Need for Online Information and Support of Patients With Systemic Sclerosis

Abstract

Objective. Interactive health communication applications (IHCAs) offer interesting possibilities to support systemic sclerosis (SSc) patients, since SSc is an uncommon, severe disease that needs a multidisciplinary treatment. This study aimed to investigate patients' needs for a hospital-based IHCA. Methods. A survey study was conducted among a large sample (n ‫؍‬ 429) of SSc patients of the University Medical Centre St. Radboud in Nijmegen, The Netherlands. Patients were asked about their current disease-related internet use, their perceived importance of diverse information topics, and their usefulness of 8 widely used online health services. To examine how disease specific their needs were, the results of SSc patients were compared with the results of a sample of rheumatoid arthritis (RA) patients (n ‫؍‬ 1,284). Results. In total, 746 patients (44% of the approached patients) returned a completed questionnaire and fulfilled all of the inclusion criteria. Of them, 569 (76%) had internet access. SSc patients used the internet especially for information (85%), and they expressed a need for information on physical, psychological, and social consequences of the disease. Concerning a hospital-based IHCA, e-consults, information about disease and treatment, and home access to their electronic medical records were perceived as most useful. SSc patients were more positive about the usefulness of the online applications than were RA patients, especially for e-consults and peer support forums. Conclusion. It would be valuable to offer SSc patients a hospital-based IHCA, including the online information and support they desire. When taking the needs of patients into account, an IHCA could become a valuable addition to their regular treatment.

Reply

“…The mean Ϯ SD age was 47.5 Ϯ 15.04 years, from which 72.8% were women. In total, 84% of subjects had searched the internet for information relating to their condition, a percentage similar to that reported by van der Vaart et al (1). The variables associated with internet use to find health information were age Ͻ56 years (odds ratio [OR] 5 [95% confidence interval (95% CI) 2.5-9.9], P ϭ 0.000), being a regular internet user (OR 12.9 [95% CI 5.9 -28.2], P ϭ 0.000), having a college education (OR 5.5 [95% CI 2.9 -13.8], P ϭ 0.000), dissatisfaction with the information received by the regular doctor (OR 3.4 [95% CI 1.5-7.5], P ϭ 0.003), and belonging to a patient's association (OR 1.9 [95% CI 1-3.6], P ϭ 0.05).…”

Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol

“…Another recent study from the Netherlands found that patients and HPs desired an informational website to serve the needs of both groups (Spierings et al, 2018). The authors highlighted the importance of shared care/multidisciplinary collaboration, medical data exchange, information for patients and HPs, patient empowerment and non-pharmacological approaches for SSc (Spierings et al, 2018). These recommendations are in line with the Chronic Care Model and support our strategy of including eHealth in an SSc care model (Gee et al, 2015).…”

“…However, computer use may pose problems for SSc patients with limited finger flexibility (Baker, Aufman, & Poole, 2012). Another recent study from the Netherlands found that patients and HPs desired an informational website to serve the needs of both groups (Spierings et al, 2018). The authors highlighted the importance of shared care/multidisciplinary collaboration, medical data exchange, information for patients and HPs, patient empowerment and non-pharmacological approaches for SSc (Spierings et al, 2018).…”

The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context

“…The utilisation of web-based technology is particularly important in the case of rare diseases where patients typically have difficulty accessing specialised services. A recent study32 found that 85% of Dutch patients with SSc had used the internet to search for information about SSc and that most of these patients (77–88%) perceived access to online information on physical, psychological and social consequences of the disease as important.…”