scholarly journals Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e048789
Author(s):  
Anna Zinkevich ◽  
Johanna Sophie Lubasch ◽  
Sarah Anna Katharina Uthoff ◽  
Jens Boenisch ◽  
Stefanie Kalén Sachse ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Informal Caregivers ◽  
Natural Speech ◽  
Insurance Company ◽  
Health Related Quality ◽  
Proxy Report ◽  
Related Quality ◽  
Health Related

ObjectiveTo examine interrelations between care-related burden on informal caregivers and their proxy assessments of outcomes in people without natural speech.DesignA cross-sectional survey.SettingData were collected in January 2019 from a postal survey of informal caregivers of people without natural speech who are insured by a large regional health insurance company in the German federal state of Lower Saxony.Participantsn=714 informal caregivers of people without natural speech of all ages and with various underlying disabilities were identified and contacted via the health insurance company. Data from n=165 informal caregivers (26.4%) were obtained.Main outcome measuresCaregiver burden (self-reported, Burden Scale for Family Caregivers), pragmatic communication skills of people without natural speech (proxy report, self-developed), health-related quality of life of people without natural speech (proxy report, DISABKIDS Chronic Generic Measure - DCGM-12) and functioning of people without natural speech (proxy report, WHO Disability Assessment Schedule 2.0).ResultsThe analyses revealed significant associations between caregiver burden on the one hand and both proxy-reported health-related quality of life (b=−0.422; p≤0.001) and functioning (b=0.521; p≤0.001) on the other. Adding caregiver burden to the regression model leads to a substantial increase in explained variance in functioning (R² Model 1=0.349; R² Model 2=0.575) as well as in health-related quality of life (R² Model 1=0.292; R² Model 2=0.460).ConclusionsCaregiver burden should be considered an important determinant when informal caregivers report outcomes on behalf of people without natural speech. Longitudinal studies are recommended to better understand the burdens experienced by caregivers when supporting people without natural speech.Trial registration numberDRKS00013628.

Health-related quality of life in children and adolescents with type 1 diabetes mellitus from Montenegro: relationship to metabolic control

2016 ◽  
Vol 29 (6) ◽  
Author(s):  
Mira Samardzic ◽  
Husref Tahirovic ◽  
Natasa Popovic ◽  
Milena Popovic-Samardzic
Keyword(s):  
Quality Of Life ◽  
Type 1 Diabetes ◽  
Children And Adolescents ◽  
Healthy Children ◽  
Health Related Quality ◽  
Proxy Report ◽  
Related Quality ◽  
Health Related

AbstractThe aim of this study was to evaluate health-related quality of life (HRQOL) in children and adolescents with type 1 diabetes (TIDM) in Montenegro compared with healthy controls and to estimate the effect of metabolic control on perceptions of HRQOL.This study involved children and adolescents with T1DM, age- and gender-matched healthy children and their parents. Children and adolescents with T1DM and their parents completed Peds QL 4.0 Generic Core Scales (GCS) and PedsQL 3.0 Diabetes Module. Healthy children and their parents completed self- and proxy-report of Peds QL 4.0 GCS.Our study (self- and proxy-report) showed that children and adolescents with T1DM had lower HRQOL on domain “Psychosocial health” and “School functioning” compared with healthy population (p=0.008; p≤0.001). Lower glycosylated hemoglobin (HbACompared with the healthy children, the HRQOL was lower among children and adolescents with T1DM. Lower HbA

scholarly journals Health‐related quality of life and caregiver burden of emicizumab in children with haemophilia A and factor VIII inhibitors—Results from the HAVEN 2 study

Haemophilia ◽  
2020 ◽  
Vol 26 (6) ◽  
pp. 1009-1018
Author(s):  
Maria Elisa Mancuso ◽  
Johnny Mahlangu ◽  
Robert Sidonio ◽  
Peter Trask ◽  
Marianne Uguen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Factor Viii ◽  
Caregiver Burden ◽  
Haemophilia A ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Psychological Symptomatology in Informal Caregivers of Persons with Dementia: Influences on Health-Related Quality of Life

2020 ◽  
Vol 17 (3) ◽  
pp. 1078 ◽  
Author(s):  
Miguel Madruga ◽  
Margarita Gozalo ◽  
Josué Prieto ◽  
José Carmelo Adsuar ◽  
Narcis Gusi
Keyword(s):  
Quality Of Life ◽  
Psychological Symptoms ◽  
Psychiatric Morbidity ◽  
Informal Caregivers ◽  
Health Related Quality ◽  
Five Dimensions ◽  
Related Quality ◽  
Health Related ◽  
High Level

Informal caregivers of persons with dementia often report high levels of anxiety, depression and burden. Nonetheless, other less evaluated psychological symptoms might also influence their health-related quality of life (HRQoL). The aim of this study was to comprehensively analyse other psychological symptoms and their influence on the health-related quality of life of informal caregivers. Fifty-four informal women caregivers and fifty-six women non-caregivers were recruited to participate in the study. Psychological symptoms were assessed using the Symptom Check-List-90-Revised (SCL-90-R) questionnaire and the HRQoL with the EuroQoL-Five Dimensions and Three Levels (EurQoL-5D-3L) questionnaire. Significant between-group differences were found in the majority of scales in the SCL-90-R questionnaire (p < 0.01) and caregivers also reported a worse HRQoL than non-caregivers (p < 0.05). Several psychological symptoms such as obsession-compulsive (β = 0.47), hostility (β = 0.59), and somatization (β = −0.49) had a significant impact on caregivers’ HRQoL (R2 explained between 0.17 and 0.30 of the variance). Caregivers are at a higher risk of suffering other psychological symptoms and show a moderate–high level of psychiatric morbidity, which therefore explains the poorer HRQoL outcomes. Supporting interventions should be provided to mitigate these psychological symptoms in order to improve their general distress and HRQoL.

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.

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