A survey created by Eurodis, a European rare disease advocacy alliance, has shown that those living with a rare disease have a worse healthcare experience than people with a chronic illness. The international survey asked patients to rate their overall healthcare experience, and rare disease patients responded with an average of 2.5 on a scale from 1 to 5. This question, among others, aims to comprehend how to improve the healthcare system for those living with rare disorders.
About The Survey
The H-Care pilot survey was conducted using Eurodis’ Rare Barometer Program, which is a tool that automatically gathers the opinions of patients and their caregivers so that they will be included in the decision and policy-making process. The international survey is also the first of its kind, as no other large-scale survey has attempted to evaluate rare disease patients’ experiences with healthcare.
In terms of content, the survey consists of an adapted version of the Patient Assessment of Care for Chronic Conditions (PACIC) questionnaire so that it fits rare disease patients and two questions in the subject of psychologic care. On a scale from one to five, rare disease patients and caregivers would rate how often the healthcare system addressed various aspects of their care.
The survey was distributed to 36 hospitals and taken by 3,905 patients over the age of twelve or their caregivers. Over 900 diseases and 65 countries are represented within the responses.
The Results
On a scale of 1 to 5, rare disease patients rated their healthcare experienced at an average of 2.5. When compared to the experience of chronic illness patients that was studied using the PACIC questionnaire, the score is 70% lower. To explain this statistic, Eurodis stated that rare disease patients often face major obstacles when trying to access treatment that actually meets their needs.
Other results further demonstrate that the current healthcare system is not doing enough for rare disease patients, and that change must be made. Specifically, it identified three areas that require the most improvement: psychological assistance, follow-up consultations, and guidance on support and resources. Further problems illuminated by the survey include the lack of concern for caregivers and the lack of recommendations on everyday self-management of one’s disease.
The survey also pointed out that patients had a better healthcare experience at expert centers rather than more general centers. Despite this, patients noted that the two types of healthcare center could improve on the same aspects.
Looking Forward
Based on these results, Eurodis recommends that healthcare systems include access to high-quality specialized care. Specifically, they want expert centers and other providers to share knowledge, along with increased access to both in-person and virtual advice from physicians and experts.
Eurodis stresses the importance of a survey like theirs, stating that a questionnaire that adequately evaluates the experience of those with rare disorders must be both created and put into use. Hopefully this survey brings action from policymakers that improves the lives of rare disease patients.
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