Abstracts

Rationale: Rationale: Effectively managing long-term follow-up research studies is challenging given families' patterns of mobility, extra-curricular activities, long work days and dynamic family structure. Our objective is to describe common challenges locating and retaining participants in multi-centre long-term follow-up studies and propose effective strategies to optimize quantity and quality of responses based on experiences from one study. Methods: Methods: Using our experiences in the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES),we will describe key challenges in study management including: locating families, establishing contact to confirm continued participation,changes in family structure and specific study respondents,and other unanticipated challenges. Data will be presented on the results of strategies we employed in response to these challenges. HERQULES was a multi-center study that initially followed children ages 4-12 years newly diagnosed with epilepsy over 2 years using parent and physician report at 4 times. A longer-term follow-up is currently underway with 282 of the original sample 6-9 years later with two more data collection points, again using parent and physician-report and adding patient self- report. Results: Results: LOCATING FAMILIES: By implementing a series of steps and adapting originally planned methods, we ultimately located 84% of the 282 families eligible for the long-term follow-up with 79% enrolling in HERQULES 2. ESTABLISHING CONTACT: Data supporting processes for connecting with busy families across 5 time zones and effective communication strategies will be outlined. By tracking number of telephone calls, we know that 24% of enrolled parents and 18% of enrolled children required 5-20 attempts to contact. CHANGING FAMILY STRUCTURE: We anticipated possible scenarios, created plans, trained staff and provided support when the unanticipated occurred (e.g. news of child's death since last contact). CHANGES IN RESPONDENT: Changing family structure, mobile physicians and growing children resulted in some unavoidable changes in specific respondent reporting information from initial to long-term follow-up study, creating data collection and analysis challenges (e.g. 28 children had a different physician responder in HERQULES 2). UNANTICIPATED CHALLENGES: We anticipated that an online self-report questionnaire would be the preferred method for youth but 33% requested a paper version. All parent respondents met the inclusion criterion of sufficient English language skills to complete questionnaire but a small number of their children, now respondents in the long-term follow-up, had insufficient English language, necessitating a translation of the questionnaire. Conclusions: Conclusions: It is possible to create practical solutions, achieving good response and retention rates and high quality data in long-term follow-up studies. While each study may have unique challenges, it is likely that similar challenges occur in most studies. Sharing experiences and best practices may better equip project managers with more effective strategies.