An Internet-based migraine headache diary: issues in Internet-based research.

OBJECTIVE: The primary purpose of this study was to explore the feasibility and acceptability of using an Internet-based headache diary to obtain acceptable completion rates of daily diaries.
BACKGROUND: Migraine sufferers often perceive that headaches are unpredictable, but 70% have prodromal warning symptoms that may be identified via daily headache diaries. Although diaries are widely used for tracking headaches, Internet-based diaries have not been used previously.
METHODS: A conventional headache diary was formatted for the Internet to collect daily headache data over 4 months using a time-series design.Women between 18 and 55 years who were not pregnant or postmenopausal, and whose headaches met migraine criteria, were recruited primarily via the Internet, completed online consent forms, and were screened via telephone. They completed health history questionnaires and daily diary pages containing scales and open-ended questions,which were saved to a database. Diaries were reviewed and participants were contacted weekly. Completion dates were tracked electronically. Follow-up interviews addressed perceptions about study experiences, and participants received feedback about headache patterns.
RESULTS: The majority of participants were recruited from discussion boards and free classified web sites. Of the 101 participants enrolled, 24 withdrew prior to completing 4 months of diary entries. Participants (n = 77) had a mean age of 37.5(7.5) years and were primarily white (82%) and well-educated (93%). They lived in 21 US states, and one in the UK. The majority (68%) completed at least 50% of their diary pages within 24 hours; 75% of all pages were completed within 2 days. At least 64 (83%) kept notes or printed pages when they lacked Internet access. In a follow-up survey (n = 67), 87% would have been willing to continue the diary for another 2 months; 69% had not previously participated in any research. Participants also reported that the study helped them better understand their headache patterns, that the study was a major commitment but worthwhile, and that they felt they had helped others by participating.
CONCLUSION: The Internet-based headache diary is a feasible, acceptable data collection tool that can access geographically diverse populations who have not previously participated in research studies. Use of an Internet-based approach was found to be feasible for recruitment and retention of such diverse populations.