Which quality of life measure is best for care homes?

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Quality of life, or well-being, is a well-researched field in older people and dementia (e.g. Giebel et al., 2014), but also in their carers (e.g. Sutcliffe et al., 2015). It is important to understand what affects quality of life, so we can find ways to improve it in those populations and circumstances where it may be lower than normal.

To measure quality of life better, and the associated aspects (such as financial well-being, satisfaction with relationships, and keeping a social life), scales have been developed.

Moving into a care home can present a difficult situation to some people, who will need to adjust no longer living within own four walls anymore, but with other people in a more communal setting. Therefore, we need to ensure that people who live in care homes enjoy a good quality of life that is not lower to that when they lived in their own at home.

In this blog, I look at a recent systematic review by Aspden and colleagues (2014) on quality of lfie measures for care home residents.

Quality of life measures are one way of finding out how people are feeling about and experiencing their new life in a care home.

Quality of life measures are one way of finding out how people are feeling about and experiencing their new life in a care home.

Methods

The authors were interested in evaluating studies which assessed the psychometric properties of quality of life measures in care home residents.

For this purpose, they searched standard data bases (including PsycINFO, PubMed, Cochrane, CINHAL and Embase) for suitable articles and also performed hand searches based on the references of included articles.

For an article to be included in the review, it needed to include the measurement properties of a quality of life scale and be written in English. The authors assessed whether the instruments were specifically for people living with particular conditions; whether they were evaluative or predictive; or if they distinguished between different groups. The measures were also appraised according to the breadth of what they measured, with the minimum domains being social, psychological and physical well-being.

If mixed populations (half care home residents, half people living in their own homes) were assessed in a study, the article was be excluded.

The strategy resulted in the indentification of 3252 unique articles, which were then subject to appraisal using the COSMIN methodological quality rating checklist, along with the measurement properties checklist. Nineteen articles were selected using abstract screening, and after full text screening 15 articles were finally included.

QUALIDEM was the best available evidence-based measure for assessing quality of life in people with dementia.

QUALIDEM was the best available evidence-based measure for assessing quality of life in people with dementia.

Results

The 15 final articles that were included evaluated 13 different quality of life measures, including the Quality of Life in Alzheimer’s Disease, the Dementia Quality of Life, and the EQ-5D.

Considering that a large proportion of care home residents has dementia, some measures were only suitable for people with dementia. Eight of the systematic reviews assessed dementia or Alzheimer’s specific quality of life measures.

For people with dementia, the authors concluded that the QUALIDEM was the best available evidence-based measure that could be used to assess quality of life as it allowed the widest variety of information about an individual to be collected. It is an observational instrument with 37 items within the following 9 domains:

  • care relationships,
  • positive affect,
  • negative affect,
  • restless tense behaviour,
  • positive self-image,
  • social relations,
  • social isolation,
  • feeling at home and
  • having something to do.

However, the QUALIDEM did not cover physical well-being.

For people living in care homes without dementia however, the authors recommended that, considering the quality of the evidence, practitioners should consider the Psychosocial Quality of Life Domains questionnaire. It is a 42-item self report questionnaire measuring the psychological, social and physical aspects of quality of life, including:

  • enjoyment,
  • relationships,
  • comfort,
  • meaningful activities,
  • security,
  • functional competence,
  • privacy,
  • autonomy,
  • spiritual well-being and
  • dignity.
The Psychosocial Quality of Life Domains questionnaire was assessed as best for people without dementia and included enjoyment as a domain.

The Psychosocial Quality of Life Domains questionnaire was assessed as best for people without dementia and included enjoyment as a domain.

Conclusion

The authors conclude, with caution about the moderate quality of evidence, that

QUALIDEM is a fairly comprehensive QoL instrument developed for the care home environment, has fairly com- prehensive information on measurement properties and demonstrates adequate measurement properties overall…In residents without dementia, or in instances where a self-reported instrument is required, the Psychosocial Quality of Life Domains questionnaire is recommended. This questionnaire was developed for individuals living in nursing homes and covers a broad conceptualisation of QoL, including psychological, social and physical well-being.

Summing up

Looking at other reviews which have evaluated quality of life measures, it seems a rather low number of studies to have looked at the area of interest (N=15). Bowling and colleagues for example (2015) have included 126 articles, but then they focused on dementia populatons at large, without a setting restriction.

The authors themselves recommend caution about the quality of evidence for the instruments they recommend. Several aspects of the evidence-base for both the QUALIDEM instrument and Psychosocial Quality of Life Domains questionnaire were only of moderate quality while there were some concerns about 6 out of the 10 domains of Psychosocial Quality of Life Domains questionnaire having below satisfactory internal consistency. Such limitations lead the authors to conclude that

better quality studies, assessing a wider range of measurement properties are needed in order to make a fully informed choice of QoL measurement instrument for use within care homes.

This review seems to offer a good guidance to clinicans and practitioners, but also to other researchers, when deciding on which quality of life measure to use with care home populations. However, with so few studies on each measure, future research needs to compare the psychometric properties of two or three scales within the same study.

The authors had some concerns about the quality of the evidence and recommended further research.

The authors had some concerns about the quality of the evidence and recommended further research.

Link

Aspden, T., Bradshaw, S.A., Playford, E.D., & Riazi, A. (2014). Quality-of-life measures for use within care homes: a systematic review of their measurement properties. Age and Ageing, 43, 596-603. [Abstract]

References

Bowling, A., et al. (2015). Quality of life in dementia: a systematically conducted narrative review of dementia-specific measurement scales. Aging & Mental Health, 19(1), 13-31. [PubMed]

Giebel, C.M., et al. (2014). Deterioration of basic activities of daily living and their impact on quality of life across different cognitive stages of dementia: a European study. International Psychogeriatrics, 26(8), 1283-1293. [Abstract]

Sutcliffe, C.L., Giebel, C.M., Jolley, D., & Challis, D. (2015). Experience of burden in carers of people with dementia on the margins of long-term care. International Journal of Geriatric Psychiatry, doi: 10.1002/gps.4295 [PubMed]

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Clarissa Giebel

Clarissa is a postdoctoral researcher in the field of dementia at the University of East Anglia and she is currently finishing her PhD exploring the link between cognition and everyday activities in dementia at The University of Manchester. She has worked on several projects in the field of dementia: 1. South Asian ethnic minority perceptions of dementia and access to care; 2. Transition from community living to nursing home placements in people with dementia; 3. Effective home support services in dementia; 4. Community mental health teams for older people.

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