Public Involvement Representatives Research Articles

The economic impact of living with a rare disease for children and their families: a scoping review protocol.

Rare diseases are an often chronic, progressive and life-limiting group of conditions affecting more than 30 million people in Europe. These diseases are associated with significant direct and indirect costs to a spectrum of stakeholders, ranging from individuals and their families to society overall. Further quantitative research on the economic cost for children and their families living with a rare disease is required as there is little known on this topic. This scoping review aims to document the extent and type of evidence on the economic impacts of living with a rare disease for children and their families. This scoping review will follow the PRISMA-ScR and Joanna Briggs Institute guidelines and follow the six-stage methodology for scoping reviews: (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data, (5) collating, summarising and reporting results and (6) knowledge user consultation. Key inclusion criteria have been developed according to the Population-Concept-Context (PCC) framework. The databases EconLit, ABI/Inform, MEDLINE, PubMed, CINAHL, and Scopus will be searched for possible articles for inclusion. Two independent reviewers will screen titles and abstracts of potential articles using a dual review process to ensure all relevant studies are included. All included articles will be assessed using a validated quality appraisal tool. A panel of patient and public involvement representatives experiencing rare diseases and knowledge users will validate the review results. This scoping review will map the current literature on the economic impact of paediatric rare diseases to understand how these impacts affect children living with rare diseases and their families. This evidence has the potential to influence policy and future research in this area and will support further research on the economic impact of rare diseases on families.

REMOTE-ILD study: Description of the protocol for a multicentre, 12-month randomised controlled trial to assess the clinical and cost-effectiveness of remote monitoring of spirometry and pulse oximetry in patients with interstitial lung disease

IntroductionRemote monitoring of home physiological measurements has been proposed as a solution to support patients with chronic diseases as well as facilitating virtual consultations and pandemic preparedness for the future....

The economic impact of living with a rare disease for children and their families: a scoping review protocol

Background: Rare diseases are an often chronic, progressive and life-limiting group of conditions affecting more than 30 million people in Europe. These diseases are associated with significant direct and indirect costs to a spectrum of stakeholders, ranging from individuals and their families to society overall. Further quantitative research on the economic cost for children and their families living with a rare disease is required as there is little known on this topic. This scoping review aims to document the extent and type of evidence on the economic impacts of living with a rare disease for children and their families. Methods: This scoping review will follow the PRISMA-ScR and Joanna Briggs Institute guidelines and follow the six-stage methodology for scoping reviews: (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data, (5) collating, summarising and reporting results and (6) knowledge user consultation. Key inclusion criteria have been developed according to the Population-Concept-Context (PCC) framework. The databases EconLit, ABI/Inform, MEDLINE, PubMed, CINAHL, and Scopus will be searched for possible articles for inclusion. Two independent reviewers will screen titles and abstracts of potential articles using a dual review process to ensure all relevant studies are included. All included articles will be assessed using a validated quality appraisal tool. A panel of patient and public involvement representatives experiencing rare diseases and knowledge users will validate the review results. Conclusions: This scoping review will map the current literature on the economic impact of paediatric rare diseases to understand how these impacts affect children living with rare diseases and their families. This evidence has the potential to influence policy and future research in this area and will support the future development of a cost-minimal intervention prototype to address the economic impact for families as part of this doctoral project.

Understanding the lived experience of chronic pain: A systematic review and synthesis of qualitative evidence syntheses.

Although multiple measures of the causes and consequences of chronic non-cancer pain (CNCP) are available and can inform pain management, no quantitative summary of these measures can describe the meaning of pain for a patient. The lived experience of pain tends to be a blind spot in pain management. This study aimed to: (1) integrate qualitative research investigating the lived experience of a range of CNCP conditions; (2) establish common qualitative themes in CNCP experience; and (3) evaluate the relevance of our results through a survey questionnaire based on these themes, administered across the United Kingdom. Four bibliographic databases were searched from inception to February 2021 to identify Qualitative Evidence Syntheses (QES) that investigated the lived experience of CNCP and its impact on everyday life and activities. Themes and trends were derived by thematic qualitative analysis in collaboration with two patient and public involvement representatives who co-created twenty survey statements. The survey was developed for testing the QES themes for validity in people living with pain. The research team identified and screened 1323 titles, and considered 86 abstracts, including 20 in the final review. Eight themes were developed from the study findings: (1) my pain gives rise to negative emotions; (2) changes to my life and to myself; (3) adapting to my new normal; (4) effects of my pain management strategies; (5) hiding and showing my pain; (6) medically explaining my pain; (7) relationships to those around me; and (8) working while in pain. Each theme gave rise to one or two survey questions. The survey was shared with members of the UK pain community over a 2-week period in November 2021, and was completed by 1219 people, largely confirming the above themes. This study provides a validated summary of the lived experience of CNCP. It highlights the adverse nature, complications, and consequences of living with CNCP in the UK and the multiple shortcomings in the ways in which pain is addressed by others in the UK. Our findings are consistent with published meta-ethnographies on chronic non-malignant musculoskeletal pain and chronic low-back pain. Despite the underrepresentation of qualitative research in the pain literature compared to quantitative approaches, for understanding the complexity of the lived experience of pain, qualitative research is an essential tool.

Evidence-based medicine needs patient and public involvement to remain relevant: A proposal for a new curriculum

IntroductionPublic partnerships, a route to sharing expertise, networks and resources anchored in the United Nations Sustainable Development Goals, has been championed by multiple stakeholders. ObjectiveTo propose a new evidence-based medicine (EBM) curriculum for harnessing patient and public expertise to ensure that EBM teaching and learning can become more relevant and impactful. MethodsA curriculum development group comprising of EBM teachers, patient and public involvement representatives, clinicians, clinical epidemiologists, public health experts and educationalists, with experience of delivering and evaluating face-to-face and online EBM courses across many countries and continents, prepared a new EBM course. ResultsA student-centred, problem-based and clinically integrated course for teaching and learning EBM was developed. In the spirit of shared decision-making, practitioners can learn to support patients, articulate their perspectives, recognise the need for their contribution and ensure community involvement when generating and applying evidence. With end users in mind, the application of research findings, delivery of care and EBM effectiveness in the workplace would carry increased priority. ConclusionsEmbracing patients as EBM collaborators can help deliver cognitive diversity and inspire different ways of thinking and working. Adopting the proposed approach in EBM education lays the foundations for a joint practitioner–patient partnership to ask, acquire, appraise and apply EBM in a more holistic context which will strengthen the EBM proposition.

The Rapid Adaptation and Optimisation of a Digital Behaviour-Change Intervention to Reduce the Spread of COVID-19 in Schools.

The rapid transmission of COVID-19 in school communities has been a major concern. To ensure that mitigation systems were in place and support was available, a digital intervention to encourage and facilitate infection-control behaviours was rapidly adapted and optimised for implementation as a whole-school intervention. Using the person-based approach, ‘Germ Defence’ was iteratively adapted, guided by relevant literature, co-production with Patient and Public Involvement representatives, and think-aloud interviews with forty-five school students, staff, and parents. Suggested infection-control behaviours deemed feasible and acceptable by the majority of participants included handwashing/hand-sanitising and wearing a face covering in certain contexts, such as crowded public spaces. Promoting a sense of collective responsibility was reported to increase motivation for the adoption of these behaviours. However, acceptability and willingness to implement recommended behaviours seemed to be influenced by participants’ perceptions of risk. Barriers to the implementation of recommended behaviours in school and at home primarily related to childcare needs and physical space. We conclude that it was possible to rapidly adapt Germ Defence to provide an acceptable resource to help mitigate against infection transmission within and from school settings. Adapted content was considered acceptable, persuasive, and accessible.

A community jury study exploring the public acceptability of using risk stratification to determine eligibility for cancer screening.

IntroductionUsing risk stratification to determine eligibility for cancer screening is likely to improve the efficiency of screening programmes by targeting resources towards those most likely to benefit. We aimed to explore the implications of this approach from a societal perspective by understanding public views on the most acceptable stratification strategies.MethodsWe conducted three online community juries with 9 or 10 participants in each. Participants were purposefully sampled by age (40–79 years), sex, ethnicity, social grade and English region. On the first day, participants were informed of the potential benefits and harms of cancer screening and the implications of different ways of introducing stratification using scenarios based on phenotypic and genetic risk scores. On the second day, participants deliberated to reach a verdict on the research question, ‘Which approach(es) to inviting people to screening are acceptable, and under what circumstances?’ Deliberations and feedback were recorded and analysed using thematic analysis.ResultsAcross the juries, the principle of risk stratification was generally considered to be an acceptable approach for determining eligibility for screening. Disregarding increasing capacity, the participants considered it to enable efficient resource allocation to high‐risk individuals and could see how it might help to save lives. However, there were concerns regarding fair implementation, particularly how the risk assessment would be performed at scale and how people at low risk would be managed. Some favoured using the most accurate risk prediction model whereas others thought that certain risk factors should be prioritized (particularly factors considered as non‐modifiable and relatively stable, such as genetics and family history). Transparently justifying the programme and public education about cancer risk emerged as important contributors to acceptability.ConclusionUsing risk stratification to determine eligibility for cancer screening was acceptable to informed members of the public, particularly if it included risk factors they considered fair and when communicated transparently.Patient or Public ContributionTwo patient and public involvement representatives were involved throughout this study. They were not involved in synthesizing the results but contributed to producing study materials, co‐facilitated the community juries and commented on the interpretation of the findings and final report.

Providing pharmacy support to housebound patients: learning from the COVID-19 pandemic

IntroductionHousebound patients may face challenges to their medicines management due to reduced household mobility and potential lack of access to healthcare services. Previous literature has explored the medication-related needs of housebound patients from pharmacists’ perspectives (1-2). However little work has focussed on the patient/family perspective. In this study, we used data obtained from those staying at home as much as possible during the COVID-19 pandemic to fill this gap.AimTo explore home medicine practices and safety for people who were housebound during the COVID19 pandemic and to create guidance, from the patient/family perspective, for enabling pharmacists to facilitate safe medicine practices for this population.MethodsInterviews were carried out with people who were taking at least one long term medication and met the criteria for ‘shielding’ and/or were over 70 years of age during the first wave of the COVID-19 pandemic in the UK and/or their family carers. Respondents were recruited through patient and public involvement representatives, the research team’s networks, and support groups. Potential participants were approached via personal contact and social media. Interviews were conducted by telephone or video conferencing and participants asked about their medicines management while staying at home. Inductive thematic analysis was carried out. Patient and public involvement representatives were involved in the data analysis alongside the researchers.ResultsFifty people were interviewed (16 males, 34 females; mean age 68 years, range 26–93 years). Interview data suggested diversity of experiences of medicines management while staying at home. Some respondents reported no or little change, others an initial crisis followed by re-stabilisation, and others that the pandemic was a tipping point, exacerbating underlying challenges and having negative effects on their health and wellbeing. Medicine safety issues reported included omitted doses and less-effective formulations being used. Participants also described experiencing high levels of anxiety related to obtaining medicines, monitoring medicines and feeling at risk of contracting COVID-19 while accessing medicine-related healthcare services. Key factors identified as facilitating a smooth transition included patients’ own agency, support from family, friends and community, good communication with pharmacy staff, continuity of pharmacy services and synchronisation of medicines supply so that a maximum of one collection/delivery was required each month.ConclusionThe study findings that we have presented relate to the UK only; this may limit the generalisability of our findings to other countries. Findings from Ireland are in the process of being analysed and will provide a basis of comparison. In addition, more females took part than males, despite efforts to address this. However, our findings suggest pharmacy staff can support medicines management for people who are housebound by synchronisation of medicines supply, delivering medicines where possible, developing/raising awareness of alternative means of communication, providing continuity of pharmacy services and signposting any community support available.References(1) Kayyali R, Funnell G, Harrap N, Patel A. Can community pharmacy successfully bridge the gap in care for housebound patients? Research in Social and Administrative Pharmacy 2019;15:425-439.(2) Latif A, Mandane B, Anderson E, Barraclough C, Travis S. Optimizing medicine use for people who are homebound: an evaluation of a pilot domiciliary Medicine Use Review (dMUR) service in England. Integr Pharm Res Pract 2018;7:33-40.

Supporting sAFE and GradUAl ReDuctIon of loNG-term BenzodiaZepine Receptor Agonist uSe: development of the SAFEGUARDING-BZRAs toolkit using a co-design approach

Abstract Introduction Long-term benzodiazepine receptor agonist (BZRA) use (>3 months) persists worldwide and poses risks of harm. Effective interventions are needed to address this issue. Aim To develop an intervention to support discontinuation of long-term benzodiazepine receptor agonist (BZRA) use. Methods The intervention development process built on previous qualitative work that used the Theoretical Domains Framework (TDF) to explore perceived barriers and facilitators to discontinuing long-term BZRA use (1). A co-design approach was used whereby lay individuals and professionals worked as equals during the research process based on principles of authentic participation and collaboration (2). The co-design team included five ‘experts by lived experience’ with experience of long-term BZRA use who previously provided input on other related work as patient and public involvement representatives or responded to an expression of interest call on social media. Two online co-design team meetings were held. During the first meeting, a summary of previous findings was presented together with a long-list of behaviour change techniques (BCTs) generated using established mapping matrices in which BCTs were reliably allocated to the TDF. Each team member independently documented their decision as to whether each BCT should be included in a short-list for potential inclusion in the final intervention using online polling software. The a priori decision rule was that 70% of team members had to agree regarding the inclusion/exclusion of a BCT. All other BCTs were then discussed at a follow-up meeting. A finalised list of BCTs for inclusion in the intervention was agreed at the second meeting using a consensus-based approach involving the same decision rule. Potential ways in which BCTs could be operationalised were then discussed. Results Thirty BCTs were discussed and six BCTs were excluded. For example, team members recommended avoiding ‘Social comparison’ as individual circumstances and experiences of discontinuation and associated withdrawal symptoms are unique and not directly comparable. Given the number of included BCTs, the co-design team recommended presenting them as a toolkit. The SAFEGUARDING-BZRAs (Supporting sAFE and GradUAl ReDuctIon of loNG-term BenzodiaZepine Receptor Agonist uSe) toolkit comprises 24 BCTs: ‘Goal setting (behaviour)’, ‘Review behaviour goal(s)’, ‘Review outcome goal(s)’, ‘Feedback on behaviour’, ‘Self-monitoring of behaviour’, ‘Social support (practical)’, ‘Social support (emotional)’, ‘Information about health consequences’, ‘Monitoring of emotional consequences’, ‘Information about emotional consequences’, ‘Prompts/cues’, ‘Habit reversal’, ‘Graded tasks’, ‘Pros and cons’, ‘Comparative imagining of future outcomes’, ‘Social reward’, ‘Self-reward’, ‘Reduce negative emotions’, ‘Distraction’, ‘Adding objects to the environment’, ‘Body changes’, ‘Verbal persuasion about capability’, ‘Focus on past success’ and ‘Credible source’. The toolkit includes recommendations targeted at primary care-based clinicians for operationalising each BCT to support BZRA discontinuation. Conclusion The SAFEGUARDING-BZRAs toolkit has been developed using a systematic, theory-based approach that addresses identified limitations of previous research (e.g. lack of detailed intervention description). In terms of limitations, it is possible that a different group of individuals may have developed a different type of intervention. To overcome this, a priori decision rules were used for decision making. Further research is needed to assess the toolkit’s usability and acceptability by service users and clinicians. References (1) Lynch et al. Health Expect. [in press] DOI: 10.1111/hex.13392. (2) O’Donnell et al. BMC Health Serv Res. 2019;19(1):797

Optimising an intervention to support home-living older adults at risk of malnutrition: a qualitative study

BackgroundIn the UK, about 14% of community-dwelling adults aged 65 and over are estimated to be at risk of malnutrition. Screening older adults in primary care and treating those at risk may help to reduce malnutrition risk, reduce the resulting need for healthcare use and improve quality of life. Interventions are needed to raise older adults’ risk awareness, offer relevant and meaningful strategies to address risk and support general practices to deliver treatment and support.MethodsUsing the Person-based Approach and input from Patient and Public Involvement representatives, we developed the ‘Eat well, feel well, stay well’ intervention. The intervention was optimised using qualitative data from think aloud and semi-structured process evaluation interviews with 23 and 18 older adults respectively. Positive and negative comments were extracted to inform rapid iterative modifications to support engagement with the intervention. Data were then analysed thematically and final adjustments made, to optimise the meaningfulness of the intervention for the target population.ResultsParticipants’ comments were generally positive. This paper focuses predominantly on participants’ negative reactions, to illustrate the changes needed to ensure that intervention materials were optimally relevant and meaningful to older adults. Key factors that undermined engagement included: resistance to the recommended nutritional intake among those with reduced appetite or eating difficulties, particularly frequent eating and high energy options; reluctance to gain weight; and a perception that advice did not align with participants’ specific personal preferences and eating difficulties. We addressed these issues by adjusting the communication of eating goals to be more closely aligned with older adults’ beliefs about good nutrition, and acceptable and feasible eating patterns. We also adjusted the suggested tips and strategies to fit better with older adults’ everyday activities, values and beliefs.ConclusionsUsing iterative qualitative methods facilitated the identification of key behavioural and contextual elements that supported engagement, and issues that undermined older adults’ engagement with intervention content. This informed crucial revisions to the intervention content that enabled us to maximise the meaningfulness, relevance and feasibility of the key messages and suggested strategies to address malnutrition risk, and therefore optimise engagement with the intervention and the behavioural advice it provided.

Understanding GPs' views and experiences of using clinical prediction rules in the management of respiratory infections: a qualitative study.

BackgroundRespiratory tract infections (RTIs) account for 60% of antibiotic prescribing in primary care. Several clinical prediction rules (CPRs) have been developed to help reduce unnecessary prescribing for RTIs, but there is a lack of studies exploring whether or how these CPRs are being used in UK general practice.AimTo explore UK GPs’ views and experiences with regards to RTI CPRs, and to identify barriers and facilitators to their use in practice.Design & settingA qualitative analysis of interviews with in-hours GPs working in the South and South West of England.MethodSemi-structured qualitative telephone interviews were conducted, digitally recorded, transcribed verbatim, and analysed using an inductive thematic approach. Patient and public involvement representatives contributed to study design and interpretation of findings.ResultsThirty-two GPs were interviewed. Some CPRs were more commonly used than others. Participants used CPRs to facilitate patient—clinician discussion, confirm and support their decision, and document the consultation. GPs also highlighted concerns including lack of time, inability of CPRs to incorporate patient complexity, a shift in focus from the patient during consultations, and limited use in remote consultation (during the COVID-19 pandemic).ConclusionThis study highlights the need for user-friendly CPRs that are readily integrated into computer systems, and easily embedded into routine practice to complement clinical decision-making. Existing CPRs need to be validated for other populations where demographics and clinical characteristics may differ, as well different settings including remote consultations and self-assessment.

Challenges of developing, conducting, analysing and reporting a COVID-19 study as the COVID-19 pandemic unfolds: an online co-autoethnographic study

ObjectivesTo capture the complexities and unique experience of a newly formed multidisciplinary and multicentre research team developing and deploying a COVID-19 study and to identify lessons learnt.DesignCo-autoethnographic study.SettingStaff at two...

A multi-stakeholder approach to the co-production of the research agenda for medicines optimisation

BackgroundUp to 50% of medicines are not used as intended, resulting in poor health and economic outcomes. Medicines optimisation is ‘a person-centred approach to safe and effective medicines use, to ensure people obtain the best possible outcomes from their medicines’. The purpose of this exercise was to co-produce a prioritised research agenda for medicines optimisation using a multi-stakeholder (patient, researcher, public and health professionals) approach.MethodsA three-stage, multiple method process was used including: generation of preliminary research questions (Stage 1) using a modified Nominal Group Technique; electronic consultation and ranking with a wider multi-stakeholder group (Stage 2); a face-to-face, one-day consensus meeting involving representatives from all stakeholder groups (Stage 3).ResultsIn total, 92 research questions were identified during Stages 1 and 2 and ranked in order of priority during stage 3. Questions were categorised into four areas: ‘Patient Concerns’ [e.g. is there a shared decision (with patients) about using each medicine?], ‘Polypharmacy’ [e.g. how to design health services to cope with the challenge of multiple medicines use?], ‘Non-Medical Prescribing’ [e.g. how can the contribution of non-medical prescribers be optimised in primary care?], and ‘Deprescribing’ [e.g. what support is needed by prescribers to deprescribe?]. A significant number of the 92 questions were generated by Patient and Public Involvement representatives, which demonstrates the importance of including this stakeholder group when identifying research priorities.ConclusionsA wide range of research questions was generated reflecting concerns which affect patients, practitioners, the health service, as well the ethical and philosophical aspects of the prescribing and deprescribing of medicines. These questions should be used to set future research agendas and funding commissions.

Exploring the sustainability of quality improvement interventions in healthcare organisations: a multiple methods study of the 10-year impact of the ‘Productive Ward: Releasing Time to Care’ programme in English acute hospitals

BackgroundThe ‘Productive Ward: Releasing Time to Care’ programme is a quality improvement (QI) intervention introduced in English acute hospitals a decade ago to: (1) Increase time nurses spend in direct...

Development and delivery of the BOOST (Better Outcomes for Older adults with Spinal Trouble) intervention for older adults with neurogenic claudication

Neurogenic claudication due to spinal stenosis is a common cause of disability in older adults. Conservative treatments are a favourable treatment option. This paper describes the development and delivery of the BOOST (Better Outcomes for Older adults with Spinal Trouble) intervention, a physiotherapist-delivered physical and psychological intervention for the management of neurogenic claudication in older adults. The BOOST intervention is being tested in a multi-centre, randomised controlled trial in UK National Health Service Trusts; delivered by physiotherapists registered with the Health and Care Professionals Council. Participants are aged 65 years or older, registered with a primary care practice, and report symptoms consistent with neurogenic claudication. Intervention content and delivery was initially informed by clinical and patient experts, research evidence, and behaviour change guidelines; and refined following an intervention development day attended by researchers, health professionals, and Patient and Public Involvement representatives. The BOOST intervention comprises 12 group sessions, promoting sustained adherence with a long term home and physical activity programme. Each session includes education and group discussion, individually tailored exercises, and walking. Initial exercise levels are set at a one-to-one assessment. Continued home exercise adherence and increased physical activity following completion of the sessions is facilitated through support telephone calls.Trial registration ISRCTN12698674.

Assessing quality of care for the dying from the bereaved relatives’ perspective: Using pre-testing survey methods across seven countries to develop an international outcome measure

Background: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives. Aim: The aim of this study is to translate and pre-test the ‘Care Of the Dying Evaluation’ (CODETM) questionnaire across seven participating countries prior to conducting an evaluation of current quality of care. Design: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising a modified nominal group technique to establish a common, core international version of CODE. Setting/participants: Hospital settings: for each country, at least five patient and public involvement representatives, selected by purposive sampling, fed back on CODETM questionnaire; and at least five bereaved relatives to cancer patients undertook cognitive interviews. Feedback was collated and categorised into themes relating to clarity, recall, sensitivity and response options. Structured consensus meeting held to determine content of international CODE (i-CODE) questionnaire. Results: In total, 48 patient and public involvement representatives and 35 bereaved relatives contributed to the pre-testing stages. No specific question item was recommended for exclusion from CODETM. Revisions to the demographic section were needed to be culturally appropriate. Conclusion: Patient and public involvement and bereaved relatives’ perceptions helped enhance the face and content validity of i-CODE. A common, core international questionnaire is now developed with key questions relating to quality of care for the dying.

Accessibility of online self-management support websites for people with osteoarthritis: A text content analysis.

This study assessed accessibility of online self-management support webpages for people with osteoarthritis by considering readability of text and inclusion of images and videos. Eight key search terms developed and agreed with patient and public involvement representatives were entered into the Google search engine. Webpages from the first page of Google search results were identified. Readability of webpage text was assessed using two standardised readability indexes, and the number of images and videos included on each webpage was recorded. Forty-nine webpages met the inclusion criteria and were assessed. Only five of the webpages met the recommended reading level for health education literature. Almost half (44.9%) of webpages did not include any informative images to support written information. A minority of the webpages (6.12%) included relevant videos. Information provided on health webpages aiming to support patients to self-manage osteoarthritis may not be read, understood or used effectively by many people accessing it. Recommendations include using accessible language in health information, supplementing written information with visual resources and reviewing content and readability in collaboration with patient and public involvement representatives.

Development of a core outcome set for effectiveness trials aimed at optimising prescribing in older adults in care homes

BackgroundPrescribing medicines for older adults in care homes is known to be sub-optimal. Whilst trials testing interventions to optimise prescribing in this setting have been published, heterogeneity in outcome reporting has hindered comparison of interventions, thus limiting evidence synthesis. The aim of this study was to develop a core outcome set (COS), a list of outcomes which should be measured and reported, as a minimum, for all effectiveness trials involving optimising prescribing in care homes. The COS was developed as part of the Care Homes Independent Pharmacist Prescribing Study (CHIPPS).MethodsA long-list of outcomes was identified through a review of published literature and stakeholder input. Outcomes were reviewed and refined prior to entering a two-round online Delphi exercise and then distributed via a web link to the CHIPPS Management Team, a multidisciplinary team including pharmacists, doctors and Patient Public Involvement representatives (amongst others), who comprised the Delphi panel. The Delphi panellists (n = 19) rated the importance of outcomes on a 9-point Likert scale from 1 (not important) to 9 (critically important). Consensus for an outcome being included in the COS was defined as ≥70% participants scoring 7–9 and <15% scoring 1–3. Exclusion was defined as ≥70% scoring 1–3 and <15% 7–9. Individual and group scores were fed back to participants alongside the second questionnaire round, which included outcomes for which no consensus had been achieved.ResultsA long-list of 63 potential outcomes was identified. Refinement of this long-list of outcomes resulted in 29 outcomes, which were included in the Delphi questionnaire (round 1). Following both rounds of the Delphi exercise, 13 outcomes (organised into seven overarching domains: medication appropriateness, adverse drug events, prescribing errors, falls, quality of life, all-cause mortality and admissions to hospital (and associated costs)) met the criteria for inclusion in the final COS.ConclusionsWe have developed a COS for effectiveness trials aimed at optimising prescribing in older adults in care homes using robust methodology. Widespread adoption of this COS will facilitate evidence synthesis between trials. Future work should focus on evaluating appropriate tools for these key outcomes to further reduce heterogeneity in outcome measurement in this context.

106 An Exploration of the Facilitators and Barriers for People with Osteoarthritis to Engage in Exercise: An Exploratory Approach with Participant Involvement

Background/Aims: The benefits of exercise on general health are well publicised for people with people with osteoarthritis (OA). However, there is a lack of engagement in healthy activity and exercise by people with OA and despite the known benefit of exercise there is a lack of understanding of the factors that facilitate people with OA engaging with physical activity and exercise. The aim of the study was to explore the perceptions of Patient and Public Involvement representatives with OA on the facilitators and barriers for their engagement with exercise. Methods: Using a qualitative semi-structured interview, transcripts of the participants’ conversations with the interviewer were analysed using thematic analysis. Findings: Seven separate themes were identified that acted as facilitators and barriers for people with OA to engage with exercise. These were: type of exercise; benefits of exercise; drawbacks of exercise; effects of exercise; public information; psychological impact; and social support. The main findings indicated that: 1. When a person knows and understands the health benefits of exercise, then they are more likely to engage in exercise. 2. For those with OA, greater emphasis on physical activity rather than exercise may be more useful to encourage engagement. 3. Simple, clear consistent messages related to exercise for people with OA are required from all public health bodies and health care professionals. Conclusions: These findings are useful to guide future research by informing which areas are important to people with OA when considering engagement with exercise. These may help with the design of studies and interventions. The use of language was particularly important when engaging with this group with older people expressing feelings of isolation where particular terms relating to sport and exercise were used. There is a need for a consistent public information message to clearly communicate to the public about the benefits of exercise both on general health and for OA.

An exploration of the facilitators and barriers for people with osteoarthritis to engage in exercise

Background/Aims: The benefits of exercise on general health are well publicised and indeed more so for people with osteoarthritis, but there is a lack of engagement in exercise by the general public, and further lack of engagement by people with osteoarthritis. The reasons for this are not known, despite the clear benefits for both groups. The aim of the study was to explore the perceptions of patient and public involvement representatives with osteoarthritis on the facilitators and barriers for their engagement with exercise. Methods: Using a qualitative semi-structured interview, transcripts of the participants' conversations with the interviewer were analysed using thematic analysis. Findings: Seven separate themes were identified. These were: type of exercise; benefits of exercise; drawbacks of exercise; effects of exercise; public information; psychological impact; and social support. The main findings indicate: When a person knows and understands the health benefits of exercise, then they are more likely to engage in exercise For those with osteoarthritis, greater emphasis on physical activity may be more useful to encourage engagement Simple, clear consistent messages related to exercise for people with osteoarthritis are required from public health bodies. Conclusions: These findings are useful to guide future research by informing which areas are important to people with osteoarthritis when considering engagement with exercise. These may help with the design of studies and interventions. The use of language was particularly important when engaging with this group with older people expressing feelings of isolation where particular terms were used. There is a need for a consistent public information message to clearly communicate to the public about the benefits of exercise both on general health and for osteoarthritis.