Health-Related Quality of Life Measures

Cesnales, Nicole I.; Thyer, Bruce A.

doi:10.1007/978-94-007-0753-5_951

Cited by 8 publications

(8 citation statements)

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“…Despite the lack of a consensus on the definition of HRQOL, it is generally accepted that HRQOL includes the physical, mental, and social domains of functioning and well-being. 3 Maintaining HRQOL in the process of care is essential for caregivers, and in turn, it may also affect the quality of care provided.…”

Section: Introductionmentioning

confidence: 99%

Does health‐related quality of life in Asian informal caregivers differ between early‐onset dementia and late‐onset dementia?

et al. 2020

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Aim: Early-onset dementia (EOD) (defined as dementia onset before age 65) presents specific challenges and issues, adding to the negative impact of dementia on the health-related quality of life (HRQOL) of both patients and their caregivers. However, very few published studies have specifically compared the HRQOL of caregivers of people with EOD and late-onset dementia (LOD). This information is critical in allocating and prioritizing scarce health-care resources. We aimed to assess the HRQOL of primary informal caregivers of community-dwelling individuals with EOD in Singapore and compare it with that of caregivers of individuals with LOD. Methods: This was a cross-sectional study of consecutive patientcaregiver dyads from a tertiary dementia clinic. Results: No significant differences in disease severity were found between the 111 EOD and 235 LOD patient-caregiver dyads. The mean Mental Component Summary score of the 36-item Short-Form Health Survey version 2 was significantly worse in caregivers of EOD patients than in LOD caregivers (mean: 41.42 vs 45.12, P = 0.001), although the mean Physical Component Summary scores were comparable (49.71 vs 49.53, P = 0.934). However, the impact of dementia early onset on caregivers' mental health diminished immediately after adjustment for the disease severity indicators, of which the Neuropsychiatric Inventory Questionnaire distress score was the only significant clinical factor (regression coefficient β = −0.29, P < 0.001). The amount of variability in the HRQOL of the caregivers explained by patient and caregiver factors across all the models was rather small (adjusted R 2 = 19.3% for the Mental Composite Score, 5.2% for Physical Composite Score). Conclusion: Caregivers of EOD patients had worse mental health than LOD caregivers probably because individual with EOD have more behavioural disturbances. This reinforces the indispensable role of managing behavioural problems when caring for a family member with dementia, especially for EOD. HRQOL ideally needs to be assessed based on self-report rather than inferences from indirect data such as the subjective caregiver burden.

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Section: Introductionmentioning

confidence: 99%

Does health‐related quality of life in Asian informal caregivers differ between early‐onset dementia and late‐onset dementia?

et al. 2020

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“…Conversely, specific HRQoL measures are developed to suit either the disease/condition or the population of interest. 35 While disease-specific measures can collect some information peculiar to the disease of interest that their generic counterparts cannot, they are also more responsive, 22 , 36 ie, more sensitive for detecting differences or changes in disease status. 37 To measure the HRQoL of alopecia patients, dermatology-specific instruments may be used justifiably.…”

Section: Health-related Quality Of Life and Its Measurementmentioning

confidence: 99%

Measuring Patient Quality of Life Following Treatment for Alopecia

Thadanipon¹,

Suchonwanit²

2021

PPA

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Alopecia is a challenging problem for both physicians and patients in terms of diagnosis and treatment. Alopecia usually has negative effects on patients' emotional and psychological well-being. Several studies have examined the effect of alopecia on patients' health-related quality of life (HRQoL) and have consistently reported poor scores. However, deeper insight into the impact of alopecia on affected individuals and its measurement using HRQoL questionnaires is lacking in the literature. In this article, the methods for measuring the HRQoL of patients with alopecia were comprehensively reviewed. Their applications and limitations were also discussed.

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“…Health‐related quality of life (HRQoL) encompasses physical, psychological and social health dimensions and is an important measure for studying illness impacts or intervention outcomes (Cesnales & Thyer 2014). In intellectual disability research, HRQoL can be measured by either self‐report, proxy report (from a healthcare professional, carer or relative) or both.…”

Section: Introductionmentioning

confidence: 99%

“…2008; Sato et al . 2013) and parents with higher psychological distress levels also typically have poorer QoL themselves (Cesnales & Thyer 2014).…”

Section: Introductionmentioning

confidence: 99%

Psychological distress and convergence of own and proxy health‐related quality of life in carers of adults with an intellectual disability

Rudra,

Ali,

Powell

et al. 2023

J intellect Disabil Res

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BackgroundIn adults with an intellectual disability, health‐related quality of life (HRQoL) is often measured by proxy report. This cross‐sectional study investigated whether the mental health of proxy raters impacts the way they rate HRQoL.MethodsIn this study, 110 carers of adults with an intellectual disability completed measures of psychological distress (Kessler‐6) and HRQoL (EQ‐5D‐3L) about their own HRQoL and that of the care recipient. Differences between HRQoL scores as rated by the carer about themselves and the care recipient were calculated (convergence scores) and multiple regression models were fitted to estimate the association between proxy psychological distress and convergence scores for subjective/objective HRQoL controlling for support needs of the care recipient, carer age and gender of care recipient.ResultsThere was a significant association between psychological distress and subjective HRQoL convergence scores (r = .92; P = 0.03; 95%; CI: −1.76 to −0.09). There was no association between psychological distress and objective HRQoL convergence scores (r = .01; CI −0.02 to 0.001; P = 0.08). The association between psychological distress and HRQoL scores was no longer present when models did not include convergence scores.ConclusionsCarers experiencing more psychological distress tended to rate their own and the care recipients' subjective HRQoL more similarly. Objective HRQoL measures did not show this convergence in scores with increasing carer psychological distress. Findings differed when the analysis approach was changed, suggesting the results above require replication in future studies.

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Health-Related Quality of Life Measures

Cited by 8 publications

References 0 publications

Does health‐related quality of life in Asian informal caregivers differ between early‐onset dementia and late‐onset dementia?

Does health‐related quality of life in Asian informal caregivers differ between early‐onset dementia and late‐onset dementia?

Measuring Patient Quality of Life Following Treatment for Alopecia

Psychological distress and convergence of own and proxy health‐related quality of life in carers of adults with an intellectual disability

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