Public and professional involvement in a systematic review investigating the impact of occupational therapy on the self-management of rheumatoid arthritis

Introduction: Public and health professional involvement (PHPI) is essential in healthcare research yet uncommonly integrated into systematic reviews. We incorporated and evaluated PHPI in a mixed methods review of occupational therapy for self-management of rheumatoid arthritis (RA). Methods: Public partners were living with or caring for someone with RA. Our steering group comprised two public, two professionals (one occupational therapist, one rheumatologist), and one reviewer who planned the review’s PHPI (August 2021). Involvement was evaluated from public and health professional (PHP) perspectives using a survey and workshops (August–October 2022) exploring reasons for involvement, challenges and learning opportunities. Results: Alongside the steering group, 16 public and 6 professionals were involved throughout the review. Five public refined the search strategy, with three assisting in subsequent review activities. PHPs helped interpret findings during three public ( n = 12) and one professional workshop ( n = 4). Three occupational therapists and one public co-authored (ED) publications. In evaluation, PHPs felt valued and that their involvement was well-integrated. The researchers underestimated the time required for communicating and conducting PHPI in the review. Conclusions: PHPI is worthwhile, feasible and can be integrated within a systematic review. PHP partners considered participation valuable; researchers must prioritise time to prepare and communicate PHPI activities

The Impact of Occupational Therapy on the Self‐Management of Rheumatoid Arthritis: A Mixed Methods Systematic Review

Objective: To determine the impact of occupational therapy (OT) on the self‐management of function, pain, fatigue, and lived experience for people living with rheumatoid arthritis (RA). Methods: Five databases and gray literature were searched up to June 30, 2022. Three reviewers screened titles and abstracts, with two independently extracting and assessing full texts using the Cochrane risk of bias (quantitative) and Critical Appraisal Skills Programme (qualitative) tools to assess study quality. Studies were categorized into four intervention types. Grading of Recommendations, Assessment, Development and Evaluations (GRADE) (quantitative) and GRADE‐ Confidence in Evidence from Reviews of Qualitative research (qualitative) were used to assess the quality of evidence for each intervention type. Results: Of 39 eligible papers, 29 were quantitative (n = 2,029), 4 qualitative (n = 50), and 6 mixed methods (n = 896). Good evidence supports patient education and behavior change programs for improving pain and function, particularly group sessions of joint protection education, but these do not translate to long‐term improvements for RA (>24 months). Comprehensive OT had mixed evidence (limited to home OT and an arthritis gloves program), whereas limited evidence was available for qualitative insights, splints and assistive devices, and self‐management for fatigue. Conclusion: Although patient education is promising for self‐managing RA, no strong evidence was found to support OT programs for self‐managing fatigue or patient experience and long‐term effectiveness. More research is required on lived experience, and the long‐term efficacy of self‐management approaches incorporating OT, particularly timing programs to meet the individual's conditional needs (i.e., early or established RA) to build on the few studies to date

Clinical utility of genetic testing in 201 preschool children with inherited eye disorders

From Springer Nature via Jisc Publications RouterHistory: received 2019-09-23, registration 2019-11-25, accepted 2019-11-25, pub-electronic 2019-12-18, online 2019-12-18, pub-print 2020-04-01Publication status: PublishedAbstract: Purpose: A key property to consider in all genetic tests is clinical utility, the ability of the test to influence patient management and health outcomes. Here we assess the current clinical utility of genetic testing in diverse pediatric inherited eye disorders (IEDs). Methods: Two hundred one unrelated children (0–5 years old) with IEDs were ascertained through the database of the North West Genomic Laboratory Hub, Manchester, UK. The cohort was collected over a 7-year period (2011–2018) and included 74 children with bilateral cataracts, 8 with bilateral ectopia lentis, 28 with bilateral anterior segment dysgenesis, 32 with albinism, and 59 with inherited retinal disorders. All participants underwent panel-based genetic testing. Results: The diagnostic yield of genetic testing for the cohort was 64% (ranging from 39% to 91% depending on the condition). The test result led to altered management (including preventing additional investigations or resulting in the introduction of personalized surveillance measures) in 33% of probands (75% for ectopia lentis, 50% for cataracts, 33% for inherited retinal disorders, 7% for anterior segment dysgenesis, 3% for albinism). Conclusion: Genetic testing helped identify an etiological diagnosis in the majority of preschool children with IEDs. This prevented additional unnecessary testing and provided the opportunity for anticipatory guidance in significant subsets of patients

Adherence to ocular hypotensive therapy: patient health education needs and views on group education

Heather Waterman,1 Lisa Brunton,1 Cecilia Fenerty,2 Jane Mottershead,2 Cliff Richardson,1 Fiona Spencer21School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK; 2Manchester Royal Eye Hospital, Manchester, UKBackground: In this study the authors sought both to understand the health education needs of patients with glaucoma, with particular regard to adherence to glaucoma treatment, and to examine these patients' views of group education.Methods: Using a health promotion approach to health education, 27 qualitative interviews with new and established patients receiving glaucoma treatment were conducted. Health promotion is defined as a way of strengthening people's capacities to control and optimize their own health. The interviews were transcribed and were then analyzed thematically.Results: Nine categories of health education needs were identified from the transcripts: (1) to understand glaucoma; (2) to understand their diagnosis or understand the difficulties in giving a diagnosis; (3) to understand the implications of eye drops, their side effects, and how to renew the eye drops; (4) to feel confident to put in eye drops; (5) to put the condition into perspective – to know how to manage their risk; (6) to be able to ask questions of clinicians; (7) to be able to navigate the health care system; (8) to understand and be able to manage own adherence behavior; and (9) to know where to access other sources of information. The majority of patients had something positive to say about group education, and about half of the patients said they would attend group education if they were offered the opportunity.Conclusion: A health promotion approach identified a wide range of patient-centered health education needs regarding adherence to glaucoma treatment. Group education will be attractive to some patients. Clinicians could use the health education needs identified in this study to guide the development of either individual or group-based educational intervention to improve adherence to glaucoma treatment. However, clinicians need to be aware that when developing a group intervention, attention will need to be given to making the education relevant to the circumstances of each patient.Keywords: glaucoma, patient compliance, treatment compliance, therapy adherence, action researc

The role of occupational therapy for the self‐management of rheumatoid arthritis: A protocol for a mixed methods systematic review

Background: Occupational therapists can support people with rheumatoid arthritis to self‐manage their disease symptoms and engage in daily activities. This protocol reports a review to broaden understanding of what is known about the role of occupational therapy in the self‐management of rheumatoid arthritis. Methods: Studies involving adults with rheumatoid arthritis, having participated in self‐management involving occupational therapy, will be included. Patient involvement will help develop the search strategy by identifying patient‐centred interventions and outcomes to complement those identified by researchers. An electronic search will be performed using several bibliographic databases, including grey literature from subject‐specific, health‐related, and social care databases. Searches will run from the database inception until the date that the search is conducted (December 2021–May 2022). Retrieved studies will be de‐duplicated, and the remaining titles and abstracts will be screened by three reviewers. Full texts of all eligible studies will be independently reviewed by the reviewers to select papers for data extraction and quality assessment. Outcomes are function, pain, fatigue and lived experience. For quantitative studies, data will be synthesised using descriptive statistics in text and tables, whereas for qualitative studies, data will be synthesised using thematic synthesis. Discussion: This review will synthesise current evidence on how occupational therapy can help the self‐management of rheumatoid arthritis. It will include evidence of best practice, including advice, education and training provided by occupational therapists. These findings can inform future research and the selection of strategies to promote quality of life for people with rheumatoid arthritis. Systematic review registration: PROSPERO CRD4202230220

The role of occupational therapy for the self‐management of rheumatoid arthritis: a protocol for a mixed methods systematic review

Background: occupational therapists can support people with rheumatoid arthritis to self-manage their disease symptoms and engage in daily activities. This protocol reports a review to broaden understanding of what is known about the role of occupational therapy in the self-management of rheumatoid arthritis. Methods: studies involving adults with rheumatoid arthritis, having participated in self-management involving occupational therapy, will be included. Patient involvement will help develop the search strategy by identifying patient-centred interventions and outcomes to complement those identified by researchers. An electronic search will be performed using several bibliographic databases, including grey literature from subject-specific, health-related, and social care databases. Searches will run from the database inception until the date that the search is conducted (December 2021–May 2022). Retrieved studies will be de-duplicated, and the remaining titles and abstracts will be screened by three reviewers. Full texts of all eligible studies will be independently reviewed by the reviewers to select papers for data extraction and quality assessment. Outcomes are function, pain, fatigue and lived experience. For quantitative studies, data will be synthesised using descriptive statistics in text and tables, whereas for qualitative studies, data will be synthesised using thematic synthesis. Discussion: this review will synthesise current evidence on how occupational therapy can help the self-management of rheumatoid arthritis. It will include evidence of best practice, including advice, education and training provided by occupational therapists. These findings can inform future research and the selection of strategies to promote quality of life for people with rheumatoid arthritis. Systematic review registration: PROSPERO CRD42022302205.</p

A study to assess the feasibility of undertaking a randomized controlled trial of adherence with eye drops in glaucoma patients

Cliff Richardson,1 Lisa Brunton,1 Nicola Olleveant,1 David B Henson,1 Mark Pilling,1 Jane Mottershead,2 Cecilia H Fenerty,2 Anne Fiona Spencer,2 Heather Waterman1 1School of Nursing, Midwifery and Social Work, University of Manchester, 2Royal Manchester Eye Hospital, Central Manchester Foundation Trust, Manchester, United Kingdom Background: Adherence with therapy could influence the progression of glaucoma and ultimately affect the onset of visual impairment in some individuals. This feasibility study evaluated the measures to be used for a future randomized controlled trial assessing the effects of group-based education on adherence with eye drops. Methods: People diagnosed with glaucoma within the previous 12 months attending a regional ophthalmology clinic in the North West of England were recruited. A two-session education program delivered one week apart had been devised as part of a previous project. A combined adult learning and health needs approach to education was taken. Outcomes measured were knowledge of glaucoma, self-report of adherence, illness perception, beliefs about medicines, patient enablement, and general health (Short Form-12). Adherence was also measured objectively using a Medical Events Monitoring System device. Results: Twenty-six participants consented to undertake the educational program and 19 produced analyzable data. Knowledge of glaucoma, illness perception, beliefs about medicine, and patient enablement all showed statistically significant improvements after education. Mean adherence with eye drops was maintained above 85% before and for 3 months after attendance at the educational program. Self-report exaggerated adherence by at least 10% when compared with the objective Medical Events Monitoring System data, and in fact the kappa agreement was zero. Conclusion: All questionnaires other than the Short Form-12 were considered to be valuable measures and use of a Medical Events Monitoring System device was considered to be an objective surrogate measure for adherence with eye drops. A multicenter, randomized, controlled equivalence trial of group versus individualized education using adherence as the primary outcome is the next step. Keywords: group-based education, glaucoma, adherence, patient complianc