Multidisciplinary ALS clinics provide recommendations at each visit, but these do little good unless recalled and followed. This study was conducted to determine recall of, and compliance with, these recommendations, and to study factors affecting compliance. Patients were contacted by telephone six weeks after their ALS clinic visit and asked about recommendations made by the multidisciplinary team. Themes for recall and compliance were generated by three coders using qualitative analysis, and validated using triangulation and consensual validation. Pearson correlation coefficients were calculated for the relationship of function and quality of life to recommendation categories. Results demonstrated that most recommendations centered around physical needs, whereas few were provided for Caregiver Support and Mental Health. Fewer than 40% of all recommendations were recalled, with the highest category being Physical Function. Compliance was highest for this category as well (mean 4.27/5). Monitoring of patients between clinic visits appeared to enhance compliance. In conclusion, for ALS clinic teams seeking to maximize the impact of recommendations, discussions to facilitate understanding, instruction in problem-solving skills, and closer follow-up between clinic visits should facilitate better recall and compliance, and thus improve care. The potential benefits of greater emphasis on mental health and caregiver well-being should be explored.
Keywords: Amyotrophic lateral sclerosis; adherence; compliance; multidisciplinary care.