Health information behaviour of rare disease patients: seeking, finding and sharing health information

Abstract

Background Rare disease patients find independent health information seeking necessary due to the general lack of knowledge on rare diseases and inadequate information provision by health care professionals. Objective The aim of this study is to describe distinctive aspects of health information behaviour of rare disease patients and specific challenges they face when seeking health information. Methods A qualitative research approach was employed including semi‐structured interviews that were analysed using thematic analysis. Fifteen respondents suffering from three different rare diseases participated in the study. Results Health information behaviour of rare disease patients is characterised by independent and continuous health information seeking and sharing. Connecting with other patients and getting realistic insight into the condition after diagnosis, advice for everyday life, comfort and hope and confirmation that their symptoms are ‘normal’ are of particular importance. Lack of specific advice for daily life, inaccessible new knowledge, lack of information about drugs and encountering severe health information are common challenges patients face due to insufficient support from health care professionals. Conclusion Health information seeking and sharing are important aspects of rare disease patients’ everyday life. Challenges they face could be overcome in cooperation with patient support groups, health care professionals and health information professionals.

Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland

“…Several rare disease drugs have been funded in Northern Ireland under managed access agreements; respondents are keen to know more about the process of obtaining orphan drugs. Stanarević Katavić (29) conducted semi-structured interviews with 15 respondents having one of three rare diseases, confirming that common challenges rare disease patients face include inaccessible new knowledge and lack of information about drugs and insufficient support from healthcare professionals.…”

Acromegaly and the information gap: patient perceptions of the journey from primary to tertiary care

“…Using qualitative research methods to explore the needs of patients newly diagnosed with acromegaly in a primary or secondary care setting demonstrates the need for high-quality, relevant online resources and local support networks. The internet is being used increasingly by patients to research their health conditions ( 17 , 18 ). This has been shown to affect the patient’s beliefs and potentially change their decision about treatment ( 19 ).…”

“…Such resources include The Pituitary Foundation ( www.pituitary.org.uk ). In particular, their support groups and peer support programme may address the patients’ needs to speak with more experienced acromegalic patients and encourages the exchange of health information ( 18 , 20 , 21 ). Video presentations by similar patients, such as the UK acromegaly meetup, could be helpful for newly diagnosed patients (UK Acromegaly Meetup 2017: Patient stories – Rachel and Carolyn; https://youtu.be/llqhT-FheMA ).…”

Using Symptoms and Healthcare Encounters to Capture a Rare Disease: A Study of Clinical Notes of the Alpha‐Gal Meat Allergy

“…This line of research is particularly valuable and timely for understanding AGS, given that independent health information seeking is one of the characteristics for patients with rare diseases. Patients' information seeking can be necessary and crucial, especially when considering that HCPs may lack information and awareness of sources of information about rare diseases (Katavić, 2019;Vandeborne, et al, 2019).…”