Background
Including participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologies of how to set up and manage participant involvement activities. Further, there is little discussion of how to do so when dealing with collaborative projects that run across countries and operate in multiple linguistic and regulatory contexts.
Methods
In this paper we describe the set-up, running and experiences of the EPAD participant panel. The EPAD study was a pan-European cohort study with the aim to understand risks for developing Alzheimer’s disease and build a readiness cohort for Phase 2 clinical trials. Due to the longitudinal nature of this study, combined with the enrolment of healthy volunteers and those with mild cognitive impairments, the EPAD team highlighted participant involvement as crucial to the success of this project. The EPAD project employed a nested model, with local panels meeting in England, France, Scotland, Spain and The Netherlands, and feeding into a central study panel. The local panels were governed by terms of reference which were adaptable to local needs.
Results
The impact of the panels has been widespread, and varies from feedback on documentation, to supporting with design of media materials and representation of the project at national and international meetings.
Conclusions
The EPAD panels have contributed to the success of the project and the model established is easily transferable to other disease areas investigating healthy or at-risk populations.
BackgroundObstructive sleep apnea (OSA), a common and serious disorder in which breathing repeatedly stops during sleep, is associated with excess weight and obesity. Little is known about the co-occurrence of OSA among pregnant women from low and middle-income countries.MethodsWe examined the extent to which maternal pre-pregnancy overweight or obesity status are associated with high risk for OSA, poor sleep quality, and excessive daytime sleepiness in 1032 pregnant women in Lima, Peru. The Berlin questionnaire was used to identify women at high risk for OSA. The Pittsburgh Sleep Quality Index (PSQI) and Epworth Sleepiness Scale (ESS) were used to examine sleep quality and excessive daytime sleepiness, respectively. Multinomial logistic regression procedures were employed to estimate odds ratios (aOR) and 95 % confidence intervals (CI) adjusted for putative confounding factors.ResultsCompared with lean women (<25 kg/m2), overweight women (25–29.9 kg/m2) had 3.69-fold higher odds of high risk for OSA (95 % CI 1.82–7.50). The corresponding aOR for obese women (≥30 kg/m2) was 13.23 (95 % CI: 6.25–28.01). Obese women, as compared with their lean counterparts had a 1.61-fold higher odds of poor sleep quality (95 % CI: 1.00–2.63).ConclusionOverweight or obese pregnant women have increased odds of sleep disorders, particularly OSA. OSA screening and risk management may be indicated among pregnant women in low and middle income countries, particularly those undergoing rapid epidemiologic transitions characterized by increased prevalence of excessive adult weight gain.
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