Need for Online Information and Support of Patients With Systemic Sclerosis




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.


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).


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.


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.


Systemic sclerosis (SSc) is a rare connective tissue disease characterized by vascular abnormalities, induration and thickening of the skin, and fibrotic changes of the internal organs (1, 2). Due to diverging incidence rates among populations, it is difficult to determine exact numbers on the prevalence of SSc. Estimations of prevalence vary from 7 to 489 per million adults, depending on the decade of estimation and geography of the estimated country (3, 4). SSc is a heterogeneous disease with a high morbidity, in which symptoms may cause a severe impact on patients' daily life, resulting in high levels of disease burden (5). Based upon the severity of the disease, patients show an increased disability, report high levels of pain, and experience a reduced quality of life (6–8). Due to physical impairments and symptoms, patients often experience psychological problems as well, such as low appearance self-esteem, increased levels of anxiety, and depression (9–11).

Research regarding information needs has shown that patients with SSc desire information in several domains. Evidently, they want information in the clinical domain, for example, on disease background and medication use. However, they also need information in the psychological domain, for example, on dealing with pain and the inability to perform activities they used to do, and on how to cope with fear that the disease will worsen (12, 13). Furthermore, several studies have shown that SSc patients highly value social support (14–16). A recent study by Schouffoer et al concerning the health care needs of patients with SSc (2) affirms these information and support needs. Schouffoer et al (2) found that SSc patients have particular unmet health care needs in the physical and psychological domains.

Because of the relatively low prevalence of SSc, it might be difficult for patients to obtain required information and health care services in their environment (13). Online applications that provide information and health care services could, therefore, be very valuable to this patient group. Interactive health communication applications (IHCAs) provided by the hospital offer reliable, relevant, and personal health information through the internet. Accordingly, these applications provide patients with online communication and participation services such as e-consult, peer support forums, and self-management programs (17, 18).

Previous research has shown that patients with rheumatic diseases have a high intention to use online IHCA services (19, 20). According to patients, the safe and reliable environment would give them confidence to search for information on the Web and to easily communicate personal and practical issues through e-consult or peer support forums (21). However, the concept of “rheumatic diseases” holds many different kinds of diagnoses that can vary widely in symptoms, in disablement, and also in prevalence. To our knowledge, no previous research has been conducted on the particular needs of SSc patients for online information and support services, although this might be an important target group for IHCAs. In this study, we therefore focused on the current use of, and future needs for, online health information, and on the current use and perceived usefulness of online support services of patients with SSc. To investigate to what extend these reports are specific to SSc patients, we compared their data with the current use and needs of patients with rheumatoid arthritis (RA), a more common rheumatic disease.

Significance & Innovations

  • Related to health, patients with systemic sclerosis (SSc) use the internet mainly to search for information on their disease, but not for information on other health-related topics or for other health-related applications.

  • Online services that aim to help patients get more involved in their treatment (such as symptom monitoring and home access to the electronic medical record) are perceived as useful by SSc patients.

  • SSc patients showed a significantly higher need for online communication with both care providers and peer patients than rheumatoid arthritis patients.

  • Overall, online applications that provide information and health care services could be a valuable addition to SSc patients' usual care.


Study design and patients.

A survey was set up for data collection. We approached all patients who were diagnosed with SSc and RA according to the patient database at the University Medical Centre (UMC) St. Radboud in Nijmegen, The Netherlands. In total, there were 1,713 patients, including 429 patients with SSc and 1,284 patients with RA. The patients were sent a personal invitation letter and a pencil and paper questionnaire. The invitation letter explained the purpose of the study, the use of data, the voluntary nature, and the anonymity of the participant; therefore, returned questionnaires could be presumed as consent. According to the local regulations in The Netherlands (Medical Research Involving Human Subjects Act), the study did not need approval of the ethical review board, since only (nonintervention) studies with a high burden for patients have to be reviewed.


The questionnaire was developed at the University of Twente based on a qualitative study among patients with diverging rheumatic diseases (21) and was used in a previous survey study as well (19). The questionnaire comprised several parts: 1) sociodemographics (age, sex, and education), diagnosis, and disease duration in years; 2) general internet usage; 3) internet usage related to rheumatic diseases; 4) importance of various online information topics; and 5) usefulness of different services on a hospital-based IHCA.

General internet use was measured by asking patients if they had home internet access, and if so, how much they used the internet on a 5-point scale ranging from 1–5, where 1 = daily and 5 = (almost) never. Disease-related internet use was measured with 18 items. The items asked if, and how often, the patients had used existing online applications for information (e.g., searching for different kinds of rheumatology information), communication (e.g., reading along and posting on a patient support group, asking questions to a physician, or making a consultation appointment), and participation (e.g., filling out self-tests and monitoring symptoms) related to their disease. The 4 available response options were “never” (0), “once” (1), “several times” (2), and “regularly” (3).

The relevance of several sorts of online information was measured by asking the importance of the information provided by the hospital, using a 4-point Likert scale. The response options were “very unimportant” (1), “quite unimportant” (2), “quite important” (3), and “very important” (4). To measure the perceived usefulness of services on a rheumatology IHCA, examples of 8 widely used online health services were given. The selection of these services was derived from a former qualitative interview study on patient preferences for a rheumatology IHCA (21). For each service, a short description of its purpose, possibilities, and utilization was given. After that, the patient's perceived usefulness was measured using a 5-point Likert scale. The answer options were “not at all useful” (1), “not useful” (2), “neutral” (3), “useful” (4), and “very useful” (5). The 8 services were: 1) provision of information about disease and treatment, 2) provision of information about care and support, 3) peer communication by support groups, 4) patient–provider communication by e-consult, 5) autonomous symptom monitoring (scoring of variables such as pain, symptoms, mood, and activity, which is visualized in graphs), 6) symptom monitoring with telemonitoring of the care provider (the care provider uses monitoring results in consultations and treatment), 7) self-management support (self-regulation of physical, psychological, and social consequences by tips, tests, and online support), and 8) access to their electronic medical record (withholding information about patients' diagnosis, treatment plan, and latest laboratory results) (19).

Statistical analyses.

Data were analyzed using SPSS for Windows, version 18.0. Only data from the patients who had internet access were included in the analyses. Descriptive statistics were calculated for the patients' sociodemographics, diagnostic characteristics, (disease-related) internet use, and reports on importance of information topics and usefulness of IHCA services. Differences in characteristics between SSc and RA patients were tested using chi-square tests (sex, education, disease duration, and internet usage) or a t-test (age). Differences in disease-related internet use, importance of online information topics, and usefulness of the IHCA services between SSc and RA patients were tested using Mann-Whitney U tests because the data were not normally distributed. P values less than 0.01 were considered significant.



Of the 1,713 questionnaires sent out, 1,030 (60%) were returned (Figure 1). Of these returned questionnaires, 134 were blank. Reported reasons included: the patient was not under treatment at the UMC St. Radboud anymore, the patient was deceased, or the patient felt too old to fill out the questionnaire. The net response was 896 (52%) of 1,713. Questionnaires with incomplete demographics (n = 8) and questionnaires in which patients self-reported not to be diagnosed with SSc or RA (n = 142) were filtered out. The final amount of questionnaires with usable data for the analysis was 746 (44%), of which 185 patients were diagnosed with SSc and 561 patients were diagnosed with RA. Of these respondents, 569 (76%) had internet access, including 151 patients with SSc (82%) and 418 patients with RA (75%), whose data were used for analyses.

Figure 1.

Flow chart of the questionnaire respondents. SSc = systemic sclerosis; RA = rheumatoid arthritis.

Patient characteristics.

Two-thirds of the respondents were women (65%) (Table 1). SSc patients were significantly (P < 0.001) younger than RA patients (54 versus 58 years) and had a significantly (P < 0.001) shorter disease duration (51% versus 79% with a disease duration >5 years). SSc patients used the internet on a regular basis, most respondents daily (62%).

Table 1. Patient characteristics and internet usage (n = 569)*
 SSc (n = 151)RA (n = 418)P
  • *

    SSc = systemic sclerosis; RA = rheumatoid arthritis.

  • Significance of differences between SSc and RA patients based on chi-square tests for categorical variables and independent-samples t-tests for continuous variables.

Sex, no. (%)  0.29
 Female103 (68)265 (63) 
 Male48 (32)153 (37) 
Age, mean ± SD years54 ± 13.358 ± 11.7< 0.001
Education, no. (%)  0.84
 Low41 (27)116 (28) 
 Medium73 (48)188 (45) 
 High37 (25)108 (26) 
 Unknown6 (1) 
Disease duration, no. (%)  < 0.001
 <1 year4 (3)8 (2) 
 1–5 years69 (46)78 (19) 
 >5 years77 (51)332 (79) 
 Unknown1 (1) 
Internet usage, no. (%)  0.06
 (Almost) daily93 (62)255 (61) 
 Several days a week34 (23)84 (20) 
 ∼1 day a week12 (8)18 (4) 
 <1 day a week8 (5)23 (6) 
 (Almost) never4 (3)37 (9) 
 Unknown1 (0) 

Health-related internet use.

Most SSc patients had searched on the internet, mainly for information on their disease (85%) (Table 2). Information about treatment, medication, and lifestyle was also searched for by many patients, but considerably less (58–63%). More than half of the respondents reported to have ever searched for information on patient organizations and care providers (57% and 56%, respectively). As far as online communication, 39% had ever visited a peer support forum before and 24% had ever contacted their care provider online. The amount of online participation in their treatment, for example, by monitoring symptoms or joining an online exercise program, was very low (14% and 2%, respectively).

Table 2. Disease-related internet use among patients with SSc and RA (n = 569)*
 SSc (n = 151)RA (n = 418)P
No. (%) yesMean ± SDNo. (%) yesMean ± SD
  • *

    Range 0–3, where 0 = never and 3 = regularly. SSc = systemic sclerosis; RA = rheumatoid arthritis.

  • Sum of “once” (1), “several times” (2), and “regularly” (3).

  • Significance of differences between SSc and RA patients based on Mann-Whitney U tests.

Have you ever searched for information on… ?     
 The disease129 (85)1.83 ± 0.90309 (74)1.54 ± 1.040.005
 Medication95 (63)1.32 ± 1.09276 (66)1.38 ± 1.090.57
 Treatments91 (60)1.25 ± 1.10209 (50)1.04 ± 1.090.05
 Lifestyle88 (58)1.23 ± 1.12237 (57)1.14 ± 1.070.43
 Patient organizations86 (57)1.06 ± 1.02173 (41)0.73 ± 0.95< 0.001
 Care providers84 (56)1.04 ± 1.01179 (43)0.83 ± 1.030.02
 Law regulations76 (50)1.00 ± 1.07182 (44)0.89 ± 1.070.28
Have you ever used a peer support forum or community to… ?     
 Read along with others59 (39)0.72 ± 0.9598 (23)0.43 ± 0.82< 0.001
 Post a message yourself17 (11)0.17 ± 0.5328 (7)0.11 ± 0.460.09
 Chat with peer patients8 (5)0.11 ± 0.478 (2)0.04 ± 0.270.03
Have you ever communicated online to… ?     
 Schedule an appointment29 (19)0.41 ± 0.9165 (16)0.33 ± 0.820.31
 Ask a question to your own provider36 (24)0.43 ± 0.86103 (25)0.46 ± 0.850.77
 Order online medication32 (21)0.55 ± 1.10109 (26)0.67 ± 1.170.23
 Ask a question to an online care provider21 (14)0.27 ± 0.7059 (14)0.25 ± 0.660.95
Have you ever participated in your treatment by… ?     
 Filling out a self-test32 (21)0.34 ± 0.7297 (23)0.34 ± 0.680.72
 Monitoring symptoms21 (14)0.27 ± 0.7283 (20)0.41 ± 0.890.08
 An online exercise program3 (2)0.03 ± 0.2014 (3)0.06 ± 0.320.38

A few significant differences were found in the use of online services between patients with SSc and RA (Table 2). The amount of times that SSc patients searched for disease-related information was significantly higher than information searches among RA patients. Patients with SSc also used the internet more regularly for information on patient organizations. Furthermore, they had used online peer support forums to read along with others more often.

Importance of online information on a hospital-based IHCA for SSc patients.

Patients thought that information on the disease and its treatment is particularly important on a hospital-based IHCA (90% and 89%, respectively) (Table 3). In addition, information on physical, psychological, and social consequences of the disease and information on lifestyle and health recommendations was perceived as important (88% and 77%, respectively). Other prominent topics were related to practical information, for example, on insurances and compensations and on aids and home adjustments (both 83%). Concerning information on care and support, patients thought that information on procedures and protocols in treatment and on waiting periods was essential (82% and 81%, respectively).

Table 3. Reported importance for online information on a hospital-based interactive health communication application among patients with SSc and RA*
How important is … for you?SSc (n = 151)RA (n = 418)P
No. (%) importantMean ± SDNo. (%) importantMean ± SD
  • *

    SSc = systemic sclerosis; RA = rheumatoid arthritis.

  • Sum of “quite important” (3) and “very important” (4).

  • Significance of differences between SSc and RA patients based on Mann-Whitney U tests.

Disease and treatment information on     
 Scientific research137 (91)3.6 ± 0.68345 (83)3.3 ± 0.88< 0.001
 An overview of the syndrome136 (90)3.4 ± 0.70319 (76)3.0 ± 0.86< 0.001
 Treatment options135 (89)3.4 ± 0.72326 (78)3.1 ± 0.90< 0.001
 Physical consequences of the disease133 (88)3.3 ± 0.71320 (77)3.1 ± 0.890.001
 Insurances and compensations126 (83)3.3 ± 0.82334 (80)3.1 ± 0.850.004
 Aids and home adjustments126 (83)3.3 ± 0.81336 (80)3.1 ± 0.880.11
 Lifestyle and health recommendations124 (82)3.2 ± 0.73309 (74)2.9 ± 0.860.006
 Support for/from relatives and friends119 (79)3.1 ± 0.79271 (65)2.8 ± 0.910.004
 Work-related concerns118 (78)3.1 ± 0.84246 (59)2.7 ± 1.0< 0.001
 Social consequences of the disease115 (76)3.0 ± 0.92280 (67)2.8 ± 0.920.004
 Psychological consequences of the disease117 (77)3.1 ± 0.88272 (65)2.8 ± 0.92< 0.001
 Vacations and health resorts92 (61)2.7 ± 0.86236 (56)2.5 ± 0.900.01
 Nonmedical treatments84 (56)2.7 ± 0.94209 (50)2.4 ± 1.00.01
Care and support information on     
 Procedures and protocols in treatment124 (82)3.2 ± 0.79326 (78)3.1 ± 0.850.10
 Waiting periods by health professional and clinic122 (81)3.1 ± 0.79315 (75)3.0 ± 0.850.21
 Health professionals related to rheumatic diseases120 (79)3.0 ± 0.73304 (73)2.9 ± 0.820.17
 Specialization by health professionals118 (78)3.0 ± 0.81328 (78)3.1 ± 0.830.93
 Reviews of other patients98 (65)2.8 ± 0.88264 (63)2.7 ± 0.860.13

Overall, patients with SSc perceived all of the information topics as more important than patients with RA, except for information on specialization of health professionals. The reported difference among both patient groups was significant for all of the disease- and treatment-related information, except for information about aids and home adjustments.

Usefulness of services on a rheumatology IHCA.

Patients' perceived usefulness of various services on a hospital-based IHCA is shown in Table 4. The most popular services were online consults (83%), online information about disease and treatment (81%), and home access to their electronic medical records (77%), all with mean scores between useful (3) and very useful (4) (Table 4). Other services that were considered as useful were information about care and support (71%), symptom monitoring when the care provider has access to the data (68%), and an online self-management course (67%). Patients were considerably less enthusiastic about facilities for online peer support, but one-third of the SSc patients still thought that such forums would be useful (32%).

Table 4. Usefulness of 8 different services on a hospital-based interactive health communication application according to SSc and RA patients*
Response optionsNot (at all) useful (1 + 2), no. (%)Neutral (3), no. (%)(Very) useful (4 + 5), no. (%)Mean ± SDP
  • *

    SSc = systemic sclerosis; RA = rheumatoid arthritis.

  • Significance of differences between SSc and RA patients based on Mann-Whitney U tests.

 SSc5 (3)17 (11)126 (83)4.2 ± 0.77< 0.001
 RA31 (7)97 (23)278 (67)3.9 ± 0.94 
Information on disease and treatment     
 SSc3 (2)26 (17)121 (80)4.1 ± 0.720.01
 RA21 (5)98 (23)294 (70)3.9 ± 0.81 
Home access to the electronic medical record     
 SSc7 (5)22 (15)117 (77)4.2 ± 0.910.29
 RA25 (6)63 (15)312 (75)4.1 ± 0.94 
Information on care and support     
 SSc7 (5)30 (20)107 (71)3.9 ± 0.840.57
 RA21 (5)98 (23)282 (67)3.9 ± 0.81 
Symptom monitoring with the care provider     
 SSc4 (3)40 (26)103 (68)3.9 ± 0.790.60
 RA30 (7)98 (23)282 (67)3.8 ± 0.90 
Self-management support     
 SSc8 (5)35 (23)104 (69)3.8 ± 0.770.01
 RA31 (7)135 (32)232 (56)3.7 ± 0.88 
Autonomous symptom monitoring     
 SSc21 (14)46 (30)79 (52)3.6 ± 0.910.07
 RA77 (18)142 (34)189 (45)3.4 ± 1.00 
Peer support forums     
 SSc33 (22)65 (43)49 (32)3.1 ± 1.01< 0.001
 RA141 (34)190 (45)70 (17)2.7 ± 0.95 

Patients with SSc were, on average, more positive about the usefulness of various applications than patients with RA. For the applications “e-consult” and “peer support forums,” these differences in perceived usefulness between the diagnoses were strongly significant. Differences on usefulness of “information on disease and treatment” and “self-management support” were significant as well.


This study investigated the current internet use and the needs for online information and support in a large sample of patients with SSc. Since this disease is uncommon and has a large impact on the daily lives of patients, online information and support might be a valuable addition to their treatment.

The results of our survey showed that patients with SSc use the internet very often, and regularly search for disease-related information. This corresponds with previous research on the online needs of SSc patients (2, 13). Nevertheless, the internet is used far less for searching for information about nonmedical topics, such as lifestyle or practical issues. This is remarkable, since our results as well as previous studies have shown that patients with SSc have a distinct need for several types of nonmedical information (12, 13, 15), for example, information on consequences of the disease in the physical, social, and psychological domains and information on how to cope with these consequences. The divide between the needs of SSc patients and their actual use of online information might be due to a lack of (reliable) information about nonmedical topics on the internet, or due to problems with finding the needed information on the enormous Web (13).

Besides looking up information, the majority of patients had not used the internet in other ways in relation to their disease. Yet according to our results, most of the services that aim to help patients get more involved in their treatment were perceived as useful by patients with SSc. Facilities to monitor symptoms and to access the electronic medical record were highly appreciated by patients. This corresponds with the results of a previous study among patients with rheumatic diseases, of which a large part were patients with RA (19).

Facilities to communicate online with care providers or with peer patients were only used by a minority of the respondents, which corresponds with previous results as well (19). However, in this current study, SSc patients showed a significantly higher need for online communication with both care providers and peer patients than RA patients. The difference in needs for online peer support between the 2 patient groups might be due to the visible symptoms that SSc causes, including skin deformities, combined with the low prevalence of SSc. These symptoms result in a lower self-esteem among patients (9), and presumably a higher need for social comparison and a need for recognition in this patient group. Research by van Uden-Kraan (22, 23) showed that the use of online patient support groups can indeed be valuable to patients in order to encounter emotional support, find recognition, and share experiences, which could result in improved acceptance of the illness, increased optimism, and enhanced self-esteem (22). In addition, online peer support could help overcome geographic barriers. A plausible explanation for the high need for online consults among patients with SSc in comparison to patients with RA could be the fact that the UMC St. Radboud has a specialty center for SSc. This entails that SSc patients from all around The Netherlands visit this hospital, which can be quite a long distance to travel for many of them. Moreover, patients often visit many different health professionals, including rheumatologists, specialist nurses, occupational therapists, psychologists, cardiologists, and/or lung specialists, due to the multidisciplinary care that they require. E-consults from home could decrease the amount of face-to-face consults with health professionals, and therefore the amount of hospital visits, which might be of high value for this patient group.

Since this was a survey study, our sample of respondents is a self-selected sample. Patients who are interested in the internet and in e-health might have been more likely to return the questionnaire than patients who are not interested in e-health. As a result, the results of our study may overestimate the need for online support tools. Nevertheless, needs for online information and support seem very high among this patient group. Since the SSc patients in our sample were younger and had shorter disease durations than the RA patients, this could explain part of the difference in online needs between both patient populations. Still, both populations have a mean age >50 years, which is continually an age group that is less active online compared to younger generations (24, 25).

In conclusion, it would be useful to offer patients with SSc a hospital-based IHCA, including the online information and support that they desire. When taking the needs of patients into account, an IHCA could become a valuable addition to their regular treatment. It could offer patients the information and the (peer) support that they need, enhance the information sharing between patients and care providers, and increase the service that patients experience from the hospital.


All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be published. Ms van der Vaart had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study conception and design. Van der Vaart, Drossaert, Taal, van de Laar.

Acquisition of data. Repping-Wuts, Knaapen-Hans, van de Laar.

Analysis and interpretation of data. Van der Vaart, Drossaert, Taal, van de Laar.