – These services can becharacterized as providing a range of HIV careservices of which one is palliative care althoughthis is usually integrated throughout the

Results


services offered. Therefore, the service is likelyto offer care from the point of diagnosis.

3) A governmental service – These services can becharacterized as primary or secondary and formpart of the state facility network.

Table 2 Components of care described by sites

Results


Category of site:

Number of services in category

Service components (no. of times mentioned)

Palliative care only (e.g. Hospice)

n=22 (35.5%)

Bereavement counseling 11

Counseling 5

Family/communityeducation 5

Family planning 0

Family support 4

Food parcels & grants 6

HIV testing 1

Hospice mentoring 1

Income generation 1

Nutrition support 0

Orphan care 9

Pain & symptom control 4

Palliative care advocacy 5

Primary prevention 1

Professional Education & Training 10

Psychosocial support 3

Rehabilitation 1

Resource centre 1

Respite 1

Social work 2

Spiritual care 4

Terminal care 3

Non-Governmental careprovider offering morethan palliative care

n=35 (56.4%)


Counseling 14


Family planning 1

Family support 1


HIV testing 9

Hospice mentoring 0

Income generation 6

Nutrition support 5

Orphan care 15






Rehabilitation 1

Resource centre 0

Respite 2

Social work 4

Spiritual care 3

Terminal care 1

Government servicefacility (e.g. Govt.hospital/clinic)

n=5 (8.1%)


Counseling 2


Family planning 0

Family support 0


HIV testing 0

Hospice mentoring 0

Income generation 0

Nutrition support 0

Orphan care 0






Rehabilitation 0

Resource centre 0

Respite 0

Social work 0

Spiritual care 1

Terminal care 0

All sites reported that they concurred with the WHO definition of palliative care, with none offering a deviation or adaptation. The data in Table 2 demonstrate different foci between theservice models:

Palliative care-only services (e.g. hospices) moreoften sited a focus on bereavement counseling,family support, spiritual care, professionaleducation and advocacy.

Integrated NGOs more often described their focuson general counseling, family/communityeducation, food parcels/grants/incomegeneration, HIV prevention and testing.

Government hospital services described servicecomponents of pain and symptom control inaddition to screening, medical, and surgical input. However, there were only five services inthis category.

Table 3 Sites of care

While the palliative-only services and integratedNGO’s were broadly similar in the sites of careprovided, the government facilities appeared to beless likely to provide home care, although the smallnumbers prevent statistical testing.

Disease groupings served and antiretroviraltherapy provision

There were observed differences in the proportionsof each category of site with respect to the diseasegroup served and provision of ART (Table 4). The majority of each service type provided care forboth HIV and cancer, and none provided care forcancer patients alone. A similar proportion ofpalliative-only and integrated services were unableto provide ART, either in-house or from other local agencies.

Excluding government facilities due to the lownumber of cells, a chi-square was not significantwhen testing for a difference in the availability ofART between palliative-only and NGO integratedservices. However, it is notable that only 11 serviceswere ART providers, and 5 had no local access at all.It is a strength that the majority (40) sites had localaccess, but it is unclear from the remit of this studywhether ART sites request palliative care support forthose initiating and maintaining therapy.


Sites of careInpatient care Home careDay careHospital consultancyOutpatient care


N=7 (31.8%)N=21 (95.5%)N=16 (72.7%)N=15 (68.2%)N=13 (59.1%)

Non-Governmental careprovider offering morethan palliative care

N=18 (51.4%)N=33 (94.3%)N=22 (62.9%)N=16 (45.7%)N=22 (62.9%)

Government servicefacility (e.g. govt.hospital/clinic)

N=5 (100%)N=1 (20%)N=4 (80%)N=5 (100%)N=5 (100%)

Table 4 Disease groupings and antiretroviral therapy

Table 5 Number of patients seen per year

** Significant at the 0.01 level*** Significant at the 0.001 level

Results


Diseases cared forCancer only HIV onlyHIV and cancer

ART availabilityWe provide ART

We don’t provide ARTbut work with providersto gain access for pts

We don’t provide ARThave no access to other providers


0N=1 (4.5%)N=21 (95.5%)

N=3 (13.6%)

N=17 (77.3%)

N=2 (9.1%)

Non-governmental careprovider offering morethan palliative care

0N=2 (5.7%)N=33 (94.3%)

N=8 (22.9%)

N=23 (65.7%)

N=3 (8.6%)

Government servicefacility (e.g. govt.hospital/clinic)

0N=0 (4.8%)N=5 (95.2%)

N=1 (25.0%)

N=2 (50.0%)

N=1 (25%)

No. of patientscared for per year

Adults

Children

Proportion ofpatients at anytime prescribedopioids

Adults

Children


Mean (SD)

985 (1150)

83 (126)

67% (32)

47% (45)

NGO offering morethan palliative care

Mean (SD)

1593 (2076)

368 (620)

24% (33)

11% (20)

Governmentfacility (e.g. govt.hospital/clinic)

Mean (SD)

2705 (1900)

450 (87)

35% (35)

20% (22)

ANOVA: F=1.878, p=0.164ANOVA: F=2.521, p=0.091

ANOVA: F=8.619, p=0.001***ANOVA:F=5.073, p=0.012**

Number of adult and child patients seen

Table 5 below demonstrates that palliative care-only services provide care for a statistically smaller numberof patients per year than either integrated NGOs or governmental facilities, and that both their adult andchild patients are statistically significantly more likely to be prescribed opioids at any point under care.

Clinical staff on service

The clinical staff mix for each service category isdescribed in Table 6. To statistically compare thestaff mix, the governmental services were excludeddue to the low number of sites (i.e. N=5).

Interestingly, although the palliative-only servicessaw fewer patients (Table 5), they did not havesignificantly fewer clinical staff (no tests forcomparison of means were significant for each of the staff levels). This reflects the nature of multi-dimensional and holistic specialist care, which hasbeen shown to offer greater time per patient andfamily and is reflected in the data in Table 2, whichshows a greater focus on bereavement counseling,family support, spiritual care and education.

When the proportion of each grade of clinical staff able to prescribe opioids was compared(excluding Government facilities), there was nosignificant difference between palliative-only andintegrated services.

When the proportion of each grade of clinical stafftrained in palliative care was compared, it was foundthat palliative-only services had a significantlygreater proportion of trained nurses (68% v 45%,t=2.147 p=0.037) compared to integrated services.Therefore, comparing palliative-only to integratedservices, staff numbers and prescribing ability do notdiffer, although the proportion of nurses trained inpalliative care is higher, fewer patients are seen, andthey are more likely to be prescribed opioids in thepalliative-only services.

Table 6 Clinical staff mix and opioid-prescribing staff

A= Mean number of staff (range)B= Mean number able to prescribeC= Mean number trained in palliative care


Clinical staff:

Palliative care only(e.g. Hospice)

NGO offering morethan palliative care

Government facility(e.g. hospital/clinic)

Nurse

A B C

8.25 1.65 5.83(1-33)(0-17) (0-33)

11.53 0.45 3.53(1-110)(0-4) (0-38)

7.0 0.60 1.0(4-10) (0-2) (0-2)

Medical Officer

A B C

1.64 2.23 1.46(0-8) (0-11) (0-11)

1.33 1.30 0.70(0-13)(0-13) (0-13)

3.75 3.75 1.67(2-5) (2-5) (0-3)

Doctor

A B C

1.47 1.44 1.19(0-5) (0-5) (0-5)

0.94 0.61 0.33(0-6) (0-2) (0-2)

3.33 3.33 0.33(0-5) (0-5) (0-1)

Clinical Officer

A B C

0.73 0.44 0.50(0-3) (0-2) (0-2)

0.85 0.33 0.33(0-4) (0-4) (0-3)

1.0 1.0 0.67(0-2) (0-2) (0-1)

Pain and symptom control prescribing and dispensing

Thirty-six sites (58.1%) were currently dispensingopioids, and they were dispensed in the followingformulations: liquid (oral) n=29 (46.8%), tabletsn=20 (32.3%), injectable n=17 (27.4%). 1

The specific drugs prescribed for each step of theWHO ladder are described in Table 7. The number oftimes each drug was mentioned is listed after eachdrug name.

Table 7 Analgesics prescribed, dispensed andsupply continuity

Drug name prescribed

Step 1 (non-opioid) NSAIDs 88Paracetamol 64Aspirin 22Nimesulide 4Tricyclic 3Benzodiazipine 1 Steroids 2Ciclofenal 1Buscopan 1Periactin 1Stopain 1

NO RESPONSE n=4 SERVICES

TOTAL = 188 DRUG RESPONSES

Step 2 (weak opioid) Codeine 33Dihydrocodeine 11Tramadol 14Dextropropoxyphene 6Anti-epileptics 1Co Dydramol 1Anti-depressant 1Coproxamol 1

NO RESPONSE n=19

TOTAL= 73 DRUG RESPONSES

Step 3 (strong opioid) Morphine 57Pethidine 6Fentanyl 4Duragesic 3Pethilofan 1Pentazome 1Valaron 1 Tilidine 1Methadone 1

NO RESPONSE n=19


Of the Step 1 analgesics listed, 156/180 responsesindicated that they were dispensed onsite. Forty-twoservices indicated that Step 1 analgesics wereavailable 100 % of the time, the remaining 7 rangedfrom only 10-95 % (9 missing).

Results


1 This question had a multiple answerformat, hence the responses do not add upto 100 percent.

Of the Step 2 analgesics, 52/73 drugs cited weredispensed onsite. Twenty-one services indicated that Step 2 analgesics were available 100 % of thetime, the remaining 7 ranged from only 10-75 % (15 missing).

Of the Step 3 analgesics, 45/69 drugs weredispensed onsite. Twenty-eight services indicatedthat Step 3 analgesics were available 100% of thetime, the remaining 7 ranged from only 5-90 % (8 missing).

Therefore, although the majority had access onsiteto Step 1 analgesics, fewer had access to Step 2 and3 analgesics. However, those that listed Step 2 alsowere likely to have Step 3.

For those who dispensed opioids, they wereobtained from the following sources:

Table 8 Opioid sources

Opioid Sources

Joint Central Medical Stores 9Government hospital 8Private pharmacy 7Pharmaceutical supplier 5Hospice 1Locally from pharmacy in powder form 1Manufacturers 1Cancer Institute 1Patients buy from outside hospital 1Import from UK 1Missing 1

TOTAL 36

The most common sources of opioid supply weregovernmental, i.e. via Joint/Central medical storesand government hospitals, with private pharmaciesthe next most common source.

The prescribed symptom control drugs are describedin Table 9.

Table 9 Symptom control drugs prescribed,dispensed and supply continuity

Drug name prescribed

Antiemetics Metachloperamide 43 Phenothiazines 19Haloperidol 18Cyclizine 9Promethizine 9Bonamine 1Ondansetron 2Stemetic 1Emeset 1Eyelezine 1Motilium 1Ondansetron 1Decedron 1 Maxaton 1

NO RESPONSE n=13 SITES


Management of Amitriptyline 34neuropathic pain Carbamazapine 19

Phenytoin 9Vit B 7Steroid 5 Gabapentin 4Tricyclic antidepressant 3Phenothiazine 2Morphine 2 NSAID 2 Paracetomol 1Haloperidol 1 Bamezapine 1



Anxiolytics Benzodiazapine 48Lorazepam 11Amitriptyline 5Haloperidol 4Chlorpromazine 2Phenothiazine 1




Of the antiemetics listed, 81/109 responses indicatedthat they were dispensed onsite. Seventy responsesindicated that the drug was available to bedispensed 100 % of the time, the remaining 32ranged from only 20-90 % (7 missing).

Of the agents listed for the management ofneuropathic pain, 68/90 of the cited drugs weredispensed onsite. Sixty-three responses indicatedthat neuropathic pain agents were available to bedispensed 100 % of the time, the remaining 20ranged from only 5-95 % (7 missing).

Of the anxiolytics listed, 51/71 drugs cited weredispensed onsite. Forty-one responses indicated thatanxioloytics were available 100 % of the time, theremaining 16 ranged from only 1-95 % (14 missing).

Government, country and policy context

Each respondent identified whether opioids were ontheir essential drugs list. Also they were asked todescribe the legal requirements for obtaining,producing, storing and prescribing opioids, and themain factors hampering opioid provision within theircountry (see Table 10).

The data shows that, although some countries suchas Uganda have made advances in opioid provisionin comparison to others, there is a remarkablesimilarity in the identified factors hampering opioidprovision. They can be summarized as:

SupplyE.g. stores do not stock, overly tight control,unreliable stocks, and few dispensers.

LegislationE.g. regulations requiring 7-days only forprescribing, lack of national policy on opioid use,and bureaucratic processes.

EducationE.g. existing clinicians do not know how to assessand treat pain, fear of addiction, poor patientcompliance, palliative care stresses specialty tothe point of exclusion, and doctors are lessinterested in dying patients.

PracticalCosts, storage requirements, not enoughprescribers, inadequate staff in HBC, poorinfrastructure to follow patients home, lack ofsugar for making up syrup, and short shelf-life of morphine.

There was concordance between sites with regard towhether opioids were on the country essential drugslist, with the notable exception of Zambia.

Results


Table 10 Opioids, essential drug lists and legal requirements


Bot

swan

a

Cote

d’Iv

oire

Ethi

opia

Keny

a

Moz

ambi

que

Nam

ibia

Opi

oids

on

esse

ntia

ldr

ugs

list

?

Yes

No

1 (1

00%

)0

1 (1

00%

)0

1 (1

00%

)0

06

(100

%)

1 (1

00%

)0

1 (1

00%

)0

Lega

l re

quir

emen

ts

Opi

oids

sup

plie

d by

Cen

tral

M

edic

al S

tore

s

Supp

ly, s

tock

and

dis

pens

ing

tight

ly c

ontr

olle

dO

nly

doct

ors

can

pres

crib

e, w

ith

spec

ific

pres

crip

tion

form

s an

d fo

r 7

days

No

idea

bec

ause

alt

houg

h it

is o

nes

sent

ial d

rugs

list

it is

not

ava

ilabl

ein

the

cou

ntry

A li

cens

e is

req

uire

d fo

r ha

ndlin

gdr

ugs

Onl

y ho

spic

es c

an p

urch

ase,

sto

rean

d di

spen

seM

ust

have

a s

tron

g ro

omO

rder

ed b

y do

ctor

, adm

inis

tere

d by

a r

egis

tere

d nu

rse,

che

cked

by

seco

nd n

urse

, rec

orde

d in

boo

k,lo

cked

in c

upbo

ard

Onl

y do

ctor

s ca

n pr

escr

ibe

Onl

y do

ctor

s ca

n pr

escr

ibe;

onl

yav

aila

ble

thro

ugh

hosp

ital

s

Mai

n fa

ctor

s ha

mpe

ring

op

ioid

pro

visi

on

Lack

of p

rofe

ssio

nal k

now

ledg

e of

pai

nre

lief f

or H

IV p

atie

nts

Lack

of t

rain

ing

Cent

ral M

edic

al S

tore

s do

n’t p

rovi

deor

al m

orph

ine

Logi

stic

al s

uppl

y pr

oble

ms

Lack

of p

olit

ical

will

Doc

tors

fear

of o

pioi

ds

Lack

of a

vaila

bilit

y co

untr

y-w

ide

Lack

of k

now

ledg

e of

opi

oids

Lack

of n

atio

nal p

olic

yN

on-a

vaila

bilit

y in

mos

t se

ttin

gsN

ot r

ecog

nize

d as

a n

eed

Few

dis

pens

ers

Cost

sD

octo

rs fe

ar a

ddic

tion

Scar

city

of s

uppl

yLa

ck o

f sup

ervi

sory

sta

ffLo

ng &

tir

ing

bure

aucr

atic

pro

cess

esLa

ck o

f tra

inin

g La

ck o

f sto

rage

faci

litie

s

Fear

of m

isus

eO

ver

cent

raliz

ed c

ontr

ol

Lack

of t

rain

ed m

edic

al s

taff

Pu

blic

mis

unde

rsta

ndin

g

Ora

l mor

phin

e on

esse

ntia

l dru

gs li

st?

Yes

No

1 (1

00%

)0

1 (1

00%

)0

1 (1

00%

)0

06

(100

%)

1 (1

00%

)0

01

(100

%)

Table 10 Opioids, essential drug lists and legal requirements – continued

Results


Nig

eria

Rw

anda

Sout

h A

fric

a

Tanz

ania

Opi

oids

on

esse

ntia

ldr

ugs

list

?

Yes

No

2(66

.7%

)1(

33.3

%)

01(

100%

)

24(8

8.9%

)D

K 3(

11.1

%)

1 (2

5%)

3 (7

5%)

Lega

l re

quir

emen

ts

Curr

ent

gove

rnm

ent

emba

rgo

on u

se

Non

e ye

t

Nee

d a

disp

ensi

ng li

cens

eSt

rong

opi

oids

on

nam

ed p

atie

ntba

sis

only

from

lice

nsed

pha

rmac

ist

Onl

y do

ctor

s ca

n pr

escr

ibe

Cons

tant

eva

luat

ion

of e

ffec

tD

aily

cou

nt o

f loc

ked

stor

esN

o N

GO

/CB

O a

llow

ed t

o st

ore,

hosp

ital

dis

pens

esPr

escr

ipti

on n

ot r

epea

tabl

e O

btai

n fr

om a

reg

iste

red

phar

mac

y St

ore

behi

nd 2

lock

s2

nurs

es w

itne

ss d

ispe

nsin

gSt

reng

th fr

eque

ncy

and

rout

e st

ated

in w

ords

and

figu

res

Lack

of n

atio

nal a

vaila

bilit

y D

iffic

ulti

es in

mee

ting

gov

ernm

ent

requ

irem

ents

Mai

n fa

ctor

s ha

mpe

ring

op

ioid

pro

visi

on

Lack

of s

taff

and

faci

litie

sLa

ck o

f sup

ply

Legi

slat

ion

Fear

of a

ddic

tion

Lack

of t

rain

ing

prog

ram

s

Palli

ativ

e Ca

re N

atio

nal A

ssoc

iatio

n is

new

ly fo

rmed

N

o na

tiona

l pol

icy

Lack

of p

rogr

ams

Pres

crib

ing

rest

rictio

nsAv

aila

bilit

yCo

stCu

ltura

l acc

epta

nce

of p

ain

Dis

tanc

e fr

om s

uppl

iers

Hea

lth c

are

staf

f lac

k co

nfid

ence

Igno

ranc

e of

pai

n in

HIV

Poor

clin

ical

trai

ning

Lack

ing

full

time

pres

crib

erM

orph

ine

myt

hsSu

stai

nabi

lity

of s

uppl

y La

ck o

f pol

itica

l sup

port

La

ck o

f doc

tor p

rese

nce

in H

BC

Stor

age

diffi

culti

es

Lack

of k

now

ledg

e of

pai

n la

dder

Resp

irato

ry d

epre

ssio

n fe

ars

Poor

pai

n as

sess

men

t wor

kPo

or p

atie

nt c

ompl

ianc

eH

IV c

ompl

icat

ions

(e.g

. vom

iting

)

Lack

of k

now

ledg

e an

d sk

ills

Lack

of p

lace

s fo

r mak

ing

up

pow

dere

d m

orph

ine

Acce

ssFe

ars

Lack

of s

uppl

iers

/dis

pens

ers

Lack

of b

urea

ucra

tic s

uppo

rtPa

in a

sses

smen

t ski

ll pr

oble

ms

Lack

of c

linic

al w

ill a

nd s

uppo

rt

Lack

of e

duca

tion

oppo

rtun

ities

Lack

of k

now

ledg

e of

effe

ctiv

enes

s

Ora

l mor

phin

e on

esse

ntia

l dru

gs li

st?

Yes

No

01

(100

%)

01

(100

%)

25(9

2.6%

)D

K 1(

3.7%

)

1 D

K3

(75%

)

Table 10 Opioids, essential drug lists and legal requirements – continued


Uga

nda

Zam

bia

Opi

oids

on

esse

ntia

ldr

ugs

list

?

Yes

No

8(10

0%)

0

3(37

.5%

)1(

12.5

%)

DK

4(50

%)

Lega

l re

quir

emen

ts

Regi

ster

ed p

harm

acy

adhe

ring

to

Clas

s A

pol

icy

inc

pres

crib

ing,

phar

mac

y &

war

d ro

unds

, sto

rage

Regi

ster

wit

h N

atio

nal D

rugs

Aut

hori

ty

Mus

t ha

ve le

tter

by

med

ical

supe

rint

ende

nt/p

harm

acis

t to

col

lect

wit

h w

ritt

en a

utho

rity

B

e pa

rty

to in

tern

al c

onve

ntio

n B

e re

gist

ered

wit

h m

edic

al c

ounc

il to

pre

scri

beD

uplic

ate

pres

crip

tion

wit

hpa

tien

t/ca

rer

sign

atur

eD

oubl

e lo

cked

cup

boar

dKe

ep r

ecor

d of

sto

ckN

eed

licen

se t

o pr

oduc

e m

orph

ine

solu

tion

Nur

ses

can

not

pres

crib

eO

nly

hosp

ital

s ca

n st

ock

Gov

ernm

ent

med

ical

sto

res

mus

tdi

stri

bute

thr

ough

the

mai

n ho

spit

al p

harm

acy

Pres

crib

e on

ly b

y do

ctor

sU

nder

Dan

gero

us D

rugs

Act

Mai

n fa

ctor

s ha

mpe

ring

op

ioid

pro

visi

on

Nur

ses

not b

eing

abl

e to

pre

scrib

eLa

ck o

f pha

rmac

ists

D

octo

rs: u

nwill

ing,

lazy

, lac

k of

inte

rest

in d

ying

pat

ient

s Ch

roni

c la

ck o

f edu

catio

n St

aff d

o no

t wan

t to

expl

ain

and

writ

epr

oper

pre

scrip

tions

In

adeq

uate

ly tr

aine

d st

aff

Myt

hs/f

ears

Illite

racy

Poor

infr

astr

uctu

re to

follo

w

patie

nts

hom

ePo

or s

ide-

effe

ct m

onito

ring

syst

ems

Cultu

ral b

elie

fsM

orph

ine

roll-

out n

eeds

to re

ach

mor

e di

stric

ts

Nee

d m

ore

prov

ider

s of

trai

ning

U

nrel

iabl

e su

pply

(dis

trib

utio

n,st

ocki

ng, s

helf

life)

Pa

lliat

ive

care

spe

cial

ists

ove

r-em

phas

ise

the

spec

ialis

t nat

ure

and

excl

ude

othe

rs

Mor

phin

e ha

s sh

ort s

helf-

life

Gov

ernm

ent r

egul

atio

nsPo

or a

cces

sFu

nds

Legi

slat

ion/

rest

rictiv

e po

licy

Doc

tors

will

not

pre

scrib

e to

thos

e in

nee

dPr

ofes

sion

als

fear

add

ictio

nLa

ck o

f pha

rmac

ists

M

yths

Lack

of q

ualif

ied

pers

onne

lPo

or k

now

ledg

e of

opi

oid

use

in H

IVLa

ck o

f num

bers

of p

resc

riber

s La

ck o

f sug

ar fo

r mix

ing

oral

mor

phin

ePo

or p

ain

asse

ssm

ent s

kills

In

adeq

uate

dos

ing

and

not b

y th

e cl

ock

Ora

l mor

phin

e on

esse

ntia

l dru

gs li

st?

Yes

No

7(87

.5%

)m

issi

ng n

=1

2(25

%)

4(50

%)

DK

2(25

%)

Opioid training, expanding access and current challenges

Respondents indicated whether they felt there wereadequate opportunities for staff training in the useof opioids, what mechanisms they recommend forexpanding access to a greater number of HIV careproviders, and what challenges they envisage inachieving this (see Table 11).

Again, despite there being some disparity in theprogress being made between individual countrieswithin the region, there were notable similaritieswith respect to their views.

In terms of assisting more providers in accessingopioids, the suggestions were:

Advocacy: at government and public levels on the need for opioids, and on lifting restrictive legislation.

Collaboration: with prescribing doctors, across primary and secondary care, and withhospital pharmacies.

Training: in pain assessment and management, in all curricula, on palliative rather than supportive care, and a shorter course for prescribing.

Coverage: to rural and HBC services.

With respect to potential challenges to expansion,the difficulties were:

Political: achieving sufficient motivation.

Educational: challenging myths, teaching that HIVrequires Step 3 pain management, and achievingmedical cultural change.

Resources: time for doctors to prescribe, drugcosts, storage facilities, number of pharmacists,supply breaks, building up rural services, and thenumber of prescribers.

The suggested methods to overcome the challengeswere as follows:

Education: training for HCW, input in to curricula,teaching for HIV services, and developing shorter courses.

Advocacy: support through APCA, andgovernment lobbying.

Organisational: central supply of drugs andcollection points facilitated by government, and better linkages with hospices.

Resources: fund storage, increase hospicecapacity, more pharmacists, and employprofessional staff in HBC organisations.

Results


Table 11 Opportunities and challenges:expanding opioid provision


Bot

swan

a

Cote

d’Iv

oire

Ethi

opia

Keny

a

Moz

ambi

que

Nam

ibia

Ade

quat

e tr

aini

ngop

port

unit

ies?

Yes

No

01(

100%

)

01(

100%

)

1(10

0%)

0

DK

1(16

.7%

)5(

83.3

%)

1(10

0%)

0

01(

100%

)

How

can

mor

e pr

ovid

ers

acce

ss o

pioi

ds?

Wor

k w

ith

MoH

to

rais

eaw

aren

ess

and

advo

cate

for

mor

phin

e us

e, p

ublic

edu

cati

on

Adv

ocat

e fo

r us

e of

opi

oids

,in

crea

se c

ount

ry-w

ide

avai

labi

lity

Chan

ge p

resc

ribi

ng r

ules

Clos

er w

orki

ng w

ith

Ethi

opia

ndo

ctor

s

Ord

er in

opi

oids

from

cur

rent

stoc

kist

sG

over

nmen

t ch

ange

res

tric

tive

rule

sPu

rcha

se p

riva

tely

Bet

ter

trai

ning

in p

ain

asse

ssm

ent

and

man

agem

ent/

disp

ensi

ngCo

llabo

rati

on w

ith

hosp

ices

MoH

sup

port

The

indi

vidu

al is

the

onl

y w

ayto

adv

ocat

e su

cces

sful

ly a

ndch

ange

pol

icy

Nee

d do

ctor

and

nur

se t

rain

ing

to a

sses

s an

d pr

escr

ibe,

bet

ter

supe

rvis

ion

of v

olun

teer

s

Wha

t w

ould

the

ch

alle

nges

be?

Mot

ivat

ing

the

MoH

and

plan

ners

of h

ealth

car

e pr

ovis

ion

Fear

of o

pioi

d ab

use

For d

octo

rs to

com

ply

in w

orki

ngw

ith H

IV c

are

prov

ider

s. D

octo

rsdo

not

see

m to

hav

e th

e tim

e to

wor

k w

ith p

rovi

ders

and

this

stop

s pa

tient

s ge

ttin

g ef

fect

ive

pain

relie

f

Cost

Gov

ernm

ent a

ccep

tanc

e of

mor

phin

e us

e fo

r HIV

and

licen

se m

orph

ine

Inad

equa

te s

uppl

y an

d la

ck o

fpr

escr

ibin

g pe

rson

nel

Lack

of p

harm

acis

ts to

reco

nstit

ute,

and

lack

of s

tora

gefa

cilit

ies

Lack

of p

harm

acy

stoc

ksG

over

nmen

t pol

icy

Nee

d to

str

engt

hen

advo

cacy

orga

nisa

tions

Min

istr

y un

ders

tand

ing

Gov

ernm

ent p

olic

ies

How

cou

ld t

hey

be

over

com

e?

Trai

n H

CW w

ith h

elp

from

APC

A,tr

ain

mor

e nu

rses

and

doc

tors

,ed

ucat

e th

e pu

blic

on

palli

ativ

eca

re in

can

cer a

nd H

IV

Incr

ease

adv

ocac

y

Bet

ter e

duca

tion

for d

octo

rs

Cent

raliz

e pu

rcha

sed

and

colle

ctio

n po

ints

and

cos

tre

duct

ion.

Gov

ernm

ent s

houl

dfa

cilit

ate

this

pro

cess

Bet

ter s

uppl

y, tr

aini

ng, i

ncre

ase

hosp

ice

capa

city

Gov

ernm

ent l

egis

latio

n ch

ange

Advo

cacy

with

MoH

/Gov

ernm

ent

Trai

ning

for s

taff

on p

resc

ribin

g&

dis

pens

ing,

and

redu

ce to

ugh

impo

rtat

ion

rule

sB

ette

r use

of a

vaila

ble

phar

mac

ists

, mor

e st

orag

ecu

pboa

rds

Advo

cacy

is th

e on

ly w

ay

Educ

atio

n &

lobb

ying

Table 11 Opportunities and challenges:expanding opioid provision – continued

Results


Nig

eria

Rw

anda

Sout

h A

fric

aD

K 2

(7.

4%)

Ade

quat

e tr

aini

ngop

port

unit

ies?

Yes

No

03(

100%

)

01(

100%

)

14(5

1.9%

)10

(37%

)

How

can

mor

e pr

ovid

ers

acce

ss o

pioi

ds?

Bet

ter

avai

labi

lity

of o

pioi

dsIn

corp

orat

ion

into

hea

lth

wor

ker

curr

icul

umG

over

nmen

t lif

e em

barg

o

Polit

ical

will

and

adv

ocac

y

Acc

ess

to s

tate

hos

pita

lph

arm

acie

sA

dvoc

acy

Gov

ernm

ent

& p

riva

tepa

rtne

rshi

psA

vaila

bilit

y ev

en in

rur

alho

spit

als

Rest

rict

ions

lift

ed o

n on

lydo

ctor

s pr

escr

ibin

gB

ette

r lia

ison

wit

h ho

spit

als

Lobb

ying

by

PWA

sN

urse

acc

ess

to o

pioi

dsG

over

nmen

t ho

spit

als

need

bett

er r

egul

ar p

harm

acy

supp

lyB

ette

r ne

twor

king

acr

oss

prim

ary

and

seco

ndar

y ca

re

Wha

t w

ould

the

ch

alle

nges

be?

Supp

lyCo

sts

Gov

ernm

ent w

illin

gnes

s to

allo

wus

ePe

rson

nel

Prov

idin

g pa

lliat

ive

care

inho

spita

lsTh

reat

of a

buse

Bet

ter e

duca

tion

for p

atie

nts

and

care

rs o

n ad

min

istr

atio

n of

opio

ids

Bet

ter p

rofe

ssio

nal e

duca

tion

Get

opi

oids

into

clin

ics

and

HB

CAd

voca

te fo

r nur

se p

resc

ribin

gRe

duce

pro

fess

iona

l ign

oran

ceLa

ck o

f tra

ined

doc

tors

inpa

lliat

ive

care

Revi

sing

the

law

Safe

sto

rage

Pove

rty

and

geog

raph

iclim

itatio

nsPr

ofes

sion

al re

sist

ance

in u

se o

fop

ioid

sSa

fe s

tora

geCo

sts

Lack

of p

harm

acis

tsM

oH a

path

yIn

crea

se tr

aini

ng fa

cilit

ies

How

cou

ld t

hey

be

over

com

e?

Advo

cacy

, edu

catio

nG

over

nmen

t adv

ocac

yAv

aila

bilit

y in

the

dist

ricts

Trai

ning

for a

ll H

CW

Incr

ease

gov

ernm

ent f

undi

ng to

mai

ntai

n st

ocks

Wor

ksho

ps &

cap

acity

bui

ldin

g,be

tter

pol

icie

s on

pai

n co

ntro

l,nu

rsin

g lic

ense

to p

resc

ribe

Trai

ning

Polic

y ch

ange

Prof

essi

onal

edu

catio

nIn

crea

se n

umbe

r of p

harm

acis

tsto

impr

ove

supp

lyFo

cus

on h

olis

tic c

are

Invo

lvem

ent o

f rur

al c

linic

sB

ette

r fam

ily e

duca

tion

Rese

arch

to li

nk th

eory

of o

pioi

dex

pans

ion

to p

ract

ice

Table 11 Opportunities and challenges:expanding opioid provision – continued


Tanz

ania

Uga

nda

Zam

bia

Ade

quat

e tr

aini

ngop

port

unit

ies?

Yes

No

4(10

0%)

5(62

.5%

2(25

%)

2(25

%)

8(75

%)

How

can

mor

e pr

ovid

ers

acce

ss o

pioi

ds?

Get

ting

tra

inin

g in

pal

liati

vera

ther

tha

n su

ppor

tive

car

eTr

ain

in o

pioi

d us

e be

yond

canc

erRe

duce

gov

ernm

ent

rest

rict

ions

Impr

ove

netw

ork

betw

een

trai

ned

pres

crib

ers

and

HIV

care

org

anis

atio

nsG

raft

ing

palli

ativ

e ca

re o

nto

exis

ting

ser

vice

s, e

spec

ially

pain

and

sym

ptom

con

trol

Rela

x pr

escr

ibin

g re

quir

emen

tsw

itho

ut c

ompr

omis

ing

cont

rol

Non

-spe

cial

ists

sho

uld

begi

ven

a sh

orte

r co

urse

to

enab

le t

hem

to

pres

crib

eR

N o

r CO

to

atte

nd p

resc

ribi

ngco

urse

at

HA

U r

athe

r th

an o

nly

doct

ors

Liai

se w

ith

hosp

ices

Empl

oy p

erso

nnel

who

can

pres

crib

eTr

ain

HB

Cs a

nd M

oH a

ppro

veop

ioid

use

Adv

ocat

e to

Gov

ernm

ent

Trai

n cl

inic

al o

ffic

ers

and

nurs

es t

o pr

escr

ibe

as t

hey

are

clos

er t

o th

e co

mm

unit

yPo

licy

chan

geO

btai

n op

ioid

s th

roug

h pr

ivat

eim

port

er o

r th

roug

h U

nive

rsit

yte

achi

ng h

ospi

tal

Opi

oid

clin

ics

in h

ospi

tals

Wha

t w

ould

the

ch

alle

nges

be?

Fear

s of

pre

scrib

ing

and

usin

g op

ioid

sCo

sts

Hum

an re

sour

ces

MoH

/Med

ical

Sch

ools

mus

tin

clud

e in

cur

ricul

umG

over

nmen

t bur

eauc

racy

Redu

ctio

n of

rest

rictio

ns

Fina

nce/

cost

sRe

cord

kee

ping

Fear

of o

pioi

dsB

urea

ucra

cy in

bei

ng a

pro

vide

rH

avin

g en

ough

med

ical

sta

ffN

ot a

ll di

stric

ts tr

aine

d an

dse

nsiti

zed

Doc

tor r

eluc

tanc

e to

pres

crib

e/pr

escr

ibe

inco

rrec

tlyN

ot e

noug

h pr

escr

iber

sB

ette

r org

anis

atio

nal

man

agem

ent

Fear

of a

buse

Chan

ge le

gisl

atio

nTr

ain

in p

resc

ribin

g an

d pa

inm

anag

emen

tPo

or a

vaila

bilit

y of

mor

phin

epo

wde

rFu

ndin

gD

octo

rs a

re re

sist

ant t

o ch

ange

Trai

ning

cos

tsH

BC

serv

ices

som

etim

es la

ckhe

alth

car

e st

aff

Gov

ernm

ent p

ersu

asio

n

How

cou

ld t

hey

be

over

com

e?

Advo

cacy

and

ext

erna

las

sist

ance

Sens

itize

pol

icy

mak

ers

Med

ical

sch

ools

sca

le-u

ptr

aini

ngTr

aini

ng fo

r HIV

car

e pr

ovid

ers

on p

allia

tive

care

Gov

ernm

ent r

ecog

nitio

n of

palli

ativ

e ca

re tr

aini

ng c

ours

es

Dev

elop

sho

rter

trai

ning

cou

rses

Har

mon

ize

exis

ting

trai

ning

toin

corp

orat

e m

orph

ine

Educ

atio

nAd

voca

cyCu

rren

t cen

ters

take

resp

onsi

bilit

y fo

r rol

ling

out i

nto

dist

ricts

Link

ages

with

hos

pice

sEx

pand

bas

e of

pre

scrib

ers

i.e.

non-

doct

ors

Inst

itutio

ns g

iven

sto

rage

faci

litie

sSe

nsiti

ze p

olic

e an

d go

vern

men

tU

nder

stan

d th

e tr

aini

ng n

eeds

Advo

cacy

to G

over

nmen

tPo

licy

chan

geSo

urci

ng fu

ndin

g fo

r opi

oids

Trai

n no

n-pr

ofes

sion

al s

taff

Enco

urag

e H

BC

serv

ices

to h

ave

prof

essi

onal

sta

ffIn

crea

se o

pioi

d su

pply

Wea

k op

ioid

s sh

ould

be

avai

labl

e to

clin

ical

offic

ers/

nurs

es w

ho a

re tr

aine

din

opi

oid

pres

crib

ing

with

out

need

for a

n on

-site

pha

rmac

ist

Current challenges: purchasing, producing,dispensing and prescribing

Finally, respondents described current challenges in the purchasing, production, dispensing andprescribing or opioids (see Table 12).

The Purchasing issues can be summarized as:

Overwhelming cost due to new taxes; expensive and scarce single source of supply;lack of funds; unreliable supply; distances; too many restrictions.

The Producing issues can be summarized as:

None produced due to government embargo; hard to produce and source enough due toexpanding patient base; lack of pharmacists;limits on sugar supply to make up syrup.

The Dispensing issues can be summarized as:

Restrictions to hospitals and hospices mean patients do not get access; massive delays between scripts and dispensing; lack of pharmacists.

The Prescribing issues can be summarized as:

Being the sole prescriber; heavy restrictions;professionals do not know how to prescribe; lack of education; refusal to prescribe forchildren; lack of rural staff; gross underuse due to fears and myths.

Results


Table 12 Current issues in opioid provision


Bot

swan

a

Cote

d/V

oire

Ethi

opia

Keny

a

Moz

ambi

que

Nam

ibia

Nig

eria

Rw

anda

Non

e1(

100%

)

1(10

0%)

1(10

0%)

2/6(

33%

)

1(10

0%)

– 1/3(

33%

)

–

Issu

es

Cost

has

alm

ost

doub

led

due

to n

ew t

ax la

ws

on d

rugs

Dru

g co

mpa

nies

do n

ot s

tock

enou

gh o

pioi

ds

–

Can

only

be

purc

hase

d at

Nat

iona

l D

rug

Stor

eSc

arce

and

expe

nsiv

e

–

Non

e0(

0%)

1(10

0%)

1(10

0%)

1/6(

16.7

%)

1(10

0%)

– 1/3(

33%

)

–

Issu

esN

one

is p

rodu

ced

in B

otsw

ana

Har

d to

sou

rce

enou

gh t

o pr

ovid

efo

r ex

pand

ing

pati

ent

base

due

to G

over

nmen

tre

stri

ctio

ns o

nim

port

N

ot a

ll co

mpa

nies

can

prod

uce

Not

sur

e if

they

have

the

cond

itio

ns t

opr

oduc

e

–

Not

pro

duce

d in

coun

try

Onl

y pr

oduc

edce

ntra

lly

–

Pur

chas

ing

Non

e1(

100%

)

0(0%

)

1(10

0%)

3/6(

50%

)

1(10

0%)

– 2/3(

66.7

%)

–

Issu

es

Mos

tly

disp

ense

din

hos

pita

ls a

ndho

spic

es s

o m

any

pati

ents

do

not

get

acce

ss

–

Onl

y do

ctor

s ca

npr

escr

ibe

–

Dis

pens

ing

Prod

ucin

g

Non

e1

(100

%)

0 (0

%)

N/A

3/6

(50%

)

1 (1

00%

)

– 3/3

(100

%)

–

Issu

es

Onl

y do

ctor

s ca

npr

escr

ibe

and

for

7 da

ys a

t a

tim

e

Rest

rict

ions

on

pres

crib

ing

Mos

tpr

ofes

sion

als

dono

t kn

ow h

ow t

opr

escr

ibe

Pres

crib

ing

Table 12 Current issues in opioid provision – continued

Results


Sout

h A

fric

a

Tanz

ania

Uga

nda

Zam

bia

Non

e12

/27

(44.

4%)

4(10

0%)

6(75

%)

3/8(

37.5

%)

Issu

esCa

nnot

pur

chas

ew

itho

utpr

escr

ipti

on

Not

eno

ugh

fund

ing

topu

rcha

seB

lack

pat

ient

sca

nnot

sou

rce

mor

phin

e ou

tsid

eth

e pr

ivat

esy

stem

Esse

ntia

l dru

gsno

t al

way

sav

aila

ble

at p

ublic

heal

th fa

cilit

ies

Lack

of d

octo

rsD

ista

nce

todi

spen

sers

Dru

gs r

un o

ut o

fst

ock

Cost

Des

pite

us

requ

esti

ngqu

arte

rly

inad

vanc

e, M

edic

alSt

ores

do

not

orde

r in

tim

e

Too

man

yre

stri

ctio

ns

Non

e12

/27

(44.

4%)

2(50

%)

4(50

%)

2/8(

25%

)

Issu

esFe

w q

ualif

ied

phar

mac

ists

Lack

of d

octo

rs t

opr

escr

ibe

New

reg

ulat

ions

are

limit

ing

spre

ad o

f opi

oids

acro

ss t

heco

untr

y La

ck o

fpr

escr

iber

s in

rura

l are

as

Cost

No

loca

lpr

oduc

tion

-

Relia

nce

on s

ugar

to m

ake

pow

der

into

syr

upLi

mit

edph

arm

aceu

tica

lin

dust

ry

Pur

chas

ing

Non

e9/

27(3

3.3%

)

2(50

%)

8(10

0%)

3/8(

37.5

%)

Issu

esN

eed

disp

ensi

nglic

ense

N

eed

corr

ect

scri

pts

from

doct

orCa

n ta

ke 3

-wee

kde

lay

betw

een

scri

pt w

riti

ng a

ndm

orph

ine

deliv

ery

from

dis

pens

ary

NG

O s

tatu

sde

bars

from

disp

ensi

ngN

o di

spen

sing

from

pre

mis

es

Too

few

phar

mac

ists

Staf

f ina

dequ

atel

ytr

aine

d in

pai

nas

sess

men

t an

dm

anag

emen

t

Rest

rict

ions

to

hosp

ital

s on

ly

Onl

y av

aila

ble

inm

ajor

hos

pita

lsSt

orag

ere

stri

ctio

ns li

mit

acce

ss

Dis

pens

ing

Prod

ucin

g

Non

e13

/27

(48.

1%)

2(50

%)

7/8(

87.5

%)

2/8(

25%

)

Issu

esTa

kes

too

long

to

get

mor

phin

e,es

peci

ally

in r

ural

area

s D

octo

rs n

eed

educ

atio

n in

mor

phin

e us

e D

octo

rs r

efus

e to

pres

crib

em

orph

ine

for

child

ren

Pati

ent/

fam

ilyfe

ar o

f add

icti

on

No

licen

seRu

ral a

reas

do

not

have

doc

tor

avai

labl

e to

wri

tesc

ript

sN

urse

s ne

ed t

o be

able

to

pres

crib

e

Too

few

pres

crib

ers

Onl

y do

ctor

s, a

ndno

t al

l doc

tors

,kn

ow h

ow t

opr

escr

ibe

I am

the

onl

ype

rson

abl

e to

pres

crib

e!

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ssly

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e to

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s of

add

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onCa

n no

t pr

escr

ibe

outs

ide

hosp

ital

s

Pres

crib

ing

INCB competent authorities data Respondents

Despite significant efforts over a period of eightmonths, five interviews were achieved. This was due, in large part, to considerable confusion withinMinistries as to whom the appropriate person wasand a lack of accurate contact details for theidentified individual.

The interviews that were achieved were:

Ethiopia

Kenya

Namibia

Tanzania

Uganda

Current opioid supply and regulatory system

All five stated that opioids were currently on theirrespective country’s essential drugs list andavailable in country for pain relief.

In Table 13, it is notable that the majority of INCBcompetent authorities were satisfied with thefunctioning of the current regulatory system,contrary to provider data. INCB competentauthorities also felt (with the exception of Uganda)that there were currently adequate numbers ofopioid providers. An important finding from theseinterviews is that INCB competent authorities feelthat they may not be able to offer adequateregulation and monitoring for increased numbers ofproviders, and that they question the skills of thosealready prescribing opioids.


Table 13 INCB competent authorities views: current opioid supply and regulation

Results


Keny

a

Ethi

opia

Tanz

ania

Uga

nda

Nam

ibia

Due

to

the

puni

tive

natu

re o

f the

199

4A

ct, m

ost

prov

ider

sha

ve s

hied

aw

ay fr

omse

lling

opi

oids

.

The

fear

s ar

ound

pres

crib

ing

may

be

due

to t

he r

egul

atio

n.Th

ere

is a

lack

of

awar

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s of

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opri

ate

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e am

ong

thos

e ab

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be.

Prof

essi

onal

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of

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scri

bing

.

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port

atio

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ispe

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acie

s an

dhe

alth

car

e fa

cilit

ies

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sto

ckin

g op

ioid

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quir

emen

ts. T

oo fe

wpr

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s.

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ilabi

lity

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be a

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odi

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se.

App

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licen

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om t

he P

harm

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&Po

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and

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gally

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.

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ster

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rug

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ent

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ss.

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Yes

Yes

Yes

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Yes

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C

Yes

Yes

Yes

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No

Are

the

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Doe

s th

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tory

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s B

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ntly

.

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gula

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lem

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The

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l but

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tion,

and

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sam

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prov

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Too

few

per

sonn

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cond

uct s

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ys a

ndm

onito

ring

for t

hew

hole

cou

ntry

.

Lack

of s

taff

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gula

te! T

he p

owde

rit

is m

ade

from

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dule

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rug,

als

one

ed c

ompo

undi

ngeq

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ent e

tc. S

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life

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nly

1 m

onth

.

We

need

to im

prov

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e qu

ality

of

pres

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pers

onne

lth

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h tr

aini

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otin

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se th

e nu

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rs.

Bet

ter t

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ofth

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topr

escr

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regu

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t, re

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prov

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ion

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ease

med

ical

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ndm

otiv

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to b

e ac

tive

in a

llar

eas.

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e tr

aini

ng s

oan

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ical

staf

f are

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t to

pres

crib

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If nu

rses

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e to

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crib

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e’d

need

to

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nge

curr

ent

legi

slat

ion,

exp

and

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, and

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ove

mon

itorin

g.

Dif

ficu

ltie

s &

chal

leng

es t

ore

gula

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sy

stem

Syst

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need

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o.

of p

rovi

ders

Comparison to site responses

The data from INCB competent authorities and thedata from care sites were integrated and comparedto appraise the congruity of their perspectives onopioid availability.

It is noteworthy in Table 14 that although theEthiopian INCB competent authority reported thatopioids were available in the country, the respondentsaid that while they were on the essential drugs list,they were unavailable anywhere. In every countrywithout exception, INCB competent authorities citedspecific opioids that they believed to be available in-country that were never cited by any servicewithin that country.

• Noted by INCB comp auth as present in country ✓ Mentioned by at least one service in country ✗ Not mentioned by any service


Morphine Pethadine Codeine Tramadol Nitrazepam Methadone Fentanyl Tilidine Etorphine

Kenya • ✓ • ✗ • ✓ • ✗ • ✓Ethiopia • ✗ • ✗ • ✗Tanzania • ✓ ✓ • ✓ ✓ • ✗Uganda • ✓ • ✓ ✓ • ✗Namibia • ✗ • ✗ • ✗ • ✗ • ✗ • ✗

Table 14 Comparison of INCB competent authorities and provider data: opioid availability

Definitions and components of palliative care

Palliative care is delivered in an increasingly diverserange of settings, with the potential for generalistpalliative care to be rolled-out more easily than thespecialist care which offers expert management ofcomplex cases. Our data offer two important andfundamental opportunities for opioid expansion forpeople living with HIV in Sub Saharan Africa.

Firstly, all the respondents reported that they definepalliative care in exactly the same way as the WHO2002 definition. As a common thread throughout thedata is the need for education and collaboration toincrease opioid access, the united acceptance of theWHO definition will make the roll-out, monitoringand provision of opioids to common objectiveseasier to achieve. As the PEPFAR legislation hasbeen designed to operationalize this definition, inparticular the WHO pain ladder, then scale-upstrategies can more easily embrace the range ofservices with the knowledge that a commondefinition is shared.

Second, the range of services offered by the 3categories of provider demonstrate clear differencesin focus, with palliative-only services stressingbereavement counseling, family support, spiritualcare, professional education and advocacy, whilemore integrated NGOs offer general counseling,family/community education, food parcels/grants/income generation, HIV prevention andtesting. This probably reflects the needs of thepatient population referred to these types ofprovider, suggesting that the palliative-only serviceprovides a more end-of–life focus (i.e. hospice) whilethe integrated service cares for a wider disease-spectrum population. However, it is not possible forpalliative-only services to care for all dying patients,and integrated services should be able to offeradvanced disease care (including opioids) for thosewho need it, and further research is required to mapreferral criteria for the management of complexcases which may require a more specialist palliativecare setting.

Antiretroviral therapy

Of the sample, six had no local access to ART fortheir patients, although all were PEPFAR countries.ART is an essential complement of palliative care,

even for those with late-stage infection and aninadequate response to therapy (14). While it is notnecessary for all sites to provide ART, it should beavailable for co-management between providers.Also, all sites should have access to the full range ofpain and symptom-controlling drugs and trainedstaff to provide skills in managing the side effects oftherapy and immune reconstitution events amongART-referred patients, as the majority of respondentsdid not provide ART for their patients but workedwith ART sites to gain access.

Patient population

The data show that the palliative-only services seesignificantly fewer patients, and that they are morelikely to be prescribed opioids while on service. This is unsurprising as specialist palliative careusually offers more detailed assessments, offerslonger contact per consultation, and if more patientsare prescribed opioids then closer monitoring isrequired. Also, as these patients are likely to benearer to the end of life, their needs can be expectedto be greater, as are those of the family. Therefore, it is essential to recognize that the smaller number of patients, while not reflected in smaller staffnumbers, is likely to be a function of the type of care provided and patient need, a view supported by the data describing service components and the proportion of patients prescribed opioids.However, the possibility that the data might suggestunder-use of opioids in integrated services cannot be discounted, particularly as these staff aresignificantly less likely to be palliative-trained.

Staff skills

While the number of staff did not differ in line withthe site patient population size, the proportion ofpalliative-trained staff was significantly lower for the integrated NGOs. While it is expected that anintegrated service has more components of care and so fewer palliative-specific staff, it is importantthat all staff can recognize palliative need and canprovide generalist palliative care during their patientinteraction, and refer appropriately, and so werecommend that all staff in an integrated servicehave at least some basic training. The number ofstaff able to prescribe did not differ betweenservices, which suggests that there are adequatenumbers of staff on service in integrated serviceswho could prescribe if they received adequatetraining in the assessment and management of pain.

Discussion


Analgesia and symptom controlling drugavailability

Firstly, looking at Step 1 analgesics, it is concerningthat even among these participating a significantnumber had problems in accessing Step 1analgesics. These are the least complex in terms of legislative bureaucracy and control, and sochallenges here suggest an inability to even begin to use the WHO ladder with certainty of continuity.Also, a small number of services were unable todispense Step 1 analgesics, and while it is notnecessary for all services to dispense Steps 2 and 3 (e.g. South African hospices tend not to dispenseopioids), the prevalence of pain and lack of policyrestraints suggest that any site should be able toprovide Step 1 analgesia.

Looking at Step 2 and 3 analgesics, both weredispensed by fewer sites and supply was anincreasing issue. Less than half the sites werecurrently prescribing opioids of any strength, andthose that did were mainly relying on Joint MedicalStores and Government Hospital pharmacies. Clearly,while reliance is on these sources, any strategy toincrease the number of providers must take accountof how best to assist these centers in offeringcontinuing supply. The data identified a number ofalternative methods, such as direct importation fromthe UK, and these centers should be investigatedmore closely in the search for reliable mechanisms of supply.

Neuropathic pain is a common, distressing andchallenging presentation among people with HIVdisease, and can be a result of the underlyingdisease or a side-effect of antiretroviral therapy. The most effective drugs, such as Gabapentin, areexpensive, and this is reflected in the low number of services that cited its use. Antiemetics andanxiolytics are also essential drugs in themanagement of patients with HIV disease, andfurther problems were identified with these both inavailability and supply continuity. Although opioidsoften have an anxiolytic effect, they should alwaysbe available for patients with advanced disease.Nausea and vomiting are common side effects ofboth opioid and ART use, and so antiemetics shouldalways be available. The data demonstrate somesystemic problems that suggest that opioid supplyissues are not solely related to this class of drugsbut are compounded by the legislative framework,

and that less controlled drugs such as antiemeticsexperience similar problems. Therefore, whilelobbying for opioid availability is a clear andessential task, there are issues beyond this thatspeak to drug supplies across the formularyspectrum.

The service perspective on opioidaccess: factors hampering provision,expanding access and facing challenges

The sample represents diverse countries in terms ofprogress towards opioid availability for a true publichealth approach to palliative care provision, from the well-recognized Ugandan experience, thegovernmental/hospice links across South Africa, to the challenges of Ethiopia. However, it is notablethat despite these significant differences, the dataoffers common themes to guide a strategic approachto opioid scale-up. To aid identification of feasibleand appropriate strategies for opioid expansion, the data have been integrated from Tables 10-12demonstrating the commonalities across themes and countries (See Figure 2).


Figure 2 Challenges and responses: data integration

Factors hampering roll out & challenges

PoliticalStore supplies are unreliable Lack of political willMotivating MoH Lack of national policyBureaucracy

ClinicalProfessionals lack knowledge on HIV pain,assessment, management Professionals fear opioidsLack of professional trainingLack of clinician interest in the dying Public opioid fear

Site-specificLack of storage facilitiesRural distance from suppliers Specialist palliative care excludes otherorganisations

ResourcesLack of prescribers and pharmacistsCostsLack of facilities to follow patients home

Suggested responses & solutions to challenges

PoliticalAdvocacy to MoH to raise awareness Public educationChange prescribing rules PWA lobbyingGovernment take responsibility for centralpurchase & distributionLicense nurses to prescribe Legislative change

ClinicalFocus on training palliative not supportive careFocus on training in opioid use in HIV not just cancerGraft onto existing providers Provide a shorter prescribing course for non-specialists Better HBC training

Site-specificCloser collaboration with doctors Improve clinical training Better clinical supervisionAccess to state pharmaciesRoll-out to rural areasImprove primary / secondary integration Improve networking with existing prescribersIncrease hospice capacityBetter pharmacy links More storage cupboards

ResourcesIdentify sources of opioid fundingMore pharmacists Evaluation of opioid expansion

Discussion


The INCB competent authorities and provider data:common goals and disparate perspectives It is very illuminating to compare the data from theprovider sample to the INCB sample. Although thiscould only be conducted for 5/12 countries, thecontrast in the data suggests some conflicting viewson the current provision of opioids.

Advocacy for greater access

A first point is that despite the need to lobby throughgovernment and achieve policy, legislative andbureaucratic change, it was extremely difficult forAPCA (the principal advocacy body in Africa) to evenidentify and then make contact with INCB competentauthorities in the majority of countries.

Second, among INCB competent authorities, themajority felt that a) the current bureaucratic processworks well and, b) that there are adequate numbersof providers currently.

Third, it is important to recognize that any expansion in opioid availability carries implicationsfor the regulatory bodies (i.e. the Ministry and INCB competent authorities), and these resourcerestrictions were noted by the respondents. There was a far from clear view that expansion was possible, with fears expressed that the currentcadre of prescribing professionals should be furthertrained and improved before more prescribers are trained. Indeed, the regulatory and legislativeframeworks were described by INCB competentauthorities as ‘enabling’, with many commentsfocusing on the weaknesses of existing prescribing staff.

However, despite these concerns, it should be noted that there were important areas of congruencebetween care sites and INCB competent authorities.These were: recognition that legislation has caused a reluctance to prescribe opioids; the need to reviewmedical training curricula; and a need for an increasein medical school intake.

Drug availability: INCB competentauthorities and site views

The availability of drugs, both opioids and othersymptom-controlling drugs, was a constant themethroughout the data. However, the integration ofdata from care sites and INCB competent authorities

highlights a disparity in the understanding of theavailability of specific drugs. Table 14 demonstratesthat in every country, the INCB competent authoritynamed a drug that was not listed by any service inthat country. It may be that the low number ofrespondents in some countries led to an under-reporting of some drugs at sites, but these siteswere identified by APCA as the most prominent andaccessible palliative care providers, and if they donot have access then this suggests under-supply.

Limitations

There are several limitations to our findings. Firstly,the lists of potential contacts may have excluded anumber of providers, but was composed of everyservice known to the funders, research centre andAPCA, and so we believe it was an inclusive andexhaustive recruitment procedure.

Secondly, significant difficulties were experienced in the data collection phases, mainly logisticalchallenges (including failing power, telecommuni-cations, lost emails and unobtainable contacts) thatmay have reduced the response rate. The significantchallenges of undertaking primary research in Africa,which are well recognized (15), were compounded byour aim of collecting data in 12 countries.

Thirdly, the sample was weighted towards SouthAfrica, and although it would be useful to comparethe findings according to country, there are currentlyinsufficient operational services to allow this. The low number of palliative care providers andpatchy coverage disallow the potential to generalizefrom a random sample, and therefore we attemptedto contact all services according to the APCAClassification (Appendix 1).

Fourthly, the focus is solely on opioids. As a definingfeature of palliative care that separates it from those services unable to control pain this is useful.However, opioids alone do not constitute a palliativecare service. It is not possible to deliver a fullinvestigation of palliative care in this study, andother data sources are available. The focus will becentral to delivering the stated outputs. A furtherexclusion is education, an important activity thatcannot be given full consideration. It is howeverincluded as a variable.

The INCB competent authorities and provider data: common goalsand disparate perspectives


Fifth, the inclusivity and thoroughness of the contact list was central to sampling and thegeneralisability of the data. We designed the list ofpotential participants in collaboration with countryrepresentatives to ensure that all relevant people are involved. We acknowledge that in South Africaopioids are “essential drugs” and as such are usuallyavailable in public health care facilities. The scope of this small-scale exercise did not allow all suchfacilities to be included and focuses instead on theperspective of palliative care services that may or may not have access to opioids.

Conclusion

A key finding from this study has been that whilethere are common issues raised by services andINCB competent authorities, it is clear that these key stakeholders have concerns regarding thepotential roll-out of opioids. A number of verypractical suggestions have been made, all of whichmust be taken into account in any strategic plan toenhance pain relief, as strategies that target changein the domains of education, resources, bureaucracy,legislation and provider sites cannot achieve thegoal in isolation.

The data suggest similar numbers of clinical staffingand different domains of care between integratedand palliative-only services, while the latter offerscare to fewer patients with a greater likelihood ofopioid use and staff who are trained in palliativecare. Each may have its merits, and further attentionshould be paid to networks of referral to ensureaccess appropriate to patient need, as well as thedevelopment and use of multi-dimensional outcome evaluations to appraise the resourceimplication costings in the light of varying outcomes.The question of education has not been addressed inthis study, and was a constant theme in discussionof solutions to opioid use. The educative role of‘specialist’ centers should not be underestimated,and evaluative studies should take account of theeducation activities and outcomes of these services.

Finally, previous work reviewing evidence andoutcomes for palliative care in Africa has identifiedthe need to balance quality and coverage. This study shows that opioid expansion needs tobalance supply and skills: there are currently notenough staff to prescribe and supply is unreliable,and any efforts to expand supply should ensure that it does not weaken current systems.

Recommendations For practitioners

1) While the presence of both specialist andintegrated centers should be encouraged, it is essential that each can offer the basicservice elements of the other when needed.Examples of this from our data are expansion of bereavement care and family support inintegrated services, and economic supportactivities in palliative-only centers. However,this expansion of core skills and servicecomponents should occur with the proviso that specialist palliative-only centers havereferral criteria and capacity to offer care formore complex cases.

2) Referral networks between ART sites andpalliative care services should ensure that notonly are patients under palliative care referredfor ART, but that mechanisms of clinical supportand consultancy are offered so that ART sitescan access palliative care as treatment isinitiated and continued.

3) With the wide range of distressing andburdensome HIV and treatment-relatedsymptoms, practitioners should remember toassess and treat the full spectrum throughoutthe disease trajectory including ART treatment.Also, any side-effects of opioids must beconstantly monitored and controlled, and drugsmade available to achieve this.

4) Where opioid access is poor, networks should be established with current hospice and governmental providers to establish routesfor dispensing.

5) Rural and HBC services should consider theirpotential routes to palliative care drugs whenarranging palliative care training for their staff,as the management of spiritual and emotionalpain cannot be achieved without themanagement of physical pain.

For educators

6) All services, whether palliative-only, integratedNGO or government facilities, must ensure thatall clinical staff are trained in palliative care to a basic agreed level. This would assist staff toassess palliative care needs, to provide general



palliative care, and be aware of when to makeappropriate referrals for specialist input.

7) Training and education providers should formcollaborative teaching activities with currentclinicians. Those in practice require ongoingprofessional education to improve the paincontrol needs of those living with HIV, and tomeet the needs of the dying.

8) Training and education providers should formcollaborative teaching activities with futureclinicians. The inclusion of palliative care inmedical school curricula should be a goal for all countries.

9) Education must take a long-term view of theprocess of teaching, and mechanisms put inplace to ensure follow-up to support theapplication of skills learned.

10) Shorter palliative care courses that focus on prescribing should be considered for current clinicians.

11) Educators need to redouble efforts to addressthe public fears of opioids. A potential means to achieve this may be through the existingsignificant global networks for HIV advocacygroups. Currently the issues of palliative careand opioid use are not championed by peopleliving with HIV/AIDS.

12) There may be educational opportunities to work with INCB competent authorities todemonstrate the successes of opioid use and the current limitations that could beaddressed. Such consultation may also offerINCB competent authorities an opportunity toshare their concerns. Interactive education and sharing of viewpoints may offer betterpotential for feasible and acceptable strategiesfor opioid expansion.

For funders

13) Funders must take account of the high burdenof pain and symptoms that affect quality of life and allocate resources to ensure that these manageable problems are adequatelycontrolled.

14) Patients should have local access toantiretroviral therapy at all services that offerpalliation whatever disease stage the servicefocuses on. Referral and co-management carepathways should be in place to ensure thateven if palliative care and therapy are notavailable at the same site, they are co-ordinated to ensure that they can beintegrated across services.

15) Currently, palliative-only services see fewerpatients. While not all people living with anincurable life-limiting disease should requirespecialist palliative care, and not all people atthe end of life should or could access hospicecare, resources are required to increase thecapacity of these institutions to enhance theireducative, advocacy and specialist role forcomplex case management.

16) Funding for clinically trained staff is essential inHBC HIV sites, as opioids cannot be utilizedwithout staff able to prescribe.

17) Funders should consider the structuralrequirements of sites, e.g. the essential currentproblems of adequate opioid storage facilitiesand pharmacy facilities, in addition to staff andtraining costs.

18) Funders should consider those analgesicsbeyond opioids, i.e. neuropathic pain agents,which are costly, but essential for pain thatcannot be controlled with opioids.

For policy makers

19) The current opioid (and non-opioid) drug supplysystems experience a number of blockages anduncertainty in supply. Any expansion willrequire identification of the strongest routes,and to strengthen these further, beforeexpanded drug supply can be achieved.

20) While there is emphasis on expanding opioidsupply, this is being pursued to enhanceadherence to the WHO pain ladder. It is clearfrom the data that this requires attention to allsteps of the ladder, including in some casesprovision of Step 1 pain-relieving drugs.


21) Policies to expand opioid access must carefully balance the need for expansion with the threat of additional pressure onunreliable current purchase, production anddispensing. Expansion should not be at the cost of reliability.

22) Any strategy for expansion must take account of the concerns of INCB competent authoritieswith respect to regulation. Advocacy andlobbying must convince this essentialstakeholder group of the feasibility ofexpansion programs, as current INCBskepticism may prove a significant barrier.

23) The synergies of strengthening supply systems for opioids can also enhance othersymptom-controlling drugs, such as antiemeticsand anxiolytics, which are also essential for this population.

24) Any strategic approach to opioid expansionmust use a multi-pronged approach takingaccount of: supply (e.g. ordering and stocking,constistency of availability), legislation (e.g. regulations on storage and prescribing),education (i.e. ensuring that opioids are usedappropriately) and practical site-specificsupport (e.g. adequate numbers of trained and able-to-prescribe staff, funds and storagefacilities). Failure to address each of these areasis unlikely to achieve sustainable success.

25) Each country should undertake a wide-rangingconsultation process to appraise its currentlegislation and identify the potential to pilot and test safe, feasible and practical legislationfor the prescribing and dispensing of opioids.

26) Policy change, across the legislative andregulatory settings, can only be achievedthrough co-ordinated advocacy that takesaccount of governmental disinterest andprofessionals’ fears of opioid use.

27) Current funding goals to increase the numbersof patients accessing palliative care should takeaccount of the current limitations on opioid useand supply, and address the likely pressure onexisting infrastructure.

28) In order to address the current weaknesses insupply, and build capacity for expansion,greater emphasis and capacity needs to beplaced on training and employing pharmacists.

For researchers

29) In the light of different models of care andnumbers of trained staff and patients seenaccording to service model, multidimensionaloutcome evaluations are required, includingmeasurement of pain and symptoms.

30) Evaluative studies should compare botheconomic costing and levels of analgesiaavailable, taking account of comparativebaseline patient need across models.

31) Referral criteria and care networks should beexamined to understand the movementbetween sites as patients move up and downthe pain ladder.

32) All strategies and programs to expand opioiduse should be evaluated to ensure that lessonscan be replicated/adapted for use in other sites.

33) Longitudinal evaluation of education should beconducted to measure practice outcomes.



We are grateful to Presidents Emergency Plan forAIDS Relief for funding this study, to the members of the US Office of the Global Co-ordinator andMembers of the USG Palliative Care TechnicalWorking Group who gave useful input and commentson protocol drafts, and to all the sites and INCBcompetent authorities that participated.

The participating sites were:

AFXBAIDS Care Training and Support (ACTS) InitiativeAssociacao Nacional dos Enfermeiros deMocambique (ANEMO)Bamalete Lutheran HospitalBreede River HospiceCamdeboo HospiceCatholic AIDS ActionCatholic Diocese of Ndola, Integrated AIDSProgramChatsworth Regional HospiceChipata DioceseCHU de COcodyCoast HospiceCotlands Western CapeCradock Hospice (Good Samaritan Home)Eldoret HospiceEstcourt HospiceFederal Medical Centre, Abeokuta, Hospice andPalliative Care ServicesGolden Gateway HospiceGood Shepherd HospiceGrahamstown HospiceHighway HospiceHoly Cross AIDS HospiceHospice Africa UgandaHospice East RandHospice RustenburgHospice ViljoenskroonHowick HospiceJOY Hospice (Deliverance Church MedicalServices)Kara-Ranchod HospiceKara Counseling and Training TrustKhanya Hospice AssociationKisumu Hospice and Palliative CareKitovu Mobile AIDS Home Care and OrphansProgramKNYSNA HospiceLadybrand HospiceLittle Hospice HoimaMeru Hospice

Mildmay InternationalMMM Counseling and Social Service CentreMobile Hospice MbararaMoretele Sunrise HospiceMother of Mercy Hospice TrustMuheza Hospice CareNairobi HospiceNyeri HospiceOcean Road Cancer InstitutePalliative Care InitiativePASADAPretoria Sungardens HospiceRadio and Oncology Centre, Ahmadu BelloUniversity Teaching HospitalRays of Hope Hospice JinjaSelian Lutheran Hospital HospiceSouth Coast HospiceSt Joseph's Care and Support TrustSt Nicholas Children's HospiceStellenbosch HospiceSWAA-RwandaTapologo HospiceTikondane Home-Based Care FoundationTygerberg Hospice

Acknowledgements


Our mission is to produce cutting edge innovativeresearch to improve care for patients and familiesaffected by progressive life limiting disease, anddiscover more humane and effective care andtreatment. We have special expertise in those groupswho have been neglected or who have problems wecontinue to struggle to alleviate.

The Department is multi-professional, comprising 2 clinical Professors, 2 Clinical Senior Lecturers, 3 Lecturers, 2 Senior Research Fellows and around20 multi-professional research, education andsupport staff and consultants in the three mainhospitals to which our Medical School is partnered,Guy’s and St Thomas’ NHS Trust, and King’s CollegeHospital. We also have collaborations and sharedappointments with many palliative care teams,hospices and related services in the UK and overseasand with colleagues in Schools throughout King'sCollege London, including Medicine, BiomedicalSciences, Dentistry, Nursing and Midwifery, Law andEthics, the Institute of Psychiatry and theHumanities.

Our portfolio of work in palliative care research inSub-Saharan Africa, and our history of research intocare for people with non-malignant diseasesincluding HIV/AIDS, has resulted in a number ofteaching and research projects in the region,including the generation and appraisal of originalresearch.

www.kcl.ac.uk/palliative

Tel: +44 (0) 207 848 5584Fax: +44 (0) 207 848 5517Email: [email protected]

Department of Palliative Care, Policy and Rehabilitation, King’s College London


The mission of the African Palliative Care Association(APCA) is to promote and support affordable andculturally appropriate palliative care throughoutAfrica. APCA was provisionally established inNovember 2002, and formally established in Arusha,Tanzania, in June 2004. Its aim is to contribute to theAfrican response to the HIV/AIDS epidemic byscaling-up palliative care provision across Africathrough a culturally appropriate public healthapproach that strives to balance quality withcoverage. Its broad objectives are to:

Promote the availability of palliative care for all inneed, including orphans and vulnerable children.

Encourage governments across Africa to supportaffordable and appropriate palliative care which isto be incorporated into the whole spectrum ofhealth care services.

Promote the availability of palliative care drugsfor all in need.

Encourage the establishment of national palliativecare associations in all African countries.

Promote palliative care training programmessuitable for African countries.

Develop and promote quality standards inpalliative care training and service provision for different levels of health professionals andcare providers.

To achieve these objectives, APCA employs a fourfoldapproach in their work that includes:

1. Working in collaboration with thoseorganisations and individuals championingpalliative care service provision in Africa toensure governments and other internationaldonors accept palliative care as a vitalcomponent in the care of people with life-limiting illnesses (including HIV/AIDS) andincorporate budget lines for dedicated fundingthat will be used to build palliative care capacityacross the region.

2. Providing technical assistance to non-governmental organisations and Faith-basedorganisations working on HIV/AIDS to helpthem integrate palliative care into existing work

programmes, thereby ensuring palliative care isrecognized as part of the spectrum of responsesfor effective HIV/AIDS management.

3. Supporting identified champions of palliativecare (both individual and organisational) inpositions that can influence national policy so that:

Palliative care is included in the curricula for allmedical and nurse training, thereby increasing the existing skills base so that palliative careprovision in the region can be sustained;

Palliative care is incorporated into the nationalhealth plans of African governments;

Appropriate drugs for the alleviation of pain andto combat opportunistic infections are madeavailable.

4. Developing a mentorship programme for neworganisations with ongoing technical support to ensure initiatives are sustainable.

As implied above, APCA does not provide directclinical care to people living with life-limitingillnesses. Rather, it plays a facilitative role, workingcollaboratively with existing and potential providersof palliative care services to help expand the scale ofservice provision by training existing and potentialservice providers, providing support for effectiveadvocacy work and offering a mentorship program tosupport emerging initiatives; and to improve thequality of care provision by the introduction of aquality assurance and standards of care program.

www.apca.co.ug

Tel: +256 (0)41 266251, +256 (0)312 264978, +256(0)312 261490Fax: +256 (0)41 266217 Email: [email protected]

African Palliative Care Association


(1) WHO. Palliative care. [cited 2005 Mar23];Available from: URL:http://www.who.int/cancer/palliative/en/

(2) Mathews WM, Chrisopher MD, McCutchan JA,Asch S, Turner BJ, Giffird AL, et al. Nationalestimates of HIV-related symptom prevalencefrom the HIV Cost and Services UtilizationStudy. Medical Care 2000;38(7):750-62.

(3) Solano JP, Gomes B, Higginson IJ. A comparisonof symptom prevalence in far advanced cancer,AIDS, heart disease, chronic obstructivepulmonary disease (COPD) and renal disease.Journal of Pain and Symptom Management2006, 31 (1):58-69.

(4) WHO. Palliative Care. [cited 5 A.D. Mar22];Available from: URL:http://www.who.int/hiv/topics/palliative/PalliativeCare/en/

(5) Crowe S. Home truths. Nursing Times2001;97(39):26-7.

(6) Harding R, Easterbrook PE, Karus D, Raveis VH,Higginson IJ, Marconi K. Does palliative careimprove outcomes for patients with HIV/AIDS?A systematic review of the evidence. Sexually Transmitted Infections 2005, 81: 5-14.

(7) WHO. Cancer pain relief and palliative care. pdf1990 [cited 5 A.D. Mar 23];Available from: URL:http://www.wpro.who.int/pdf/pub/84/125.pdf

(8) Harding R, Higginson IJ. Palliative Care in Sub-Saharan Africa: an appraisal of reportedactivities, evidence and opportunities. Lancet 2005, 365:1971-1977.

(9) Harding R, Stewart K, Marconi K, O'Neill JF,Higginson IJ. Current HIV/AIDS end-of-life carein sub-Saharan Africa: a survey of models,services, challenges and priorities. BioMed Central Public Health 2003;3(33).

(10) Harding R, Molloy T, Easterbrook PE, Frame K,Higginson IJ. Is antiretroviral therapy associatedwith symptom prevalence and burden?International Journal of STD & AIDS. 2006;17: 400-405.

(11) Easterbrook P, Meadway J. The changingepidemiology of HIV infection: new challengesfor HIV palliative care. Journal of the RoyalSociety of Medicine 2003;94:442-8.

(12) Selwyn P. Why should we care about palliativecare for AIDS in the era of antiretroviraltherapy? Sexually Transmitted Infections2005;(81):2-3.

(13) Saunders CM. Foreword. In: Doyle D, Hanks G,Cherny N, Calman K, editors. Oxford Textbook ofPalliative Medicine. 3rd ed. Oxford: OxfordUniversity Press; 2004. p. xvii-xx.

(14) Gandhi T, Wei W, Amin K, Kazanjian P. Effect ofmaintaining highly active antiretroviral therapyon AIDS events among patients with late-stageHIV infection and inadequate response totherapy. Clinical Infectious Diseases2006;42:878-84.

(15) Volmink J, Dare L. Addressing inequalities inresearch capacity in Africa. British MedicalJournal 2005;331:705-6.

References


APCA's Tool for the Classification of Palliative Care Activities

Appendix 1


Level 1Not palliative care

Level 2

Level 3

Level 4Centre of Excellence

1. Relies mainly on community health workers (CHW)/volunteers2. Includes basic administrative structures3. Provides supportive care4. Does not provide basic OI and/or pain assessment and management services

1. Relies on CHW/volunteers and part-time qualified health professionals2. Includes basic administrative structure and procedures (e.g. job descriptions)3. Provides support and basic clinical services for OI, WHO level 1 pain assessment

and management

1. Relies on CHW/volunteers and full-time qualified health professionals2. Includes managerial and administrative structure and procedures

(management, technical and support staff3. Relies on multidisciplinary team approach for service delivery4. Uses protocols for support and clinical services for OI and pain assessment

and management5. Provides support and clinical services for OI and at least WHO level 2 pain

assessment and management6. Manages a basic referral network for provision of essential palliative

care components

1. All the above2. Manages a proactive referral network3. Provide support and clinical services for OI and WHO level 3? pain assessment

and management4. Provide technical assistance and training to partner organisations5. Recognised palliative care champion

OrganisationalCapacity Level

Qualifying Criteria for Organisational Capacity Level

Notes


African Palliative Care AssociationPO Box 72518Plot 850 Dr Gibbons RoadKampalaUgandaTel +256 414 266251Fax +256 414 266217Email: [email protected] www.apca.co.ug

NGO Registration Number 4231

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