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Adaptation seeks to transfer and implement healthcare interventions developed and evaluated in one context to another. The aim of this scoping review was to understand current approaches to the adaptation of complex interventions for people with long-term conditions (LTCs) and to identify issues for studies performed in low- and middle-income countries (LMICs). Bibliographic databases were searched from 2000 to October 2022. This review involved five stages: (i) definition of the research question(s); (ii) identifying relevant studies; (iii) study selection; (iv) data charting; and (v) data synthesis. Extraction included an assessment of the: rationale for adaptation; stages and levels of adaptation; use of theoretical frameworks, and quality of reporting using a checklist based on the 2021 ADAPT guidance. Twenty-five studies were included from across 21 LTCs and a range of complex interventions. The majority (16 studies) focused on macro (national or international) level interventions. The rationale for adaptation included intervention transfer across geographical settings [high-income country (HIC) to LMIC: six studies, one HIC to another: eight studies, one LMIC to another: two studies], or transfer across socio-economic/racial groups (five studies), or transfer between different health settings within a single country (one study). Overall, studies were judged to be of moderate reporting quality (median score 23, maximum 46), and typically focused on early stages of adaptation (identification and development) with limited outcome evaluation or implementation assessment of the adapted version of the intervention. Improved reporting of the adaptation for complex interventions targeted at LTCs is needed. Development of future adaptation methods guidance needs to consider the needs and priorities of the LMIC context., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Society of Behavioral Medicine.) more...

Background: Knowledge about caregiver strain among relatives of out-of-hospital cardiac arrest (OHCA) survivors is limited. Thus, the objectives were to i) describe differences in self-reported mental well-being, mental health, and caregiver strain at different time points (1-5 years) post-OHCA and ii) investigate characteristics associated with caregiver strain., Methods: A national cross-sectional survey (DANCAS) from October 2020 to March 2021 with OHCA survivors and their closest relatives. The relative survey included the WHO-5 Well-being Index (WHO-5), the Hospital Anxiety and Depression Scale (HADS) and the Modified Caregiver Strain Index (M-CSI). Differences in scores between time groups were explored using descriptive statistics. Associations between characteristics and caregiver strain were investigated with multivariable logistic regression models, presented as odds ratios (OR) with 95% confidence intervals (CI), adjusted for gender, age, education status, relative affiliation, and time after OHCA., Results: Of 561 relatives, 24% (n = 137) experienced caregiver strain, with no significant differences in the relatives' mental well-being, mental health, or caregiver strain with time since OHCA. In the adjusted analyses, older age (OR 0.98 95% CI 0.96;0.99) and several self-reported outcomes, including reduced mental well-being (WHO-5 OR 7.27 95% CI 4.86;11.52), symptoms of anxiety (HADS-A OR 6.01 95% CI 3.89;9.29) and depression (HADS-D OR 15.03 95% CI 7.33;30.80) were significantly associated with worse caregiver strain., Conclusion: Nearly one-quarter of relatives of OHCA survivors experience caregiver strain, with this proportion remaining unchanged with time. Several outcomes were associated with caregiver strain, emphasising the need to identify relatives at greater risk of burden following OHCA., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Author(s). Published by Elsevier B.V. All rights reserved.) more...

Competing Interests: Conflict of interest: none declared.

Aim: Long-term cognitive decline after out-of-hospital cardiac arrest (OHCA) is still poorly understood. This study describes long-term observer-reported cognitive decline among Danish OHCA survivors, including differences in years since the event, and investigates characteristics and self-reported outcomes associated with observer-reported cognitive decline., Methods: Adults who survived an OHCA from 2016 to 2019, and their relatives, completed the national DANish Cardiac Arrest Survivorship survey. Relatives completed the Informant Questionnaire on Cognitive Decline in the Elderly, Cardiac Arrest version (IQCODE-CA), the Hospital Anxiety and Depression Scale (HADS) and the World Health Organisation-Five Well-being index; and survivors completed the Two Simple Questions (everyday activities and mental recovery), the Modified Fatigue Impact Scale, HADS, and the Short World Health Organisation Disability Assessment Schedule 2.0. Potential associations between survivor characteristics and the IQCODE-CA were investigated using a multivariable logistic regression model. Self-reported outcomes among survivors and relatives, and the association with IQCODE-CA scores were investigated using separate logistic regression models., Results: Total median IQCODE-CA score was 3.04 (IQR: 3.00-3.27), with 47% having possible cognitive decline (score ≥ 3.04), consistent across time groups. Increasing age (OR 0.98, 95% CI: 0.97-0.99) and worse self-reported mental and physical outcomes for survivors and relatives, except 'everyday activities' were significantly associated with possible cognitive decline among survivors., Conclusions: Nearly half of OHCA survivors may suffer long-term cognitive decline. Worse self-reported mental and physical outcomes among survivors and their relatives are associated with potential cognitive decline emphasising the need for post-OHCA care to include systematic neurocognitive assessment, tailored support and effective rehabilitation., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Author(s). Published by Elsevier B.V. All rights reserved.) more...

Introduction: Existing estimates of PD prevalence in Denmark are lower than those in the rest of Europe and are based on identification via single registries. Hence, are aim was to use a combined registry/self-report survey approach to identify people with PD and also investigate whether using different registry methods led to differences in the accuracy, completeness and characteristics of the identified cohorts., Methods: This study had a cross-sectional design using routinely collected health registry data to identify adults, ≥18 years of age and resident in Denmark, with PD from either the Danish National Patient (DNP) registry or Danish Prescription Medicines (DPM) registry. Those identified were asked to confirm their PD diagnosis using a national self-report survey., Results: 13,433 people were identified potentially as having PD via the DNP or DPM registry and sent a survey. Of these, 9094 responded (68 %) of which 85 % confirmed they had PD (n = 7763; 194/100,000; 95%CI:7650-7876). When adjusting for non-respondents, assuming an equal rate of confirmation in respondents and non-respondents, estimated Danish PD population was 11,467 (198.4/100,000; 95 % CI:197.2-199.6). Identification of people using those found in both registries led to 98 % confirming they had PD versus using one registry: DNP 93 % and DPM 88 %. No clear differences in sociodemographic characteristics were found between different registry identification methods., Conclusions: Estimated PD population in Denmark was significantly higher than previous Danish estimates and close to existing estimates in other European countries. The most accurate PD population was identified when including those found in both the DNP and DPM registries., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Jette Theusen reports financial support was provided by the Danish Parkinson's Association., (Copyright © 2024. Published by Elsevier Ltd.) more...

Importance: Allocating resources to increase survival after cardiac arrest requires survivors to have a good quality of life, but long-term data are lacking., Objective: To determine the quality of life of survivors of out-of-hospital cardiac arrest from 2001 to 2019., Design, Setting, and Participants: This survey study used the EuroQol Health Questionnaire, 12-Item Short Form Health Survey (SF-12), and Hospital Anxiety and Depression Scale (HADS) to assess the health-related quality of life of all adult survivors of out-of-hospital cardiac arrest included in the Danish Cardiac Arrest Registry between June 1, 2001, and August 31, 2019, who were alive in October 2020 (follow-up periods, 0-1, >1-2, >2-4, >4-6, >6-8, >8-10, >10-15, and >15-20 years since arrest). The survey was conducted from October 1, 2020, through May 31, 2021., Exposure: All patients who experienced an out-of-hospital cardiac arrest., Main Outcome and Measures: Self-reported health was measured using the EuroQol Health Questionnaire index (EQ index) score and EQ visual analog scale. Physical and mental health were measured using the SF-12, and anxiety and depression were measured using the HADS. Descriptive statistics were used for the analysis., Results: Of 4545 survivors, 2552 (56.1%) completed the survey, with a median follow-up since their event of 5.5 years (IQR, 2.9-8.9 years). Age was comparable between responders and nonresponders (median [IQR], 67 [58-74] years vs 68 [56-78] years), and 2075 responders (81.3%) were men and 477 (18.7%) women (vs 1473 male [73.9%] and 520 female [26.1%] nonresponders). For the shortest follow-up (0-1 year) and longest follow-up (>15-20 years) groups, the median EQ index score was 0.9 (IQR, 0.7-1.0) and 0.9 (0.8-1.0), respectively. For all responders, the mean (SD) SF-12 physical health score was 43.3 (12.3) and SF-12 mental health score, 52.9 (8.3). All 3 scores were comparable to a general Danish reference population. Based on HADS scores, a low risk for anxiety was reported by 73.0% (54 of 74) of 0- to 1-year survivors vs 89.3% (100 of 112) of greater than 15- to 20-year survivors; for symptoms of depression, these proportions were 79.7% (n = 59) and 87.5% (n = 98), respectively. Health-related quality of life was similar in survivor groups across all follow-up periods., Conclusions and Relevance: Among this survey study's responders, who comprised more than 50% of survivors of out-of-hospital cardiac arrest in Denmark, long-term health-related quality of life up to 20 years after their event was consistently high and comparable to that of the general population. These findings support resource allocation and efforts targeted to increasing survival after out-of-hospital cardiac arrest. more...

Aims: Caring for an out-of-hospital cardiac arrest (OHCA) survivor may impact family caregivers' lives due to the sudden onset of the illness and possible secondary cognitive, emotional, and physical challenges. However, experiences of caring for an OHCA survivor are sparsely described. Thus, this study aimed to explore how family caregivers of OHCA survivors experience the potential burden., Methods and Results: Using an explorative qualitative approach, six focus group interviews were conducted with a sample of 25 family caregivers of OHCA survivors and analysed using a phenomenological hermeneutic approach inspired by the philosophy of Ricoeur. The OHCA survivors attended a rehabilitation course, and the family caregivers were interviewed as part of the course.Based on the analysis, three themes emerged: (i) feeling unexpectedly alone and invisible; the family caregivers experienced an emotional burden that could not be shared-leading to caregiving being a lonely experience, (ii) fear of loss; the fear of losing a loved one was a constant companion contributing to the burden, and (iii) adjusting to a new everyday life; the family caregivers had difficulties adjusting to living their lives on the premise of the survivors' needs., Conclusion: The findings of this study emphasize the burden experienced by family caregivers and how they can be trapped in competing emotions and tensions. The possible caregiver burden following OHCA should be acknowledged. Interventions to reduce the burden should be tested and implemented as part of the clinical care of OHCA survivors and their families., Competing Interests: Conflict of interest: None declared., (© The Author(s) 2022. Published by Oxford University Press on behalf of the European Society of Cardiology. All rights reserved. For permissions, please email: journals.permissions@oup.com.) more...

Aims: Out-of-hospital cardiac arrest (OHCA) survivors may suffer short-term fatigue, psychological, cognitive and disability problems, but we lack information on the proportion of survivors with these problems in the long-term. Hence, we investigated these problems in survivors 1-5 years post-OHCA and whether the results are different at different time points post-OHCA., Methods: All adults who survived an OHCA in Denmark from 2016 to 2019 were identified using the Danish Cardiac Arrest Registry and invited to participate in a survey between October 2020 and March 2021. The survey included the Modified Fatigue Impact Scale, Hospital Anxiety and Depression Scale, "Two simple questions" (everyday activities and mental recovery), and the 12-item World Health Organisation Disability Assessment Schedule 2.0. To investigate results at different time points, survivors were divided into four time-groups (12-24, 25-36, 37-48 and 49-56 months post-OHCA). Differences between time-groups were determined using the Kruskall-Wallis test for the mean scores and Chi-square test for the proportion of survivors with symptoms., Results: Total eligible survey population was 2116, of which 1258 survivors (60 %) responded. Overall, 29 % of survivors reported fatigue, 20 % anxiety, 15 % depression, and 27 % disability. When survivors were sub-divided by time since OHCA, no significant difference was found on either means scores or proportion between time groups (p = 0.28 to 0.88)., Conclusion: Up to a third of survivors report fatigue, anxiety, depression, reduced mental function and disability 1-5 years after OHCA. This proportion is the same regardless of how much time has passed supporting early screening and tailored post-OHCA interventions to help survivors adapt to their new situation., (Copyright © 2022. Published by Elsevier B.V.) more...

Aims: This study investigated the feasibility and potential effect of SCARF (Survivors of Cardiac ARest focused on Fatigue) a multidisciplinary residential rehabilitation intervention focused on fatigue and the secondary psychological and physical consequences of cardiac arrest (CA)., Methods: This was a prospective one-armed feasibility study. Six progression criteria were identified related to the feasibility of the intervention and viability of a future effect study in terms of: participant recruitment (1), participant retention (2,3,4), and completeness of outcomes (5,6). Data on participant/clinician satisfaction with the intervention was also collected along with self-reported outcomes: fatigue, quality of life, anxiety, depression, function and disability, and physical activity (at baseline, 12 weeks and 6 months) and physical capacity (baseline and 12 weeks)., Results: Four progression criteria were met including retention (87.5%) and completion of baseline outcomes (97.5%). Two criteria were not met: recruitment rate was 2.9 participants per month (estimated rate needed 6.1) and completion of final outcomes was 65% (estimated proportion needed 75%). Participant/clinician satisfaction with the intervention was high. Three months after the SCARF intervention small to moderate effect size changes of r = 0.18-0.46 were found for self-reported fatigue, quality of life, anxiety, depression, function and disability and for two of the physical capacity tests (d = 0.46-0.52)., Conclusion: SCARF was found to be a feasible intervention with high participant/clinician satisfaction, high participant retention and the possible potential to improve self-reported and physical capacity outcomes. Procedures for study recruitment and collection of final outcomes should be modified before a fully powered randomised controlled trial is conducted., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2022 The Author(s). Published by Elsevier B.V. All rights reserved.) more...

Aims: Survivors of out-of-hospital sudden cardiac arrest (SCA) may suffer from long-term cognitive, psychological, or physical post-arrest consequences impacting and disrupting daily life. To adjust to and manage daily life is critical, and therefore a tailored rehabiliation programme was introduced to the participants. The study aimed to explore the lived experience among cardiac arrest survivors., Methods and Results: Data were gathered through six focus group interviews during a cardiac arrest rehabilitation programme. Thirty-three out-of-hospital SCA survivors (8 women and 25 men) participated. Time since cardiac arrest was on average 12-57 months. An exploratory qualitative design inspired by Ricoeur's phenomenological hermeneutics was applied. Two main themes emerged from the analysis and interpretation: (i) a lack of support from the health system in the transition from hospital to daily life; and (ii) feeling understood for the first time. The findings revealed that out-of-hospital SCA survivors experience a knowledge gap struggling for support. Attending the programme, gaining knowledge and experiencing peer support was described as a revelation for them., Conclusion: The findings suggest that out-of-hospital SCA survivors felt understood for the first time when attending a cardiac arrest rehabilitation programme. A post-arrest pathway is needed led by a coordinating cardiac arrest specialist nursing service together with allied healthcare professionals. Focus on hypoxic brain injuries, emotional burdens, and supportive strategies are essential in the transition to daily life. Facilitated peer support is warranted., (© The Author(s) 2021. Published by Oxford University Press on behalf of the European Society of Cardiology.) more...

Aim: The aim of this systematic review was to assess the effectiveness of rehabilitation interventions on the secondary physical, neurological and psychological consequences of cardiac arrest (CA) for adult survivors., Methods: A literature search of electronic databases (MEDLINE, Allied and Complementary Medicine Database, Cumulative Index to Nursing and Allied Health Literature, Excerpta Medica database, Psychological Information Database, Web of Science and Cochrane Central Register of Controlled trials) was conducted for randomised controlled trials (RCTs) and observational studies up to 18 April 2021. The primary outcome was health-related quality of life (HRQoL) and main secondary outcome was neurological function with additional secondary outcomes being survival, rehospitalisation, safety (serious and non-serious adverse events), psychological well-being, fatigue, exercise capacity and physical capacity. Two authors independently screened studies for eligibility, extracted data and assessed risk of bias., Results: Three RCTs and 11 observational studies were included (total 721 participants). Study duration ranged from 8 weeks to 2 years. Pooled data from two RCTs showed low-quality evidence for no effect on physical HRQoL (standardised mean difference (SMD) 0.19, (95% CI: -0.09 to 0.47)) and no effect on mental HRQoL (SMD 0.27 (95% CI: -0.01 to 0.55)).Regarding secondary outcomes, very low-quality evidence was found for improvement in neurological function associated with inpatient rehabilitation for CA survivors with acquired brain injury (SMD 0.71, (95% CI: 0.45 to 0.96)) from five observational studies. Two small observational studies found exercise-based rehabilitation interventions to be safe for CA survivors, reporting no serious or non-serious events., Conclusions: Given the overall low quality of evidence, this review cannot determine the effectiveness of rehabilitation interventions for CA survivors on HRQoL, neurological function or other included outcomes, and recommend further high-quality studies be conducted. In the interim, existing clinical guidelines on rehabilitation provision after CA should be followed to meet the high burden of secondary consequences suffered by CA survivors., Prospero Registration Number: CRD42018110129., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.) more...

Aim: To generate knowledge about how relatives of out-of-hospital cardiac arrest survivors experience the transition between hospital and daily life. The research question was "how do relatives of out-of-hospital cardiac arrest survivors experience collaboration and communication with healthcare professionals, and what is emphasized as important in the transition from hospital to daily life"., Design: Qualitative design., Methods: Six semi-structured focus group interviews were conducted with 23 relatives of out-of-hospital cardiac arrest survivors who participated in a residential rehabilitation course. Data was collected between November 2018 and March 2019. Transcripts were analysed using a phenomenological hermeneutic approach., Results: The analysis generated three themes "a necessary presence," "communication with healthcare professionals on the cardiac ward" and "the abrupt disappearance of the system." Relatives of out-of-hospital cardiac arrest survivors feel a great responsibility when coping and adjusting to their new life. In the transition to daily life, a focus on systematic involvement and collaboration with relatives should be an essential part of the post-cardiac arrest pathway., (© 2021 The Authors. Nursing Open published by John Wiley & Sons Ltd.) more...

Introduction: The number of out-of-hospital cardiac arrest (OHCA) survivors is increasing. However, there remains limited knowledge on the long-term physical and psychological problems suffered by survivors and their relatives. The aims of the DANCAS (DANish cardiac arrest survivorship) survey are to describe the prevalence of physical and psychological problems, identify predictors associated with suffering them and to determine unmet rehabilitation needs in order to make recommendations on the timing and content of future rehabilitation interventions., Methods and Analysis: The DANCAS survey has a cross-sectional design involving a survey of OHCA survivors and their relatives. OHCA survivors will be identified through the Danish Cardiac Arrest Registry as having suffered an OHCA between 1 January 2016 and 31 December 2019. Each survivor will be asked to identify their closest relative to complete the relatives' survey. Contents of survivor survey: EQ-5D-5Level, Hospital Anxiety and Depression Scale, Two Simple Questions, Modified Fatigue Impact Scale, 12-item WHO Disability Assessment Scale 2.0, plus questions on unmet rehabilitation and information needs. Contents of relatives' survey: World Health Organisation-Five Well-Being Index, Hospital Anxiety and Depression Scale, Informant Questionnaire on Cognitive Decline in the Elderly-Cardiac Arrest and the Modified Caregiver Strain Index. Self-report outcome data collected through the surveys will be enriched by data from Danish national registries including demographic characteristics, circumstances of cardiac arrest and comorbidities. The survey will be completed either electronically or by post December 2020-February 2021., Ethics and Dissemination: The study will be conducted in accordance with the Declaration of Helsinki. Surveys and registry-based research studies do not normally require ethical approval in Denmark. This has been confirmed for this study by the Region of Southern Denmark ethics committee (20192000-19). Results of the study will be disseminated via several peer-reviewed publications and will be presented at national and international conferences., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.) more...

Purpose: Cardiovascular disease is the leading cause of mortality and morbidity in lower-middle income countries (LMICs), including Bangladesh. Cardiac rehabilitation (CR) as part of secondary prevention of cardiovascular disease has been shown to reduce mortality and morbidity and improve quality of life and exercise capacity. However, to date, very few controlled trials of CR have been conducted in LMICs., Methods: A quasi-randomized controlled trial comparing home-based CR plus usual care with usual care alone was undertaken with patients following coronary artery bypass graft surgery. Participants in the CR group received an in-hospital CR class and were introduced to a locally developed educational booklet with details of a home-based exercise program and then received monthly telephone calls for 12 mo. Primary outcomes were coronary heart disease (CHD) risk factors, health-related quality of life (HRQOL), and mental well-being. Maximal oxygen uptake as a measure of exercise capacity was a secondary outcome., Results: In total, 142 of 148 eligible participants took part in the trial (96%); 71 in each group. At 12-mo follow-up, 61 patients (86%) in the CR group and 40 (56%) in the usual care group provided complete outcome data. Greater reductions in CHD risk factors and improvements in HRQOL, mental well-being, and exercise capacity were seen for the CR group compared with the usual care group., Conclusions: In the context of a single-center LMIC setting, this study demonstrated the feasibility of home-based CR programs and offers a model of service delivery that could be replicated on a larger scale. more...

An increasing number of Danes are living, and dying, with cardiovascular disease. There is good evidence for the impact of cardiac rehabilitation on coronary heart disease, heart failure and symptomatic peripheral arterial disease. However, more high-quality research is needed into a wider range of cardiac diseases including rehabilitation following cardiac arrest, and palliative care for patients with advanced heart disease. In this review it is discussed how to improve the quality of care and identify the direction of future research and development. more...

Objective: To estimate urban prevalence of rheumatic musculoskeletal (MSK) disorders and compare to an earlier rural regional study., Methods: We screened 8145 adults from a preselected urban locality in Pune, India, for MSK pain in a cross-sectional house-to-house survey (Stage I) over 20 weeks. The World Health Organization-International League of Associations for Rheumatology (WHO-ILAR) Community Oriented Program for Control of Rheumatic Diseases (COPCORD) Bhigwan model was used. Thirty trained community volunteers completed Phases I and II questionnaires, concurrent with rheumatology evaluation (Phase III). Clinical diagnosis was based on standard diagnosis/classification criteria. Point prevalence rates from our survey and the earlier Bhigwan village (Pune district) survey were standardized (adjusted age-sex to India population census 2001) and are reported for osteoarthritis (OA), rheumatoid arthritis (RA), seronegative spondyloarthritis (SSA), and inflammatory arthritis (IA)., Results: One thousand one hundred fifty-two urban cases (65% women) were identified (14.1%, 95% confidence interval 13.4, 14.9). The self-reported pain sites (Phase II) were hip (0.4), knees (6.3), ankle (1.9), feet (0.7), shoulders (2), hands (1.3), wrist (1.2), neck (1.9), upper back (1.7), low back (5.5), thigh (1.5), calf (1.4), and sole (0.8); corresponding rural sites being hip (1.1), knees (13.7), ankle (7), feet (1.6), shoulders (7.9), hands (6.3), wrist (6.9), neck (6.8), upper back (8.4), low back (12.6), thigh (4.8), calf (7.1) and sole (2.2). OA disorders, soft tissue rheumatism (STR) and ill-defined aches and pains were predominant in both surveys; < 10% reported IA. The major disorders among urban cases were OA (4), STR (1.2), RA (0.2, ACR criteria 1988), undifferentiated IA (0.3), SSA (0.3), and gout (0.06); corresponding rates in Bhigwan were OA (6.3), STR (3.8), RA (0.5), undifferentiated IA (0.8), SSA (0.3), and gout (0.1). Infections were conspicuously absent., Conclusion: While similar in spectrum, standardized prevalence rates of self-reported pain sites and rheumatic MSK disorders were significantly lower in the urban (current Pune COPCORD surveys) versus rural (Bhigwan) community, and in both communities aches and pains that are poorly understood by modern science were predominant. more...