The road to self-regulation

Medical rehabilitation treatment helps preventing, reducing and eliminating limitations caused by a chronic health condition. The ultimate aim of rehabilitation is to improve a person’s self-regulation, societal participation, and quality of life. This thesis was conducted in the context of a larger study: ‘Measurement of rehabilitation outcomes in the Netherlands’ (MUREVAN) and is mainly focused at the measurement of self-regulation.This thesis describes the development and initial analyses of the Self-Regulation Assessment (SeRA): a measure for self-regulation in the context of rehabilitation medicine. A qualitative exploration of the concept of self-regulation using focus group discussions with former rehabilitation patients and a Delphi study among rehabilitation physicians provided insights into the relevant aspects of self-regulation in a rehabilitation context. A systematic literature search showed no measure used in a rehabilitation context which covers all relevant aspects of self-regulation. The SeRA measure was developed based on these aspects. Interviews with former rehabilitation patients from native Dutch and non-Western backgrounds (Dutch speaking) confirmed relevance, comprehensibility and comprehensiveness of the SeRA. The SeRA was provided to former rehabilitation patients and more than 550 persons completed the SeRA. Statistical analysis showed the SeRA consists of four sub-scales: ‘insight into own health condition’, ‘insight into own capabilities’, ‘apply self-regulation’ and ‘organization of help’. Usage of the SeRA during rehabilitation could help identify patients at risk for low levels of self-regulation and identify best practices for rehabilitation care. Further, it can contribute to the registration of rehabilitation outcomes

Disability, Access to Food and the UN CRPD: Navigating Discourses of Human Rights in the Netherlands

In 2016, the Netherlands ratified the UN Convention on the Rights of Persons with Disabilities (UN CRPD), one of the last developed nations to do so. In this article, we explore how equal access to food provides a lens through which barriers to implementing a rights-based approach to disability equality can be examined in countries that are historically resistant to such discourses. Through a literature review, policy research, and interviews with disabled people, representatives of disabled people’s organisations, Dutch legal scholars, food researchers, and foodbanks, we have explored barriers to equal food access in the Netherlands, and current approaches to overcoming social, economic and physical barriers. Our analysis indicates that implementation of the UN CRPD and other relevant international and EU policies continues to be limited in the Netherlands due to narrow interpretations, leading to policies and practices that do not foster equal access to resources and environments. Dutch understandings of disability equality are evolving, but encounter opposition from an entrenched system of separation and resistance to mandating change, including a reluctance to even collect data about inequality. From this basis, we identify knowledge gaps and make recommendations for steps the Netherlands could take to ensure equal access to food

Development of the Self-Regulation Assessment (SeRA) and content validation using cognitive interviews in a multicultural post-rehabilitation population

Aim: Self-regulation is one of the main goals of medical rehabilitation. Four themes of self-regulation were identified by former patients and rehabilitation physicians in a previous study. Based on these themes, a measure for self-regulation, the self-regulation assessment (SeRA), was developed. This study aimed to establish the content validity of the SeRA in a multicultural and multi-diagnostic post-rehabilitation population. Methods: The Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology was applied. First, cognitive interviews were held with eight former rehabilitation patients. Feedback was obtained on relevance, comprehensibility, and comprehensiveness of the items. Items with problems were revised. Then, a second series of cognitive interviews was held with 16 former rehabilitation patients with non-Western migration backgrounds. Again, feedback was obtained on relevance, comprehensibility, and comprehensiveness of the items. Results: The first series of cognitive interviews revealed good comprehensiveness, and also comprehensibility or relevance problems with 12 of the 25 items. These items were revised or deleted. Two missing concepts were identified and these were added. There was no need to revise the items based on the results of the second series of cognitive interviews. Conclusion: The final version of the SeRA demonstrated content validity for the studied population. The measure is ready for psychometric analyses in subsequent validation studies

Using self-regulation assessment to explore associations between self-regulation, participation and health-related quality of life in a rehabilitation population

Objective: Self-regulation, participation and health-related quality of life are important rehabilitation outcomes. The aim of this study was to explore associations between these outcomes in a multi-diagnostic and heterogenic group of former rehabilitation patients.Methods: This cross-sectional survey used the Self-Regulation Assessment (SeRA), Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) and the Patient-Reported-Outcome-Measurement-System (PROMIS) ability and PROMIS satisfaction with participation in social roles, and the EuroQol-5L-5D and PROMIS-10 Global Health. Regression analyses, controlling for demographic and condition-related factors, were performed.Results: Respondents (n=563) had a mean age of 56.5 (standard deviation (SD) 12.7) years. The largest diagnostic groups were chronic pain disorder and brain injury. In addition to demographic and condition-related factors, self-regulation subscales explained 0–15% of the variance in participation outcome scores, and 0–22% of the variance in HRQoL outcome scores. Self-regulation subscales explained up to 22% of the variance in satisfaction subscales of participation (USER-Participation and PROMIS) and the mental health subscale of the PROMIS-10. Self-regulation subscales explained up to 11% of the restriction and frequency subscales of participation (USER-Participation) and the physical health subscale of the PROMIS-10.Conclusion: Self-regulation is more strongly associated with outcomes such as satisfaction with participation and mental health compared with outcomes such as restrictions in participation and physical health.</p

Effect of remote ischemic conditioning on atrial fibrillation and outcome after coronary artery bypass grafting (RICO-trial)

Background: Pre- and postconditioning describe mechanisms whereby short ischemic periods protect an organ against a longer period of ischemia. Interestingly, short ischemic periods of a limb, in itself harmless, may increase the ischemia tolerance of remote organs, e.g. the heart (remote conditioning, RC). Although several studies have shown reduced biomarker release by RC, a reduction of complications and improvement of patient outcome still has to be demonstrated. Atrial fibrillation (AF) is one of the most common complications after coronary artery bypass graft surgery (CABG), affecting 27-46% of patients. It is associated with increased mortality, adverse cardiovascular events, and prolonged in-hospital stay. We hypothesize that remote ischemic pre- and/or post-conditioning reduce the incidence of AF following CABG, and improve patient outcome.Methods/design: This study is a randomized, controlled, patient and investigator blinded multicenter trial. Elective CABG patients are randomized to one of the following four groups: 1) control, 2) remote ischemic preconditioning, 3) remote ischemic postconditioning, or 4) remote ischemic pre- and postconditioning. Remote conditio

Development of the self-regulation assessment and content validation using cognitive interviews in a multicultural post-rehabilitation population

AimSelf-regulation is one of the main goals of medical rehabilitation. Four themes of self-regulation were identified by former patients and rehabilitation physicians in a previous study. Based on these themes, a measure for self-regulation, the self-regulation assessment (SeRA), was developed. This study aimed to establish the content validity of the SeRA in a multicultural and multi-diagnostic post-rehabilitation population.MethodsThe Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology was applied. First, cognitive interviews were held with eight former rehabilitation patients. Feedback was obtained on relevance, comprehensibility, and comprehensiveness of the items. Items with problems were revised. Then, a second series of cognitive interviews was held with 16 former rehabilitation patients with non-Western migration backgrounds. Again, feedback was obtained on relevance, comprehensibility, and comprehensiveness of the items.ResultsThe first series of cognitive interviews revealed good comprehensiveness, and also comprehensibility or relevance problems with 12 of the 25 items. These items were revised or deleted. Two missing concepts were identified and these were added. There was no need to revise the items based on the results of the second series of cognitive interviews.ConclusionThe final version of the SeRA demonstrated content validity for the studied population. The measure is ready for psychometric analyses in subsequent validation studies

Disability, access to food, and the UN CRPD:Navigating a rights-based equality discourse in the Netherlands

Aims In 2016, the Netherlands ratified the UN CRPD, becoming one of the last developed nations to sign on. In this presentation, we will explore how equal access to food provides a lens through which barriers to implementing a rights-based approach to disability equality can be examined in countries that are historically resistant to rights-based equality discourses. Methods Through a literature review, policy research, and interviews with disabled people, representatives of disabled people’s organisations, Dutch legal scholars and government representatives, food system researchers and food banks, we have explored barriers to equal food access in the Netherlands and multiple approaches to overcoming social, economic and physical barriers. Results Analysis indicates that implementation of the UN CRPD and other relevant international and EU policies continues to be limited in the Netherlands due to narrow interpretations, leading to policies and practices that do not foster equal access to resources and environments. Dutch understandings of disability equality are evolving, but encounter opposition from an entrenched system of separation and resistance to mandating change, including a reluctance to even collect data about inequality. Conclusions In our conclusion we will present information about gaps in the knowledge base, and we will also make recommendations for steps the Netherlands could take to create truly inclusive policies and practices