Abstracts

RATIONALE: Questions about the long-term prognosis of epilepsy require rigorously designed prospective studies. Key to the validity of these studies is a high follow-up rate. We describe some of the techniques and approaches currently being used in the Connecticut Study of Epilepsy. Our methods are based on recognition of the uniqueness of each family and sensitivity to and consideration of each of them.
METHODS: 1.[underline]Establish relationship with family: [/underline]The study was introduced to families by treating physicians at the time of an office visit or in a personally addressed letter. Families were interviewed at their convenience in their homes. During subsequent follow-up calls, interviewers take the time to allow parents to relay information and concerns (e.g.life-cycle events, concerns about schooling, etc). The interviewer notes such conversations and, when appropriate, inquires about the event during a subsequent follow-up call 2 .[underline]Logistics of maintaining contact: [/underline]Follow-up calls are made every 3-4 months. Telephone numbers of friends and family of participants were requested at the intiial interview and periodically are reviewed with participants. Self-addressed postage paid change of address and telephone post cards are sent to families who plan to move or to those whose telephone numbers are found to be no longer in service.
3.[underline]The study as a resource: [/underline] Initially a book on epilepsy in children was given to each family for participating in the study. Information for contacting relevant agencies and institutions is made available upon request. The study sends mailings from the local Epilepsy Foundation about their summer camp and other programs that may be beneficial to study participants. 4.[underline]Being unobtrusive, flexible, and supportive: [/underline] The researchers are sensitive to stressors such as illnesses, deaths, divorces, changes in employment, and moving that may affect families.Taking the time to listen to participants and being sensitive to their needs and flexible about conducting the follow-up calls lessens the imposition posed by the study on their time. Some participants prefer email communication rather than phone calls. Others have preferences about when and where they are called (home/work, weekday/weekend). Respecting these preferences helps minimize the interruption to the family. 5.[underline]Age of Majority: [/underline] When study subjects attain majority, they are invited to continue their participation in the study as adults and appropriate informed consent and authorizations are obtained. Their preferences as to whether we continue to communicate with their parents, with them, or with either are determined. 6.[underline]Ongoing acknowledgement, appreciation, and support: [/underline]. During follow-up calls, we acknowledge their continued participation and remind them of how valuable their contribution is to the study. Periodically families are sent reprints of articles published about the study.
RESULTS: Over a period of 5-9 years, (median 7) only 29 (4.7%) of families have been lost to follow-up, and 11 (1.8%) refused to continue follow-up after study entry.
CONCLUSIONS: Behind the mechanics of a successful follow-up study are numerous personal and inter-personal factors that turn study subjects into active interested participants in a research project.
[Supported by: NIH-NINDS grant #R01- NS 31146]