Observer-reported cognitive decline in out-of-hospital cardiac arrest survivors and its association with long-term survivor and relative outcomes.

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.

Identifying the prevalence of Parkinson's disease in Denmark using healthcare registries and self-reported survey data.

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.

Long-Term Quality of Life After Out-of-Hospital Cardiac Arrest.

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.

Does time heal fatigue, psychological, cognitive and disability problems in people who experience an out-of-hospital cardiac arrest? Results from the DANCAS survey study.

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.

Caught between competing emotions and tensions while adjusting to a new everyday life: a focus group study with family caregivers of out-of-hospital cardiac arrest survivors.

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.

Promising results from a residential rehabilitation intervention focused on fatigue and the secondary psychological and physical consequences of cardiac arrest: The SCARF feasibility study.

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.

Effectiveness of rehabilitation interventions on the secondary consequences of surviving a cardiac arrest: a systematic review and meta-analysis.

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.

Long-term physical and psychological outcomes after out-of-hospital cardiac arrest-protocol for a national cross-sectional survey of survivors and their relatives (the DANCAS survey).

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.

Feeling responsible but unsupported: How relatives of out-of-hospital cardiac arrest survivors experience the transition from hospital to daily life - A focus group study.

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.

Effect of Home-Based Cardiac Rehabilitation in a Lower-Middle Income Country: RESULTS FROM A CONTROLLED TRIAL.

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.

[Rehabilitation and palliative care in cardiovascular diseases in Denmark].

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.