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van Maarschalkerweerd P.,NIVEL Netherlands Institute for Health Services Research Utrecht The Netherlands | Rademakers J.,Maastricht University | Rijken M.,NIVEL Netherlands Institute for Health Services Research Utrecht The Netherlands
Psycho-Oncology | Year: 2017

Objective: This study aimed to explore cancer survivors' level of patient activation, ie, their knowledge, skills, and confidence for self-management, and to examine its relations to their participation in paid work and work-related problems. Methods: A total of 524 Dutch cancer survivors, 208 younger than 65 years, completed the Patient Activation Measure (PAM-13) and the Research and Development (RAND-36) General Health scale. Cancer survivors younger than 65 years also reported on their participation in paid work and work-related problems. Results: The mean PAM-13 score of cancer survivors was 58.1, and of those younger than 65 years 58.7. Patient activation was not associated with participation in paid work. Employed cancer survivors with a low level of patient activation experienced more problems working accurately (34% vs 17%), finishing their work (47% vs 22%), and concentrating (59% vs 31%) than those with a higher level of patient activation. The former group also reported more work stress (62% vs 28%). Conclusions: Patient activation of cancer survivors deserves more attention, as a substantial proportion of these survivors have low activation levels, which relate to more work-related problems. Longitudinal studies are needed to explore the development of patient activation over time and its potential to improve important outcomes for people living with cancer in both the health and work domains. © 2017 John Wiley & Sons, Ltd.


Waverijn G.,NIVEL Netherlands Institute for Health Services Research Utrecht The Netherlands | Groenewegen P.P.,University Utrecht | de Klerk M.,The Netherlands Institute for Social Research Den Haag The Netherlands
Health and Social Care in the Community | Year: 2016

Differential provision of local services and amenities has been proposed as a mechanism behind the relationship between social capital and health. The aim of this study was to investigate whether social capital and collective efficacy are related to the provision of social support services and amenities in Dutch municipalities, against a background of decentralisation of long-term care to municipalities. We used data on neighbourhood social capital, collective efficacy (the extent to which people are willing to work for the common good), and the provision of services and amenities in 2012. We included the services municipalities provide to support informal caregivers (e.g. respite care), individual services and support (e.g. domiciliary help), and general and collective services and amenities (e.g. lending point for wheelchairs). Data for social capital were collected between May 2011 and September 2012. Social capital was measured by focusing on contacts between neighbours. A social capital measure was estimated for 414 municipalities with ecometric measurements. A measure of collective efficacy was constructed based on information about the experienced responsibility for the liveability of the neighbourhood by residents in 2012, average charity collection returns in municipalities in 2012, voter turnout at the municipal elections in 2010 and the percentage of blood donors in 2012. We conducted Poisson regression and negative binomial regression to test our hypotheses. We found no relationship between social capital and the provision of services and amenities in municipalities. We found an interaction effect (coefficient = 3.11, 95% CI = 0.72-5.51, P = 0.011) of social capital and collective efficacy on the provision of support services for informal caregivers in rural municipalities. To gain more insight in the relationship between social capital and health, it will be important to study the relationship between social capital and differential provision of services and amenities more extensively and in different contexts. © 2016 John Wiley & Sons Ltd.


Wiering B.,University of Tilburg | de Boer D.,NIVEL Netherlands Institute for Health Services Research Utrecht The Netherlands | Delnoij D.,University of Tilburg
Health Expectations | Year: 2016

Background: Patient-reported outcome measures (PROMs) measure patients' perspectives on health outcomes and are increasingly used in health care. To capture the patient's perspective, it is essential that patients are involved in PROM development Objective: This article reviews in what ways and to what extent patients are involved in PROM development and whether patient involvement has increased over time. Search strategy: Literature was searched in PubMed, EMBASE, MEDLINE and the Cochrane Methodology Register. Inclusion criteria: Studies were included if they described a new PROM development. Data extraction: Basic information and information regarding patient involvement in development phases was recorded. Main results: A total of 189 studies, describing the development of 193 PROMs, were included. Most PROMs were meant for chronic disease patients (n = 59) and measured quality of life (n = 28). In 25.9% of the PROM development studies, no patients were involved. Patients were mostly involved during item development (58.5%), closely followed by testing for comprehensibility (50.8%), while patient involvement in determining which outcome to measure was minimal (10.9%). Some patient involvement took place in the development of most PROMs, but in only 6.7% patients were involved in all aspects of the development. Patient involvement did not increase with time. Conclusions: Although patient involvement in PROM development is essential to develop valid patient-centred PROMs, patients are not always involved. When patients are involved, their level of involvement varies considerably. These variations suggest that further attention to building and/or disseminating consensus on requirements for patient involvement in PROM development is necessary. © 2016 John Wiley & Sons Ltd.

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