Data harmonization and federated learning for multi-cohort dementia research using the OMOP common data model: A Netherlands consortium of dementia cohorts case study.

BACKGROUND: Establishing collaborations between cohort studies has been fundamental for progress in health research. However, such collaborations are hampered by heterogeneous data representations across cohorts and legal constraints to data sharing. The first arises from a lack of consensus in standards of data collection and representation across cohort studies and is usually tackled by applying data harmonization processes. The second is increasingly important due to raised awareness for privacy protection and stricter regulations, such as the GDPR. Federated learning has emerged as a privacy-preserving alternative to transferring data between institutions through analyzing data in a decentralized manner. METHODS: In this study, we set up a federated learning infrastructure for a consortium of nine Dutch cohorts with appropriate data available to the etiology of dementia, including an extract, transform, and load (ETL) pipeline for data harmonization. Additionally, we assessed the challenges of transforming and standardizing cohort data using the Observational Medical Outcomes Partnership (OMOP) common data model (CDM) and evaluated our tool in one of the cohorts employing federated algorithms. RESULTS: We successfully applied our ETL tool and observed a complete coverage of the cohorts' data by the OMOP CDM. The OMOP CDM facilitated the data representation and standardization, but we identified limitations for cohort-specific data fields and in the scope of the vocabularies available. Specific challenges arise in a multi-cohort federated collaboration due to technical constraints in local environments, data heterogeneity, and lack of direct access to the data. CONCLUSION: In this article, we describe the solutions to these challenges and limitations encountered in our study. Our study shows the potential of federated learning as a privacy-preserving solution for multi-cohort studies that enhance reproducibility and reuse of both data and analyses.

The impact of COVID-19 related adversity on the course of mental health during the pandemic and the role of protective factors: a longitudinal study among older adults in The Netherlands.

PURPOSE: Many studies report about risk factors associated with adverse changes in mental health during the COVID-19 pandemic while few studies report about protective and buffering factors, especially in older adults. We present an observational study to assess protective and buffering factors against COVID-19 related adverse mental health changes in older adults. METHODS: 899 older adults (55 +) in the Netherlands were followed from 2018/19 to two pandemic time points (June-October 2020 and March-August 2021). Questionnaires included exposure to pandemic-related adversities ("COVID-19 exposure"), depressive and anxiety symptoms, loneliness, and pre-pandemic functioning. Linear regression analyses estimated main effects of COVID-19 exposure and protective factors on mental health changes; interaction effects were tested to identify buffering factors. RESULTS: Compared to pre-pandemic, anxiety symptoms, depression symptoms and loneliness increased. A higher score on the COVID-19 adversity index was associated with stronger negative mental health changes. Main effects: internet use and high mastery decreased depressive symptoms; a larger network decreased anxiety symptoms; female gender, larger network size and praying decreased loneliness. COVID-19 vaccination buffered against COVID-19 exposure-induced anxiety and loneliness, a partner buffered against COVID-19 exposure induced loneliness. CONCLUSION: Exposure to COVID-19 adversity had a cumulative negative impact on mental health. Improving coping, finding meaning, stimulating existing religious and spiritual resources, network interventions and stimulating internet use may enable older adults to maintain mental health during events with large societal impact, yet these factors appear protective regardless of exposure to specific adversities. COVID-19 vaccination had a positive effect on mental health.

The mediating role of unhealthy behavior in the relationship between shift work and perceived health.

BACKGROUND: Little is known about the relationship between shift work and perceived health, including potential underlying mechanisms such as unhealthy behaviors. The aim of this study was to investigate whether unhealthy behaviors mediate the relationship between shift work and perceived mental and physical health, taking into account potential differences by level of education. METHODS: Data from 1633 workers participating in the Doetinchem Cohort Study during 1995-2016 were used. Being engaged in shift work was determined at 1 year preceding the assessment of health behaviors. Mental and physical health were assessed after 5 years of follow-up by the 5-item Mental Health Inventory and the physical functioning scale of the 36-item Short Form Health Survey. Smoking, physical inactivity, alcohol consumption, and overweight were considered as potential mediators and education was treated as moderator. Moderated mediation analyses using generalized estimated equations were performed. RESULTS: Shift work was not statistically significantly related to either mental or physical health. Despite this, statistically significant mediation effects of smoking (Beta - 0.09; 95% Confidence Interval - 0.20 - -0.01, respectively B -0.09; 95%CI -0.21 - -0.01) and physical inactivity (B 0.11; 95%CI 0.03-0.23, respectively B 0.08; 95%CI 0.01-0.18) were found in the relationship between shift work and mental or physical health. Direct and indirect effects outweighed each other in the relationship between shift work and mental health, since the direction of these effects was opposite. The relationship between shift work, unhealthy behavior, and health was not different by educational level. CONCLUSION: Shift workers did not report lower mental or physical health than non-shift workers. Though mediation effects of unhealthy behavior were observed in the relationship between shift work and perceived health, these small effects had minor public health relevance.

Improving Communication of Information About Physical Activity Opportunities for People With Disabilities.

One significant barrier to physical activity (PA) for people with disabilities is the lack of access to PA information. The purpose of this study was to explore how access to PA information can be improved for people with disabilities, their carers, and PA-session facilitators. To investigate the flow of PA information within a communication network, principles derived from knowledge translation were used: information audiences, messengers, methods, and effectiveness. Participants included 48 people with disabilities (34 male and 14 female; mean age 30 years), 34 carers, and 12 session facilitators. Qualitative data were analyzed using thematic analysis. Results show how communication of PA information can be improved by indicating practical value in understanding individual motivations to PA participation, including credible messengers, using multiple delivery methods, and expanding information networks. Future steps are offered, including practical implications resulting from this study to improve PA information flow within a network.

Barriers to and facilitators of sports participation in people with visual impairments.

We examined barriers to and facilitators of sports participation in people with visual impairments. Participants registered at Royal Visio, Bartiméus, and the Eye Association were invited to complete a questionnaire (telephone or online). Six hundred forty-eight of the invited participants (13%) completed the questionnaire, and 63% of the respondents reported sports participation. Walking (43%), fitness (34%), and cycling (34%) were frequently mentioned sports. Costs, lack of peers/buddies, and visual impairment were negatively associated with sports participation, whereas higher education and computer (software) use were positively associated. The most important personal barrier was visual impairment; transport was the most important environmental barrier. Active participants also mentioned dependence on others as a personal barrier. The most important personal facilitators were health, fun, and social contacts; support from family was the most important environmental facilitator. To improve sports participation in people with visual impairments, the emphasis in a sports program should be on the positive aspects of sports, such as fun, health, and social contacts.

Reliability of translation of the RAND 36-item health survey in a post-rehabilitation population.

The aim of this study is to evaluate the reliability of the RAND 36-item Health survey as a measure of health-related quality of life in a general Dutch post-rehabilitation population. A total of 752 ex-rehabilitation patients were invited to complete the Dutch RAND 36-item health survey. After 2 weeks, the people who responded to the first questionnaire were asked to complete the same questionnaire again. Internal consistency of the questionnaire was expressed as Cronbach's α. Test-retest reliability was expressed as intraclass correlation coefficient (ICC) and presented in Bland-Altman plots. Internal consistency was found acceptable for all subscales (n=276; Cronbach's α ranged from 0.81 to 0.95). Test-retest reliability was found acceptable for research and group comparisons for all subscales (n=184; ICC ranged from 0.71 to 0.88). Overall, test-retest reliability of the physical functioning (ICC=0.86), pain (ICC=0.87), and general health (ICC=0.88) subscale was relatively high, and that of health change (ICC=0.71) was relatively low. Reliability of the questionnaire did not notably differ between participants who indicated stable health and participants who indicated health change during the past weeks. In conclusion, the Dutch translation of the RAND 36-item health survey is reliable for research and group comparisons in a general post-rehabilitation population. However, the RAND 36-item health survey is not sufficiently reliable for individual comparisons within this population.

Health Related Quality of Life in a Dutch Rehabilitation Population: Reference Values and the Effect of Physical Activity.

PURPOSE: To establish reference values for Health Related Quality of Life (HRQoL) in a Dutch rehabilitation population, and to study effects of patient characteristics, diagnosis and physical activity on HRQoL in this population. METHOD: Former rehabilitation patients (3169) were asked to fill in a questionnaire including the Dutch version of the RAND-36. Differences between our rehabilitation patients and Dutch reference values were analyzed (t-tests). Effects of patient characteristics, diagnosis and movement intensity on scores on the subscales of the RAND-36 were analyzed using block wise multiple regression analyses. RESULTS: In total 1223 patients (39%) returned the questionnaire. HRQoL was significantly poorer in the rehabilitation patients compared to Dutch reference values on all subscales (p<0.001) except for health change (p = 0.197). Longer time between questionnaire and last treatment was associated with a smaller health change (p = 0.035). Higher age negatively affected physical functioning (p<0.001), social functioning (p = 0.004) and health change (p = 0.001). Diagnosis affected outcomes on all subscales except role limitations physical, and mental health (p ranged <0.001 to 0.643). Higher movement intensity was associated with better outcomes on all subscales except for mental health (p ranged <0.001 to 0.190). CONCLUSIONS: HRQoL is poorer in rehabilitation patients compared to Dutch reference values. Physical components of HRQoL are affected by diagnosis. In rehabilitation patients an association between movement intensity and HRQoL was found. For clinical purposes, results of this study can be used as reference values for HRQoL in a rehabilitation setting.

Sports participation after rehabilitation: Barriers and facilitators.

OBJECTIVE: To analyse barriers to, and facilitators of, sports participation among people with physical disabilities after rehabilitation and to compare differences between inactive and active participants regarding these experienced barriers and facilitators. METHODS: Participants were 1,223 adults (mean age 51.6 years, standard deviation 15.1 years) treated in the Rehabilitation Centre of the University Medical Center Groningen, who completed a questionnaire. The questionnaire consisted of a self-constructed questionnaire regarding barriers and facilitators. RESULTS: Fifty-eight percent of the participants were active in sports after their rehabilitation. Younger age and a higher level of education were positively associated with sports participation, whereas using assistive devices and experiencing environmental barriers were negatively associated. Facilitators of sports participation were health, fun and increasing physical strength, and advice from rehabilitation professionals. CONCLUSION: Rehabilitation professionals should emphasize the health benefits of, and enjoyment from, sports participation for people with physical disabilities. They should repeatedly remind people with physical disabilities to stay/become active after completing their rehabilitation programme. Rehabilitation professionals should also provide information about strategies to reduce environmental barriers to sports participation, which could help people using assistive devices to overcome these barriers.

Barriers and facilitators of sports in children with physical disabilities: a mixed-method study.

PURPOSE: This study explored barriers and facilitators of sports participation of children with physical disabilities from the perspective of the children, their parents and their health professionals. METHOD: Thirty children and 38 parents completed a questionnaire, and 17 professionals were interviewed in a semi-structured way. Data from the three groups were combined in a mixed-method design, after which the results were triangulated. RESULTS: Mean age (SD) of the children was 14.1 (2.9) years old, 58% were boys. Sixty-seven percent of the children had cerebral palsy and 77% participated in sports after school. Most commonly practiced sports were swimming, cycling and football. Children specifically experienced dependency on others as a barrier, parents did not have enough information about sports facilities, and professionals observed that the family's attitude had influence on the child's sports participation. Facilitators were health benefits, fun and social contacts. CONCLUSION: Sports participation of children with physical disabilities is a complex phenomenon because children, their parents and professionals reported different barriers. Sports participation is more physically challenging for children with severe physical disabilities, as their daily activities already require much energy. However, the psychosocial benefits of sports are applicable to all children with physical disabilities. IMPLICATION FOR REHABILITATION: Perceived barriers seemed to differ for children, parents and health professionals, suggesting that sports participation is a complex phenomenon. Sports might be more physically challenging for children with severe physical disabilities, as their daily activities already take much energy. The psychosocial benefits of sports should be emphasized by rehabilitation professionals when advising children with physical disabilities about sports.