Title: Outcome & Prognosis of Supported Self-Management in Thumb Base Osteoarthritis
Funder: Health Education England

Abstract: Background Thumb base osteoarthritis (Thumb-OA) occurs in 21-45% of the adult population over 40 and can cause severe pain and difficulty with essential everyday hand use - yet Thumb-OA is under researched compared to other joint sites, such as the knee. NICE care guidelines recommend that those seeking care should receive education and exercises (supported self-management), and, if needed, splints. However, these guidelines are based on research reporting outcomes at three months or less, often excluding those with other hand conditions and co-morbidities. While self-management provided pain relief for about 50%, the remaining individuals did not benefit significantly in terms of pain at three months. Further, there is no research on the patient's experience of care. The aim of this study is to investigate using a mixed methods approach the outcomes, prognosis, and experiences of care in patients receiving a supported self-management programme, and to generate recommendations for optimising care for Thumb-OA.Objectives This research proposes to: Determine the six-month outcomes in a cohort of patients receiving supported self-management. Evaluate patients' experiences of care and determine what factors patients and clinicians perceive contribute to outcome. Identify prognostic factors associated with pain and function outcomes. Generate recommendations for optimising current care of patients. Methods The design will be a prospective longitudinal cohort study linked with a qualitative interview (and focus group) study. Participants will be recruited at six NHS sites, identified from waiting lists, then contacted by letter. For consenting participants baseline assessments will be carried out for measures of pain, function, quality of life and known musculoskeletal prognostic factors. Participants will be included regardless of co-existing hand or systemic conditions; co-morbidities will be documented. Participants will receive a usual-care clinical assessment and a supported self-management package. Follow up assessments will be conducted by survey at three and six months. Selected consenting participants will be invited to participate in semi-structured interviews to explore their experiences of care, and their perceptions of the factors influencing the outcome of care. Timelines for Delivery 0-8 months: Planning and set up of cohort study. 8-22 months: Recruitment of cohort. 14-26 months: Interview and focus group study and analysis. 14-28 months: 6-month data collection of cohort. 29-33 months: Data analysis (Objectives 1 & 3) 34-38 months: Integration of interview and cohort results; generation of recommendations with stakeholder involvement. 26-40 months: Writing up, dissemination, preparation of thesis submission and viva. Anticipated Impact and Dissemination This study will provide outcome data on NHS care for patients with Thumb-OA, with a longer follow up than is currently available. Recommendations will be made to improve care based on outcomes, patient experience, and prognostic factor analysis. Achieving quality self-management for the large numbers who require care will support people to manage their pain while staying independent and active. The results will inform future trials to investigate the development and efficacy of targeted interventions and new care pathways for Thumb-OA. The results will be shared through scientific papers, conferences, charities, social media, website, primary care networks, and newsletters to involved participants.

Lay abstract: Osteoarthritis (OA) is the most common cause of joint pain in adults, and at the base of the thumb (Thumb-OA) affects 21-45% of those over the age of 40, becoming more common as people age. It affects a sufferer's ability to work, to be independent, to care for others and affects mental wellbeing. Those seeking treatment complain of severe pain, and difficulty in completing simple everyday tasks for example carrying things, opening packets and dressing.A core treatment delivered by NHS hand therapists for Thumb-OA is education about the condition and how to manage it and exercises (this is called supported self-management). Studies on supported self-management only follow people for three months or less and don't include those with other hand or health problems. Patients with Thumb-OA involved in developing this research plan feel that this is insufficient information on which to base the care of a long-term condition.There is little research into the patient experience of current care and the benefits of offering additional emotional support, not purely physical support. Whilst research has shown supported self-management is helpful for pain relief, there is an equal number of those with Thumb-OA who do not respond to these treatments. Understanding why some respond and some do not, will help us significantly improve outcomes in a far greater proportion of those suffering with the condition. In all patients with Thumb-OA, receiving treatment and willing to participate, this research will: Record changes in symptoms, quality of life, and level of participation. Record the care provided by a supported self-management programme. Follow participants for six months after treatment began, twice the period currently studied. Evaluate the experiences of care and identify what patients and therapists feel affect outcome by interviewing patients and completing focus groups with therapists. Identify characteristics influencing the outcome of treatment by an analysis which will describe the nature and strength of the relationship between different characteristics and outcome (using information gathered in step 1). Based on the findings from steps 1-3, develop recommendations for improving care for people with thumb base OA with the help of a focus group of patients, therapists, and clinicians.The benefits of this research are wide-ranging. This is a condition that affects a lot of people and is life changing totally disrupting a sufferer's ability to be physically active and confident in using their hand, making simple tasks become overwhelming; and therefore, research is vital to result in more positive outcomes. Learning from the experience of care, being able to determine who benefits from a supported self-management programme and identifying factors that could indicate further new treatments may be of benefit will identify ways to improve care for this condition. Public and patients with Thumb-OA have contributed to the development of this research plan, their input has: Broadened the scope of this research to include the experience of care; Supported the longer follow up time of six months and the inclusion of all patients presenting with this condition; Confirmed the relevance of the outcome measures proposed; and Recommended ways to support patients to be involved as participants, and for building patient involvement into the proposed research.The aim of this research is to improve care and outcomes. The findings will be available to numerous individuals and groups through scientific papers, conferences, charities, social media, a website, primary care networks, and newsletters to all participants.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MUSCULOSKELETAL