Understanding Health Services Delivery for Fibromyalgia

A Realist-informed Investigation of the Organisation and Delivery of Health and Social Care Services for People With Fibromyalgia Living in the UK

This research study aims to:

i) Explore and understand how health and social care for people with fibromyalgia living in the UK is organised and delivered.

ii) Identify models of practice to inform co-design of new care pathways for people with fibromyalgia living in the UK.

To do this, up to ten UK-based case studies will be conducted in total: at least one each in England, Scotland and Wales. Interviews will be conducted with approximately 10 participants per case study, for a total of 100 participant interviews. Qualitative observations (in-person or on-line) will be conducted with a similar number of people (total 100 participants). Online focus groups will also be carried out with approximately 6 to 8 participants per group (up to ten groups for a total 60-80 participants). Participants will include healthcare professionals (for example, doctors, nurses, allied health professionals), social care practitioners (for example, social prescribers), service delivery managers, commissioners and other individuals involved in the organisation and delivery of health and social care services for people with fibromyalgia living in the UK.

Study Overview

• Status: Completed
• Conditions: Fibromyalgia; Fibromyalgia, Primary; Fibromyalgia, Secondary

• Study Type: Observational
• Enrollment (Actual): 65

Contacts and Locations

Study Locations

• United Kingdom
  • London, United Kingdom
    • King's College Hospital NHS Foundation Trust

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: Yes

• Sampling Method: Non-Probability Sample

Study Population

Participants will include healthcare professionals (for example, doctors, nurses, allied health professionals), social care practitioners (for example, social prescribers), service delivery managers, commissioners and other individuals involved in the organisation and delivery of health and social care services for people with fibromyalgia living in the UK.

Description

Inclusion Criteria:

• NHS and/or non-NHS organisations in the UK providing health and social care to people with fibromyalgia.
• Health and social care professionals identifying and or providing support for people with fibromyalgia in one of the ten case studies.
• NHS/non-NHS staff influential in the organisation and/or delivery of health and social care to people with fibromyalgia in one of the ten case studies, for example, service managers, professional service leads, commissioners.

Exclusion Criteria:

• NHS/non-NHS organisations in the UK not providing health or social care to people with fibromyalgia.
• NHS/non-NHS staff who are not able to communicate sufficiently well in English to participate effectively.

Study Plan

How is the study designed?

Design Details

• Observational Models: Ecologic or Community
• Time Perspectives: Cross-Sectional

Number of groups / cohorts

10

Cohorts and Interventions

Group / Cohort
Case study #1; There will be no intervention. There will be 10 separate case studies, to identify how care for fibromyalgia is being delivered in each case study, and to identify models of care.
Case study #2; There will be no intervention. There will be 10 separate case studies, to identify how care for fibromyalgia is being delivered in each case study, and to identify models of care.
Case study #3; There will be no intervention. There will be 10 separate case studies, to identify how care for fibromyalgia is being delivered in each case study, and to identify models of care.
Case study #4; There will be no intervention. There will be 10 separate case studies, to identify how care for fibromyalgia is being delivered in each case study, and to identify models of care.
Case study #5; There will be no intervention. There will be 10 separate case studies, to identify how care for fibromyalgia is being delivered in each case study, and to identify models of care.
Case study #6; There will be no intervention. There will be 10 separate case studies, to identify how care for fibromyalgia is being delivered in each case study, and to identify models of care.
Case study #7; There will be no intervention. There will be 10 separate case studies, to identify how care for fibromyalgia is being delivered in each case study, and to identify models of care.
Case study #8; There will be no intervention. There will be 10 separate case studies, to identify how care for fibromyalgia is being delivered in each case study, and to identify models of care.
Case study #9; There will be no intervention. There will be 10 separate case studies, to identify how care for fibromyalgia is being delivered in each case study, and to identify models of care.
Case study #10; There will be no intervention. There will be 10 separate case studies, to identify how care for fibromyalgia is being delivered in each case study, and to identify models of care.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Model of care	For each case study, how health and social care is being delivered will be the main outcome.	By February 2022

Collaborators and Investigators

• Sponsor: University of Aberdeen

Study record dates

Study Major Dates

• Study Start (Actual): January 21, 2021
• Primary Completion (Actual): August 31, 2023
• Study Completion (Actual): August 31, 2023

Study Registration Dates

• First Submitted: February 22, 2021
• First Submitted That Met QC Criteria: February 22, 2021
• First Posted (Actual): February 25, 2021

Study Record Updates

• Last Update Posted (Actual): October 23, 2023
• Last Update Submitted That Met QC Criteria: October 19, 2023
• Last Verified: October 1, 2023

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Nervous System Diseases; Musculoskeletal Diseases; Rheumatic Diseases; Muscular Diseases; Neuromuscular Diseases; Fibromyalgia; Myofascial Pain Syndromes
• Other Study ID Numbers: 02/068/20

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No