Final report Nottingham Macmillan Lung Cancer CARE service · 12/31/2011 · cancer, to focus on...

Final report

Nottingham Macmillan Lung Cancer CARE service

Nottingham University Hospitals NHS Trust

East Midlands Cancer Network

April 2009–October 2011

Dr Andrew Wilcock DM FRCP Macmillan Clinical Reader in Palliative Medicine and Medical Oncology

Final report April 2009–September 2011 2

Contents List

Section Page

1 Executive summary 3

2 Introduction 5

3 Relevant demographic profile of the population served 6

4 Service aim, objectives and expected outcomes 7

5 Equality and diversity assessment of the service 7

6 Activity analysis 8

7 Levels of intervention or dependency 9

8 Case studies/Service user stories 9

9 Evidence impact of service 11

10 User feedback 14

11 Other service activity 19

12 Learning and development 21

13 Future plans and targets 22

14 Appendices 23

1 Patient flow 1st October 2009–31st September 2011 24

2 New and follow up episodes of patient care and setting (540 patients)

25

3 Selected outcomes for patients diagnosed with thoracic cancer from 1st Jan–31st Dec 2010 and followed until death (277 before 31st Dec 2011); CARE service in place

26

4 Selected outcomes for patients diagnosed with thoracic cancer from 1st Jan–31st Dec 2006 and followed until death (362 before 31st Dec 2007); before CARE service in place

27

5 Poster summary of acceptability of SPARC questionnaire 28

6 Publication of acceptability of SPARC questionnaire in Thorax 29

7 Palliative and supportive care needs in 650 patients at diagnosis 30

8 Poster summary of first year dietetic data set. 31

9 Poster summary of the assessment of body composition using CT. 32

10 Oncology team of the year example publicity. 33


Section 1: Executive summary

The Nottingham Macmillan Lung Cancer CARE service is a unique pro-active supportive and palliative care rehabilitation service with a particular focus on Cachexia, Anorexia and Related Experiences (e.g. fatigue, sleep and mood disturbance) in people with thoracic cancer. It is funded by a £495,000 project grant over three years by Macmillan Cancer Support.

The project aims to increase understanding of the rehabilitation needs of people with thoracic cancer, to focus on common problems and evaluate a model of multidisciplinary pro-active supportive care which could ultimately be rolled out to benefit others.

The Lung Cancer CARE service have:

• in the two years of full operation, seen 540 new patients and provided about 3,200 face-to-face episodes of care and 2,800 telephone reviews; 80% of new and 12% of follow-up assessments take place in the patient’s home

• compared to before the service existed, increased the number able to die at home (33→49%), reduced the number dying in hospital (46→36%) and the number of hospital days utilised (6,778→5,696)

• developed service documentation and some information leaflets to fill existing gaps, e.g. difficulty sleeping at night

• piloted a holistic needs questionnaire in 100 patients and found it to be well-received (published in the journal Thorax and a poster/oral presentation at the European Association for Palliative Care Research Congress 2010)

• summarised the supportive and palliative care needs of 200 patients with thoracic cancer (poster presentation at the European Association for Palliative Care Research Congress 2010) and subsequently 650 patients (poster presentation at the NCRI conference 2011); this work has formed the basis of an MSc for one of the team members

• made links with national initiatives, e.g.: � National Cancer Team Holistic Needs Assessment � National Cancer Team Cancer and Palliative Care Rehabilitation Workforce

project � Department of Health Lung cancer and Mesothelioma Advisory Group � UK lung cancer care coalition

• evaluated specific contributions of individual members of the team, e.g. dietetic data (poster presentation at NCRI conference 2011, submitted for publication); occupational therapy data has formed the basis of an MSc

• provided teaching and training to a wide range of disciplines locally, regionally, nationally and internationally

• undertaken user satisfaction surveys; the team are held in very high regard by the majority of patients

• made a successful bid to Macmillan for a Therapy Assistant to support the team; appointee Ruth Pashley and subsequently Hannah Bailey (August 2010–September 2011)

• won Pfizer Oncology Team of the Year Award, November 2011.

Despite these impressive achievements, and ongoing representation at various


levels, because of the prevailing economic climate, it was not possible to secure ongoing funding for the service in its current format.

Subsequently, the team were reconfigured from 1st October 2011 as a specialist palliative care rehabilitation service, applying the same principles of assessment and support to patients newly referred for specialist palliative care outpatient review or day care attendance. This period is summarized in a separate report.

Acknowledgments

We would like to acknowledge with gratitude the support provided by Macmillan Cancer Support which made this project possible, in particular Jane Rudge, Sandra Clarkson, Kathy Blythe and Julia King.

Wonderful support was also received from many colleagues, in all too numerous to mention, but particular thanks are due to those most involved, especially from the beginning at: NUH: David Baldwin, Miriam Bell, Anne Beswick, Diane Carr, Vincent Crosby, Sue Davis, Carol Greenfield, Peter Homa, Sandra Hummerston, Matthew Maddocks, Eira Macarthur, Sue Mckinnon, Claire Morgan, Keith Oliver, Pauline Pilling, Julie Upton, Gillian White Nottingham Cancer Centre: Owen Cole and Julian McGlashan Mid-Trent/East Midlands Cancer Network: Peter Higgins, Rita Hopkin, Elspeth Macdonald, Elaine Wilson Greater Nottingham Cancer Forum: Bob Glass and Frances Price.

We are also very grateful to the lung cancer nurse specialists and lung cancer clinicians at NUH who embraced the team and its efforts, and finally for the help given by the Hayward House research team in data collection and analysis.

Andrew Wilcock, Helena Alvey, Rachel Bentley Asmah Hussain, Cheryl Percival

March 2012


Section 2: Introduction

Every year in the UK, lung cancer is diagnosed in about 39,500 people and kills 34,000. It is the most common cause of cancer death and the 3rd most common cause of death overall, equating to 40 deaths per 100,000 of population, or one person every 15 minutes. At any one time, about 65,000 people are alive having received a diagnosis of lung cancer.

People with lung cancer experience multiple symptoms which impact adversely on their quality of life. Prognosis is poor with overall 1- and 5-year survival rates of about 30% and 9% respectively. For the 2/3 of people who have advanced disease at diagnosis, the outlook is worse (5-year <1%). The cancer cachexia syndrome contributes to this high morbidity and mortality. It causes symptoms such as fatigue, loss of appetite and weight loss (skeletal muscle mass ± fat mass) that cannot be fully reversed by conventional nutritional support. Lung cancer has one of the highest incidences of cachexia; about 1/3 are malnourished at diagnosis and this increases as the disease progresses. Pro-inflammatory cytokines are a key contributing factor, produced in response to the cancer. There are no effective treatments for cachexia and it represents a major unmet palliative care need in people with lung cancer.

Thus, in addition to developing new treatments, the provision of high quality supportive and palliative care is vital to this patient group. In particular, both NICE and National Cancer Action team guidance underscore the need for holistic needs assessment and the provision of rehabilitation. Rehabilitation is considered an essential component of the cancer journey which aims to optimise dignity and reduce the extent to which cancer affects the patient’s physical, psychological and economic functioning. Fundamental to any rehabilitation package is:

• an early assessment of need

• co-ordination of ongoing assessment

• a co-ordinated multi-disciplinary approach to care

• care provided by a competent, trained workforce.

Nottingham Clinicians are committed to improving the care provided to patients with thoracic cancer and there was strong support for the bid to Macmillan to fund the Nottingham Macmillan Lung Cancer CARE service. The service: • consists of a full time band 7 dietitian (Cheryl Percival), occupational therapist

(Rachel Bentley) and physiotherapist (Helena Alvey), together with a full time band 5 data manager (Asmah Hussain) providing a pro-active supportive rehabilitation service for people with thoracic cancer

• provides support to those receiving curative or palliative treatment, operates within all clinical areas, including the community, and covers the whole of the cancer care pathway

• is based within Specialist Palliative Care Services in the Cancer and Associated Specialties Directorate, at Nottingham University Hospitals (NUH) NHS Trust. The team lead is Dr Andrew Wilcock who, together with Dr Vincent Crosby, provides palliative medicine support to the service; the team is fully integrated with and receives excellent support from existing services

• invites all patients seen in Nottingham Thoracic oncology clinics to self-assess their holistic supportive and palliative care needs by completing the Sheffield Profile for


Assessment and Referral to Care (SPARC) questionnaire; those residing within the Greater Nottingham District are subsequently seen by one or more members of the service. For any outside the Greater Nottingham District, a copy of the completed questionnaire is sent to their General Practitioner, with a covering letter highlighting the needs identified

• aims to increase understanding of the rehabilitation needs of people with thoracic cancer, to focus on common problems and evaluate a model of multidisciplinary pro-active supportive care which could be rolled out to benefit others.

This report summarises the activities of the Lung Cancer CARE service, including the initial set up and piloting of the service, followed by two years of full operation (1st October 2009 – 30th September 2011).

Section 3: Relevant demographic profile of the population served

Nottingham City overview (fully covered by CARE team)

• the population of Nottingham City is about 290,000 and growing due to increasing migration (recently from Eastern Europe), university students and births

• it is a young population; students account for approximately 1 in 9 of the population

• it is a deprived population; Nottingham is ranked 13th out of 354 local authority districts in England (Index of Multiple Deprivation) and 60% of residents live in the 20% most deprived areas of the country

• 24% of the population are from Black and minority ethnic groups (mainly Pakistani, Indian, African Caribbean and mixed heritage); this is steadily increasing; only about 6% are of pensionable age

• life expectancy is lower than the national average and the gap is widening; contributors include premature deaths caused by respiratory diseases, cancers and cardiovascular disease

• mortality rates from cancers are 20% higher than the national average; lung cancer represents a large proportion of the cancers, related to the high prevalence of smoking.

Nottinghamshire County overview (part covered by CARE team)

• the population of Nottinghamshire county is about 650,000 and growing

• it is an ageing population: the proportion of older people is higher than the national average and set to increase by 30–40% over the next 10 years

• there are areas of deprivation; about 20% of its areas are in the top 25% of most deprived areas in the country

• life expectancy varies according to levels of deprivation; commonest causes of death are circulatory diseases, cancer and respiratory disease.

Specific to thoracic cancer Each year about 600 people in the Nottingham City (n=178) and County (n=428) PCTs are diagnosed with thoracic cancer. Incidence rates for Nottingham City are amongst the highest in England (upper quartile), while County is close to the national average. There are trends for increasing numbers of women with thoracic cancer and people with mesothelioma.


Section 4: Service aim, objectives and expected outcomes

Aims:

• increase understanding of the supportive care needs of people with thoracic cancer, with particular emphasis on common distressing symptoms, maximising function and independence

• offer best available evidence-based care

• continually evaluate the efficacy of the care in order to improve the care offered

• develop a model of care that could be rolled out to other centres and people with other types of cancer.

Objectives for people with thoracic cancer:

• to have their supportive care needs routinely assessed around the time of their diagnosis (using the SPARC questionnaire)

• to increase understanding of their needs and this group as a whole

• to be offered appropriate and individualised support in a variety of settings to help meet those needs, in particular to maximise function and independence (individually assessed using appropriate discipline specific tools)

• to continually evaluate the benefit of the support (through a process of ongoing audit/service development).

Expected outcomes Robust documentation and database management will permit continual analysis of:

• number of people having their supportive care needs assessed about the time of their diagnosis as a % of the total number diagnosed

• supportive care needs, including symptom frequency and severity

• care offered, uptake and adherence

• outcome of care offered using agreed endpoints

• regular team review of efficacy of approaches, either time (e.g. every 3 months) or number (e.g. every 50 people) dependent as appropriate

• progress and final project reports.

Section 5: Equality and diversity assessment of the service

The CARE team offers a pro-active service to all patients with thoracic cancer attending NUH who reside within the Greater Nottingham District, and aims to influence care provision for those beyond the Greater Nottingham District by highlighting patients supportive and palliative care needs to their General Practitioner. The initial assessment is offered to all patients with thoracic cancer, no matter their situation. Subsequent more detailed assessments or follow-up visits can be undertaken at a place of the patient’s preference, aiding service accessibility. Ethnic minorities make up only a small proportion of people with thoracic cancer in Nottingham (<4%); when necessary, interpreters have been accessed in line with Trust guidance.


Section 6: Activity analysis

Establishing the service Much work predated the official launch of the service. Team appointments took longer than anticipated: Data manager (January 2009), Occupational therapist (February 2009), Dietitian (April 2009) and Physiotherapist (July 2009). Close working relationships were developed with existing services, particularly the Lung Cancer Nurse Specialists (LCNS), and a joint weekly MDT meeting was established. Once the team was complete, the service was piloted (August–September 2009), publicised and formally launched on 1st October 2009.

During two years of operation Between 1st October 2009–30th September 2011, 776 patients had a diagnosis of thoracic cancer assigned by the Lung Cancer MDT. Of these, 72 (9%) resided out of area, 33 (4%) had died by the time of the MDT discussion, and 5 (<1%) were inappropriate because of cognitive impairment. Of the remaining 666 considered potentially appropriate, 540 (81%) completed a SPARC and were seen by the CARE service (see Appendix 1, page 25). Reasons for 126 (19%) not been seen by the team included:

Reasons for not been seen by the CARE Service Died before discussion at CARE MDT 39 Died before returning SPARC/being seen by team 40 Too unwell/in last days of life 17 SPARC not returned (reason unknown) 22 Declined service 8 Total 126

These figures underscore the poor prognosis of this group of patients, and that despite identifying patients as soon as possible, 33 (4%) had died even before their ‘formal’ diagnosis by the Lung Cancer MDT, 39 (6%) had died within about one week of their diagnosis, and a further 57 (9%) had either died (40) or entered their last days of life (17) before the CARE team were able to see them.

For the 540 patients, new patient episodes of care were provided to 481 (89%) by the dietitian, 273 (51%) by the occupational therapist and 271 (50%) by the physiotherapist. All patients were routinely offered a dietetic assessment, and the high workload this generated was the main reason behind the bid for an Assistant Practitioner who joined the team in August 2010. Assessments by the occupational therapist and physiotherapist were triggered by higher ratings of distress or bother for specific issues or symptoms on the SPARC. A small number of patients who had lower scores were also seen, generally as a result of concerns arising from the home visit by the dietitian. A few patients unable to complete a SPARC (e.g. too unwell, cognitive impairment) were also seen by the team. Thus, overall, 1,101 new episodes and 4,930 follow-up episodes of patient care were delivered. This included 3,197 face-to-face contacts and 2,834 telephone contacts, with 81% of new reviews and 12% of follow-up visits undertaken in the patients own home (Appendix 2, page 26).


Demographics of those seen in the first the first year are typical of patients with thoracic cancer (Appendix 3, page 27). The number of black and minority ethnic patients was small at 15 (4%).

Section 7: Levels of Intervention or dependency

The nature of the service is the early identification of supportive and palliative care needs, particularly those suitable for a rehabilitation approach by advanced practitioner allied health professionals. As such the team are level 4 providers as defined by NICE, providing level 4 intervention for most patients as defined by Macmillan, i.e. ‘The team is involved with ongoing, multiple, complex problems or situations, requiring continuing regular assessment.’

Section 8: Case studies/Service user stories

These case studies illustrate that the care provided by the CARE team ranges from patients who have undergone potentially curative treatment to those requiring support to remain in their preferred place of care.

Mrs A had undergone potentially curative surgery for non-small cell lung cancer. Following surgery, her main concerns were breathlessness, fatigue, pain, loss of weight and appetite, loss of independence and anxiety. She was seen by all members of the CARE team; the dietitian supported her nutritionally with supplements and her weight and appetite improved. The occupational therapist and physiotherapist worked together to optimize her independence at home through the provision of equipment and advice on strategies to help her regain her daily routine, and manage her breathlessness and anxiety. Five months after surgery she returned to her previous levels of activity and independence.

Mr B received curative surgery with adjuvant chemotherapy for non-small cell lung cancer. His main problems were shortness of breath, reduced mobility and independence. Mr B’s first language was not English and key family members assisted in ensuring he fully understood the advice and information given to him. All members of the CARE team saw Mr B. Dietary advice was provided specific to his own cultural requirements. He was given advice regarding breathlessness management and exercises to increase his activity levels; this required several visits as his motivation levels were relatively low. Equipment was provided for the bath and bed to assist with transfers, and a second stair rail arranged. Mr B became fully independent in his mobility and daily activities and was discharged from the CARE team.

Mr C presented with small cell lung cancer causing superior vena cava obstruction and also experienced a stroke affecting his left side. An endovascular stent was inserted into the superior vena cava and palliative chemotherapy commenced. Mr C was initially seen as an inpatient with a view to enabling his wish to be at home. He was not eating well, and the effects of the cancer and his stroke meant he required maximal assistance with his activities of daily living. A successful discharge was made following the provision of intensive physiotherapy, equipment and dietary


advice. After discharge the CARE team continued to support Mr C and his wife at home. He was given nutritional supplements and he returned to his pre-illness weight. His rehabilitation continued and he became independently mobile. Currently he is at home and has begun to pursue some of his previous hobbies.

Mr D presented with non-small cell lung cancer and bone metastases in his ribs, and received palliative radiotherapy. His main issues were problems with taste changes, swallowing, fatigue, shortness of breath and painful/oedematous legs. All members of the CARE team saw Mr D. He received dietary advice together with oral nutritional supplements. Advice on fatigue management and energy conservation was given. Equipment, including rails, was provided to assist with toilet transfers and to help Mr D get comfortable in bed. To maintain his independence, a walking aid was provided, together with exercise advice and massage to his swollen legs. Mr D remains at home with his wife, has maintained his weight and is able to carry out his own personal care despite his deteriorating condition.

Mrs E was diagnosed with non-small cell lung cancer and underwent potentially curative surgery. She was supported by the CARE team initially to help regain her weight and independence. However, Mrs E’s condition deteriorated and the CARE team highlighted this to her medical team. Tests subsequently confirmed metastatic disease. The CARE team continued to support Mrs E and her family, providing dietary advice and oral nutritional supplements, help with anxiety management and by providing equipment to help maintain her independence at home, her preferred place of care. The CARE team referred Mrs E for Day care at Hayward House for psychological support and respite for her family. Ultimately, Mrs E died comfortably at home, surrounded by her family.

Mr F was diagnosed with non-small cell lung cancer and received palliative radiotherapy. He lived alone his main problems were poor appetite, weakness and difficulty undertaking any activities. All members of the CARE team saw Mr F. He was provided dietary advice and oral nutritional supplements. Advice was given regarding breathlessness management and mobility. Equipment was provided to aid transfers (toilet, bed and bath) along with pressure relieving equipment to minimise the risk of developing pressure sores. A Macmillan grant was obtained to assist with purchasing a stair lift. Psychological support was provided throughout and his care coordinated with the General practitioner, district nurse and lung cancer nurse team. Mr F remained at home until his last few days of life and died in hospital as was his preference.

A quote from a patient was also included in the press released which appeared in the Nottingham Evening Post:

Lynn Payne, from Radcliffe-on-Trent, who was diagnosed with breast cancer and lung cancer this year, is one of the people benefiting from the service. The 61-year-old had a mastectomy and an operation to remove her left lung this year. She said: "The new lung cancer team has been brilliant, visiting me in my home and the emotional support I needed. I know they're always at the end of the phone if I need them."


Section 9: Evidence impact of service

In-depth analysis Unfortunately, a £225,000 bid for a Research for Patient Benefit grant to undertake an in-depth formal evaluation in collaboration with Professor Jane Seymour was not successful. Time constraints prevented resubmission elsewhere.

Historical 2006 dataset compared with a 2010 data set To explore the possible impact of the CARE team on survival, inpatient hospital stay and place of death, we compared a cohort diagnosed in 2010 with a historical data set of patients diagnosed in 2006 before the introduction of the CARE service, and followed both for a minimum period of 12 months (Appendix 3, page 27 and 4, page 28).

The two groups were similar in number, age and diagnoses. Compared to 2006, in 2010, median survival was longer overall (116 vs. 101 days) as were survival rates at 3 months (88 vs. 78%) and 12 months (38 vs. 14%).

The total number of admissions was higher in 2010 (773 vs. 689) with the median number of admissions to hospital per patient the same (both 1); however in 2010, the median number of inpatients days per patient was less (11 vs. 13) as was the total number of inpatient days utilized (5696 vs. 6778). Compared to 2006, there was a reduction in hospital deaths (36 vs. 46%), and an increase in home deaths (49% vs. 33%)(Appendix 3, page 27 and 4, page 28).

A number of other factors may have contributed to the changes above (better Lung MDT working, higher resection rates etc.). Nonetheless, we consider that by proactively identifying needs, and through the provision of appropriate advice, equipment and referral to other services, the CARE service will have played a particular part in helping patients to remain at home and out of hospital for end of life care.

Other data Data are currently being analyzed (or are available) which explore contributions of the individual team members and other aspects:

Holistic needs / Symptom cluster analysis Holistic needs were screened for using the SPARC. Because its use had not been reported in patients with a recent diagnosis, its acceptability was first assessed in 100 patients. The results confirmed that is was acceptable and were presented as a poster/oral presentation at the European Association for Palliative Care Research Congress 2010 and subsequently published in Thorax (Appendix 5, page 29 and 6, page 30).

We initially summarised the supportive and palliative care needs of 200 patients with thoracic cancer (poster presentation at the European Association for Palliative Care Research Congress 2010) and subsequently 650 patients (poster presentation at the NCRI conference 2011)(Appendix 7, page 31).

This work has formed the basis of a successfully submitted MSc for one of the team members (Asmah Hussain) to the University of Birmingham. In 752 patients, the top


five most frequent symptoms causing bother or distress were: feeling tired, shortness of breath, changes in weight, worrying about the effects of the illness on others and loss of appetite. Cluster analysis produced five clusters: general, psychological, treatment issues, independence and activity, and physical. The latter was the most highly reported with independent variables such as stage and performance status able to predict scores. This will be prepared for publication.

Impact of first-line therapy on holistic needs assessment. In a significant proportion of patients, as recommended, the SPARC was repeated following completion of their first-line therapy. These data are yet to be examined.

Dietetic dataset This is based on patients seen during the first year of service, and we are actively seeking publication. Initial results were presented as a poster at the NCRI conference 2011 and Cachexia conference Milan 2011 (Appendix 8, page 32). Of 243 patients seen, 35% were malnourished which was associated with a palliative treatment intent (P<0.05) and a reduced survival (median 155 days less, 1-year survival 19% vs. 41%; P<0.01 for both); nonetheless, for about one-fifth, treatment intent was curative. Overall, about two-thirds of patients were failing to meet their daily recommended energy intake. The dietitian provided over 870 episodes of care, a median of three per patient. More of the malnourished group received oral nutritional supplements, but also experienced problems tolerating them. Over one month, neither the pattern nor magnitude of the change in weight differed between malnourished and not malnourished groups. Overall, weight was stable, increased or decreased in 52 (27%), 80 (42%) and 59 (31%) respectively, with no difference in overall survival (P=0.16). This data provides unique and pragmatic insight into the implications of following national guidance on nutritional screening and support in this patient group. Nutritional support failed to prevent weight loss in some patients, and did not appear to impact on survival; new assessments and treatments for cachexia are required.

Based on these results, during the second year of service, we offered fish-oil containing oral nutritional supplements in patients with a raised C-RP; the impact on this is still to be analysed.

Body composition analysis In a subset of 100 patients, as part of a medical student BMedSci project, diagnostic CT scans were analysed using Slice-O-Matic software to calculate cross-sectional area of skeletal muscle and adipose tissues, from which whole-body fat and fat-free mass were estimated. Intra- and inter-observer reliability were assessed in the first ten of 100 patients examined. This revealed that CT image analysis was highly reliable both within and between observers for the assessment of all tissue types with intra/inter-class correlation coefficients of 1.00 (lower 95% confidence intervals 0.98−1.00). Of 100 patients (52 female, mean (SD) age 70(9) years, BMI 25.0(4.6) kg/m2) one fifth were sarcopenic (i.e. had severe loss of skeletal muscle tissue). Of this group, only one-third were malnourished according to clinical criteria.

This work was produced as a poster, displayed at the Cachexia conference, Milan, 2011 and Christie National Aspiring Oncologist Conference, 2011, winning 2nd place poster prize (Appendix 9, page 33).

Occupational therapy dataset This has been analysed for the two years of service, and has formed the basis of a


successfully submitted MSc to the University of Derby (Rachel Bentley).

Over two years, 273 patients were assessed by the occupational therapist as a result of scoring very much (3) or quite a bit (2) of distress or bother in response to the issues ‘changes in ability to carry out usual daily activities’ (168), ‘losing independence’ (162), ‘changes in ability to carry out usual household tasks’ (153) and ‘feeling tired’ (107) on the SPARC screening questionnaire.

A full occupational therapy assessment revealed a median [IQR] of 4 [2–5] problems per patient, most commonly in relation to self care (78%) specifically transfers, functional mobility and bathing/showering. Only 12% of patients highlighted problems in the domain of productivity and 7% in the domain of leisure. A minority of 3% identified cognitive or psychological problems. Only 5% of patients (n=13) did not identify any problems during the occupational therapy assessment.

A median number of 2 [1–3] interventions were provided per patient. Equipment provision was the most common intervention, followed by specific advice, referral to other professionals/agencies (wider MDT in the hospital and community settings, social services and housing), psychological support, fatigue management (energy conservation techniques), adaptations (measuring and referring for minor adaptation including grab rails, second stair rails and extra steps) and relaxation support (progressive muscular and graded imagery relaxation).

The problems were considered as goals with a median [IQR] of 2 [1–3] set per patient, of which 93% were considered achieved. Patients had 2 [1–4] pieces of equipment issued with 77% reporting them to be of use.

Over the 24 month period, working full time, the occupational therapist provided 1978 separate episodes of care. This included 901 face-to-face contacts and 1077 telephone reviews, with 81% of new patients seen at home and 17% of follow-up visits undertaken at home. An initial assessment would generally take 1–2h and telephone reviews 15min. This does not take into account travelling or administration.

Physiotherapy dataset This is still being analyzed, but is summarized to date below.

Over two years, 271 patients were assessed by the physiotherapist as a result of scoring very much (3) or quite a bit (2) of distress or bother on the SPARC screening questionnaire in response to the issues of ‘shortness of breath’ (157), ‘weakness’ (153), ‘cough’ (110), ‘pain’ (90), ‘loss of independence’ (85), and ‘changes in your ability to carry out your usual daily activities such as washing, bathing or going to the toilet’ (71).

A full physiotherapy assessment revealed a median [IQR] of 4 [3–5] problems per patient, most commonly in relation to mobility (82%), breathing control (68%) and less so for cough (11%) and pain (7%).

A median number of 2 [1–4] interventions were provided per patient. These consisted mainly of education and advice around mobility, breathing control, exercise, cough, pain and the provision of a walking aid to help independence.

Over the 24 month period, working full time, the physiotherapist provided 2530 separate episodes of care. This included 1571 face-to-face contacts and 959


telephone reviews, with 64% of new patients seen at home and 11% of follow-up visits undertaken at home. An initial assessment would take 1–2h with subsequent reviews 30min–1h and telephone reviews 15min. This does not take into account travelling or administration.

Section 10: User feedback

Acceptability of the SPARC questionnaire Before formally adopting the SPARC questionnaire to identify supportive and palliative care needs in people with a recent diagnosis of thoracic cancer we undertook a survey with 100 patients. The vast majority of feedback was positive and the results have been presented as a poster discussion (Appendix 5, page 29) and published in the journal Thorax (Appendix 6, page 30).

Patient Satisfaction survey 2010 In August 2010, user satisfaction surveys were sent out to 50 current or previous users of the service. After 4 weeks, 32 replies were returned, a response rate of 64%:

How satisfied are you with the amount of help you have received from the CARE team? Quite dissatisfied

Indifferent or

mildly dissatisfied

Mostly satisfied

Very satisfied

0 2 (6%) 4 (13%) 26 (81%) Has the input from the CARE team helped you to cope with your situation? Yes, they helped

a great deal Yes, they helped

somewhat No, they really

didn’t help No, they seemed to make things

worse 26 (81%) 5 (16%) 1 (3%) 0

How would you rate the quality of the service you have received from the CARE team?

Excellent Good Fair Poor 24 (75%) 5 (16%) 3 (9%) 0

Overall, how satisfied are you with the service you have received from the CARE team?

Very satisfied Mostly satisfied Indifferent or mildly dissatisfied

Quite dissatisfied

26 (81%) 4 (13%) 2 (6%) 0 Fourteen questionnaires also included free text comments; of these 13 were overwhelmingly positive including specific comments relating to the team such as:

We find the team very friendly, approachable and caring; they have given us help, advice and suggestions and support without being too ‘full on’. They are brill!


The team are the best. Keep up the excellent work. A very appreciative patient. Thank you very much.

I have only met two of the team…but if they show as much help to others like me, then you have two wonderful people working for you.

Thank you for all you did…we appreciated it…your doing a good job.

The service is very excellent.

Everyone was very caring and always answered any question. They are all a very great team…

The team have helped me in many different ways with advice and help. Nothing seems to be any problem to them….I cannot praise them enough. Long may they continue.

I was very pleased with the politeness and courtesy of the team members…..Thank you to all the team…may your good work continue.

All staff are friendly and caring. They do an excellent job and should be highly commended.

I have the highest praise for this team, being helpful, courteous, readily available at all times.

The information, support and encouragement given to me by Cheryl, Rachel and Helena was central to my recovery post-op and was very much appreciated as I quickly regained my strength.

I have, and continue to receive, a great deal of help and advice from the CARE team. It is very reassuring to know there are very able people always on hand. Problems and questions are dealt with quickly, and members of the team are always happy to visit at home if needed. Excellent service.

The team have been very helpful and tended to our needs and concerns. We could not have been looked after any better. Thank you very much. One comment received from a bereaved relative was mixed but did not relate specifically to the CARE service. Patient Satisfaction survey 2011 Between February and June 2011, user satisfaction surveys were sent out to 64 current or previous users of the service; 41 evaluable responses were returned, a response rate of 64%:

How satisfied are you with the amount of help you have received from the CARE team? Quite dissatisfied

Indifferent or

mildly dissatisfied

Mostly satisfied

Very satisfied

0 0 8 (20%) 33 (80%)


Has the input from the CARE team helped you to cope with your situation? Yes, they helped

a great deal Yes, they helped

somewhat No, they really

didn’t help No, they seemed to make things

worse 31 (76%) 10 (24%) 0 0

How would you rate the quality of the service you have received from the CARE team?

Excellent Good Fair Poor 34 (83%) 7 (17%) 0 0

Overall, how satisfied are you with the service you have received from the CARE team?

Very satisfied Mostly satisfied Indifferent or mildly dissatisfied

Quite dissatisfied

36 (88%) 5 (12%) 0 0 Twenty-nine questionnaires also included free text comments to additional questions:

Please give 1 or 2 examples of how exactly the CARE team have helped you to cope with your situation (25 responses):

Provision of calogen extra drinks has proven helpful.

They help to get things from upstairs as I have difficulty getting upstairs. They are kind and helpful.

The CARE team have given me diet help although at the moment I don’t need it. I am sure when I do they will be at hand.

Just the feeling that someone is close at hand and cares for my welfare.

Knowing the team was available for advice/support should it be required. Also constant follow-up from Ruth and occupational therapist. Thank you.

Being an anxious person, I was so frightened of the surgery. Jill Allsop got me through a very bad time. The aftercare from Helena, Cheryl, Rachel was really good. Also Ruth who rang me a few times was there to talk to and get me through having a bad day. The lung CARE team made me feel like they were my friend and made me feel at ease. Thanks to them all.

They have reassured me about any worries I have had.

Apart from the actual advice and tips given, just being able to talk to someone was a great help.

Any questions I have they will give me an answer which helps ease my mind. They are cheerful and I enjoy seeing them which makes me feel better.

1) Keep me informed of what’s happening. 2) Gave help in filling forms in.

They have been very kind and caring in the way they have spoken to me and let me know if I needed them they are there for me.


You have given advice on diet and what was needed after my op.

Helping me get a bed rest seat cover and stool for shower. I should like to thank the dietitian for her visit and the good advice given. Also the CARE team members for their interest in me.

Bath support board, raising of the sofa, relaxation therapy.

They keep in touch with me and have helped me to apply for things I had no idea I was entitled to. Helped with my diet.

They were there to provide advice and answer questions I had.

Cheryl visited me at home and suggested I take daily supplements which I’m sure give me extra energy and help with my treatment.

Help at the hospital when first diagnosed with mesothelioma and during my subsequent visits.

Jill and Ruth helped me very much.

They were there in the early stages when we needed help and advice.

By being knowledgeable about my condition and keeping in monthly contact.

Showing interest in the way you cope with your condition.

Diet. They are there when needed.

By being there if I needed them. Please give 1 or 2 of the most important features of the CARE team which has influenced your overall satisfaction (18 responses)

Constant contact and enquiry by members of the team shows support and encouragement

They are reliable. They phone my daughter when they feel it is necessary.

Keeping in contact in the early days.

One feature is that all the girl’s care and the most rewarding thing they did for me was to gat an attendance allowance which had never occurred to me. Dietary advice. Regular reliable contact.

The fact they ring me up to let me know that they are there.

The girl’s are always there when I need them.

It is hard to say because they have helped in so many ways. I don’t feel alone with them. I have full faith and confidence in everything they say and do. They give me the genuine support I need.

Knowing they are there. They always have time for me.


Just how lovely they all are and so helpful.

The most important thing is that they are there if I need them. It is very comforting and takes away a worry.

Keeping in touch all the time.

I feel that the visits and the phone calls have helped in giving me confidence during treatment. They are very good ambassadors for our City Hospital

They provided help with equipment for the home so I feel safe with my normal activities. I have received monthly phone calls from the team – always friendly offering support if needed, asking about progress, specific needs and how I am coping day to day.

Always end the call with saying that I can call anytime if I need help with anything – very reassuring.

Their caring and kind sympathetic help and guidance when back at home.

Help with diet and weight. Help with exercise. Reassurance.

Encouragement and help to put on weight. .

All the members of the CARE team that have dealt with me over this difficult time have been extremely helpful, friendly, courteous and supportive. Finally, please add any other comments about the CARE team, or suggestions to improve the service (12 responses)

A first-class service. Perhaps I am not as acutely in need as some.

I cannot fault the service I received at all. But may need more help in the future.

A very helpful, friendly service which cannot be faulted.

I am grateful for the regular contact and concerns you have offered me.

It is comforting to have a dedicated team to turn to for help, support and reassurance.

I am sure there are ways to improve the service, but quite honestly I am not the one to ask, having received the best of help at a difficult time.

I cannot think of anything that may improve the service as I have received nothing but kindness and courtesy from all members of the City Hospital.

They could not do more than what they are already doing.

There is very little improvement to do I just want them to be there for me and everyone forever.

I think I have said it all, thank you CARE team.

They are doing a brilliant job. Overall, the results from these two surveys reflect that the vast majority of patients and carers hold the CARE service in a very high regard.


Research for Patient benefit Grant) Unfortunately, this grant was declined. However, it proposed an independent evaluation of the impact of the rehabilitation service on the experiences of people with thoracic cancer from the perspectives of patients, carers and professionals.

Section 11: Other service activity

Peer recognition The CARE service has been recognised as a model of good care in the National Lung Cancer Forum for Nurses 2009 Good Practice Guide.

Because of the CARE team, lung cancer was the only cancer site to fully meet National peer review standards for rehabilitation.

Promotion of the service and dissemination of findings Andrew Wilcock, Radka Klezlova, Sarah Coombes, Amanda Rawson, Rachel Bentley, Doug Hooper, Matthew Maddocks. Acceptability of the SPARC questionnaire for identifying supportive and palliative care needs in people with a recent diagnosis of thoracic cancer. European Association for Palliative Care Research Congress, Glasgow, 2010 (poster discussion presentation). See Appendix 5, page 29.

Andrew Wilcock, Radka Klezlova, Sarah Coombes, Amanda Rawson, Rachel Bentley, Doug Hooper, Matthew Maddocks. Identifying supportive and palliative care needs in people with a recent diagnosis of thoracic cancer: acceptability of the SPARC questionnaire. Thorax 2010 65:937–8. See Appendix 6, page 30.

Ruth England, Helena Alvey, Val Godfrey, Rachel Bentley, Cheryl Percival, Andrew Wilcock. Palliative and supportive care needs of patients with thoracic cancer European Association for Palliative Care Research Congress, Glasgow, 2010 (poster presentation).

Asmah Hussain, Matthew Maddocks, Rachel Bentley, Cheryl Percival, Helena Alvey, Ruth Pashley, Andrew Wilcock. Supportive and palliative care needs of patients with thoracic cancer at diagnosis National Cancer Research Institute 7th cancer conference, Liverpool, 2011 (poster presentation). See Appendix 7, page 31.

C Percival, A Hussain, S Zadora-Chrzastowska, M Maddocks, G White, A Wilcock. Quantifying nutritional support needs of patients with thoracic cancer: findings of a dedicated rehabilitation service. National Cancer Research Institute 7th cancer conference, Liverpool, 2011 (poster presentation). See Appendix 8, page 32.

C Percival, A Hussain, S Zadora-Chrzastowska, M Maddocks, G White, A Wilcock. Providing nutritional support to patients with thoracic cancer: findings of a dedicated rehabilitation service. 6th Cachexia Conference, Milan, Italy, 2011 (poster presentation). See Appendix 8, page 32.

Pettit C, Maddocks M, Pointon K, Wilcock A. Assessing body composition using computed tomography imaging: findings in UK patients with thoracic cancer. The Christie National Aspiring Oncologist Conference, 2011 (poster presentation; 2nd


place prize). See Appendix 9, page 33.

Pettit C, Maddocks M, Pointon K, Wilcock A. Assessing body composition using computed tomography imaging: reliability and findings in UK patients with thoracic cancer. 6th Cachexia Conference, Milan, Italy, 2011 (poster presentation). See Appendix 9, page 33.

Submitted for publication:

C Percival, A Hussain, S Zadora-Chrzastowska, G White, M Maddocks, A Wilcock. Quantifying nutritional support needs of patients with thoracic cancer: findings of a dedicated rehabilitation service. Many of the above results have also been shared with:

• East Midlands Cancer Network, specifically Rehabilitation Group

• Other Cancer Networks

• Department of Health Lung Cancer and Mesothelioma Advisory Board

• UK Lung Cancer Care Coalition

• National Cancer Action Team: Holistic Assessment Team

• National Cancer Action Team: Cancer and Palliative Care Rehabilitation Workforce Project

• Macmillan Cancer Support, e.g. shared with Improving Lung Cancer Outcomes Project; Understanding the 2 million through rich pictures - lung cancer.

Helena Alvey: Nottingham Lung Cancer Support Group (Sep 09); NUH Lung Cancer team development away day (Sep 09); Nottingham Community Macmillan Nurses (Jan 10); NUH Physiotherapists (Jan and Feb 10); Macmillan Health and Wellbeing meeting (Apr 10). Macmillan Transforming Services National conference (Dec 10); Physiotherapy students teaching (Jan, Mar, May 11); Breathlessness talk to students at Nottingham University (Mar 11); Nottingham Lung Cancer Support Group (Mar, Oct 11).

Rachel Bentley: Nottingham Lung Cancer Support Group (Jun 09 and Dec 09); NUH Occupational therapy department (various); Question and Answer panel member at a National Holistic Needs Assessment workshop (Jun 10); Macmillan Health and Wellbeing meeting (Apr 10). Macmillan Transforming Services Conference (Nov 10); Teaching District nurse student (Jan 11); Macmillan Regional event, Kegworth (Jun 11); Macmillan Focus group on Disability Living Allowance (Jan 11); NUH occupational therapy department (Apr 11); East Midlands Cancer Network Rehabilitation Pathway event (May 11); Clinical nurse specialist and AHPs NUH group (Jul 11); Nottingham Lung Cancer Support Group (Jul 11). Cheryl Percival: Nottingham Lung Cancer Support Group; Nutrition at end of life, End of life workshop for GPs and AHPs, East Midlands Cancer Network (Nov 09); NUH dietetic department (Nov 09); Communication skills for behaviour change in dietetic consultations (NUH and University of Nottingham MSc course) (Feb 10 and 11); Macmillan Health and Wellbeing meeting (Apr 10). Nottingham Lung Cancer Support Group (Oct 10 and Sep 11).

Andrew Wilcock: presentation CARE rehabilitation Service, Toronto General Hospital, Canada (May 10); NUH Oncology dietitians meeting (Aug 10); NUH Cancer Leads


Meeting (Feb 11); East Midlands Cancer Network Lung Cancer Meeting (May 11); National Lung Cancer Forum for Nurses Annual Conference, Glasgow (Nov 11); East Midlands Cancer Network, Bending the cost curve of lung cancer (Feb 12); Nottingham GP teaching sessions (Apr 12).

Other activity Mentoring of staff and dietetic, occupational therapy and physiotherapy students.

Other publicity Macmillan lung cancer CARE service launched (2009) NUH intranet.

Extra help on offer for lung cancer patients (2009) Nottingham Evening Post. October 27. http://www.thisisnottingham.co.uk/news/Extra-help-lung-cancer-patients/article-1458187-detail/article.html

CARE – a unique rehabilitation service (2010) Macmillan Voice. 53:13.

Oncology team win prestigious national award (2011). NUH press release http://www.nuh.nhs.uk/newsdesk/news_items/2011/11_November/141111_2.aspx

Cancer team wins national award (2011) Nottingham Evening Post. http://www.thisisnottingham.co.uk/Cancer-care-team-wins-national-award/story-13870984-detail/story.html

Oncology team win prestigious national award (2012). East Midlands Cancer Network Newsletter. See Appendix 10.

Section 12: Learning and development

Individual team members learning (in addition to in-service training):

Helena Alvey: Macmillan induction day (Oct 09 and Jan 10); Innovation and improvement – leading the way to better services, Macmillan conference (Nov 09); Including the excluded, research in advanced disease. North and East Yorkshire and Northern Lincolnshire Research Network Conference (Apr 10); Primary Care Conference, Palliative Care Programme, NEC (May 10). Macmillan conference (Dec 11); PCT palliative care study day (May 11); Lung cancer Network Site Specific Group (May 11); Acupuncture course (Jul and Aug 2011).

Rachel Bentley: Mesothelioma conference, Kent and Medway Trust (May 09); Nausea, vomiting and dyspnoea teaching, LOROS (May 09); Last days of life care pathway, Hayward House (Aug 09); Wheelchair study workshop, Mobility Centre (Jan 10); NCAT Cancer rehabilitation commissioning guidelines and workforce data event (Jan 10); National occupational therapy conference and HIV/Oncology and palliative care (HOPC) special section meeting (Jun 10, Mar 11, Jul 11). Journal review group (Feb 11); Spiritual care study session (May 11); Health and fasting seminar (Jul 11); Fatigue management course (Jun 11); Shadowing Fatigue, Anxiety, Breathlessness group (Sep 11).

Cheryl Percival: Nausea, vomiting and dyspnoea teaching, LOROS (May 09); Mid-Trent Cancer Research Network End of life study day, National centre of rehabilitation education (Oct 09); Innovation and improvement – leading the way to


better services, Macmillan conference (Nov 09); Familial cancer study day, East Midlands Cancer Network (Dec 09); End of life care conference, Nottinghamshire healthcare trust (Feb 10); What attitude in healthcare, Talking life seminars (June 10) NCORE end of life training, 4 days (Jan/Feb 10); British Dietetic Association oncology group & palliative care study day (Mar 10); British Association for Parenteral and Enteral Nutrition, medical teaching day on nutrition and cancer (Mar 10); Cancer Foundation Programme 49 hours (Sep–Nov 10); Trent oncology & palliative care dietitians meeting (Jan 11).

Team development A case of need was developed to expand the CARE team in 2010 to include an assistant practitioner. This was mainly to help evaluate the routine dietetic support that is provided. It also helped free up the Band 7 team members from tasks such as equipment deliveries etc. so that they can concentrate on providing more specific therapeutic interventions.

Section 13: Future plans and targets

To seek ongoing funding. Despite a high level of activity, patient satisfaction and apparent impact of the team on hospital use and preferred place of death, securing ongoing funding for the team has proved challenging in the current economic climate, even with sustained lobbying at various levels locally and regionally. Further, having identified the high need in this patient group, it was nonetheless indicated that any future funding would be dependent on the service providing support to a wider group of patients.

In order to obtain data to support a bid for such a service, from 1st October 2011, the team were repositioned as a specialist palliative care rehabilitation team (SPCRT) providing support primarily to patients referred for day care or outpatient review at Hayward House, the specialist palliative care unit within the grounds of NUH. Data from this experience will be summarized separately.

During this time, the team have no longer routinely seen new patients with thoracic cancer, but have continued to support those already known to the team.

At the time of writing, the team were awaiting the outcome of tendering to provide such a service for Nottingham CityCare Partnership.

To continue to analyze data and prepare for dissemination and publication There remains a wealth of data to analyze and it is anticipated that this will be used to develop conference abstracts and papers for publication.

To continue to champion the needs of patients with thoracic cancer In Nottingham, we will continue a focus on improving the supportive and palliative care provided to patients with thoracic cancer. Two grants have recently been submitted and their outcome awaited:

• Lung cancer diagnosed following emergency admission: improving patient experiences and outcomes. Roy Castle Lung Cancer Foundation, £75,000 (single centre study)

• Early Specialist PalliativE Care for patients with non-small cell Lung Cancer (ESPECiaL). HTA, £1.8million (multicentre study).


Section 14 Appendices Appendix 1 Patient flow 1st October 2009–31st September 2011 Appendix 2 New and follow up episodes of patient care and setting (540 patients) Appendix 3 Selected outcomes for patients diagnosed with thoracic cancer from 1st Jan–31st Dec 2010 and followed until death (277 before 31st Dec 2011); CARE service in place Appendix 4 Selected outcomes for patients diagnosed with thoracic cancer from 1st Jan–31st Dec 2006 and followed until death (362 before 31st Dec 2007); before CARE service in place Appendix 5 Poster summary of acceptability of SPARC questionnaire Appendix 6: Publication of acceptability of SPARC questionnaire in Thorax Appendix 7 Palliative and supportive care needs in 650 patients at diagnosis Appendix 8. Poster summary of first year dietetic data set. Appendix 9 Poster summary of the assessment of body composition using CT. Appendix 10 Oncology team of the year example publicity.


Appendix 1 Patient flow 1st October 2009–31st September 2011

Diagnosed at thoracic cancer MDT: 776

Out of area: 72

Died before MDT: 33

Inappropriate: 5

Appropriate for the CARE service: 666

Discussed at CARE MDT: 627

Died prior to completing SPARC or being seen by team: 40

Too unwell/in last days of life: 17

SPARC not returned: 22

Declined: 8

SPARC returned and seen by CARE service: 540

New patient episodes

Dietitian: 481

Occupational therapist: 273

Physiotherapist: 271

Died before CARE MDT: 39


Appendix 2 New and follow up episodes of patient care and setting

1st Oct 2009– 31st Sep 2010

1st Oct 2010– 31st Sept 2011 Total (%)

NEWa

Home visits 456 437 893 (81)

Outpatients 61 30 91 (8)

Inpatients 55 31 86 (8)

Hayward House 19 12 31 (3)

Total New 591 510 1101

FOLLOW UPa

Home visits 365 248 613 (12)

Outpatients 256 83 339 (7)

Inpatients 443 457 900 (18)

Hayward House 184 60 244 (5)

Telephone reviews 1644 1190 2834 (57)

Total Follow up 2892 2038 4930

GRAND TOTAL 3483 2699 6031

a. the involvement of a different team member generated additional new and follow up

visits.


Appendix 3 Selected outcomes for patients diagnosed with thoracic cancer from 1st Jan–31st Dec 2010 and followed until death (277 before 31st Dec 2011); CARE service in place

Place of death (n=277)

All Patients (n=394)

Hospital (n=99 / 36%)

Home (n=135 / 49%)

Nursing Home (n=14 / 5%)

Hospice (n=29 / 10%)

Gender no. (%) male / female 222 (56) / 172 (44) 37 (64) / 21 (36) 45 (55) / 34 (45) 4 (57) / 3 (43) 14 (92) / 1(8)

Mean (SD) age at diagnosis 71 (11) 70 (12) 74 (10) 78 (8) 72 (11)

Diagnosis no. (%)

NSCLC 282 (72) 40 (69) 42 (55) 3 (43) 12 (80)

SCLC 61 (16) 12 (21) 14 (18) 1 (14) 0

Mesothelioma 13 (3) 2 (3) 2 (8) 0 1(7)

Undifferentiated 9 (2) 1 (2) 4 (5) 0 1(7)

Clinical 29 (7) 3 (5) 14 (18) 3 (43) 1(7)

Survival in days 116 [43–246] 100 [38–235] 124 [45–270] 162 [56–297] 110 [54–177]

3 month survival rate (%) 88


No. admissions per patient 1 [1–3] 2 [1–3] 1 [0–2] 1 [0–3] 2 [1–3]

Total no. of admissions 773 213 217 26 77

No. inpatient days per patient 11 [2–23] 11 [5–22] 5 [0–21] 15 [4–36] 24 [14–32]

Mean (SD) inpatient days per patient

15 (15) 15 (14) 11 (15) 19 (16) 26 (16)

Total no. of inpatient days 5696 1538 1551 262 761

Length of final inpatient stay prior to death per patient

- 6 [2–12] - - 14 [7–24]

Total no. of inpatient days in final inpatient stay prior to death

- 832 - - 465

Data are median [IQR] unless stated otherwise


Appendix 4 Selected outcomes for patients diagnosed with thoracic cancer from 1st Jan–31st Dec 2006 and followed until death (362 before 31st Dec 2007); before CARE service in place

Place of death (n=362)

All Patients (n=363)

Hospital (n=167 / 46%)

Home (n=118 / 33 %)

Nursing Home (n=42 / 12%)

Hospice (n=35 / 10%)

Gender no. (%) male / female 218 (60) / 145 (40) 82 (67) / 41 (33) 56 (62) / 35 (38) 15 (50) / 15 (50) 16 (70) / 7 (30

Mean (SD) age at diagnosis 71 (11) 71 (10) 73 (10) 73 (10) 69 (15)

Diagnosis no. (%)

NSCLC 271 (75) 89 (72) 75 (82) 23 (77) 18 (78)

SCLC 54 (15) 18 (15) 10 (11) 4 (13) 2 (9)

Mesothelioma 25 (7) 9 (7) 5 (6) 2 (7) 0

Undifferentiated 13 (4) 7 (6) 1 (1) 1 (3) 3 (13)

Survival in days 101 [35–271] 72 [24–234] 110 [36–279] 148 [59–273] 182 [100–300]



No. admissions per patient 1 [1–2] 2 [1–2] 1 [0–2] 1 [1–3] 3 [1–4]

Total no. of admissions 689 347 159 75 107

No. inpatient days per patient 13 [5–24] 14 [6–24] 6 [0–15] 16 [8–28] 31 [14–52]

Mean (SD) inpatient days per patient

19 (20) 20 (19) 11 (13) 22 (26) 36 (27)

Total no. of inpatient days 6778 3272 1309 929 1260

Length of final inpatient stay prior to death per patient

- 9 [3–18] - - 15 [4–30]

Total no. of inpatient days in final inpatient stay prior to death

- 2023 - - 747

Data are median [IQR] unless stated otherwise


Appendix 5 Poster summary of acceptability of SPARC questionnaire


Appendix 6 Publication of acceptability of SPARC questionnaire in Thorax


Appendix 7 Palliative and supportive care needs in 650 patients at diagnosis


Appendix 8 Poster summary of first year dietetic data set.


Appendix 9 Poster summary of the assessment of body composition using CT.


Appendix 10 Oncology team of the year example publicity.

Date post:	03-Jul-2020
Category:	Documents
Upload:	others
View:	1 times
Download:	0 times

Final report Nottingham Macmillan Lung Cancer CARE service · 12/31/2011 · cancer, to focus on...

Documents