scholarly journals Measurement of health-related quality of life for people with dementia: development of a new instrument (DEMQOL) and an evaluation of current methodology

2005 ◽  
Vol 9 (10) ◽  
Author(s):  
S Smith ◽  
D Lamping ◽  
S Banerjee ◽  
R Harwood ◽  
B Foley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
People With Dementia ◽  
New Instrument ◽  
Related Quality ◽  
Health Related

What constitutes health-related quality of life in dementia? Development of a conceptual framework for people with dementia and their carers

2005 ◽  
Vol 20 (9) ◽  
pp. 889-895 ◽  
Author(s):  
Sarah C. Smith ◽  
Joanna Murray ◽  
Sube Banerjee ◽  
Beth Foley ◽  
Joanna C. Cook ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Conceptual Framework ◽  
Health Related Quality ◽  
People With Dementia ◽  
Related Quality ◽  
Health Related

scholarly journals Individual cognitive stimulation therapy for dementia: a clinical effectiveness and cost-effectiveness pragmatic, multicentre, randomised controlled trial

2015 ◽  
Vol 19 (64) ◽  
pp. 1-108 ◽  
Author(s):  
Vasiliki Orgeta ◽  
Phuong Leung ◽  
Lauren Yates ◽  
Sujin Kang ◽  
Zoe Hoare ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Relationship Quality ◽  
Clinical Effectiveness ◽  
Cognitive Stimulation ◽  
Health Related Quality ◽  
Family Carers ◽  
People With Dementia ◽  
Related Quality ◽  
Health Related

BackgroundGroup cognitive stimulation therapy programmes can benefit cognition and quality of life for people with dementia. Evidence for home-based, carer-led cognitive stimulation interventions is limited.ObjectivesTo evaluate the clinical effectiveness and cost-effectiveness of carer-delivered individual cognitive stimulation therapy (iCST) for people with dementia and their family carers, compared with treatment as usual (TAU).DesignA multicentre, single-blind, randomised controlled trial assessing clinical effectiveness and cost-effectiveness. Assessments were at baseline, 13 weeks and 26 weeks (primary end point).SettingParticipants were recruited through Memory Clinics and Community Mental Health Teams for older people.ParticipantsA total of 356 caregiving dyads were recruited and 273 completed the trial.InterventioniCST consisted of structured cognitive stimulation sessions for people with dementia, completed up to three times weekly over 25 weeks. Family carers were supported to deliver the sessions at home.Main outcome measuresPrimary outcomes for the person with dementia were cognition and quality of life. Secondary outcomes included behavioural and psychological symptoms, activities of daily living, depressive symptoms and relationship quality. The primary outcome for the family carers was mental/physical health (Short Form questionnaire-12 items). Health-related quality of life (European Quality of Life-5 Dimensions), mood symptoms, resilience and relationship quality comprised the secondary outcomes. Costs were estimated from health and social care and societal perspectives.ResultsThere were no differences in any of the primary outcomes for people with dementia between intervention and TAU [cognition: mean difference –0.55, 95% confidence interval (CI) –2.00 to 0.90;p-value = 0.45; self-reported quality of life: mean difference –0.02, 95% CI –1.22 to 0.82;p-value = 0.97 at the 6-month follow-up]. iCST did not improve mental/physical health for carers. People with dementia in the iCST group experienced better relationship quality with their carer, but there was no evidence that iCST improved their activities of daily living, depression or behavioural and psychological symptoms. iCST seemed to improve health-related quality of life for carers but did not benefit carers’ resilience or their relationship quality with their relative. Carers conducting more sessions had fewer depressive symptoms. Qualitative data suggested that people with dementia and their carers experienced better communication owing to iCST. Adjusted mean costs were not significantly different between the groups. From the societal perspective, both health gains and cost savings were observed.ConclusionsiCST did not improve cognition or quality of life for people with dementia, or carers’ physical and mental health. Costs of the intervention were offset by some reductions in social care and other services. Although there was some evidence of improvement in terms of the caregiving relationship and carers’ health-related quality of life, iCST does not appear to deliver clinical benefits for cognition and quality of life for people with dementia. Most people received fewer than the recommended number of iCST sessions. Further research is needed to ascertain the clinical effectiveness of carer-led cognitive stimulation interventions for people with dementia.Trial registrationCurrent Controlled Trials ISRCTN65945963.FundingThis project was funded by the National Institute of Health Research (NIHR) Health Technology Assessment (HTA) programme and will be published in full inHealth Technology Assessment; Vol. 19, No. 64. See the NIHR Journals Library website for further information.

scholarly journals Development of a new instrument for rheumatoid arthritis: The Cedars-Sinai Health-Related Quality of Life instrument (CSHQ-RA)

2003 ◽  
Vol 49 (1) ◽  
pp. 78-84 ◽  
Author(s):  
Michael H. Weisman ◽  
Harold D. Paulus ◽  
Simcha M. Russak ◽  
Deborah P. Lubeck ◽  
Chiun-Fang Chiou ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Rheumatoid Arthritis ◽  
Health Related Quality ◽  
Life Instrument ◽  
New Instrument ◽  
Related Quality ◽  
Health Related

Health-Related Quality of Life: A Comparative Analysis of Caregivers of People With Dementia, Cancer, COPD/Emphysema, and Diabetes and Noncaregivers, 2015–2018 BRFSS

2021 ◽  
Author(s):  
Ekin Secinti ◽  
Ashley B Lewson ◽  
Wei Wu ◽  
Erin E Kent ◽  
Catherine E Mosher
Keyword(s):  
Quality Of Life ◽  
Chronic Illness ◽  
Chronic Obstructive ◽  
Behavioral Risk ◽  
Health Related Quality ◽  
Obstructive Pulmonary Disease ◽  
People With Dementia ◽  
Related Quality ◽  
Health Related

Abstract Background Many informal caregivers experience significant caregiving burden and report worsening health-related quality of life (HRQoL). Caregiver HRQoL may vary by disease context, but this has rarely been studied. Purpose Informed by the Model of Carer Stress and Burden, we compared HRQoL outcomes of prevalent groups of caregivers of people with chronic illness (i.e., dementia, cancer, chronic obstructive pulmonary disease [COPD]/emphysema, and diabetes) and noncaregivers and examined whether caregiving intensity (e.g., duration and hours) was associated with caregiver HRQoL. Methods Using 2015–2018 Behavioral Risk Factor Surveillance System data, we identified caregivers of people with dementia (n = 4,513), cancer (n = 3,701), COPD/emphysema (n = 1,718), and diabetes (n = 2,504) and noncaregivers (n = 176,749). Regression analyses were used to compare groups. Results Caregiver groups showed small, nonsignificant differences in HRQoL outcomes. Consistent with theory, all caregiver groups reported more mentally unhealthy days than noncaregivers (RRs = 1.29–1.61, ps < .001). Caregivers of people with cancer and COPD/emphysema reported more physically unhealthy days than noncaregivers (RRs = 1.17–1.24, ps < .01), and caregivers of people with diabetes reported a similar pattern (RR = 1.24, p = .01). However, general health and days of interference of poor health did not differ between caregivers and noncaregivers. Across caregiver groups, most caregiving intensity variables were unrelated to HRQoL outcomes; only greater caregiving hours were associated with more mentally unhealthy days (RR = 1.13, p < .001). Conclusions Results suggest that HRQoL decrements associated with caregiving do not vary substantially across chronic illness contexts and are largely unrelated to the perceived intensity of the caregiving. Findings support the development and implementation of strategies to optimize caregiver health across illness contexts.

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