Finding accurate information about rare diseases (RD) remains a challenge, especially for Polish patients with RD who are not fluent in English. Poland has not yet adopted a National Plan for RD, the draft of which requires the Ministry of Health to ensure that access to information about RD is adapted for lay audiences.
The aim of the study was to investigate the information needs of patients with RD in Poland, and those of their carers, as well as the existing information gaps, in order to inform design of an appropriate information system for these groups.
This study formed a part of a larger research project on systemic need of patients with RD. Following a focus group study, a self-constructed questionnaire was developed and distributed via patient associations and support groups. The following areas were covered: sources of information about the disease, the perceived value of the sources used, and existing information gaps. Additionally, two questions assessed the use of foreign language information sources.
A total of 555 patients and carers out of the 879 invited completed the questionnaire. The internet (24%) and social media sites (22%) were the most commonly used sources of information, with physicians scoring the third position (20%). Personal relations with other patients were revealed as the most valuable source of information (31%), followed closely by physicians (30%). Scarcity of information was indicated in a range of areas, with particular emphasis on insufficient data on effectiveness of treatments and therapies offered to patients (86%). Most (58%) of responders utilised foreign language information sources when seeking disease-related information. This was positively correlated to place of residence.
Patients with RD and their carers in Poland rely primarily on patient-to-patient contacts to satisfy their information needs. There is a broad range of information that is currently difficult to obtain; specifically, resources about the available therapies and outcomes, as well as broader disease management strategies are lacking.
Patient or healthcare consumer involvement:
This study was carried out thanks to patients's involvement, with more than 20 patient associations and support groups co-operating in the distribution of the survey.