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"Your Experiences of Care in Long-Term Conditions"
Development of a generic patient-centred questionnaire for people with chronic conditions, aiming to capture:
Health care experiences
Quality of care
BSc, MSc, PhD
Department of Primary Care Health Sciences
Elizabeth Gibbons, Advisor
Department of Public Health
Background and Rationale
Improving patient experience
Positive patient experience (Transparency in Outcomes, DH, 2010)
Patient-centred care - putting the patient at the centre of their care
Enhancing QoL for people with LTCs (Equity & Excellence, DH, 2010)
Quality of care remains variable across different LTC (Goodwin et al. 2010)
Suggestion for the development of a measure of quality
Filter applied to analysis
Aspects of care that allow people to live well with health problems, which cannot be fully cured
Methods of Development
Analysis of 100 patient interviews, 5 chronic conditions;
Diabetes type 2
Critical Interpretive Synthesis
Secondary Qualitative Analysis
"Extensive literature review examining recognised health care quality and patient-centred care frameworks to create higher domains of care"
To capture patients' perspective of health care delivery
Thank you for listening!
What do people with LTCs think is important?
What does literature say is important?
Cognitive Debriefing Interviews
Information & Education
Responsiveness to individual needs
Relationship with health professionals
Structure & Process
Access & Availability
Consistency, Continuity & Co-ordination
Outcomes of Care
Maintenance & Control
Competence of health professionals
Rather than going into the surgery and waiting and then having a ten minute appointment you can just have a 2 minute phone call - this is how I am, is it OK to reduce down my medication?
(Patient with asthma)
There were probably really good reasons for my medication change but I sort of wanted to know it, what the reasons were rather than just being given the medication.
(Patient with arthritis)
Really part of this disease is the psychological aspect. If you had a physiotherapist say once a month “Come on”, “How are you doing?”, “What’s going on for you?”, “Why don’t you try this?” It’s much more encouraging to feel that some individual health professional is taking a genuine interest in me.
(Patient with arthritis)
The frustration of seeing a doctor you’re not used to, is the inevitable question “What medication are you taking?” and you sit there thinking, “If you turn back one page, you’ll find that it was all written down the last time I was here."
(Patient with diabetes)
I feel quite lucky that I’ve got a GP that’s allowed me to have some control over my meds. I know the minimum but I can then vary the maximum depending on how I feel.
(Patient with asthma)
Aims & Purpose
Understanding and acceptability
Three rounds, 30-40 minutes/interview
People with LTC & Health professionals
People with LTCs - Thorough and relevant across different conditions and multi-borbidity
Health professionals- relevant and helpful feedback in clinical practice
"Experience of care in LTCs"
Your views and experiences of health care
Recall Period - 12 months
People with LTCs (n=25)
round 1 (n=10)
round 2 (n=15)
round 3 (n=7)
Health professionals (n=10)
round 1 (n=3)
round 2 (n=4)
round 3 (n=3)
Section 1 - "about your LCT", 2 items
Section 2 - "views and experiences of healthcare", 5 items
Section 3 - "Demographics", 14 items
Innovative methodology for development of PROMs and PREMs
Patients as "experts" of their condition whilst recognising individual differences and health care needs
What patients themselves consider important in their care
Bringing together experiences and outcomes of care
Two concepts that are distinct yet interrelated
Good support for content validity for a generic measure for people with LTCs