A multicenter, cross-sectional, online survey was performed to explore health care utilization and perceptions of SSc patients in the Netherlands.
In the Netherlands, the Arthritis Research and Collaboration Hub (ARCH) was established as a nationwide effort to improve health care for patients with rare systemic autoimmune diseases, including SSc. The ARCH working group purposely selected the departments of rheumatology for the study, to ensure a representative patient population from both regional (n = 7) and university (n = 6) hospitals spread across the Netherlands. Patients with a registered diagnosis of SSc, treated in one of the 13 participating rheumatology departments, were selected from the patient administration system of the institution and invited to participate. Information about the survey was communicated to the patients by the treating rheumatologists. The invitation was accompanied by a written participant information letter and a reply card. After returning the reply card or sending a notification e-mail, a unique web link was distributed to enter the online survey. The inclusion criteria were as follows: being diagnosed with SSc, aged ≥18 years, and sufficient knowledge of the Dutch language. Data were processed anonymously. All participants provided informed consent when starting the web survey and before they were asked substantive questions.
Ethical approval was obtained by the Institutional Review Board of the Radboud university medical center, Nijmegen (protocol number: 2017–3621). The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines were followed .
The online survey was hosted by Castor Electronic Data Capture (Castor EDC; Castor, Amsterdam, the Netherlands), a highly secured, cloud-based electronic data capture platform . The survey questions were constructed based on the results of a literature review, three semi-structured multicenter focus group interviews with 23 patients, and interviews with 12 rheumatologists and five specialized nurses. Next, the survey was evaluated by the members of the ARCH SSc working group and a patient panel . The questionnaire contained 67 multiple choice, multiple response, and open questions covering the following:  sociodemographic characteristics;  opinions on bottlenecks and areas for improvement;  perceived quality of care, and  non-pharmacological care. The survey was pilot tested in five SSc patients. To answer the research question of this study, we used data concerning non-pharmacological care and unmet needs in SSc care.
Description of the selected questions of the survey
Sociodemographic questions included sex, age, educational level, living situation, employment and disability status, and disease characteristics (disease subset, symptom onset and year of diagnose).
Unmet needs in SSc care
The question ‘I would like more attention to be paid in my treatment to the following topics’ was assessed using a list of 27 yes/no questions on changed appearance, physical limitations, pain, fatigue, impaired walking and/or hand function, sleeping problems, psychological problems, sexual dysfunction, stomach and intestine problems, reduced mouth function, gynecological complaints, Raynaud’s phenomenon, joint problems, loss of independence, loss of work / school, daily activities, and social life; insufficient support from social network, dealing with uncertainty, unpredictability of SSc, ambiguities about the diagnosis, feeling misunderstood, loneliness, loss of self-confidence, contact with other SSc patients, and the possibility to indicate other topics.
To assess the use of non-pharmacological care, patients were asked whether they consulted one or more health professionals because of SSc-related problems, since onset of the disease (yes/no) and during the last 12 months (yes/no). Patients who consulted one or more health professionals during the last 12 months were asked to identify the professional most frequently contacted. The list offered included the following health professionals: dietitians, occupational therapists, physiotherapists, hand therapists, speech- and language therapists, social workers, dental hygienists, exercise therapists, podiatrists, and psychologists. Moreover, patients could add other health professional disciplines to the list. Referral reasons and treatment goals were assessed by open-ended questions.
Two subscales, such as “coordination and alignment of care” (four questions) and “your health professional” (three questions) from the Consumer Quality Index (CQI) (rheumatoid arthritis, version 2.0), which has been found to be reliable to measure patients’ experience with the quality of care in the field of rheumatology, were adapted for the current study . Only questions of those two subscales focusing on communication, alignment, and outcome satisfaction with health professional treatments were selected. In addition, the wording “healthcare providers” was changed into “between rheumatologist and health professionals” in 4 questions of the subscale “coordination and alignment of care”. Items were assessed on a four (five)-point Likert-scale [never, sometimes, most of the time, always, (I don’t know)].
Descriptive statistics were used to describe demographic characteristics, unmet needs, current use of non-pharmacological care, and outcome satisfaction. Statistical analyses were conducted using Stata/IC 13.1 (StataCorp LP, College Station, TX). The free-text responses on the open-ended questions about reasons for referral to HPs and treatment goals were read and re-read to obtain an overview of the collected data. To examine the alignment of referral reasons to unmet needs, the concepts were compiled verbatim and subjected to an exploratory thematic analysis . Coding discrepancies were resolved by discussion between two researchers (JS and CME) before refining the codes by summarizing and encoding in ICF terms (categories and subcategories) using the following:
the updated ICF linking rules ;
the World Health Organization (WHO) ICF browser ;
the International Classification of Functioning, Disability and Health (ICF) Core Sets for rheumatoid arthritis ; and
concepts of functioning and health as identified to be important to SSc patients .
The proportion of patients with unmet needs was calculated related to the number of patients that reported that need.