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Ruth E Barker,1,2 Lisa J Brighton,3 Matthew Maddocks,3 Claire M Nolan,1,2 Suhani Patel,1 Jessica A Walsh,1 Oliver Polgar,1 Jenni Wenneberg,4 Samantha SC Kon,4 Jadwiga A Wedzicha,2 William DC Man,1,2 Morag Farquhar5 1Harefield Respiratory Research Group, Harefield Hospital, Middlesex, UK; 2National Heart and Lung Institute, Imperial College, London, UK; 3Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London, London, UK; 4The Hillingdon Hospitals NHS Foundation Trust, London, UK; 5School of Health Sciences, University of East Anglia, Norwich, UKCorrespondence: Ruth E BarkerHarefield Respiratory Research Group, Harefield Hospital, Hill End Road, Middlesex, UB9 6JH, United KingdomTel +44 01895 828851Email r.barker2@rbht.nhs.ukBackground: Hospital at home (HaH) schemes allow early discharge of patients hospitalised with an acute exacerbation of chronic obstructive pulmonary disease (AECOPD). Traditional outpatient pulmonary rehabilitation (PR) following an AECOPD has an established evidence-base, but there are issues with low referral, uptake and completion. One commonly cited barrier to PR post-hospitalisation relates to poor accessibility. To address this, the aim of this project was to enrol service users (patients with COPD and informal carers) and healthcare professionals to co-design a model of care that integrates home-based exercise training within a HaH scheme for patients discharged from hospital following AECOPD.Methods: This accelerated experience-based co-design project included three audio-recorded stakeholder feedback events, using key “touchpoints” from previous qualitative interviews and a recent systematic review. Audio-recordings were inductively analysed using directed content analysis. An integrated model of care was then developed and finalised through two co-design groups, with the decision-making process facilitated by the tables of changes approach.Results: Seven patients with COPD, two informal carers and nine healthcare professionals (from an existing outpatient PR service and HaH scheme) participated in the stakeholder feedback events. Four key themes were identified: 1) individualisation, 2) progression and transition, 3) continuity between services, and 4) communication between stakeholders. Two patients with COPD, one informal carer and three healthcare professionals participated in the first joint co-design group, with five healthcare professionals attending a second co-design group. These achieved a consensus on the integrated model of care. The agreed model comprised face-to-face supervised, individually tailored home-based exercise training one to three times a week, delivered during HaH scheme visits where possible by a healthcare professional competent to provide both home-based exercise training and usual HaH care.Conclusion: An integrated model of care has been co-designed by patients with COPD, informal carers and healthcare professionals to address low uptake and completion of PR following AECOPD. The co-designed model of care has now been integrated within a well-established HaH scheme.Keywords: COPD, exacerbations, rehabilitation, exercise training, integrated care, co-design

A Carole Gardener,1 Gail Ewing,2 Isla Kuhn,3 Morag Farquhar4 1Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK; 2Centre for Family Research, University of Cambridge, Cambridge, UK; 3University of Cambridge Medical School Library, University of Cambridge, Cambridge, UK; 4School of Health Sciences, University of East Anglia, Norwich, UK Introduction: Understanding the breadth of patients’ support needs is important for the delivery of person-centered care, particularly in progressive long-term conditions such as chronic obstructive pulmonary disease (COPD). Existing reviews identify important aspects of managing life with COPD with which patients may need support (support needs); however, none of these comprehensively outlines the full range of support needs that patients can experience. We therefore sought to systematically determine the full range of support needs for patients with COPD to inform development of an evidence-based tool to enable person-centered care.Methods: We conducted a systematic search and narrative review of the literature. Medline (Ovid), EMBASE, PsycINFO, Cochrane Library, and CINAHL were systematically searched for papers which included data addressing key aspects of support need, as identified by patients with COPD. Relevant data were extracted, and a narrative analysis was conducted.Results: Thirty-one papers were included in the review, and the following 13 domains (broad areas) of support need were identified: 1) understanding COPD, 2) managing symptoms and medication, 3) healthy lifestyle, 4) managing feelings and worries, 5) living positively with COPD, 6) thinking about the future, 7) anxiety and depression, 8) practical support, 9) finance work and housing, 10) families and close relationships, 11) social and recreational life, 12) independence, and 13) navigating services. These 13 domains of support need were mapped to three of the four overarching categories of need commonly used in relevant national strategy documents (ie, physical, psychological, and social); however, support needs related to the fourth category (spiritual) were notably absent.Conclusion: This review systematically identifies the comprehensive set of domains of support need for patients with COPD. The findings provide the evidence base for a tool to help patients identify and express their support needs, which underpins a proposed intervention to enable the delivery of person-centered care: the Support Needs Approach for Patients (SNAP). Keywords: COPD, person-centered care, support needs

Emma Mi,1 Ella Mi,1 Gail Ewing,2 Patrick White,3 Ravi Mahadeva,4 A Carole Gardener,5 Morag Farquhar6 On behalf of the Living with Breathlessness Study Team 1School of Clinical Medicine, 2Centre for Family Research, University of Cambridge, Cambridge, 3Primary Care and Public Health Sciences, King’s College London, London, 4Department of Respiratory Medicine, Cambridge NIHR BRC, Addenbrookes Hospital, 5Department of Public Health and Primary Care, University of Cambridge, Cambridge, 6School of Health Sciences, University of East Anglia, Norwich, UK Objective: Accurate informal carer assessment of patient symptoms is likely to be valuable for decision making in managing the high symptom burden of COPD in the home setting. Few studies have investigated agreement between patients and carers in COPD. We aimed to assess agreement between patients and carers on symptoms, and factors associated with disagreement in a population-based sample of patients with advanced COPD. Patients and methods: This was a prospective, cross-sectional analysis of data from 119 advanced COPD patients and their carers. Patients and carers separately rated symptoms on a 4-point scale. Wilcoxon signed-rank tests and weighted Cohen’s kappa determined differences in patient and carer scores and patient–carer agreement, respectively. We identified characteristics associated with incongruence using Spearman’s rank correlation and Mann–Whitney U tests. Results: There were no significant differences between group-level patient and carer scores for any symptom. Patient–carer individual-level agreement was moderate for constipation (k=0.423), just below moderate for diarrhea (k=0.393) and fair for depression (k=0.341), fatigue (k=0.294), anxiety (k=0.289) and breathlessness (k=0.210). Estimation of greater patient symptom burden by carers relative to patients themselves was associated with non-spousal patient–carer relationship, non-cohabitating patients and carers, carer symptoms of anxiety and depression and more carer unmet support needs. Greater symptom burden estimation by the patient relative to the carer was associated with younger patients and longer duration of COPD. Conclusion: Overall, agreement between patients and carers was fair to moderate and was poorer for more subjective symptoms. There is a need to encourage open dialogue between patients and carers to promote shared understanding, help patients express themselves and encourage carers to draw attention to symptoms that patients do not report. The findings suggest a need to screen for and address both the psychological morbidities in patients with advanced COPD and their carers and unmet support needs in carers. Keywords: COPD, informal carers, symptom, agreement

Ella Mi,1 Emma Mi,1 Gail Ewing,2 Ravi Mahadeva,3 A Carole Gardener,4 Hanne Holt Butcher,4 Sara Booth,5 Morag Farquhar6 On behalf of the Living with Breathlessness Study Team 1School of Clinical Medicine, 2Centre for Family Research, University of Cambridge, 3Department of Respiratory Medicine, Cambridge University Hospitals NHS Foundation Trust, 4Department of Public Health and Primary Care, Institute of Public Health, 5Department of Oncology, University of Cambridge, Cambridge, 6School of Health Sciences, University of East Anglia, Norwich, UK Objective: Anxiety and depression are highly prevalent in patients with COPD and their informal carers, and associated with numerous risk factors. However, few studies have investigated these in primary care or the link between patient and carer anxiety and depression. We aimed to determine this association and factors associated with anxiety and depression in patients, carers, and both (dyads), in a population-based sample.Materials and methods: This was a prospective, cross-sectional study of 119 advanced COPD patients and their carers. Patient and carer scores ≥8 on the Hospital Anxiety and Depression Scale defined symptoms of anxiety and depression, χ2 tests determined associations between patient and carer symptoms of anxiety/depression, and χ2 and independent t-tests for normally distributed variables (otherwise Mann–Whitney U tests) were used to identify other variables significantly associated with these symptoms in the patient or carer. Patient–carer dyads were categorized into four groups relating to the presence of anxious/depressive symptoms in: both patient and carer, patient only, carer only, and neither. Factors associated with dyad symptoms of anxiety/depression were determined with χ2 tests and one-way analysis of variance for normally distributed variables (otherwise Kruskal–Wallis tests).Results: Prevalence of symptoms of anxiety and depression was 46.4% (n=52) and 42.9% (n=48) in patients, and 46% (n=52) and 23% (n=26) in carers, respectively. Patient and carer symptoms of anxiety/depression were significantly associated. Anxious and depressive symptoms in the patient were also significantly associated with more physical comorbidities, more exacerbations, greater dyspnea, greater fatigue, poor mastery, and depressive symptoms with younger age. Symptoms of carer anxiety were significantly associated with being female and separated/divorced/widowed, and depressive symptoms with younger age, higher educational level, and more physical comorbidities, and symptoms of carer anxiety and depression with more unmet support needs, greater subjective caring burden, and poor patient mastery. Dyad symptoms of anxiety/depression were significantly associated with greater patient fatigue.Conclusion: Symptoms of anxiety and depression in COPD patients and carers are significantly associated. Given their high prevalence, considerable impact on mortality, impact on quality of life and health care use, and associations with each other, screening for and addressing patient and carer anxiety and depression in advanced COPD is recommended. Keywords: COPD, anxiety, depression, informal carers, patient–carer dyad

Objective: Women with Turner syndrome (TS) are at increased risk for chronic health conditions. Reports describing the presence of comorbidities in older adult women with TS are limited. This study aimed to examine the prevalence of endocrine, gynecological, and other chronic medical conditions in a cohort of adult TS patients.Methods: A retrospective chart review was conducted on patients seen between 1 February 2015 and 1 July 2018 in a multidisciplinary TS clinic at a university-based ambulatory hospital in Toronto, Canada. All women seen at the TS clinic with a diagnosis of TS aged >18 years were included. The prevalence of diseases was determined overall and stratified by age (<40 and ≥40 years). Statistical comparisons were done using the chi-square test. The main study outcomes included the presence of comorbidities.Results: Of 122 adult women with TS, 24.5% had hypothyroidism, 16% had dysglycemia, and 27.9% had decreased bone mass. Hypothyroidism and dysglycemia were more common among older women (respectively age ≥40 years vs. age <40 years: 36.7% vs. 17.8%, p = 0.018; and 24.5% vs. 5.5%, p = 0.023). Gynecological conditions were identified in 35% of patients and were more common among older women (42.8% age ≥40 years vs. 13.7% age <40 years, p = 0.003). Overall, 41% had hearing impairment, 36.1% had cardiac abnormalities, 14.8% had hypertension, 18.8% had renal abnormalities, and 9% had celiac disease.Conclusions: The results of this study indicate a high prevalence of medical conditions in women with TS, especially those ≥40 years of age. Our study underscores the importance of multidisciplinary adult TS clinics for ongoing screening and management of comorbidities. [ABSTRACT FROM AUTHOR]

Background Informal carers are central in supporting patients at the end of life, but this has substantial negative impacts on carers’ own mental health. When carers are unable to cope, this may affect their ability to support the patient and increase the likelihood of patient hospital admissions. Further, demographic changes mean demands for care at and before end of life are increasing and existing services will struggle to meet these demands. It is important to recognise carers as a vital resource and prevent adverse health outcomes from caregiving (and thereby limit their consequences). Large individual variation in the level of psychological morbidity from end-of-life caregiving suggests there is scope for interventions to improve carer mental health if we can understand the underlying factors. Objectives This meta-synthesis of qualitative studies aims to identify factors reported by carers as important to their mental health. Data sources Searches of MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Social Science Citation Index, EMBASE, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effects, and Cochrane Qualitative Reviews 1 January 2009 to 24 November 2019 for empirical publications from Organization for Economic Cooperation and Development countries in English/Scandinavian on factors affecting adult carer mental health during end-of-life caregiving in home settings. Review methods Systematic qualitative meta-synthesis in collaboration with a Public Patient Involvement carer Review Advisory Panel, included thematic synthesis, followed by a best-fit framework synthesis, informed by principles of meta-ethnography. Critical Appraisal Skills Programme Qualitative Studies Checklist was used. Results Thirty-three eligible studies identified six themes encompassing factors perceived by carers to affect their mental health during end-of-life caregiving. These were: (1) the patient condition (including patient decline); (2) impact of caring responsibilities (including exhaustion, lack of time for own needs, isolation); (3) relationships (including quality of the patient–carer relationship); (4) finances (including financial concerns, impact on work); (5) carers’ internal processes (including loss of autonomy, lack of confidence, coping strategies); and (6) support (including lack of informal support, inadequacies in formal support information and care provision, limited collaboration, disjointed care). Reported strategies to improve mental health were linked to the final two themes, with suggestions on how to manage carers’ internal processes and build appropriate support. Findings correspond with literature 1998–2008, indicating consistency in factors affecting carers and adding validity to findings. Limitations The review was limited to caregiving in the home setting and studies from Organization for Economic Cooperation and Development countries published in English and Scandinavian. Identified papers predominantly considered carers of people with cancer, with little research into ethnic-minority perspectives. The review may therefore not fully encompass factors affecting carers of people with longer-term conditions, or those within other care settings, countries and population groups. Conclusions and future work A wide range of both internal and contextual factors may lead to psychological morbidity when caring for someone at the end of life. Future work within practice therefore requires a broad-based rather than narrow approach to sustaining and improving carer mental health. Future work within research requires collaboration between researchers and stakeholders within policy, commissioning, practice and carer organisations to develop solutions and assess their effectiveness. Further, researchers need to develop better models for factors affecting carer mental health and their interaction, to build a stronger evidence base and better guide interventions. Study registration This study is registered as PROSPERO CRD42019130279. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number HSDR 18/01/01 and will be published in full in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information. Plain language summary Introduction Being a carer for a family member or friend at the end of their life can have an impact on the carer’s mental health. This includes depression, anxiety, stress and feeling overwhelmed. If carers feel unable to cope, they may be less able to look after their relative or friend. The mental health of carers must be a priority to help them feel better, cope, and support patients. This review summarises information from research into things that carers say are important for their mental health, to help us understand how we may be able to maintain or improve carers’ mental health. Methods We worked with six carers in a Review Advisory Panel to search for studies on carers’ experience published between 1 January 2009 and 24 November 2019 and identify common themes from identified studies. Themes were put into a table of themes and subthemes, assessed by the carers, and compared with other literature to identify factors that caused carers to have poor mental health, and ways to help carers feel better. Results We found six themes that indicate how caring for those at the end of life can affect mental health. These include: the impact of the patient condition and seeing the patient decline; the impact of caring responsibilities; carers’ relationship with the patient; finances; carers’ feelings and experiences such as lack of control or confidence when caring; and support from other family, friends and health-care professionals. Strategies to improve mental health were linked to the final two themes, including how to manage carers’ views and experiences of their situation and how to gain appropriate support. Conclusions This study describes factors that lead to poor mental health and ways to improve mental health when caring for someone at the end of life. Further work is needed to use this information to inform policy and service delivery.