The disease course of juvenile idiopathic arthritis (JIA) is unpredictable. Children with JIA commonly experience pain, joint swelling, stiffness and fatigue that may restrict physical and social interactions, and can negatively impact quality of life.¹ Management of JIA is complex and often involves diverse therapies requiring constant monitoring. Adolescents are expected to assume greater responsibility for disease management due to their growing autonomy.^2,3
       However, adolescent adherence to disease management activity is less than optimal.⁴ Poor compliance and inappropriate self-management behaviours may reduce the benefits of treatment. Furthermore, a vast majority of adolescents do not receive comprehensive disease education linked with self-management therapy due to: difficulty in accessing services; limited availability of trained professionals, especially in rural areas; and costs associated with therapy.^5,6
       Enhanced awareness and greater self-management earlier in the disease trajectory may diminish or even prevent illness exacerbation and associated adverse health outcomes.

What The Literature Reveals About Self-Management Techniques

Self-management interventions typically encompass information-based material and cognitive behavioural strategies designed to increase participant knowledge, self-efficacy and use of self-management strategies.^3,7 Studies in adult and pediatric chronic illness have shown that comprehensive, interactive interventions augmenting medical treatments with self-management can lead to better health outcomes and quality of life than strictly medically focused care.^6-10 Keep in mind that self-management interventions are meant to augment, not replace, the information and support provided by health care professionals.
       Researchers have postulated that enhancing self-efficacy and empowerment are key mediators in effective self-management programs.^7,8,11 Murray and colleagues have recently proposed a conceptual framework theorizing that self-management interventions work by combining information with peer, decision making and behaviour change support to allow internalization and interpretation of the information by the user.¹¹ Combining enhanced self-efficacy with motivation and knowledge enables users to change their health behaviours, leading to changes in clinical outcomes.¹¹ However, further research is needed to examine the essential components of these programs and how they work.¹²
       Self-management therapies have been effective in adults with arthritis.^13,14 However, evidence of the effectiveness of these therapies in JIA is sparse.^5,9 Self-management interventions for JIA have been typically limited in scope. These interventions are commonly directed at parents rather than adolescents, are delivered by only highly trained personnel in specialty clinics and/or not suitable for widespread distribution in community or home-based settings.^5,9 The paucity of studies may be underscored by the scarcity of resources needed to support these therapies, issues of accessibility, acceptability and applicability of these interventions for adolescents.
       Ullrich and colleagues recently explored the information and unmet service needs of adolescents with chronic arthritis.¹⁵ The majority of adolescents studied were interested in receiving more information regarding their prognosis, disease course and treatment. However, more than half of them were hesitant about using self-management programs delivered in a group.¹⁵

A Closer Look At Internet-Based Interventions For Self-Management Of JIA

Electronic health technologies offer an innovative approach to improving health service delivery and may improve acceptability of self-management interventions for adolescents with JIA. Murray, et al. conducted a Cochrane Review of Interactive Health Communication Applications (IHCAs) or Internet interventions. Internet interventions are defined as interventions that encompass health information and at least one of the following: social support, decision-making support and/or behavior change support.¹¹

The functions of Internet interventions include:

• providing health information;
• enabling informed decision-making;
• promoting peer exchange (information sharing and emotional support);
• promoting self-care; and
• managing the demand for health services

       Murray, et al. found that IHCAs had largely positive effects in terms of increasing knowledge and that users felt more socially supported. There was some evidence that they improved behavorial and clinical outcomes as well as self-efficacy in comparison to non-users. However, they were unable to determine the effect of IHCAs on emotional or economic outcomes.¹¹
       Further, high quality studies with larger sample sizes may confirm emotional and economic impact. They may also help elucidate the best type and way to deliver IHCAs, and establish how they work in comparison to standard interventions.

Keys To Making The IHCA Effective

Regardless, Internet-based self-management programs have several advantages.¹⁶ A secure server can deliver, customize and record homework sessions. These programs can provide adolescents with opportunities to communicate with a health care team and peers. They allow adolescents private access to information at any time. This increases the convenience of treatment and helps decrease the cost of care. Internet-based programs can provide a range of self-management modules, which may be of specific relevance to the patient or modules that patients may wish to explore in greater depth. Lastly, these types of programs take advantage of the computer as a highly appealing mode of communication for adolescents.
       Few self-administered, multimedia programs for children and adolescents with chronic illnesses have been developed and validated despite their appeal.^11,17 There is early evidence that computer-based, self-administered treatments are efficacious for children with asthma, diabetes and headaches, and their families.^18-22 One recent study demonstrated the feasibility of an Internet diabetes self-management program for adolescents and young adults who are transitioning to adult medical care.²¹
       Health care professionals have traditionally developed self-management interventions without input from those the programs are designed for, regardless of how they are delivered. Furthermore, few studies have explored the self-management needs of children or adults with chronic illnesses to better the development of these treatment programs. That said, the first step in designing IHCAs is to conduct a user-oriented needs assessment.²³

Identifying What JIA Patients Would Like To See In An IHCA

We recently conducted a qualitative study using individual and focus group interviews to explore the self-management needs of adolescents with arthritis across four large pediatric rheumatology centers in Canada. In the study, we also attempted to determine the acceptability of a Web-based program of self-management.²⁴
       Adolescents articulated how they developed effective self-management strategies through “letting go” of others who had previously managed their illness and “gaining control” over managing their illness independently. Gaining knowledge and skills toward disease management, and gaining better understanding through social support both aided in making the transition to self-management. Other helpful attributes included knowledge and awareness of the disease, listening to and challenging care providers, communicating with the doctor, and managing pain and emotions.
       All the adolescents surveyed called for more information, strategies and meaningful social support to facilitate better self-management of their arthritis. They believed that Web-based interventions were a promising avenue toward improving accessibility and availability of interventions. Exploring the self-management needs of adolescents was crucial for designing the content of a Web site to ensure those needs were met.
       We are currently developing and evaluating the “Teens Taking Charge: Managing Arthritis Online,” a Web-based intervention for adolescents with JIA. The intervention will be evaluated in three steps:

1. Iterative usability testing;
2. Pilot testing the feasibility of intervention using a randomized controlled trial; and
3. A definitive multicenter randomized controlled trial to determine the effectiveness of intervention in improving health outcomes.²³

       We hypothesize that adolescents with JIA participating in the Web-based intervention will demonstrate:

• improved health-related quality of life;
• increased disease-specific knowledge;
• improved coping, self-efficacy and adherence to prescribed management; and
• decreased pain and stress in comparison to adolescents in the control group.

       The intervention will consist of information, self-management strategies and social support components.
       There are twelve modules for adolescents and two for parents within the Web-based intervention. Health coaches will contact participants weekly to help tailor the information and strategies to meet individual needs and goals.²⁵ The most exciting aspect of this project is that the end result of this program should serve as a vehicle for knowledge exchange.

In Conclusion

Knowledge exchange through the use of the Internet can be an effective tool to help facilitate the collection, processing and targeted distribution of information about arthritis research that will benefit patients and their families, clinicians, researchers, administrators, health care policy makers, and the general public.²⁶
       While this Web-based program is being developed for adolescents and parents, it could also be envisioned as an educational tool for health care professionals. It is foreseeable that this program could be integrated into the curricula and training programs of health care professionals. This program could also be used to educate other lay audiences such as teachers and peers about childhood arthritis.

       Dr. Stinson is a CIHR Post-Doctoral Research Fellow of Child Health Evaluative Sciences at The Hospital For Sick Children in Toronto, Ontario, Canada. The author acknowledges that funding for the aforementioned studies was provided by the Canadian Arthritis Network and the Arthritis Society. Dr. Stinson notes that her research is supported by a Canadian Institutes of Health Research Post-Doctoral Fellowship, Canadian Child Health Clinician Scientist Program and The Canadian Arthritis Network.