What does quality of life mean to older adults? A thematic synthesis.

BACKGROUND: Consideration of older adults' quality of life (QoL) is becoming increasingly important in the evaluation, quality improvement and allocation of health and social care services. While numerous definitions and theories of QoL have been proposed, an overall synthesis of the perspective of older adults themselves is lacking. METHODS: Qualitative studies were identified in PubMed, Ebsco/Psycinfo and Ebsco/CINAHL, through a search on 28 November 2018. Articles needed to meet all of the following criteria: (i) focus on perceptions of QoL, (ii) older adults living at home as main participants, (iii) use of qualitative methodology, (iv) conducted in a Western country and (v) published in English (vi) not focused on specific patient groups. A thematic synthesis was conducted of the selected studies, using the complete 'findings/results' sections from the papers. RESULTS: We included 48 qualitative studies representing the views of more than 3,400 older adults living at home in 11 Western countries. The QoL aspects identified in the synthesis were categorized into nine QoL domains: autonomy, role and activity, health perception, relationships, attitude and adaptation, emotional comfort, spirituality, home and neighbourhood, and financial security. The results showed that although different domains can be distinguished, these are also strongly connected. CONCLUSION: QoL can be expressed in a number of domains and related subthemes that are important for older adults living at home. The findings further support that the concept of QoL should be seen as a dynamic web of intertwined domains.

Beliefs, Barriers, and Preferences of European Overweight Women to Adopt a Healthier Lifestyle in Pregnancy to Minimize Risk of Developing Gestational Diabetes Mellitus: An Explorative Study.

INTRODUCTION: We explored beliefs, perceived barriers, and preferences regarding lifestyle changes among overweight European pregnant women to help inform the development of future lifestyle interventions in the prevention of gestational diabetes mellitus. METHODS: An explorative mixed methods, two-staged study was conducted to gather information from pregnant European women (BMI ≥ 25 kg/m2). In three European countries 21 interviews were conducted, followed by 71 questionnaires in six other European countries. Content analysis and descriptive and chi-square statistics were applied (p < 0.05). RESULTS: Women preferred to obtain detailed information about their personal risk. The health of their baby was a major motivating factor. Perceived barriers for physical activity included pregnancy-specific issues such as tiredness and experiencing physical complaints. Insufficient time was a barrier more frequently reported by women with children. Abstaining from snacking was identified as a challenge for the majority of women, especially for those without children. Women preferred to obtain support from their partner, as well as health professionals and valued flexible lifestyle programs. CONCLUSIONS: Healthcare professionals need to inform overweight pregnant women about their personal risk, discuss lifestyle modification, and assist in weight management. Lifestyle programs should be tailored to the individual, taking into account barriers experienced by overweight first-time mothers and multipara women.

The Importance of Trust in Successful Home Visit Programs for Older People.

Outcomes of proactive home visit programs for frail, older people might be influenced by aspects of the caregiver-receiver interaction. We conducted a naturalistic case study to explore the interactional process between a nurse and an older woman during two home visits. Using an ethics of care, we posit that a trusting relationship is pivotal for older people to accept care that is proactively offered to them. Trust can be build when nurses meet the relational needs of older people. Nurses can achieve insight in these needs by exploring older people's value systems and life stories. We argue that a strong focus on older people's relational needs might contribute to success of proactive home visits for frail, older people.

Effectiveness of a Geriatric Care Model for frail older adults in primary care: Results from a stepped wedge cluster randomized trial.

BACKGROUND: Primary care-based comprehensive care programs have the potential to improve outcomes in frail older adults. We evaluated the impact of the Geriatric Care Model (GCM) on the quality of life of community-dwelling frail older adults. METHODS: A 24-month stepped wedge cluster randomized controlled trial was conducted between May 2010 and March 2013 in 35 primary care practices in the Netherlands, and included 1147 frail older adults. The intervention consisted of a geriatric in-home assessment by a practice nurse, followed by a tailored care plan. Reassessment occurred every six months. Nurses worked together with primary care physicians and were supervised and trained by geriatric expert teams. Complex patients were reviewed in multidisciplinary consultations. The primary outcome was quality of life (SF-12). Secondary outcomes were health-related quality of life, functional limitations, self-rated health, psychological wellbeing, social functioning and hospitalizations. RESULTS: Intention-to-treat analyses based on multilevel modeling showed no significant differences between the intervention group and usual care regarding SF-12 and most secondary outcomes. Only for IADL limitations we found a small intervention effect in patients who received the intervention for 18months (B=-0.25, 95%CI=-0.43 to -0.06, p=0.007), but this effect was not statistically significant after correction for multiple comparisons. CONCLUSION: The GCM did not show beneficial effects on quality of life in frail older adults in primary care, compared to usual care. This study strengthens the idea that comprehensive care programs add very little to usual primary care for this population. TRIAL REGISTRATION: The Netherlands National Trial Register NTR2160.

Cost-Effectiveness of a Chronic Care Model for Frail Older Adults in Primary Care: Economic Evaluation Alongside a Stepped-Wedge Cluster-Randomized Trial.

OBJECTIVES: To evaluate the cost-effectiveness of the Geriatric Care Model (GCM), an integrated care model for frail older adults based on the Chronic Care Model, with that of usual care. DESIGN: Economic evaluation alongside a 24-month stepped-wedge cluster-randomized controlled trial. SETTING: Primary care (35 practices) in two regions in the Netherlands. PARTICIPANTS: Community-dwelling older adults who were frail according to their primary care physicians and the Program on Research for Integrating Services for the Maintenance of Autonomy case-finding tool questionnaire (N = 1,147). INTERVENTION: The GCM consisted of the following components: a regularly scheduled in-home comprehensive geriatric assessment by a practice nurse followed by a customized care plan, management and training of practice nurses by a geriatric expert team, and coordination of care through community network meetings and multidisciplinary team consultations of individuals with complex care needs. MEASUREMENTS: Outcomes were measured every 6 months and included costs from a societal perspective, health-related quality of life (Medical Outcomes Study 12-item Short-Form Survey (SF-12) physical (PCS) and mental component summary (MCS) scales), functional limitations (Katz activities of daily living and instrumental activities of daily living), and quality-adjusted life years based on the EQ-5D. RESULTS: Multilevel regression models adjusted for time and baseline confounders showed no significant differences in costs ($356, 95% confidence interval = -$488-1,134) and outcomes between intervention and usual care phases. Cost-effectiveness acceptability curves showed that, for the SF-12 PCS and MCS, the probability of the intervention being cost-effective was 0.76 if decision-makers are willing to pay $30,000 per point improvement on the SF-12 scales (range 0-100). For all other outcomes the probability of the intervention being cost-effective was low. CONCLUSION: Because the GCM was not cost-effective compared to usual care after 24 months of follow-up, widespread implementation in its current form is not recommended.

Dutch translation and cross-cultural validation of the Adult Social Care Outcomes Toolkit (ASCOT).

BACKGROUND: The Adult Social Care Outcomes Toolkit was developed to measure outcomes of social care in England. In this study, we translated the four level self-completion version (SCT-4) of the ASCOT for use in the Netherlands and performed a cross-cultural validation. METHODS: The ASCOT SCT-4 was translated into Dutch following international guidelines, including two forward and back translations. The resulting version was pilot tested among frail older adults using think-aloud interviews. Furthermore, using a subsample of the Dutch ACT-study, we investigated test-retest reliability and construct validity and compared response distributions with data from a comparable English study. RESULTS: The pilot tests showed that translated items were in general understood as intended, that most items were reliable, and that the response distributions of the Dutch translation and associations with other measures were comparable to the original English version. Based on the results of the pilot tests, some small modifications and a revision of the Dignity items were proposed for the final translation, which were approved by the ASCOT development team. The complete original English version and the final Dutch translation can be obtained after registration on the ASCOT website ( http://www.pssru.ac.uk/ascot ). CONCLUSIONS: This study provides preliminary evidence that the Dutch translation of the ASCOT is valid, reliable and comparable to the original English version. We recommend further research to confirm the validity of the modified Dutch ASCOT translation.

Exploration of the content validity and feasibility of the EQ-5D-3L, ICECAP-O and ASCOT in older adults.

BACKGROUND: In economic evaluations of care services for older adults health-related quality of life (QoL) measures such as the EQ-5D are increasingly replaced by the ICECAP-O and ASCOT, which cover a broader scope of QoL than health alone. Little is known about the content validity and feasibility of these measures. The purpose of this study was to explore the content validity and feasibility of the EQ-5D-3L, ICECAP-O and ASCOT in older adults. METHODS: Ten older adults were purposively sampled using a maximum variation principle. Think-aloud and verbal probing techniques were used to identify response issues encountered during the interpretation of items and the selection of response options. We used constant comparative methods to analyse the data. RESULTS: Two types of response issues were identified for various items in all three measures: interpretation issues and positive responses. Issues with the mapping of a response on one of the response options were least often encountered for the EQ-5D-3L items. Older adults considered the items of the ICECAP-O and ASCOT valuable though more abstract than the EQ-5D-3L. CONCLUSIONS: Researchers who intend to use the EQ-5D, ICECAP-O or ASCOT in economic evaluations of care services for older adults, should be aware of the response issues that occur during the administration of these measures. Older adults perceived none of the measures as providing a comprehensive picture of their QoL. A preference from older adults for one of the measures depends on the extent to which the items reflect current personal concerns in life.

From concept to content: assessing the implementation fidelity of a chronic care model for frail, older people who live at home.

BACKGROUND: Implementation fidelity, the degree to which a care program is implemented as intended, can influence program impact. Since results of trials that aim to implement comprehensive care programs for frail, older people have been conflicting, assessing implementation fidelity alongside these trials is essential to differentiate between flaws inherent to the program and implementation issues. This study demonstrates how a theory-based assessment of fidelity can increase insight in the implementation process of a complex intervention in primary elderly care. METHODS: The Geriatric Care Model was implemented among 35 primary care practices in the Netherlands. During home visits, practice nurses conducted a comprehensive geriatric assessment and wrote a tailored care plan. Multidisciplinary team consultations were organized with the aim to enhance the coordination between professionals caring for a single patient with complex needs. To assess fidelity, we identified 5 key intervention components and formulated corresponding research questions using Carroll's framework for fidelity. Adherence (coverage, frequency, duration, content) was assessed per intervention component during and at the end of the intervention period. Two moderating factors (participant responsiveness and facilitation strategies) were assessed at the end of the intervention. RESULTS: Adherence to the geriatric assessments and care plans was high, but decreased over time. Adherence to multidisciplinary consultations was initially poor, but increased over time. We found that individual differences in adherence between practice nurses and primary care physicians were moderate, while differences in participant responsiveness (satisfaction, involvement) were more distinct. Nurses deviated from protocol due to contextual factors and personal work routines. CONCLUSIONS: Adherence to the Geriatric Care Model was high for most of the essential intervention components. Study limitations include the limited number of assessed moderating factors. We argue that a longitudinal investigation of adherence per intervention component is essential for a complete understanding of the implementation process, but that such investigations may be complicated by practical and methodological challenges. TRIAL REGISTRATION: The Netherlands National Trial Register (NTR). TRIAL NUMBER: 2160 .

Comparing measurement properties of the EQ-5D-3L, ICECAP-O, and ASCOT in frail older adults.

BACKGROUND: The ICEpop CAPability measure for Older people (ICECAP-O) and the Adult Social Care Outcomes Toolkit (ASCOT) are preference-based measures for assessing quality of life (QOL) from a broader perspective than do traditional health-related QOL measures such as the EuroQol five-dimensional questionnaire (EQ-5D). Measurement properties of these instruments have not yet been directly compared. OBJECTIVE: The purpose of this study was to compare the test-retest reliability, construct validity, and responsiveness of the three-level EQ-5D (EQ-5D-3L), ICECAP-O, and ASCOT in frail older adults living at home. METHODS: Cross-sectional data and longitudinal data were used. Parameters for reliability (the intraclass correlation coefficient) and agreement (standard error of measurement) were used to assess test-retest reliability after 1 week. We formulated hypotheses about correlations with other measures and tested these to assess construct validity and responsiveness (longitudinal validity). RESULTS: The reliability parameters for all three scales were considered good (intraclass correlation coefficient values above 0.70). Standard error of measurement values were less than 10% of the scale. Hypotheses regarding construct validity were in general accepted; the EQ-5D-3L was more strongly associated with physical limitations than were ICECAP-O and ASCOT and less strongly with instruments measuring aspects beyond health. Longitudinally, as hypothesized, mental health was most strongly associated with ICECAP-O, and self-perceived QOL, mastery, and client-centeredness of home care most strongly with ASCOT. CONCLUSIONS: Our findings support the adoption of ICECAP-O and ASCOT as outcome measures in economic evaluations of care interventions for older adults that have a broader aim than health-related QOL because they are at least as reliable as the EQ-5D-3L and are associated with aspects of QOL broader than health.

Self-perceived met and unmet care needs of frail older adults in primary care.

In order to provide adequate care for frail older adults in primary care it is essential to have insight into their care needs. Our aim was to describe the met and unmet care needs as perceived by frail older adults using a multi-dimensional needs assessment, and to explore their associations with socio-demographic and health-related characteristics. Cross-sectional baseline data were used from the Frail older Adults: Care in Transition (ACT) study in the Netherlands, consisting of 1137 community dwelling frail older adults aged 65 and above. Patients were recruited through 35 primary care practices. Self-perceived care needs were assessed using the Camberwell Assessment of Need for the Elderly (CANE). Socio-demographic characteristics included age, sex, partner status and educational level. Health-related characteristics included functional capacity, hospital admissions, chronic diseases and the degree of frailty. Frail older adults reported on average 4.2 care needs out of 13 CANE topics, of which 0.5 were unmet. The physical and environmental domain constituted the highest number of needs, but these were mostly met. Unmet needs were mainly found in the psychosocial domain. Regression analyses revealed that Activities of Daily Living (ADL) limitations and a higher frailty score were the most important determinants of both met and unmet care needs. A younger age and a higher educational level were associated with the presence of unmet care needs. In conclusion, most frail older adults in primary care report to receive sufficient help for their physical needs. More attention should be paid to their psychosocial needs.

Functional and genetic characterization of two extremely rare cases of Williams-Beuren syndrome associated with chronic granulomatous disease.

Williams-Beuren syndrome (WBS) is a neurodevelopmental disorder with multi-systemic manifestations, caused by a heterozygous segmental deletion of 1.55-1.83 Mb at chromosomal band 7q11.23. The deletion can include the NCF1 gene that encodes the p47(phox) protein, a component of the leukocyte NADPH oxidase enzyme, which is essential for the defense against microbial pathogens. It has been postulated that WBS patients with two functional NCF1 genes are more susceptible to occurrence of hypertension than WBS patients with only one functional NCF1 gene. We now describe two extremely rare WBS patients without any functional NCF1 gene, because of a mutation in NCF1 on the allele not carrying the NCF1-removing WBS deletion. These two patients suffer from chronic granulomatous disease with increased microbial infections in addition to WBS. Interestingly, one of these patients did suffer from hypertension, indicating that other factors than NADPH oxidase in vascular tissue may be involved in causing hypertension.

Implementing the chronic care model for frail older adults in the Netherlands: study protocol of ACT (frail older adults: care in transition).

BACKGROUND: Care for older adults is facing a number of challenges: health problems are not consistently identified at a timely stage, older adults report a lack of autonomy in their care process, and care systems are often confronted with the need for better coordination between health care professionals. We aim to address these challenges by introducing the geriatric care model, based on the chronic care model, and to evaluate its effects on the quality of life of community-dwelling frail older adults. METHODS/DESIGN: In a 2-year stepped-wedge cluster randomised clinical trial with 6-monthly measurements, the chronic care model will be compared with usual care. The trial will be carried out among 35 primary care practices in two regions in the Netherlands. Per region, practices will be randomly allocated to four allocation arms designating the starting point of the intervention. PARTICIPANTS: 1200 community-dwelling older adults aged 65 or over and their primary informal caregivers. Primary care physicians will identify frail individuals based on a composite definition of frailty and a polypharmacy criterion. Final inclusion criterion: scoring 3 or more on a disability case-finding tool. INTERVENTION: Every 6 months patients will receive a geriatric in-home assessment by a practice nurse, followed by a tailored care plan. Expert teams will manage and train practice nurses. Patients with complex care needs will be reviewed in interdisciplinary consultations. EVALUATION: We will perform an effect evaluation, an economic evaluation, and a process evaluation. Primary outcome is quality of life as measured with the Short Form-12 questionnaire. Effect analyses will be based on the "intention-to-treat" principle, using multilevel regression analysis. Cost measurements will be administered continually during the study period. A cost-effectiveness analysis and cost-utility analysis will be conducted comparing mean total costs to functional status, care needs and QALYs. We will investigate the level of implementation, barriers and facilitators to successful implementation and the extent to which the intervention manages to achieve the transition necessary to overcome challenges in elderly care. DISCUSSION: This is one of the first studies assessing the effectiveness, cost-effectiveness and implementation process of the chronic care model for frail community-dwelling older adults. TRIAL REGISTRATION: The Netherlands National Trial Register NTR2160.