Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

At a glance: The ONWARDS insulin icodec trials

A round-up of the ONWARDS phase 3 clinical trials evaluating the novel weekly insulin icodec in people with diabetes.
ADVANCED SEARCH
Log in
Top
Pediatric Rheumatology
Published in: Pediatric Rheumatology 1/2017

Open Access 01-12-2017 | Research article

Short term effectiveness and experiences of a peer guided web-based self-management intervention for young adults with juvenile idiopathic arthritis

Authors: Judy Ammerlaan, Harmieke van Os-Medendorp, Nienke de Boer-Nijhof, Lieske Scholtus, Aike A. Kruize, Philomine van Pelt, Berent Prakken, Hans Bijlsma

Published in: Pediatric Rheumatology | Issue 1/2017

Login to get access

Abstract

Background

A web-based self-management intervention guided by peer-trainers was developed to support young adults’ self-management in coping with Juvenile Idiopathic Arthritis (JIA). To investigate its effectiveness, a randomized controlled trial (RCT) was conducted. In addition, the content of the chat and participants’ goals were studied to identify underlying processes.

Methods

An RCT with a six-month follow up period was conducted among 72 young adults with JIA, aged between 16 and 25 years old, randomly assigned to the intervention or to the usual care control group. After 24 weeks, in both groups 24 participants completed all measurements. Intentions to treat analyses were carried out by means of linear mixed models for longitudinal measurements. With self-efficacy as primary outcome, self-management, disease activity, quality of life, absenteeism of school/work, health care medication use and adherence to the intervention were studied. The participants’ goals, personal achievements, interactions on the chat, and their appreciation of the intervention were analyzed using thematic analyses.

Results

No significant differences were found on self-efficacy, quality of life, and self-management between the participants of the control group and the intervention group. In the intervention group, modeling and sharing experiences were the most recognized themes. Fifty-five goals were formulated and divided into the following categories: improvement and maintaining balance, setting and recognizing boundaries, communicating and coping with incomprehension. Adherence, appreciation of the own learning experience, and personal achievements were rated positively.

Conclusion

The web-based intervention did not lead to an improvement of self-efficacy. However, additional qualitative analyses showed that the intervention was appreciated and valuable for the participants. More research is needed on how to measure the added value of this intervention compared to the usual care.

Trial registration

Trial registration number NTR4679.
Literature
1.
Gray NJ, Klein JD, Noyce PR, et al. Health information-seeking behaviour in adolescence: the place of the internet. Soc Sci Med. 2005;60:1467–78.CrossRefPubMed
2.
Stinson J, Wilson R, Gill N, et al. A systematic review of internet-based self-management interventions for youth with health conditions. J Pediatr Psychol. 2009;34:495–510.CrossRefPubMed
3.
Eland-de Kok P, van Os-Medendorp H, Vergouwe-Meijer A, et al. A systematic review of the effects of e-health on chronically ill patients. J Clin Nurs. 2011;20:2997–3010.CrossRefPubMed
4.
Stinson JN, Toomey PC, Stevens BJ, et al. Asking the experts: exploring the self-management needs of adolescents with arthritis. Arthritis Rheum. 2008;59:65–72.CrossRefPubMed
5.
Stinson JN, McGrath PJ, Hodnett ED, et al. An internet-based self-management program with telephone support for adolescents with arthritis: a pilot randomized controlled trial. J Rheumatol. 2010;37:1944–52.CrossRefPubMed
6.
Ammerlaan JJ, Scholtus LW, Drossaert CH, et al. Feasibility of a website and a hospital-based online portal for young adults with juvenile idiopathic arthritis: views and experiences of patients. JMIR Res Protoc. 2015;4:e102.CrossRefPubMedPubMedCentral
7.
van Pelt P, Drossaert C, Kruize A, et al. Use and perceived relevance of health related internet sites and online contact with peers among young people with juvenile idiopathic arthritis. Rheumatology. 2015;54:1833. (accepted)CrossRefPubMed
8.
Sawyer SM, Aroni RA. Self-management in adolescents with chronic illness. What does it mean and how can it be achieved? Med J Aust. 2005;183:405–9.PubMed
9.
Ammerlaan JW, Scholtus LW, Bijlsma HJ, et al. An urge for change: transitional care for young adults with juvenile idiopathic arthritis. Patient Educ Couns. 2013;92:127.CrossRefPubMed
10.
Howland S, Fisher K. Looking through the patient lens - improving best practice for young people with juvenile idiopathic arthritis transitioning into adult care. Spring. 2015;4:111. -015-0888-8. eCollection 2015CrossRef
11.
Bloom SR, Kuhlthau K, Van Cleave J, et al. Health care transition for youth with special health care needs. J Adolesc Health. 2012;51:213–9.CrossRefPubMed
12.
Wells CK, McMorris BJ, Horvath KJ, et al. Youth report of healthcare transition counseling and autonomy support from their rheumatologist. Pediatr Rheumatol Online J. 2012;10:36. -0096-10-36CrossRefPubMedPubMedCentral
13.
14.
Wagner-Weiner L. Pediatric rheumatology for the adult rheumatologist. J Clin Rheumatol. 2008;14:109–19.CrossRefPubMed
15.
Tucker LB, Cabral DA. Transition of the adolescent patient with rheumatic disease: issues to consider. Rheum Dis Clin N Am. 2007;33:661–72.CrossRef
16.
Shaw KL, Southwood TR, McDonagh JE, et al. User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford). 2004;43:770–8.CrossRef
17.
Lawson EF, Hersh AO, Applebaum MA, et al. Self-management skills in adolescents with chronic rheumatic disease: a cross-sectional survey. Pediatr Rheumatol Online J. 2011;9:35.CrossRefPubMedPubMedCentral
18.
Barlow J, Wright C, Sheasby J, et al. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns. 2002;48:177–87.CrossRefPubMed
19.
Ammerlaan J, van Os-Medendorp H, Scholtus L, et al. Feasibility of an online and a face-to-face version of a self-management program for young adults with a rheumatic disease: experiences of young adults and peer leaders. Pediatr Rheumatol Online J. 2014;12:10. -0096-12-10CrossRefPubMedPubMedCentral
20.
Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977;84:191–215.CrossRefPubMed
21.
Lenzen SA, Daniels R, van Bokhoven MA, et al. Setting goals in chronic care: shared decision making as self-management support by the family physician. Eur J Gen Pract. 2015;21:138–44.CrossRefPubMed
22.
Holloway I, Wheeler S. Qualitative research in nursing. Oxford: Blackwell Publishing; 2002.
23.
Ringold S, Weiss PF, Beukelman T, et al. 2013 update of the 2011 American College of Rheumatology Recommendations for the treatment of juvenile idiopathic arthritis. Arthritis Rheum. 2013;65:2499–512.CrossRefPubMedPubMedCentral
24.
Mueller A, Hartmann M, Mueller K, et al. Validation of the arthritis self-efficacy short-form scale in German fibromyalgia patients. Eur J Pain. 2003;7:163–71.CrossRefPubMed
25.
Ammerlaan JW, van Os-Medendorp H, Sont JK, et al. Validation of the dutch version of the health education impact questionnaire (HEIQ) and comparison of the Dutch translation with the English, German and French HEIQ. Health Qual Life Outcomes. 2017;15:28.CrossRefPubMedPubMedCentral
26.
Osborne RH, Elsworth GR, Whitfield K. The health education impact questionnaire (heiQ): an outcomes and evaluation measure for patient education and self-management interventions for people with chronic conditions. Patient Educ Couns. 2007;66:192–201.CrossRefPubMed
27.
28.
Englbrecht M, Tarner IH, van der Heijde DM, et al. Measuring pain and efficacy of pain treatment in inflammatory arthritis: a systematic literature review. J Rheumatol Suppl. 2012;90:3–10.CrossRefPubMed
29.
Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: implications for conducting a qualitative descriptive study. Nurs Health Sci. 2013;15:398–405.CrossRefPubMed
30.
Moher D, Hopewell S, Schulz KF, et al. CONSORT 2010 explanation and elaboration: updated guidelines for reporting parallel group randomised trials. Int J Surg. 2012;10:28–55.CrossRefPubMed
31.
Niedermann K, de Bie RA, Kubli R, et al. Effectiveness of individual resource-oriented joint protection education in people with rheumatoid arthritis. A randomized controlled trial. Patient Educ Couns. 2011;82:42–8.CrossRefPubMed
32.
Field A. Discovering statistics using IBM SPSS statistics. London: Sage Publications; 2013.
33.
van Pelt PA, Kruize AA, Goren SS, et al. Transition of rheumatologic care, from teenager to adult: which health assessment questionnaire can be best used? Clin Exp Rheumatol. 2010;28:281–6.PubMed
34.
Osborne RH, Hawkins M, Sprangers MA. Change of perspective: a measurable and desired outcome of chronic disease self-management intervention programs that violates the premise of preintervention/postintervention assessment. Arthritis Rheum. 2006;55:458–65.CrossRefPubMed
35.
Meijer SA, Sinnema G, Bijstra JO, et al. Coping styles and locus of control as predictors for psychological adjustment of adolescents with a chronic illness. Soc Sci Med. 2002;54:1453–61.CrossRefPubMed
36.
DeSouza CM, Legedza AT, Sankoh AJ. An overview of practical approaches for handling missing data in clinical trials. J Biopharm Stat. 2009;19:1055–73.CrossRefPubMed
Metadata
Title
Short term effectiveness and experiences of a peer guided web-based self-management intervention for young adults with juvenile idiopathic arthritis
Authors
Judy Ammerlaan
Harmieke van Os-Medendorp
Nienke de Boer-Nijhof
Lieske Scholtus
Aike A. Kruize
Philomine van Pelt
Berent Prakken
Hans Bijlsma
Publication date
01-12-2017
Publisher
BioMed Central
Published in
Pediatric Rheumatology / Issue 1/2017
Electronic ISSN: 1546-0096
DOI
https://doi.org/10.1186/s12969-017-0201-1

Other articles of this Issue 1/2017

Pediatric Rheumatology 1/2017 Go to the issue

Research article

Growth and weight gain in children with juvenile idiopathic arthritis: results from the ReACCh-Out cohort

Research article

A single-center analysis of Henoch-Schonlein purpura nephritis with nephrotic proteinuria in children

Review

Lung involvement in childhood onset granulomatosis with polyangiitis

Short report

A comparison of three treatment strategies in recent onset non-systemic Juvenile Idiopathic Arthritis: initial 3-months results of the BeSt for Kids-study

Letter to the Editor

“Next generation sequencing identifies mutations in GNPTG gene as a cause of familial form of scleroderma-like disease”

Short Report

Transitional care for rheumatic conditions in Europe: current clinical practice and available resources