Use of Complementary and Alternative Medicine in Children with Neuromuscular Disorders Followed at Penn State Health Pediatric Muscular Dystrophy Association Care Center Clinic

Abstract

The exact prevalence of complementary and alternative medicine (CAM) use is not known in pediatric patients with neuromuscular diseases followed by any of the 150 Muscular Dystrophy Association (MDA) Care Center Clinics nationwide. This study describes the prevalence and variety of CAM usage in this population, while also assessing the prevalence of caregiver disclosure of CAM use and caregiver perception of provider support for CAM. Fifty-two caregivers of pediatric patients seen at Penn State Health's Pediatric MDA Care Center Clinic completed our online survey. Overall, 19.2% of caregivers reported CAM use by their child. Less than half of caregivers reported discussing CAM use with their child's neurologist (41.5%); however, a majority of respondents reported interest in using CAM for their child in the future (52.8%). Understanding the prevalence of CAM usage and disclosure in pediatric MDA clinics may facilitate safer use of CAM in this community.

Perceptions of Complementary, Alternative, and Integrative Medicine Among Neurology Researchers and Clinicians: A Large-Scale, International Cross-Sectional Survey

“…This raises a concern surrounding patient-physician communication and patientcentric care. It is well-established in literature that the majority of CAIM users do not inform or consult their medical caregivers about their CAIM use [61][62][63][64] . Previous studies report that patients withhold CAIM-related information primarily due to a lack of inquiry by the provider as well as the perception that their provider is not knowledgeable about CAIM 64,65 .…”

“…It is well-established in literature that the majority of CAIM users do not inform or consult their medical caregivers about their CAIM use 61-64 . Previous studies report that patients withhold CAIM-related information primarily due to a lack of inquiry by the provider as well as the perception that their provider is not knowledgeable about CAIM 64,65 . Parents of paediatric headache patients have admitted to being positively surprised by neurologists who acknowledge CAIM and are able to provide any insight towards integrating CAIM in their child’s treatment plan 65 .…”

Perceptions and attitudes regarding complementary, alternative, and integrative medicine among published neurology authors: a large-scale, international cross-sectional survey

“…This raises concerns surrounding patient-physician communication and patientcentric care. It is well-established in the literature that the majority of patients who use CAIM do not inform or consult their medical caregivers about their use of these therapies [56][57][58][59]. Previous studies report that patients withhold CAIM-related information primarily due to a lack of inquiry by the provider as well as the perception that their provider is not knowledgeable about CAIM [59,60].…”

“…It is well-established in the literature that the majority of patients who use CAIM do not inform or consult their medical caregivers about their use of these therapies [56][57][58][59]. Previous studies report that patients withhold CAIM-related information primarily due to a lack of inquiry by the provider as well as the perception that their provider is not knowledgeable about CAIM [59,60]. Parents of paediatric patients with headache have admitted to being positively surprised by neurologists who acknowledge CAIM and are able to provide any insight towards integrating CAIM into their child's treatment plan [60].…”