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The impact of older person's frailty on the care-related quality of life of their informal caregiver over time: results from the TOPICS-MDS project.

ABSTRACT: To examine the impact of changes in an older person's frailty on the care-related quality of life of their informal caregiver.Five research projects in the TOPICS-MDS database with data of both older person and informal caregiver at baseline and after 12 months follow-up were selected. Frailty was measured in five health domains (functional limitations, psychological well-being, social functioning, health-related quality of life, self-rated health). Care-related quality of life was measured with the Care-Related Quality of Life instrument (CarerQoL-7D), containing two positive (fulfilment, perceived support) and five negative dimensions (relational problems, mental health problems, physical health problems, financial problems, problems combining informal care with daily activities).660 older person/caregiver couples were included. Older persons were on average 79 (SD 6.9) years of age, and 61% was female. Caregivers were on average 65 (SD 12.6) years of age, and 68% was female. Results of the multivariable linear and logistic regression analyses showed that an increase in older person's frailty over time was related to a lower total care-related quality of life of the caregiver, and to more mental and physical health problems, and problems with combining informal care with daily activities at follow-up. A change in the older person's psychological well-being was most important for the caregiver's care-related quality of life, compared to the other health domains.Health professionals observing decreasing psychological well-being of an older person and increasing hours of informal care provision should be aware of the considerable problems this may bring to their informal caregiver, and should tailor interventions to support informal caregivers according to their specific needs and problems.

SUBMITTER: Oldenkamp M

PROVIDER: S-EPMC5597689 | biostudies-other | 2017 Oct

REPOSITORIES: biostudies-other

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The impact of older person's frailty on the care-related quality of life of their informal caregiver over time: results from the TOPICS-MDS project.

Oldenkamp Marloes M Hagedoorn Mariët M Wittek Rafael R Stolk Ronald R Smidt Nynke N

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 20170531 10

<h4>Purpose</h4>To examine the impact of changes in an older person's frailty on the care-related quality of life of their informal caregiver.<h4>Methods</h4>Five research projects in the TOPICS-MDS database with data of both older person and informal caregiver at baseline and after 12 months follow-up were selected. Frailty was measured in five health domains (functional limitations, psychological well-being, social functioning, health-related quality of life, self-rated health). Care-related q ...[more]

PMID: 28567602

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Project description:BackgroundThe number of older cancer patients is rising. Especially in older people, treatment considerations should balance the impact of disease and treatment on quality of life (QOL) and survival. How a cancer diagnosis in older people interacts with concomitant frailty to impact on QOL is largely unknown. We aimed to determine the association between frailty and QOL among community-dwelling older people aged 65 years or above with and without a cancer diagnosis cross-sectionally and at 12 months follow-up.MethodsData were derived from the TOPICS-MDS database. Frailty was quantified by a frailty index (FI). QOL was measured with the subjective Cantril's Self Anchoring Ladder (CSAL, range: 0-10) and the health-related EuroQol-5D (EQ-5D, range:-0.33-1.00) at baseline and after 12 months. To determine associations, linear mixed models were used.Results7493 older people (78.6±6.4 years, 58.4% female) were included. Dealing with a cancer diagnosis (n = 751) was associated with worse QOL both at baseline (CSAL:-0.25 (95%-CI:-0.36;-0.14), EQ-5D:-0.03 (95%-CI:-0.05;-0.02)) and at follow-up (CSAL:-0.13 (95%-CI:-0.24;-0.02), EQ-5D:-0.02 (95%-CI:-0.03;-0.00)). A ten percent increase in frailty was also associated with a decrease in QOL at baseline (CSAL:-0.35 (95%-CI:-0.38;-0.32), EQ-5D:-0.12 (95%-CI:-0.12;-0.11)) and follow-up (CSAL:-0.27 (95%-CI:-0.30;-0.24), EQ-5D:-0.07 (95%-CI:-0.07;-0.06)). When mutually adjusting for frailty and a cancer diagnosis, associations between a cancer diagnosis and QOL only remained significant for CSAL at baseline (-0.14 (95%-CI:-0.25;-0.03)), whereas associations between frailty and QOL remained significant for all QOL outcomes at baseline and follow-up. No statistical interactions between cancer and frailty in their combined impact on QOL were found.ConclusionsCancer diagnosis and frailty were associated with worse health-related and self-perceived QOL both at baseline and at follow-up. Differences in QOL between older people with and without a cancer diagnosis were explained to a large extent by differences in frailty levels. This stresses the importance to take into account frailty in routine oncologic care.

Project description:In shared decision making, the exploration of preferred personal health outcomes is important. Patient-reported outcome measures (PROMs) provide input for discussions between patients and healthcare professionals. The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) PROM is a multidimensional questionnaire on the physical and mental health and wellbeing of older adults. This study investigates how the TOPICS-MDS could be used in individual healthcare conversations. We explored views of older adults regarding 1) whether the health domains they want to discuss are included in the TOPICS-MDS and 2) the comprehensibility of the TOPICS-MDS for healthcare conversations with older adults. A three-round Delphi study was conducted. A total of 57 older adults participated in the study, the mean (SD) age was 71.5 (8.5) years, and 78.9% of the participants were female. The participants were divided into four panels based on educational level and cultural background. We used online questionnaires and focus groups. Consensus was pre-defined to be the point when ?75% of the participants agreed that a domain was important or very important (scored on a 5-point Likert scale). The inter-expert agreement was computed for Round 1 and 3 with Kendall's W. Round 2 was a focus-group. Qualitative data were analyzed by content analysis. Older adults considered 'functional limitations', 'emotional wellbeing', 'social functioning' and 'quality of life' to be important domains of the TOPICS-MDS to discuss in healthcare conversations. The participants added 'coping with stress', 'dealing with health conditions and the effects on life' as extra domains for healthcare conversations. Challenges regarding the comprehensibility of the TOPICS-MDS included difficult words and lengthy or sensitive questions. Questions that included multiple topics were difficult to understand. The TOPICS-MDS covers the domains of life that older adults value as important to discuss with healthcare professionals, and two additional domains were identified. For older adults with a low level of education or a culturally diverse background, the TOPICS-MDS needs to be adjusted for comprehensibility.

Dataset Information

The impact of older person's frailty on the care-related quality of life of their informal caregiver over time: results from the TOPICS-MDS project.

Publications

The impact of older person's frailty on the care-related quality of life of their informal caregiver over time: results from the TOPICS-MDS project.

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