Developing and Implementing a Patient Reported Experience Measure

Transforming Participation in CKDDeveloping and Implementing a

Patient Reported Experience Measure

Rachel Gair

Person Centred Care Facilitator

The Passive Patient

Chronic Kidney Disease National Programme | Rachel Gair | 2

• Healthcare can be profoundly disempowering

• But most patients want to be treated as active participants – as co-producers of health.

To a person centred approach…

| 3Chronic Kidney Disease National Programme | Rachel Gair

Background


NHS health policy:

emphasises the crucial role of patient experience as a core component of high quality care, alongside effectiveness and safety.

Domains of quality

Effectiveness of care (PROMs) Does it reduce symptoms, improve function, improve quality of life? Safety (PROMs) Does it cause harm eg mortality, complications? Experience of care (PREMs) What do patients think of the process of care eg dignity, information, trust in staff, cleanliness, timeliness? Hutchings et al Improving health world wide – Kings Fund

Why Collect PREM?


Measuring patient experience is important:

• To guide service improvement

• People’s experiences of care may be linked to clinical outcomes and costs

>Improving patient outcomes can increase patient experience ratings by 10%

>Improving patient experience ratings will cause a 3% improvement on outcome scores.

Doyle C et al systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open 2013; 3(1): .

Gaps


Despite a wealth of initiatives:

• The National Patient Survey programme

• NHS Patient Experience Framework

• NICE quality standard for patient experience in adult NHS services

• The collection of patient-reported experience measures (PREMs) and

• Patient-reported outcomes (PROMs) –

There are still gaps in understanding at a local and national level about how healthcare is really experienced

What is PREM?


Experience – is subdivided

• Satisfaction measures - which allow patients (or their carers)to report their subjective view, or perception of, the treatment received (e.g. would you recommend the service); and more recently

• Patient Reported Experience Measures (PREMs) which collate patients’ objective experience of care. By focusing on specific aspects of the process of care (e.g. were you seen on time)

PREMs seek to remove the subjectivity associated with measures of satisfaction.

What is PREM?


• Patient reported experience measures (PREMS) are used to understand patients’ views on their experience while receiving care, rather than the outcome of that care.

• Using information on both patient experience and outcomes enables us to have a broader understanding of service quality from patients’ viewpoint.

• It may be possible to have a service which provides good outcomes but a poor experience, or a good experience but poor outcomes.

Challenges


Even when health professionals express positive opinions about using patient feedback, this does not necessarily translate into changing practice. Side-lined as too subjective and divorced from the ‘real’ clinical work of measuring effectiveness and safety.

So what are best ways to:

• assess patient experience

• act on patient feedback, especially as patients move between different parts of the health service.

• Ultimately translating into redesign and delivery of healthcare services

What are the questions the TP – CKD programme is asking?


• Can PAM/CS-PAM/PROM/PREM measures be collected routinely within renal units?

• Is the PAM related to PROM/PREM/Clinical Measure results?

• Can we introduce interventions that will increase a patient’s and teams activation?

Co-production as a core value

TP-CKD – Measurement Workstream


• PREM tool developed with members of the Measurement Workstream of the Think Kidneys Programme – TP-CKD.

• Had input from kidney patient charities such as the National Kidney Federation, BKPA and the UKRR Patients’ Council.

• Identified available instruments to measure patient-reported experience:

• Exploratory literature review

• PREM tool comprises 43 survey questions – pick and mix!

• Covers 12 themes – access to renal team – transport – communication – Shared Decisions

Overview of identified instruments (1)


Specific for renal services1.CHOICE Satisfaction questionnaire (Dialysis)

www.ncbi.nlm.nih.gov/pubmed/24840250 2.CAPHS in-center hemodialysis survey (in-centre HD)

https://cahps.ahrq.gov3.Scottish Renal Patient Experience survey (RRT)

www.healthcareimprovementscotland.org/previous_resources/performance_review/renal_patient_survey.aspx

4.CQ Index for dialysis (Dialysis)www.ncbi.nlm.nih.gov/pubmed/22362785

5.Satisfaction of patients on chronic HD and PD (Dialysis)www.ncbi.nlm.nih.gov/pubmed/16633970

6.Consumer Satisfaction Questionnaire (PD)www.ncbi.nlm.nih.gov/pubmed/16900092

http://www.ncbi.nlm.nih.gov/pubmed/24840250

https://cahps.ahrq.gov/

http://www.healthcareimprovementscotland.org/previous_resources/

http://www.healthcareimprovementscotland.org/previous_resources/performance_review/renal_patient_survey.aspx




Overview of identified instruments (2)


Specific for renal services – developed locally

7.Bradford Teaching Hospitals (Tx)8.King’s Fund Patient experience survey (Dialysis)

Specific for renal treatment9.Renal Treatment Satisfaction Questionnaire (RRT)

www.ncbi.nlm.nih.gov/pubmed/15754280 10.Good Dialysis Index (HD)

www.nocturnaldialysis.org/good_dialysis_index.htm

Non-disease specific11.National NHS Inpatient survey (hospital care)

www.cqc.org.uk/content/inpatient-survey-201412.WHO Responsiveness scale (general healthcare)

www.who.int/responsiveness/papers/paper21.pdf?ua=1


http://www.nocturnaldialysis.org/good_dialysis_index.htm

http://www.cqc.org.uk/content/inpatient-survey-2014

http://www.who.int/responsiveness/papers/paper21.pdf?ua=1

Summary points


No instrument available to measure patient experience across all RRT modalities developed specifically for CKD patients not on RRT.

Most validated instruments had been validated in one particular healthcare context.

Some aspects of patient experience appeared in the majority of instruments:

Relation with the nephrologist Relation with other dialysis staff

Information provision and decision making Physical Environment

PREM Strategy


The UK Renal Registry (UKRR) and British Kidney Patient Association (BKPA) have developed a national strategy for an annual PREM survey.

The PREM is a survey for all renal units and their satellites to take part in.

The national PREM strategy and data collection aims to:

1. Facilitate benchmarking of kidney patient experience

2. Inform service improvement for individual renal teams

Process


This is a ‘Pilot’ – started with the 52 units in England

Discussed at CD meeting – an appetite for a national CKD PREM

Letters to CD - inviting participation + outlining implementation

PREM tool: 43 questions and currently a hard copy survey for all renal patients, regardless of the type of treatment or where they are receiving it

Suggested 2 week window for PREM tool to be handed out

Renal Unit Guidance – posters + leaflet + 650 surveys to each unit + SAE + box for returns

Returns via courier in box to UKRR

Implementation – what we have learned


• We were unprepared for appetite + enthusiasm!

• A very tight turn around – units needed more preparation time

• Often didn’t read RUG – preferred to call and discuss

• Needed to extend time for returns by 3 weeks

• Wanted to be told what to do rather than look at local needs

• Don’t have an understanding of % of returns against those handed out

• Amount of SAE required – Tx patients

• Electronic options - PV

Newcastle’s experience


• Implementation working group – clinical + patient lead

• Patient volunteers from KPA

• Senior nurses in each area committed to delivery - responsibility

• Whole team engagement – DM excited about returns – housekeeper helped – led by HCA on ward

• Understanding of surveys handed out and return rate – followed up ( too many surveys, don’t hear anything, language barrier)

• In the main patient’s happy to participate

What next - Validation


This is being conducted by University of Hertfordshire

Dr David Wellsted + Dr Janine Hawkins – the study team

Validation working group – Ken Farrington, Sabine Van Der Veer, Paul Bristow, Claire Corps, Karen Thomas, Rachel Gair, Annie Taylor

HRA have evaluated this as service evaluation (not research) so HRA approval / REC not required

Ethical approval sought from University of Hertfordshire Health & Human Sciences Ethical Committee

Validation Process


Aim of PREM: Accurately & reliably measure the experience people with CKD have of care they receive from RU

Aim of Validation: Does the PREM measure what we want it to measure?

Two key aspects of validity are already established:

Face validity (the PREM looks like it is asking the right things of the right people in the right way)

Content Validity (it includes what experts would expect it to)

Validation – What does it entail


PREM Validation Project – two key areas of robustness

Validity (is the PREM measuring what we think it is?)Reliability (are patient responses consistent across the different themes in

the PREM, and over time?)How? Three phases of work…

1. Pilot data analysis

2. Test retest exercise

3. Cognitive interviews

(1) Data Analysis


The team at UH will analyse the pilot dataset (ie, 8,000+ responses from the PREM this summer), including:

1. Construct validity (factor analysis) – what does the clustering of items (sub scales) tell us about the scale (eg are clusters consistent with face validity)

2. Internal reliability (Chronbach’s Alpha) – which items are consistent with overall experience (weaker items can be removed)

3. External Indicators – Eg does PREM unit data align with the Friends and Family data?

4. Normative modelling – assessing a person’s score against a population standard appropriate for that person

Test-retest reliability


Scale stability - Does the PREM measure patient experience consistently, regardless of when a patient answers it?

• Sub sample of 5 renal units in Wales – aiming for 200 responses• Patients complete the PREM twice in a short space of time (2nd weeks of

November and December) • December PREM includes a few questions about any changes in their

life / treatment / circumstances• Scores correlated – closer scores, more reliable PREM• Patients must agree to taking part in ‘doing a PREM more than once a

year’ & have a patient ID number allocated in order to participate (in order that their PREMs can be matched)

(3) Cognitive interviews


Do patients understand the questions in the way we expect them to?

>What does the patient think items are asking for?

>How do they retrieve the relevant information?

>What’s the decision making process involved in selecting an answer?

Interview 16 patients from 4 units in England – or more if there are any parts of the PREM which haven’t been covered

Data Returns


Data Returns (Cont’d)


Feedback + next PREM!


• Overall report and 52 centre level reports available November 2016

• Validation completed February 2017

• 2nd PREM Spring/Summer 2017

Richard FluckClinical Co-Chair Internal Medicine Programme of Care NHS [email protected]

Ron CullenDirectorUK Renal [email protected]

Paul BristowDirector of marketing and communicationsBritish Kidney Patient [email protected]

How to find out more

Karen ThomasThink Kidneys Programme ManagerUK Renal [email protected]

Rachel GairPerson Centred Care FacilitatorUK Renal [email protected]

Sarah EvansThink Kidneys Programme CoordinatorUK Renal [email protected]

Contact Think Kidneys

www.linkedin.com/company/think-kidneyswww.twitter.com/ThinkKidneyswww.facebook.com/thinkkidneyswww.youtube.com/user/thinkkidneyswww.slideshare.net/ThinkKidneyswww.thinkkidneys.nhs.uk

| 33Transforming Participation in Chronic Kidney Disease Rachel Gair

mailto:[email protected]



Date post:	26-Jan-2017
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