The CANadian Pediatric Weight management Registry (CANPWR): lessons learned from developing and initiating a national, multi-centre study embedded in pediatric clinical practice

Abstract

BackgroundThere is increasing recognition of the value of “real-world evidence” in evaluating health care services. Registry-based, observational studies conducted in clinical settings represent a relevant model to achieve this directive. Starting in 2010, we undertook a longitudinal, observational study (the CANadian Pediatric Weight management Registry [CANPWR]), which is embedded in 10 multidisciplinary, pediatric weight management clinics across Canada. The objective of this paper was to share the lessons our team learned from this multi-centre project.MethodsData sources included a retrospective review of minutes from 120 teleconferences with research staff and investigators, notes taken during clinical site visits made by project leaders, information from quality control processes to ensure data accuracy and completeness, and a study-specific survey that was sent to all sites to solicit feedback from research team members (n = 9). Through an iterative process, the writing group identified key themes that surfaced during review of these information sources and final lessons learned were developed.ResultsSeveral key lessons emerged from our research, including the (1) value of pilot studies and central research coordination, (2) need for effective and regular communication, (3) importance of consensus on determining outcome measures, (4) challenge of embedding research within clinical practice, and (5) difficulty in recruiting and retaining participants. The sites were, in spite of these challenges, enthusiastic about the benefits of participating in multi-centre collaborative studies.ConclusionDespite some challenges, multi-centre observational studies embedded in pediatric weight management clinics are feasible and can contribute important, practical insights into the effectiveness of health services for managing pediatric obesity in real-world settings.Electronic supplementary materialThe online version of this article (10.1186/s12887-018-1208-6) contains supplementary material, which is available to authorized users.

Strategies to reduce attrition in managing paediatric obesity: A systematic review

“…Their quantitative data revealed that attrition was higher in older children (≥12 years old) and among families receiving social assistance; qualitative data indicated common reasons for attrition included logistical barriers and interventions not meeting families' needs (eg, families disagreed with the treatment focus or intervention length). Initial data from the CANadian Pediatric Weight management Registry (CANPWR), an ongoing study of children enrolled in multi‐disciplinary obesity management, 23 showed that attrition often occurs early in treatment 24 . Other reports showed that predictors of attrition differed depending on when attrition occurred (ie, earlier vs later in treatment) 25,26 .…”

“…Initial data from the CANadian Pediatric Weight management Registry (CANPWR), an ongoing study of children enrolled in multi-disciplinary obesity management, 23 showed that attrition often occurs early in treatment. 24 Other reports showed that predictors of attrition differed depending on when attrition occurred (ie, earlier vs later in treatment). 25,26 For instance, Spence et al 25 showed that higher self-assessed health of the family system was associated with lower short-term attrition (ie, up to 4-months post-baseline) whereas higher percentage of intervention sessions attended by parents was associated with lower long-term attrition (ie, from 4-to 12-months postbaseline).…”

Clinician and healthcare managers’ perspectives on the delivery of secondary and tertiary pediatric weight management services

“…Many HCMS and some clinicians highlighted the need to embed research into clinical practice to inform best practice models of care and enable the development of a business case for new and/or expansion of services. Clinical groups in Europe (Kurth et al, 2008), Canada (Morrison et al, 2018) and the United States of America (Kirk et al, 2017) have developed central registries to record and analyze standard clinical outcome data from multiple sites in each country. These central registries enable the development of high-quality and meaningful outcome data and multi-site research to identify best practices for pediatric weight management (Kirk et al, 2017).…”

Impact of a paediatric-adult care transition programme on the health status of patients with sickle cell disease: study protocol for a randomised controlled trial (the DREPADO trial)

“…The major limitation of DREPADO trial is the difficulty to implement the transition programme because the intervention is complex [23]; it involves different departments of care, different places of intervention (home, hospital, "neutral place"), and different types of expertise (or the training of personnel in several different fields). This complexity requires good communication and coordination between interlocutors; to aid in this regard, the DREPADO study group provides to each centre tools for communication and training.…”