Canadian Study Gathers Patients’ Perspectives on ALS Multidisciplinary Clinics
Integrated care is a definite advantage of multidisciplinary clinics according to amyotrophic lateral sclerosis (ALS) patients, but many complain about travel and mobility impediments as major barriers to attend such clinics, a Canadian study reports.
Many patients also look at multidisciplinary clinics as potential ALS patient advocates to inform health officers and policymakers. Importantly, most patients called for more practitioners and emotional support both for themselves and their caregivers.
The study with those findings, “Patient perspectives on transitioning to amyotrophic lateral sclerosis multidisciplinary clinics,” was published in the Journal of Multidisciplinary Healthcare.
ALS multidisciplinary clinics (MDC) have become the standard of care for ALS worldwide, owing to its ability to improve patients’ quality of life, prolong their survival, and reduce hospital admissions, according to prior research studies.
These clinics bring together a team of medical specialists, providing comprehensive and specialized care, addressing many of a patient’s needs in the same place or even in the same visit.
Despite its reported advantages, few studies have addressed the viewpoint of patients and caregivers about the benefits and barriers to MDCs. In this study, a team of researchers from the University of Saskatchewan, Canada, evaluated the perspectives of ALS patients during their transition to a recently formed MDC in Saskatoon, Canada.
The clinic staff included a neurologist, a physiatrist, a respirologist, a clinic coordinator, a speech language pathologist, a physical therapist, a respiratory therapist and nursing support.
Researchers interviewed 15 patients, focusing on advantages and disadvantages seen in attending an MDC, barriers that could prevent attendance, including the the effect of travel distances and recommendations for the current MDC model.
All patients classified a model with integrated care as definite advantage. Most (87%) also considered the clinical expertise made available by the MDC a strong benefit, as well as access to research (53%).
“… really helpful to just go to one place and to be seen by multiple people instead of having to go to all different places at different times,” one patient stated.
“It’s going to be even more of a benefit as things progress and mobility gets worse, you know, with it all being right there and being to see many people. That’s fantastic,” another patient added.
Many patients (33%) also stressed the potential for the MDC to advocate for patients’ needs close to health and government officials.
The most common barrier pointed to by patients visiting the MDC were the travel difficulties (87%), mainly due to travel distance and the patients’ reduced mobility.
Many (47%) showed particular concern with the travel barriers during winter, although several patients underlined that the benefit of MDC attendance outweighed such impediments.
Given the importance given by patients to this problem, researchers stressed that it seems particularly important that alternatives “such as satellite clinics, telehealth, and home videoconferencing should be explored for those who cannot travel or abide lengthy visits.”
Most patients also had suggestions to enhance the MDC services, in particular the need for more practitioners and for providing emotional support to both patients and caregivers.
Overall, the study highlighted how patient advocacy may be another role for MDCs and, given some patients’ conflicting points of view, “the need for an innovative approach to meet demands for individualized care,” researchers concluded.