Psychometric properties and use of the DEMQOL suite of instruments in research: a systematic review protocol

Hoben, Matthias; Chamberlain, Stephanie; OʼRourke, Hannah M; Elliott, Brittany; Shrestha, Shovana; Devkota, Rashmi; Thorne, Trina; Lam, Juan F.; Banerjee, Sube; Hughes, Laura; Estabrooks, Carole A.

doi:10.1136/bmjopen-2020-041318

Cited by 5 publications

(5 citation statements)

References 45 publications

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“…DEMQOL-CH (Supplementary Material 1) was developed from the widely used DEMQOL system. 26 DEMQOL-Proxy has been validated extensively. 35,36 However, the researchers found that it did not perform well when completed by care aides without an interviewer.…”

Section: Demqol-chmentioning

confidence: 99%

“…Generating a mixture of self-and proxy reports of QoL for different residents compromises comparability since proxy-reports are consistently lower than self-reports, and staff and family proxy reports also differ systematically. 26 Therefore, simple QoL proxy assessment is a promising approach that can be validly and reliably completed by direct care staff to give a common metric for residents across dementia severity and measure resident QoL scores over time. 14 Care aides (nursing assistants) are in the unique position of having, through their care contact, the detailed knowledge about residents that is required for valid QoL assessment.…”

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confidence: 99%

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Feasibility of Routine Quality of Life Measurement for People Living With Dementia in Long-Term Care

Hoben

Banerjee

Beeber

et al. 2022

Journal of the American Medical Directors Association

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Objectives: Maximizing quality of life (QoL) is the ultimate goal of long-term dementia care. However, routine QoL measurement is rare in nursing home (NH) and assisted living (AL) facilities. Routine QoL measurement might lead to improvements in resident QoL. Our objective was to assess the feasibility of using DEMQOL-CH, completed by long-term care staff in video calls with researchers, to assess healthrelated quality of life (HrQoL) of NH and AL residents with dementia or other cognitive impairment. Design: Cross-sectional study. Setting and Participants: We included a convenience sample of 5 NHs and 5 AL facilities in the Canadian province of Alberta. Forty-two care staff who had worked in the facility for !3 months completed DEMQOL-CH assessments of 183 residents who had lived in the facility for 3 months or more and were aged !65 years. Sixteen residents were assessed independently by 2 care staff to assess inter-rater reliability. Methods: We assessed HrQoL in people with dementia or other cognitive impairment using DEMQOL-CH, and assessed time to complete, inter-rater reliability, internal consistency reliability, and care staff ratings of feasibility of completing the DEMQOL-CH. Results: Average time to complete DEMQOL-CH was <5 minutes. Staff characteristics were not associated with time to complete or DEMQOL-CH scores. Inter-rater reliability [0.735, 95% confidence interval (CI): 0.712-0.780] and internal consistency reliability (0.834, 95% CI: 0.779-0.864) were high. The DEMQOL-CH score varied across residents (mean ¼ 84.8, standard deviation ¼ 11.20, 95% CI: 83.2-86.4). Care aides and managers rated use of the DEMQOL-CH as highly feasible, acceptable, and valuable. Conclusions and Implications: This study provides a proof of concept that DEMQOL-CH can be used to assess HrQoL in NH and AL residents and provides initial indications of feasibility and resources required. DEMQOL-CH may be used to support actions to improve the QoL of residents.

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Section: Demqol-chmentioning

confidence: 99%

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confidence: 99%

Feasibility of Routine Quality of Life Measurement for People Living With Dementia in Long-Term Care

Hoben

Banerjee

Beeber

et al. 2022

Journal of the American Medical Directors Association

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“…Scores range from 31–124, with higher scores indicating a better QoL for the person with dementia. Internal consistency for the measure is α = 0.87–0.92, and test-retest reliability is ICC = 0.67–0.84 [ 14 ].…”

Section: Methodsmentioning

confidence: 99%

Covid-19 and the quality of life of people with dementia and their carers—The TFD-C19 study

et al. 2022

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Introduction COVID-19 has placed unprecedented pressure on dementia health and social care systems worldwide. This has resulted in reduced services and support for people with dementia and their family carers. There are gaps in the evidence on the impact of the pandemic on Quality of Life (QoL). We carried out a study on the impact of the pandemic on the QoL of a group of people with dementia and their family carers who were part of a larger existing cohort study. Methods We quantitatively measured QoL, on two occasions during the two national lockdowns in 2020 and compared these data with those obtained when they entered the study (before the pandemic). Measures used included: DEMQOL-Proxy, Clinical Dementia Rating Scale and C-DEMQOL. To understand how QoL changed over time, a repeated measures ANOVA was run for each dependent variable with the following variables entered as co-variates: duration in study, baseline dementia severity, gender of the family carer, gender of the person with dementia, family carer relationship, dementia type, living status, age of the person with dementia, and age of the family carer. Results 248 participants took part in the study. QoL scores did not significantly decline between either time period for the person with dementia or their family carer. There was variation in subgroups; with co-resident status, carer relationship, gender of the person with dementia, age of the person with dementia, and baseline cognitive status influencing QoL outcomes in family carers. Discussion It is striking that people with dementia and their carers did not report a decline in QoL during the pandemic or in the months following restrictions suggesting the possibility of resilience. Variation in subgroups suggests that specific groups of family carers were more vulnerable to lower QoL; indicating the need for more tailored, nuanced support during this period.

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“…Should we encounter studies with no English abstract in languages other than those listed, we will further leverage our networks to find a colleague who speaks this language. We have successfully applied this approach in previous literature reviews 43–45. We will exclude qualitative studies, non-empirical work, non-systematic (selective) reviews and studies with a focus on the psychometrical testing of instruments.…”

Section: Methods and Analysismentioning

confidence: 99%

“…We have successfully applied this approach in previous literature reviews. [43][44][45] We will exclude qualitative studies, non-empirical work, non-systematic (selective) reviews and studies with a focus on the psychometrical testing of instruments. We will also exclude studies that are conducted in residential facilities providing care for residents with less complex care needs (assisted living, supportive living, retirement homes, senior housing), day care or night care facilities, hospitals, home care, primary care, care housing or studies that focus on LTC homes that admit primarily younger people.…”

Section: Inclusion and Exclusion Criteriamentioning

confidence: 99%

More than just staffing? Assessing evidence on the complex interplay among nurse staffing, other features of organisational context and resident outcomes in long-term care: a systematic review protocol

2022

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IntroductionEspecially in acute care, evidence points to an association between care staffing and resident outcomes. However, this evidence is more limited in residential long-term care (LTC). Due to fundamental differences in the population of care recipients, organisational processes and staffing models, studies in acute care may not be applicable to LTC settings. We especially lack evidence on the complex interplay among nurse staffing and organisational context factors such as leadership, work culture or communication, and how these complex interactions influence resident outcomes. Our systematic review will identify and synthesise the available evidence on how nurse staffing and organisational context in residential LTC interact and how this impacts resident outcomes.Methods and analysisWe will systematically search the databases MEDLINE, EMBASE, CINAHL, Scopus and PsycINFO from inception for quantitative research studies and systematically conducted reviews that statistically modelled interactions among nurse staffing and organisational context variables. We will include original studies that included nurse staffing and organisational context in LTC as independent variables, modelled interactions between these variables and described associations of these interactions with resident outcomes. Two reviewers will independently screen titles/abstracts and full texts for inclusion. They will also screen contents of key journals, publications of key authors and reference lists of all included studies. Discrepancies at any stage of the process will be resolved by consensus. Data extraction will be performed by one research team member and checked by a second team member. Two reviewers will independently assess the methodological quality of included studies using four validated checklists appropriate for different research designs. We will conduct a meta-analysis if pooling is possible. Otherwise, we will synthesise results using thematic analysis and vote counting.Ethics and disseminationEthical approval is not required as this project does not involve primary data collection. The results of this study will be disseminated via peer-reviewed publications and conference presentation.PROSPERO Registration numberCRD42021272671.

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Psychometric properties and use of the DEMQOL suite of instruments in research: a systematic review protocol

Cited by 5 publications

References 45 publications

Feasibility of Routine Quality of Life Measurement for People Living With Dementia in Long-Term Care

Feasibility of Routine Quality of Life Measurement for People Living With Dementia in Long-Term Care

Covid-19 and the quality of life of people with dementia and their carers—The TFD-C19 study

More than just staffing? Assessing evidence on the complex interplay among nurse staffing, other features of organisational context and resident outcomes in long-term care: a systematic review protocol

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