scholarly journals Quality of Life Assessments in Individuals With Young-Onset Dementia and Their Caregivers

2020 ◽  
pp. 089198872093334
Author(s):  
Divyansh Dixit ◽  
John Spreadbury ◽  
Rosanna Orlando ◽  
Elaine Hayward ◽  
Christopher Kipps
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Caregiver Burden ◽  
Anxiety And Depression ◽  
Single Item ◽  
Proxy Reports ◽  
Self Reports ◽  
Health Related ◽  
Young Onset Dementia

Background: Quality of life (QoL) has seldom been investigated or explicitly measured in young-onset dementia (YoD). The aims of this study were (1) to investigate and compare QoL self- and proxy reports in a sample of YoD patients and caregivers using different conceptual assessments of QoL and (2) to examine the relationship between caregiver QoL and both burden and mental health. Methods: There were 52 participants (26 YoD patient–caregiver dyads). The design was cross-sectional and part of a larger longitudinal prospective cohort study of YoD patients and caregivers. Primary measures included generic QoL (World Health Organization Quality of Life–short version [WHOQOL-BREF]), dementia-specific QoL (Quality of Life in Alzheimer’s Disease Scale [QoL-AD]), health-related QoL (EQ5D), and a single-item QoL measure. Secondary measures included caregiver burden (Zarit Burden Index), mental health (Hospital Anxiety and Depression Scale), and dementia severity (Clinical Dementia Rating). Results: Patient QoL self-reports were higher than caregiver proxy reports on the QoL-AD ( P = .001). Patient QoL self-reports for the WHOQOL-BREF ( P < .01) and single-item QoL ( P < .05) measure were significantly higher than caregiver self-reports. Dementia severity had no relationship with QoL self-reports. Caregiver burden, anxiety, and depression were negatively correlated with QoL when measured using a generic and single-item measure, but not with the health-related measure. Discussion: Patients and caregivers show a disparity in QoL reports, with patients tending to report higher QoL. Caregiver burden, anxiety, and depression should be areas targeted for interventions when supporting caregivers.

scholarly journals Health-related Quality of Life Profile of Indonesian Children and Its Determinants: a Community-based Study

2021 ◽  
Author(s):  
Mei Neni Sitaresmi ◽  
Braghmandita Widya Indraswari ◽  
Nisrina Maulida Rozanti ◽  
Zena Sabilatuttaqiyya ◽  
Abdul Wahab
Keyword(s):  
Quality Of Life ◽  
Self Report ◽  
Health Related Quality ◽  
Community Based ◽  
Proxy Report ◽  
Proxy Reports ◽  
Self Reports ◽  
Related Quality ◽  
Health Related

Abstract Background: Assessing health-related quality of life (HRQOL) and its determinants in children may provide a comprehensive view of child health. The study aimed to assess the HRQOL in Indonesian children and its determinants.Methods: We conducted a community-based cross-sectional study in the Sleman District of Yogyakarta Special Province, Indonesia, from August to November 2019. We recruited children aged 2 to 18 years old using the Sleman Health and Demography Surveillance System sample frame. We used the validated Indonesian version of Pediatric Quality of life InventoryTM (Peds QLTM) 4.0 Generic core scale, proxy-reports, and self-reports, to assess the HRQOL. Results: We recruited 633 proxies and 531 children aged 2-18 years. The mean total score of self-report and proxy-report were 89.9+ 8.5 and 93.3+6.4. There was a fair to moderate correlation between self-reports and proxy reports, with interclass correlation ranging from 0.34 to 0.47, all p<0.001. Half of the children (49.4% from proxy-report and 50.1% from self-report) reported having acute illness during the last month. Based on proxy-reports, multivariate regression analysis demonstrated lower HRQOL for children with acute health problems, younger age, history of low birth weight, abnormal delivery, lower fathers' educational level, and government-paid insurance for low-income families.Conclusion: In addition to sociodemographic determinants of a child's HRQOL, children’s health condition influences HRQOL in the general pediatric population. In low- and middle-income countries where acute infections and low birth weight are still prevalent, its prevention and appropriate interventions should improve child health.

Health-Related Quality of Life and Caregiver Burden among Peritoneal Dialysis Patients and Their Family Caregivers in Japan

2003 ◽  
Vol 23 (2_suppl) ◽  
pp. 200-205 ◽  
Author(s):  
Setsuko Shimoyama ◽  
Orie Hirakawa ◽  
Keiko Yahiro ◽  
Toshimi Mizumachi ◽  
Andrea Schreiner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Peritoneal Dialysis ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Short Form ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Objective Recent studies have found that patients with chronic renal failure suffer from depression and other symptoms of decreased mental health. However, little is know about caregiver burden and mental health among patients’ families. In the present study, we examined the relationship in Japan between peritoneal dialysis (PD) patients and caregivers with regard to health-related quality of life (HRQOL) and caregiver burden. Method In March of 2002, we recruited 60 subjects—26 patients on continuous ambulatory peritoneal dialysis (CAPD), and 34 caregivers—from a PD patient support group in southern Japan. We used the Kidney Disease Quality of Life Short Form (KDQOL-SF) and the Medical Outcomes Study Short Form 36 (SF-36) to measure HRQOL. We used the Zarit Burden Interview (ZBI) to measure caregiver burden. Data was also collected on each patient's duration of illness, treatment modality, age, sex, and medical history. All data were collected by mail surveys. Results Mean age of the PD patients was 48.2; mean age of the caregivers was 46.6. Mean caregiver burden on the ZBI was 14.1, which is considerably lower than that reported among caregivers for patients with dementia or stroke. Caregivers and patients both rated their general health and vitality among the lowest of the eight dimensions on the KDQOL-SF. In addition, patients scored lower than a normative population in all dimensions and significantly lower than caregivers in the dimensions of role physical functioning, role emotional functioning, and social functioning. Compared to national normative data for their age group, caregivers scored substantially lower in general health, vitality, and mental health. Conclusions Patients on CAPD are at risk for social role dysfunction, and their caregivers are at risk for decreased mental health. Further research is needed to identify interventions that can improve the HRQOL of CAPD patients and their family caregivers.

scholarly journals P05.65 The caregiver burden in meningioma: long-term results and its effects on caregiver’s health-related quality of life, anxiety and depression

2018 ◽  
Vol 20 (suppl_3) ◽  
pp. iii318-iii318
Author(s):  
A H Zamanipoor Najafabadi ◽  
P B van der Meer ◽  
F W Boele ◽  
J C Reijneveld ◽  
M J B Taphoorn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Long Term Results ◽  
Anxiety And Depression ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Risk and Protective Factors Associated With Health-Related Quality of Life of Parents With Mental Illness

2021 ◽  
Vol 12 ◽  
Author(s):  
Alina Radicke ◽  
Marlit Sell ◽  
Bonnie Adema ◽  
Anne Daubmann ◽  
Reinhold Kilian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Mental Illness ◽  
Anxiety And Depression ◽  
Adaptive Coping ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Parents With Mental Illness

Purpose: Health-related quality of life (HRQoL) can be reduced in parents with mental illness (mental illness) who face the dual demands of disabling symptoms and their impact on family, social, and occupational life. This study aimed at analyzing the influence of various factors on HRQoL in parents with mental illness.Method: Baseline data of the German randomized controlled multicenter project CHIMPS (children of parents with mental illness) was used for analyses. The final sample consisted of n = 208 parents with mental illness and n = 197 children and adolescents aged 8–18 years. HRQoL was assessed with the EQ-5D.Results: Parents with mental illness reported significantly lower global and specific HRQoL than the German reference population. They were least satisfied with aspects that relate to anxiety and depression followed by usual activities, pain and discomfort. Better global HRQoL was primarily associated with self-reported physical and mental health, as well as adaptive coping behavior. Associations with mobility, self-care, usual activity, pain and discomfort, anxiety and depression were analyzed and discussed.Conclusions: HRQoL in parents with mental illness is reduced. Clinical interventions should focus on the alleviation of mental health symptoms and probably somatic symptoms and promote adaptive coping skills.

scholarly journals Psychometric validation of the French self and proxy versions of the PedsQL™ 4.0 generic health-related quality of life questionnaire for 8–12 year-old children

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Pascal Amedro ◽  
Helena Huguet ◽  
Valerie Macioce ◽  
Raphael Dorka ◽  
Annie Auer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Factor Analysis ◽  
Construct Validity ◽  
Psychometric Validation ◽  
Health Related Quality ◽  
Proxy Reports ◽  
Self Reports ◽  
Related Quality ◽  
Health Related

Abstract Background The Pediatric Quality of Life Inventory Version 4.0 (PedsQLTM4.0) is a generic health-related quality of life (HRQoL) questionnaire, widely used in pediatric clinical trials but not yet validated in France. We performed the psychometric validation of the self and proxy PedsQLTM4.0 generic questionnaires for French children aged 8–12 years old. Methods This bicentric cross-sectional study included 123 children and their parents with congenital heart disease (CHD) and 97 controls. The psychometric validation method was based on the consensus-based standards for the selection of health measurement instruments (COSMIN). The reliability was tested using the intraclass correlation coefficient (ICC). To evaluate the validity of this scale, content, face, criterion, and construct validity psychometric proprieties were tested. Acceptability was studied regarding questionnaires’ completion and the existence of a floor or a ceiling effect. Results Test–retest reliability intra-class correlation coefficients were mainly in good range (0.49–0.66). Face validity was very good among parents (0.85) and children (0.75). Content validity was good (0.70), despite misinterpretation of some items. In construct validity, each subscale had acceptable internal consistency reliability (Cronbach's α > 0.72 in self-reports, > 0.69 in proxy-reports). In the confirmatory factor analysis, the goodness-of-fit statistics rejected the original structure with 4 factors. The exploratory factor analysis revealed an alternative two-factor structure corresponding to physical and psychological dimensions. Convergent validity was supported by moderate (> 0.41) to high correlations (0.57) between PedsQL and Kidscreeen questionnaires for physical, emotion and school dimensions. The ability of the PedsQL to discriminate CHD severity was better with physical, social and total scores for both self-reports and proxy-reports. Conclusions The PedsQLTM4.0 generic self and proxy HRQoL questionnaires found good psychometric properties, with regard to acceptability, responsiveness, validity, and reliability. This instrument appeared to be easy to use and comprehend within the target population of children aged 8 to 12 years old and their parents. Trial registration: This study was approved by the South-Mediterranean-IV Ethics Committee and registered on ClinicalTrials.gov (NCT01202916), https://clinicaltrials.gov/ct2/show/NCT01202916.

scholarly journals Development and evaluation of the Parenting to Reduce Child Anxiety and Depression Scale (PaRCADS): assessment of parental concordance with guidelines for the prevention of child anxiety and depression

PeerJ ◽  
2019 ◽  
Vol 7 ◽  
pp. e6865 ◽  
Author(s):  
Wan Hua Sim ◽  
Anthony F. Jorm ◽  
Katherine A. Lawrence ◽  
Marie B.H. Yap
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Depressive Symptoms ◽  
Child Anxiety ◽  
Depression Scale ◽  
Anxiety And Depression ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Background Involving parents in the prevention of mental health problems in children is prudent given their fundamental role in supporting their child’s development. However, few measures encapsulate the range of risk and protective factors for child anxiety and depression that parents can potentially modify. The Parenting to Reduce Child Anxiety and Depression Scale (PaRCADS) was developed as a criterion-referenced measure to assess parenting against a set of evidence-based parenting guidelines for the prevention of child anxiety and depressive disorders. Methods In Study 1, 355 parents of children 8–11 years old across Australia completed the PaRCADS and measures of parenting, general family functioning, child anxiety and depressive symptoms, and parent and child health-related quality of life. Their children completed measures of parenting, anxiety and depressive symptoms, and health-related quality of life. In Study 2, six subject-experts independently evaluated the PaRCADS items for item-objective congruence and item-relevance. Item analysis was conducted by examining item-total point-biserial correlation, difficulty index, B-index, and expert-rated content validity indices. Reliability (or dependability) was assessed by agreement coefficients for single administration. Construct validity was examined by correlational analyses with other measures. Results Four items were removed to yield a 79-item, 10-subscale PaRCADS. Reliability estimates for the subscale and total score range from .74 to .94. Convergent validity was indicated by moderate to strong correlations with other parenting and family functioning measures, and discriminant validity was supported by small to moderate correlations with a measure of parents’ health-related quality of life. Higher scores on the PaRCADS were associated with fewer anxiety and depressive symptoms and better health-related quality of life in the child. PaRCADS total score was associated with parental age, parent reported child’s history of mental health diagnosis and child’s current mental health problem. Discussion Results showed that the PaRCADS demonstrates adequate psychometric properties that provide initial support for its use as a measure of parenting risk and protective factors for child anxiety and depression. The scale may be used for intervention and evaluative purposes in preventive programs and research.

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