Stakeholder perceptions of complementary and alternative medicine from people living with rare diseases in Northern Ireland

Abstract

Introduction: Only five percent of rare diseases have an orthodox modern medicine treatment available, therefore patients often utilise complementary and alternative medicines (CAMs) to help manage their condition. Several CAMs are supported by scientific evidence as effective for aiding management of rare diseases, however the methodological rigour of published literature may be sub-optimal and it can be difficult to show that an outcome is a direct result of the CAM intervention. Patients and healthcare professionals must weigh up the safety, efficacy, practical logistics, and financial implications of utilising CAMs for rare diseases. This study aimed to elucidate perspectives of stakeholders, (individuals with rare diseases, carers, family members, CAMs practitioners and healthcare professionals) on the usage of CAMs for rare diseases across Northern Ireland. Methods: An online survey was open January – February 2019 (n = 29 responses). Themes identified from the survey were then discussed with stakeholders in a semi-structured discussion workshop in March, 2019. Results: Patients with rare diseases reported CAMs as effective in the management of their condition, in particular acupuncture, dietary supplements, herbal medicines, homeopathy, hydrotherapy / swimming, kinesiology, mindfulness, pilates, reflexology, tai chi, and yoga. In this study, seven survey respondents experienced a negative side effect from CAMs. Workshop participants raised the lack of information available about CAMs and rare disease. Both the survey and workshop identified inequality of access with participants reporting CAMs to be expensive and expressing a desire for more therapies to be available within the United Kingdom (UK) National Healthcare Service (NHS). Conclusions: Many patients with rare diseases report that CAMs are helpful in the management of their condition. More information, high quality research, and education about CAMs is required for patients and healthcare professionals to help make informed decisions about the usage of CAMs for rare diseases. Improved communication, information, and health and social care in general would help individuals be more confident and knowledgeable about therapeutic options in relation to their rare disease(s).