Helen E Stephens1, Jared Young2, Stephanie H Felgoise2, Zachary Simmons1,3. 1. a Department of Neurology , The Pennsylvania State University College of Medicine , Hershey PA . 2. c Department of Psychology , Philadelphia College of Osteopathic Medicine , Philadelphia PA , USA. 3. b Department of Humanities , The Pennsylvania State University College of Medicine , Hershey PA , and.
Abstract
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.
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.
Entities:
Keywords:
amyotrophic lateral sclerosis; multidisciplinary care; qualitative study; quality of life
Authors: Sabrina Paganoni; Marc van de Rijn; Kristin Drake; Katherine Burke; Michael Doyle; Amy Swartz Ellrodt; Katherine Nicholson; Nazem Atassi; Fabiola de Marchi; Suma Babu; Juan Estrada; Lee H Schwamm; James D Berry Journal: Muscle Nerve Date: 2019-06-27 Impact factor: 3.217
Authors: Evan M Pucillo; Nancy Christensen-Mayer; Shelly D Poole; Denise M Whitten; Danielle Freeman; Blake R Bohe; Brandon R Swensen; A Gordon Smith; Nicholas E Johnson Journal: J Multidiscip Healthc Date: 2016-10-03
Authors: Christiana A Demetriou; Petros M Hadjivasiliou; Kleopas A Kleopa; Yiolanda P Christou; Eleni Leonidou; Theodoros Kyriakides; Eleni Zamba-Papanicolaou Journal: PLoS One Date: 2019-09-06 Impact factor: 3.240
Authors: Stephanie R Keller; Eric J Mallack; Jennifer P Rubin; Jennifer A Accardo; Jennifer A Brault; Camille S Corre; Camila Elizondo; Jennifer Garafola; April C Jackson-Garcia; Jullie Rhee; Elisa Seeger; Kaprice C Shullanberger; Amanda Tourjee; Melissa K Trovato; Amy T Waldman; Jenna L Wallace; Michael R Wallace; Klaus Werner; Angela White; Kevin C Ess; Catherine Becker; Florian S Eichler Journal: J Child Neurol Date: 2020-09-02 Impact factor: 1.987