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 Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking

2020 ◽  
Vol 29 (5) ◽  
pp. 1169-1181
Author(s):  
Roxanne M. Parslow ◽  
Nina Anderson ◽  
Danielle Byrne ◽  
Kirstie L. Haywood ◽  
Alison Shaw ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Conceptual Framework ◽  
Outcome Measure ◽  
Chronic Fatigue ◽  
Health Related Quality ◽  
Fatigue Syndrome ◽  
Related Quality ◽  
Health Related ◽  
Ranking Exercise

Abstract Purpose Chronic fatigue syndrome (CFS)/myalgic encephalopathy (ME) is relatively common in children and is disabling at an important time in their development. This study aimed to develop a conceptual framework of paediatric CFS/ME using the patient-perspective to ensure that the content of a new outcome measure includes the outcomes most important to young people. Methods We developed a child-centred interactive card ranking exercise that included health-related quality of life (HRQoL) outcomes identified from a previous review of the literature as well as qualitative work. Adolescents and their parents selected and ranked the outcomes most important to them and discussed each outcome in further detail. Adolescents were purposively sampled from a single specialist paediatric CFS/ME service in England. Interviews were audio recorded and transcribed verbatim, and thematic framework analysis was used to develop the final conceptual framework. Results We interviewed 43 participants in which there are 21 adolescents, 12–17 years of age with mild–moderate CFS/ME and their parents (20 mothers and 2 fathers). ‘Symptoms’, ‘tiredness’, ‘payback and crashing’ and ‘activities and hobbies’ were ranked most important to improve by both children and parents. Children ranked ‘school’ higher than parents and parents ranked ‘mood’ higher than children. A youth- specific CFS/ME conceptual framework of HRQoL was produced that included 4 outcome domains and 11 subdomains: sleep, tiredness, problems concentrating, individual symptoms, fluctuation and payback, daily and general activities, participation in school, leisure and social life, mood, anxiety and self-esteem. Conclusions An interactive card ranking exercise worked well for adolescents aged 12–17 to elicit the most important outcomes to them and explore each domain in further detail. We developed a final conceptual framework of HRQoL that forms the basis of a new paediatric patient-reported outcome measure (PROM) in CFS/ME.

scholarly journals Toward Patient-Centered Innovation

2020 ◽  
Vol 15 (10) ◽  
pp. 1522-1530
Author(s):  
Jennifer E. Flythe ◽  
Tandrea S. Hilliard ◽  
Kourtney Ikeler ◽  
San Keller ◽  
Debbie S. Gipson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Conceptual Framework ◽  
Drug Administration ◽  
Food And Drug Administration ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Individuals with dialysis-dependent kidney failure experience considerable disease- and treatment-related decline in functional status and overall well-being. Despite these experiences, there have been few substantive technological advances in KRT in decades. As such, new federal initiatives seek to accelerate innovation. Historically, integration of patient perspectives into KRT product development has been limited. However, the US Food and Drug Administration recognizes the importance of incorporating patient perspectives into the total product life cycle (i.e., from product conception to postmarket surveillance) and encourages the consideration of patient-reported outcomes in regulatory-focused clinical trials when appropriate. Recognizing the significance of identifying patient-reported outcome measures (PROMs) that capture contemporary patient priorities, the Kidney Health Initiative, a public–private partnership between the American Society of Nephrology and US Food and Drug Administration, convened a workgroup to (1) develop a conceptual framework for a health-related quality of life PROM; (2) identify and map existing PROMs to the conceptual framework, prioritizing them on the basis of their supporting evidence for use in the regulatory environment; and (3) describe next steps for identifying PROMs for use in regulatory clinical trials of transformative KRT devices. This paper summarizes the proposed health-related quality-of-life PROM conceptual framework, maps and prioritizes PROMs, and identifies gaps and future needs to advance the development of rigorous, meaningful PROMS for use in clinical trials of transformative KRT devices.

Development of a conceptual framework of health-related quality of life in pressure ulcers: A patient-focused approach

2010 ◽  
Vol 47 (12) ◽  
pp. 1525-1534 ◽  
Author(s):  
Claudia Gorecki ◽  
Donna L. Lamping ◽  
Julia M. Brown ◽  
Anna Madill ◽  
Jill Firth ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Conceptual Framework ◽  
Pressure Ulcers ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Health-related Quality of Life: Expanding a Conceptual Framework to Include Older Adults Who Receive Long-term Services and Supports

2012 ◽  
Vol 53 (2) ◽  
pp. 205-210 ◽  
Author(s):  
C. Zubritsky ◽  
K. M. Abbott ◽  
K. B. Hirschman ◽  
K. H. Bowles ◽  
J. B. Foust ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Conceptual Framework ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Services And Supports

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 Health-Related Quality of Life After Lobectomy for Lung Cancer: Conceptual Framework and Measurement

2020 ◽  
Vol 110 (6) ◽  
pp. 1840-1846
Author(s):  
Lisa M. Brown ◽  
Melissa M. Gosdin ◽  
David T. Cooke ◽  
Ester Carolina Apesoa-Varano ◽  
Anna L. Kratz
Keyword(s):  
Quality Of Life ◽  
Lung Cancer ◽  
Conceptual Framework ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related
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