The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations

Brouwer, Werner; Exel, Job van; Gorp, Bouke van; Redekop, William K.

doi:10.1007/s11136-005-5994-6

Cited by 315 publications

(381 citation statements)

References 42 publications

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“…In connection to their registration to the website, parti-cipants were asked to complete a demographic questionnaire (see Table 1) and a number of self-rating instruments online: CarerQoL7-D [32] measures 7 dimensions (fulfillment, relational dimension, mental health dimension, social dimension, financial dimension, perceived support, and physical dimension) of caregiver burden. It consists of CarerQoL-7D and CarerQol-VAS.…”

Section: Data Collection and Analysismentioning

confidence: 99%

Web Based Supportive Intervention for Families Living with Schizophrenia—An Open Trial

Stjernswärd¹,

Hansson²

2013

OJMP

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Background: Web based modalities should be explored to support families living with mental illness. A web based tool including a psychoeducative module, a diary and a password protected forum was developed aimed at relatives' of a person with schizophrenia to alleviate daily life. Aim: The aim of the present study was to explore participants' use of the web based tool with focus on the forum and its potential health and psychosocial benefits. Methods: Nineteen persons participated in this explorative open trial. The forum posts were analyzed using content analysis. Self-rating instruments assessing caregiver burden, stigma and the tool's usability were analyzed with descriptive statistics. Results: The qualitative analysis resulted in four main categories and subcategories describing relatives' situation and interaction in the forum: Caring for a Person with Schizophrenia, Crisis and Care, Secrecy vs Openness, and Interaction and Social Support. Experiences of caregiver burden, but also fulfillment with caregiving tasks were reported. Concealing or hiding the family's mental illness was common, but also the ability to use inner strength to cope with stigma and discrimination. The mean usability score was 59 (70 = good). Conclusion: Web based support can help address some of the families' needs of support, although it encompasses certain limitations. Patient rights and the availability of resources, especially in cases of emergency, need to be made easily visible and accessible to alleviate families' burden.

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Section: Data Collection and Analysismentioning

confidence: 99%

Web Based Supportive Intervention for Families Living with Schizophrenia—An Open Trial

Stjernswärd¹,

Hansson²

2013

OJMP

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“…The health effects of informal care that capture the effect on the carer of providing the care can also be valued using non-monetary valuation, for example by measuring their health-related quality of life using a generic preference-based measure such as EQ-5D [10] or by measuring their care-related quality of life [11] or carer experience [12]. These utility or quality of life values can then be included alongside other benefits of an intervention.…”

Section: Introductionmentioning

confidence: 99%

Estimating informal care inputs associated with EQ-5D for use in economic evaluation

et al. 2015

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ObjectivesThis paper estimates informal care need using the health of the patient. The results can be used to predict changes in informal care associated with changes in the health of the patient measured using EQ-5D. MethodsData was used from a prospective survey of inpatients containing 59,512 complete responses across 44,494 individuals. The number of days a friend or relative has needed to provide care or help with normal activities in the last six weeks was estimated using the health of the patient measured by EQ-5D, ICD chapter and other health and sociodemographic data. A variety of different regression models were estimated that are appropriate for the distribution of the informal care dependent variable, which has large spikes at 0 (zero informal care) and 42 days (informal care every day). ResultsThe preferred model that most accurately predicts the distribution of the data is the zero-inflated negative binomial with variable inflation. The results indicate that improving the health of the patient reduces informal care need. The relationship between ICD chapter and informal care need is not as clear. ConclusionsThe preferred zero-inflated negative binomial with variable inflation model can be used to predict changes in informal care associated with changes in the health of the patient measured using EQ-5Dand these results can be applied to existing datasets to inform economic evaluation. Limitations include recall bias and response bias of the informal care data, and restrictions of the dataset to exclude some patient groups.

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“…This 21 question instrument has an internal consistency reliability (Cronbach's alpha) of 0.94 and the subscales of objective strain, subjective externalised and internalised strain are 0.93, 0.75, and 0.82 respectively [28]. Quality of life for informal caregivers was measured using the Carer Quality of Life instrument (CQoL) [29].…”

Section: Methodsmentioning

confidence: 99%

The National Disability Insurance Scheme: Effects on the Quality of Life and Personal Well-Being of Australians Caring for Individuals with an Autism Spectrum Disorder

Snow¹,

Donnelly²

2017

J Depress Anxiety

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The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations

Cited by 315 publications

References 42 publications

Web Based Supportive Intervention for Families Living with Schizophrenia—An Open Trial

Web Based Supportive Intervention for Families Living with Schizophrenia—An Open Trial

Estimating informal care inputs associated with EQ-5D for use in economic evaluation

The National Disability Insurance Scheme: Effects on the Quality of Life and Personal Well-Being of Australians Caring for Individuals with an Autism Spectrum Disorder

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