Journal
AMYOTROPHIC LATERAL SCLEROSIS AND FRONTOTEMPORAL DEGENERATION
Volume 17, Issue 1-2, Pages 55-61Publisher
TAYLOR & FRANCIS LTD
DOI: 10.3109/21678421.2015.1069851
Keywords
multidisciplinary care; qualitative study; quality of life; amyotrophic lateral sclerosis
Categories
Funding
- Paul and Harriet Campbell Fund for ALS Research
- ALS Association Greater Philadelphia Chapter
Ask authors/readers for more resources
Objectives: 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.
Authors
I am an author on this paper
Click your name to claim this paper and add it to your profile.
Reviews
Recommended
No Data Available