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BACKGROUND: Seriously ill individuals rely heavily on family caregivers at the end of life. Yet many do not have family support. AIM: To characterize the size and composition of decedents' family networks by cause of death, demographic, clinical, socioeconomic, and geographic characteristics. DESIGN: A cross-sectional population-level study with data collected from nation-wide registers. SETTING/PARTICIPANTS: All adults in Denmark born between 1935 and 1998 who died of natural causes between 2009 and 2016 were linked at the time of death to living adult spouses/partners, children, siblings, parents, and grandchildren. RESULTS: Among 175,755 decedents (median age: 68 years, range: 18-81 years), 61% had a partner at the time of death and 78% had at least one adult child. Ten percent of decedents had no identified living adult family members. Decedents with family had a median of five relatives. Males were more likely to have a spouse/partner (65%) than females (56%). While 93% of decedents dying of cancer had adult family, only 70% of individuals dying of dementia had adult family at the time of death. The majority of cancer decedents co-resided or lived within 30 km of family (88%), compared to only 65% of those dying from psychiatric illness. CONCLUSIONS: While the majority of adults had an extensive family network at the time of death, a substantial proportion of decedents had no family, suggesting the need for non-family based long-term service and support systems. Assessment of family networks can expand our understanding of the end-of-life caregiving process and inform palliative care delivery.
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Cuidado Terminal , Adulto , Hijos Adultos , Anciano , Cuidadores , Niño , Estudios Transversales , Familia , Femenino , Humanos , Masculino , Cuidados PaliativosRESUMEN
PURPOSE: Bereavement is associated with increased morbidity and mortality, but few studies have examined the specific timing of depression onset. This study examines the risk of developing new-onset depression in adult children and partners by month, 1 year before and after death. METHODS: Using population-based registers in Denmark, we assembled a cohort of 236,000 individuals who died a natural death (2010-2016). Partners and adult children of the deceased were identified and demographic and prescription data were collected. GEE logistic regression was used to model whether the bereaved received a new antidepressant prescription around the death of their loved one across 24 time intervals (12 months before and after death). RESULTS: Male and female partners had an increase in receipt of new antidepressant prescriptions in the 11 months after the death of their partner, with a peak increase 2 or 3 months after death. Partners also increased new antidepressant prescription use 2 months before death. Characteristics of the decedents including cause of death were not associated with new antidepressant prescription in the surviving partner. Adult children did not have increased odds of being prescribed new antidepressants at any time. CONCLUSION: Both male and female partners have increase in new antidepressant utilization before and after the death of their partner. Our work points to the importance of supporting partners not only after the death of their partner, but also in the period before death when families may be actively engaged in caregiving for the seriously ill.
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Hijos Adultos , Aflicción , Adulto , Femenino , Humanos , Masculino , Antidepresivos/uso terapéutico , Estudios de Cohortes , PesarRESUMEN
PURPOSE: Patient-reported health-related quality of life is a complementary healthcare outcome and important when assessing treatment efficacy. Using COSMIN methodological recommendations, this study evaluates the validity and reliability of a core heart disease-specific health-related quality of life questionnaire, the HeartQoL questionnaire (Danish version) in a sample of patients following heart valve surgery. DESIGN: This project involved a cross-sectional validity study and a test-retest reliability study. METHODS: Eligible patients completed the HeartQoL, the SF-36 health survey questionnaire, and the Hospital Anxiety and Depression Scale following heart valve surgery. Construct validity was tested using a priori hypotheses. Internal consistency reliability was assessed with Cronbach's alpha. An independent sample of patients participated in the test-retest study and reproducibility was determined with relative [intra-class correlation coefficient (ICC)] and absolute reliability [standard error of measurement (SEM) and smallest detectable change (SDC)]. RESULTS: Internal consistency was high with Cronbach's alpha ≥ 0.87. ICC was 0.86-0.92. SEM ranged from 0.17 to 0.26 points and SDC ranged from 0.5 to 0.7 points. Construct validity was confirmed with 87% of all a priori hypotheses for predicted variables. CONCLUSIONS: The HeartQoL questionnaire demonstrates acceptable construct validity, internal consistency, and test-retest reproducibility in patients following heart valve surgery. Future studies should focus on assessing the responsiveness of the HeartQoL questionnaire over time and following heart valve surgery.
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Procedimientos Quirúrgicos Cardíacos/psicología , Encuestas Epidemiológicas/métodos , Cardiopatías/cirugía , Válvulas Cardíacas/cirugía , Psicometría/métodos , Calidad de Vida/psicología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Dinamarca , Femenino , Humanos , Masculino , Persona de Mediana Edad , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Adulto JovenRESUMEN
Background Patient-reported health-related quality of life is increasingly used as an outcome measure in clinical trials and as a performance measure to evaluate quality of care. The objective of this study was to assess the psychometric properties of the Danish HeartQoL questionnaire, a core heart disease-specific health-related quality of life questionnaire, in implantable cardioverter defibrillator recipients. Design This study involved cross-sectional and test-retest study designs. Method Implantable cardioverter defibrillator recipients in the cross-sectional study completed the HeartQoL, the Short-Form 36 Health Survey, and the Hospital Anxiety and Depression Scale. The HeartQoL structure, construct-related validity (convergent and discriminative) and reliability (internal consistency) were assessed. HeartQoL reproducibility (test-retest) was assessed in an independent sample of implantable cardioverter defibrillator recipients. Results Mokken scale analysis supported the bi-dimensional structure of HeartQoL among 358 implantable cardioverter defibrillator recipients. Convergent ( r > 0.72) and discriminative validity were confirmed. The HeartQoL scales demonstrated satisfactory internal consistency (Cronbach's alpha > 0.90). Test-retest reliability (two weeks interval) was assessed in 89 implantable cardioverter defibrillator recipients and found to be acceptable for each scale (intra-class correlation > 0.90). Conclusion The Danish HeartQoL questionnaire demonstrated satisfactory key psychometric attributes of validity and reliability in this implantable cardioverter defibrillator population. This study adds support for the HeartQoL as a core heart-specific health-related quality of life questionnaire in a broad group of patients with heart disease including implantable cardioverter defibrillator recipients.
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Arritmias Cardíacas/terapia , Desfibriladores Implantables , Cardioversión Eléctrica/instrumentación , Medición de Resultados Informados por el Paciente , Psicometría , Calidad de Vida , Adulto , Anciano , Anciano de 80 o más Años , Arritmias Cardíacas/diagnóstico , Arritmias Cardíacas/fisiopatología , Arritmias Cardíacas/psicología , Estudios Transversales , Dinamarca , Cardioversión Eléctrica/efectos adversos , Cardioversión Eléctrica/psicología , Femenino , Estado de Salud , Humanos , Masculino , Salud Mental , Persona de Mediana Edad , Reproducibilidad de los Resultados , Resultado del Tratamiento , Adulto JovenRESUMEN
BACKGROUND: Atrial fibrillation (AF) is associated with impaired health-related quality-of-life (HRQL). When assessing HRQL, disease-specific and generic instruments are used, which may hinder outcome comparisons across studies. A newly developed core ischaemic heart disease-specific HRQL questionnaire, the HeartQoL, offers a single measurement instrument which may allow outcome comparisons across cardiac diseases. The aim of the study was to evaluate the psychometric properties of HeartQoL in an AF population treated with ablation by assessing its factor structure, construct validity, internal consistency, and test-retest reliability. DESIGN AND METHODS: Data were collected in two phases: (a) a cross-sectional study including 462 patients with AF/atrial flutter who completed the HeartQoL and the Short-Form 36 (SF-36), allowing for the evaluation of internal consistency, factor structure and construct validity; and (b) a longitudinal study including 55 patients completing HeartQoL twice to evaluate test-retest reliability. RESULTS: The two-factor structure of HeartQoL was largely confirmed in patients with AF. Internal consistency was high (Cronbach's alpha (α) ≥ 0.90) and test-retest reliability good (intra-class correlation ≥ 0.90). The construct validity was supported, as subscales of HeartQoL correlated strongly with similar (r ≥ 0.78) and weakly (r ≤ 0.47) with dissimilar subscales of SF-36. The HeartQoL demonstrated ability to distinguish between different clinical subgroups of patients, indicating sensitivity. CONCLUSION: The HeartQoL showed overall satisfactory psychometric properties, demonstrating it to be a valid instrument in the evaluation of HRQL in patients with AF treated with ablation. This suggests that HeartQoL may be a valuable instrument for making HRQL comparisons across the spectrum of cardiac diseases.