|Name||Role & Organisation|
|Fergus Caskey||Medical Director, UK Renal Registryemail@example.com|
|Claire Corps||Patient Co-Chairfirstname.lastname@example.org|
|Robert Elias||Consultant Kidney Doctor, King’s College Hospital NHS Foundation Trustemail@example.com|
|Dr James Hollinshead||Principal Analyst, Public Health England|
|Currie Moore||PhD Student, University of Manchesterfirstname.lastname@example.org|
|Dr Ramla Mumtaz||Kidney Doctor/ Associate specialist in Renal Medicine, Bradford Teaching Hospitals NHS Foundation Trust|
|Peter Naish||Patient Representativeemail@example.com|
|Alice Smith||Hon Senior Lecturer in Exercise as Medicine, University of Leicesterfirstname.lastname@example.org|
|Sabine van der Veer||Research Fellow, University of Manchesteremail@example.com|
|Paul Bristow||Kidney Care UKfirstname.lastname@example.org|
The Measurement workstream developed and tested methods for collecting information from patients whose renal units were involved in the Transforming Participation in Chronic Kidney Disease programme. This included information on patients’ involvement in their care, their symptoms and quality of life, and their experiences with the care and service they receive in their renal unit.
The data gathered provides a picture of how actively involved patients are in managing their kidney disease, and how this affects their quality of life. Having these data will help to determine which interventions work well for engaging patients to become more involved in their healthcare.
The data was gathered using a tool known as ‘Your Health Survey’ and a national ‘Patient Reported Experience Measure’.
We recognise that the activities for the Measurement workstream relied on the following:
- The available facilities to collect renal data in England, including the UK Renal Registry, PatientView, and local renal IT systems
- Support for the renal units to set up and monitor data collection activities
How data was collected
The Measurement workstream selected a number of existing questionnaires to collect the relevant information. The questionnaires are abbreviated to the initials in their name as follows:
This is a well-researched and validated questionnaire to measure the knowledge, skill and confidence someone has in managing his or her health and care. The PAM score for an individual is worked out based on their responses to 13 questions. It places the patient at one of four levels of activation, each of which provides insight into a range of their health-related characteristics, including attitudes, motivators, behaviours and outcomes. The four levels of activation are:
Level 1: Individuals tend to be passive and feel overwhelmed by managing their own health. They may not understand their role in the care process.
Level 2: Individuals may lack the knowledge and confidence to manage their health.
Level 3: Individuals appear to be taking action to manage their health but may still lack the confidence and skill to support their behaviours.
Level 4: Individuals have adopted many of the behaviours needed to support their health but may not be able to maintain them in the face of life stressors.
CSPAM – Clinical Support for Patient Activation Measure
This questionnaire assesses the views and attitudes of the renal team about helping their patients to self-manage their condition. The CSPAM is worked out based on clinicians’ responses to 23 questions. The results will help renal teams to understand whether and how they could do better in terms of supporting people to taking an active role in their care.
PROMs reflect a person’s perspective on his own health status or health-related quality of life. From the many validated PROM questionnaires that are available, the Measurement workstream selected the following two:
- EQ-5D-5L; a brief questionnaire with 5 questions to assess a person’s overall health. For example, by asking how much problems someone has to perform his usual activities. It also asks people to self-rate their health by putting a number between 0 (worst imaginable health state) and 100 (best imaginable health state).
- POS-S Renal; 11 questions on the most common symptoms renal patients experience plus additional items on concerns beyond symptoms, such as information needs, practical issues, and family anxiety.
PREM measures a kidney patient’s experience with renal services. This includes things such as patients being treated with respect by the renal team, the renal team being responsive to patients’ concerns and problems, and whether the renal unit is clean and welcoming. The main purpose of the PREM is to help renal units to improve their service according to patient needs.
As no suitable PREM questionnaires were available at the start of this programme, the Measurement workstream has developed a new one for the Transforming Participation in Chronic Kidney Disease programme. More information can be found via the UK Renal Registry website here.