A Qualitative Study of Multidisciplinary ALS Clinic Use in the United States.
OBJECTIVE
The multidisciplinary clinic (MDC) has become the standard of care for individuals with amyotrophic lateral sclerosis (ALS) in the United States, yet many patients choose not to receive care at MDCs. We undertook a qualitative study of individuals with ALS to explore patients' perceptions of this form of service delivery.


METHODS
Participants completed an online survey that posed open-ended questions about their attitudes and behaviors surrounding MCDs. Qualitative analysis was performed whereby response data was evaluated and grouped into themes.


RESULTS
The unique aspect of MDCs most commonly cited by patients was integrated care. Other reasons for attending MDC included those common to specialist centers, such as expertise, access to clinical trials, and participation in research. Perceived disadvantages unique to the MDC model were long and tiring visits. In common with many specialist centers, long travel times were cited as a disadvantage of MDCs.


CONCLUSIONS
This information provides a foundation for improving ALS care. For those able to travel, the MDC model has much to offer, but patients' time should be respected. For those patients who cannot travel, alternative models of care should be devised to provide integrated care, clinical expertise, and access to research.
a Department of Neurology , The Pennsylvania State University College of Medicine , Hershey PA .
Helen E
HE
Stephens
c Department of Psychology , Philadelphia College of Osteopathic Medicine , Philadelphia PA , USA.
Jared
J
Young
c Department of Psychology , Philadelphia College of Osteopathic Medicine , Philadelphia PA , USA.
Stephanie H
SH
Felgoise
a Department of Neurology , The Pennsylvania State University College of Medicine , Hershey PA .|b Department of Humanities , The Pennsylvania State University College of Medicine , Hershey PA , and.
Zachary
Z
Simmons
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000554:Ambulatory Care Facilities / Q000706:statistics & numerical data*; D000690:Amyotrophic Lateral Sclerosis / Q000453:epidemiology* / Q000523:psychology / Q000534:rehabilitation*; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care / Q000523:psychology / Q000706:statistics & numerical data*; D010348:Patient Care Team / Q000706:statistics & numerical data*; D014481:United States / Q000453:epidemiology; D014600:Utilization Review; D055815:Young Adult
amyotrophic lateral sclerosis; multidisciplinary care; qualitative study; quality of life