Abstract
BackgroundChildren suffering from rheumatic disease are faced with multidimensional challenges that affect their quality of life and family dynamics. Symptom management and monitoring of the course of the disease over time are important to minimize disability and pain. Poor disease control and anticipation of the need for treatment changes may be prompted by specialist medical follow-up and regular nurse-led consultations with the patient and families, in which information and support is provided. The purpose of this study was to evaluate the impact of a nurse-led telephone intervention or Telenursing (TN) compared to standard care (SC) on satisfaction and health outcomes of children with inflammatory rheumatic diseases and their parents.MethodsA multicentered, randomized, longitudinal, crossover trial was conducted with pediatrics outpatients newly diagnosed with inflammatory rheumatic diseases. Participants were randomly assigned to two groups TN and SC for 12 months and crossed-over for the following 12 months. TN consisted of providing individualized affective support, health information and aid to decision making. Satisfaction (primary outcome) and health outcomes were assessed with the Client Satisfaction Questionnaire-8 and the Juvenile Arthritis Multidimensional Assessment Report, respectively. A mixed effect model, including a group x time interaction, was performed for each outcome.ResultsSatisfaction was significantly higher when receiving TN (OR = 7.7, 95% CI: 1.8–33.6). Morning stiffness (OR = 3.2, 95% CI: 0.97–7.15) and pain (OR = 2.64, 95% CI: 0.97–7.15) were lower in the TN group. For both outcomes a carry-over effect was observed with a higher impact of TN during the 12 first months of the study. The other outcomes did not show any significant improvements between groups.ConclusionTN had a positive impact on satisfaction and on morning stiffness and pain of children with inflammatory rheumatic diseases and their families. This highlights the importance of support by specialist nurses in improving satisfaction and symptom management for children with inflammatory rheumatisms and their families.Trial registrationClinicalTrial.gov identifier: NCT01511341 (December 1st, 2012).
Highlights
Children suffering from rheumatic disease are faced with multidimensional challenges that affect their quality of life and family dynamics
Children and adolescents with Juvenile idiopathic arthritis (JIA) commonly experience chronic pain, decreased functional ability, impaired physical development, decreased overall well-being and quality of life, and emotional, social, and school functioning when compared to healthy individuals [4, 5]
After 12 months, one participant of group 2 withdrew from the study
Summary
Children suffering from rheumatic disease are faced with multidimensional challenges that affect their quality of life and family dynamics. Poor disease control and anticipation of the need for treatment changes may be prompted by specialist medical follow-up and regular nurse-led consultations with the patient and families, in which information and support is provided. There is no cure and heavy treatments involving medication such as antiinflammatory drugs, corticosteroid injections, and TNF alpha blockers; surgery and occupational therapy. Those treatments are challenging for children and their families. In our centre, unpublished pilot data showed that families of children with rheumatic disease were not entirely satisfied (median score of 26.8 ± 3.4/32), especially due to the lack of contacts with health professionals between follow-up medical visits
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