Methods, Challenges, and Lessons Learned: Surveying Individuals With Multiple Sclerosis to Evaluate the Impact of Adult Day Programs
Kenyon, A. E., Fuller, K. J., Maier, J., & Trisolini, M. (2010, May). Methods, Challenges, and Lessons Learned: Surveying Individuals With Multiple Sclerosis to Evaluate the Impact of Adult Day Programs. Presented at IFD&TC 2010, .
This presentation describes the planning, implementation, and lessons learned from conducting on-site and telephone surveys with individuals with multiple sclerosis (MS). MS is a debilitating disease that can impact patients’ physical and cognitive abilities. Sponsored by the National Multiple Sclerosis Society, the primary goal of the Multiple Sclerosis Adult Day Program Evaluation Study (MSADP) was to evaluate five adult day programs serving individuals with multiple sclerosis to determine whether individuals attending these programs experience more positive social and health outcomes than those who do not attend such programs. The team conducted two waves of on-site interviews, 18 months apart, with program participants at five MS adult day programs located in Colorado, New York, California, Ohio, and Minnesota, and also by telephone with a comparison group of individuals with MS, in these same geographical areas, who did not attend adult day programs. In Wave 1, we interviewed a total of 641 individuals (223 in-person and 407 by telephone), achieving an 89% response rate. In Wave 2, we reinterviewed 561 subjects—157 interviews were conducted in-person and 418 were completed by telephone; the Wave 2 response rate was also 89%. This presentation describes the challenges faced in developing and conducting on-site and telephone interviews with disabled individuals, how we addressed these challenges, and lessons learned. Challenges included working with individual sites’ institutional review boards (IRBs), recruiting a “comparison group” to interview by telephone, and developing materials and an interview protocol that maximized the ability of disabled individuals to understand and respond to both the on-site and telephone interviews. Lessons learned included the need to allow frequent breaks for participants due to the increased incidence of fatigue, to permit an “assisted interview” in cases where participants could not make themselves easily understood, and to train field interviewers at the larger sites to accommodate participants who were unable to meet their scheduled interview due to illness or schedule conflicts. The challenges experienced and lessons learned are applicable to interviewing individuals with limitations that can impact their ability to participate in a standard telephone or in-person interview.