Need for online information and support of patients with Systemic Sclerosis

R. van der Vaart, Han Repping-Wuts, Constance H.C. Drossaert, Erik Taal, Hanneke K.A. Knaapen-Hans, Mart A F J van de Laar

Research output: Contribution to journalArticleAcademicpeer-review

16 Citations (Scopus)

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.
Original languageEnglish
Pages (from-to)594-600
Number of pages7
JournalArthritis care & research
Volume65
Issue number4/April
DOIs
Publication statusPublished - 2013

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Systemic Scleroderma
Internet
Rheumatoid Arthritis
Health Communication
Electronic Health Records
Netherlands
Health Services
Therapeutics

Keywords

  • METIS-290616
  • IR-88995

Cite this

van der Vaart, R. ; Repping-Wuts, Han ; Drossaert, Constance H.C. ; Taal, Erik ; Knaapen-Hans, Hanneke K.A. ; van de Laar, Mart A F J. / Need for online information and support of patients with Systemic Sclerosis. In: Arthritis care & research. 2013 ; Vol. 65, No. 4/April. pp. 594-600.
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title = "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.",
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Need for online information and support of patients with Systemic Sclerosis. / van der Vaart, R.; Repping-Wuts, Han; Drossaert, Constance H.C.; Taal, Erik; Knaapen-Hans, Hanneke K.A.; van de Laar, Mart A F J.

In: Arthritis care & research, Vol. 65, No. 4/April, 2013, p. 594-600.

Research output: Contribution to journalArticleAcademicpeer-review

TY - JOUR

T1 - Need for online information and support of patients with Systemic Sclerosis

AU - van der Vaart, R.

AU - Repping-Wuts, Han

AU - Drossaert, Constance H.C.

AU - Taal, Erik

AU - Knaapen-Hans, Hanneke K.A.

AU - van de Laar, Mart A F J

PY - 2013

Y1 - 2013

N2 - 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.

AB - 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.

KW - METIS-290616

KW - IR-88995

U2 - 10.1002/acr.21875

DO - 10.1002/acr.21875

M3 - Article

VL - 65

SP - 594

EP - 600

JO - Arthritis care & research

JF - Arthritis care & research

SN - 2151-464X

IS - 4/April

ER -