Het meten van kwaliteit van leven bij ernstig demente verpleeghuisbewoners: psychometrische eigenschappen van de QUALID-schaal

Schalkwijk, Dorus; Verlare, L. R.; Muller, Martien T.; Knol, Dirk L.; Steen, Jenny T. van der

doi:10.1007/bf03079587

Cited by 12 publications

(8 citation statements)

References 25 publications

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“…The prospectively assessed MSSE may compare better to the retrospectively assessed MSSE than the EOLD–CAD, because the MSSE may be more stable over time (i.e., it includes more stable items in addition to symptoms). Further, comparing slightly different constructs such as observed discomfort and quality of life in retrospect, a CCC of about 0.5 is expected [42]. Nevertheless, our results confirm the validity of the tested instruments in a sense that the retrospective assessments are at least to some degree based on prospectively observed experiences of dying.…”

Section: Discussionsupporting

confidence: 67%

Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia

et al. 2011

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PurposeQuality of care for long-term care (LTC) residents with dementia at the end-of-life is often evaluated using standardized instruments that were not developed for or thoroughly tested in this population. Given the importance of using appropriate instruments to evaluate the quality of care (QOC) and quality of dying (QOD) in LTC, we compared the validity and reliability of ten available instruments commonly used for these purposes.MethodsWe performed prospective observations and retrospective interviews and surveys of family (n = 70) and professionals (n = 103) of LTC decedents with dementia in the Netherlands.ResultsInstruments within the constructs QOC and QOD were highly correlated, and showed moderate to high correlation with overall assessments of QOC and QOD. Prospective and retrospective ratings using the same instruments differed little. Concordance between family and professional scores was low. Cronbach’s alpha was mostly adequate. The EOLD–CAD showed good fit with pre-assumed factor structures. The EOLD–SWC and FPCS appear most valid and reliable for measuring QOC, and the EOLD–CAD and MSSE for measuring QOD. The POS performed worst in this population.ConclusionsOur comparative study of psychometric properties of instruments allows for informed selection of QOC and QOD measures for LTC residents with dementia.

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Section: Discussionsupporting

confidence: 67%

Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia

et al. 2011

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“…It consists of 9 items with four response options ranging from 0–3. The total score ranges from 0–27, with 0 indicating ‘no discomfort’ and 27 indicating ‘the highest level of discomfort’ [35-37]. …”

Section: Methodsmentioning

confidence: 99%

Symptoms and treatment when death is expected in dementia patients in long-term care facilities

et al. 2014

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BackgroundAlthough dementia at the end of life is increasingly being studied, we lack prospective observational data on dying patients. In this study symptoms were observed in patients with dementia in the last days of life.MethodsWhen the elderly care physicians in two Dutch nursing homes expected death within one week, symptoms of (dis)comfort, pain and suffering were observed twice daily. For this the Pain Assessment in Advanced Dementia (PAINAD; range 0–10), Discomfort Scale-Dementia of Alzheimer Type (DS-DAT; range 0–27), End-Of-Life in Dementia-Comfort Assessment in Dying (EOLD-CAD; range 14–42) and an adapted version of the Mini-Suffering State Examination (MSSE; range 0–9), were used. Information on care, medical treatment and treatment decisions were also collected.ResultsTwenty-four participants (median age 91 years; 23 females), were observed several times (mean of 4.3 observations (SD 2.6)), until they died. Most participants (n = 15) died from dehydration/cachexia and passed away quietly (n = 22). The mean PAINAD score was 1.0 (SD 1.7), DS-DAT 7.0 (SD 2.1), EOLD-CAD 35.1 (SD 1.7), and MSSE 2.0 (SD 1.7). All participants received morphine, six received antibiotics, and rehydration was prescribed once.ConclusionIn these patients with dementia and expected death, a low symptom burden was observed with validated instruments, also in dehydrated patients without aggressive treatment. A good death is possible, but might be enhanced if the symptom burden is regularly assessed with validated instruments. The use of observation tools may have influenced the physicians to make treatment decisions.

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“…We used the mean (M) and SD as calculated in previous work validating the Dutch version of the QUALID in nursing home residents with advanced dementia (M=7.5, SD=4.9). 41 For the PES, it was analysed and provided for the subgroup of family caregivers with dementia (M=2.9, SD=1.9). 92 Clinically relevant differences in means were defined as 1.5 on the PES and 4 on the QUALID.…”

Section: Methods and Analysismentioning

confidence: 99%

Effects of the Namaste Care Family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: study protocol of a cluster-randomised controlled trial

Smaling

Joling²,

Ven

et al. 2018

BMJ Open

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IntroductionQuality of life of people with advanced dementia living in nursing homes is often suboptimal. Family caregivers can feel frustrated with limited contact with their relatives, which results in visits that are perceived as stressful and not very meaningful. Few psychosocial interventions are specifically developed for people with advanced dementia, and actively involve family caregivers or volunteers. Also, interventions usually stop when it becomes difficult for people to participate. The Namaste Care Family programme aims to increase the quality of life of people with advanced dementia, and improve family caregiving experiences through connecting to people and making them comfortable.Methods and analysisOur study will evaluate the effects of the Namaste Care Family programme on quality of life of people with advanced dementia living in nursing homes and family caregiving experiences using a cluster-randomised controlled trial. Longitudinal analyses will be performed taking into account clustering at the nursing home level. Both a cost-effectiveness and a cost-utility analysis from a societal perspective will be performed. We will modify the Namaste Care Family programme to increase family and volunteer involvement in ongoing and end-of-life care. Data collection involves assessments by family caregivers, nursing staff and elderly care physicians using questionnaires, and observations by the researchers at baseline and multiple times over 12 months. The last questionnaire will be sent up to month 24 after the death of the person with dementia. During semistructured interviews, the feasibility, accessibility and sustainability of the Namaste Care Family programme will be assessed.Ethics and disseminationThe study protocol is approved by the Medical Ethics Review Committee of the VU University Medical Center in Amsterdam (protocol no. 2016.399) and registered with the Nederlands Trial Register (NTR5692). The findings will be disseminated via publications in peer-reviewed journals, conference presentations and presentations for healthcare professionals where appropriate.Trial registration numberNTR5692.

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Het meten van kwaliteit van leven bij ernstig demente verpleeghuisbewoners: psychometrische eigenschappen van de QUALID-schaal

Cited by 12 publications

References 25 publications

Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia

Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia

Symptoms and treatment when death is expected in dementia patients in long-term care facilities

Effects of the Namaste Care Family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: study protocol of a cluster-randomised controlled trial

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