title: Impact of a telenursing service on satisfaction and health outcomes of children with inflammatory rheumatic diseases and their families: a crossover randomized trial study protocol.
abstract: BACKGROUND
  Pediatric rheumatic diseases have a significant impact on children's quality of life and family functioning. Disease control and management of the symptoms are important to minimize disability and pain. Specialist clinical nurses play a key role in supporting medical teams, recognizing poor disease control and the need for treatment changes, providing a resource to patients on treatment options and access to additional support and advice, and identifying best practices to achieve optimal outcomes for patients and their families. This highlights the importance of investigating follow-up telenursing (TN) consultations with experienced, specialist clinical nurses in rheumatology to provide this support to children and their families.
  
  
  METHODS
  This randomized crossover, experimental longitudinal study will compare the effects of standard care against a novel telenursing consultation on children's and family outcomes. It will examine children below 16 years old, recently diagnosed with inflammatory rheumatic diseases, who attend the pediatric rheumatology outpatient clinic of a tertiary referral hospital in western Switzerland, and one of their parents. The telenursing consultation, at least once a month, by a qualified, experienced, specialist nurse in pediatric rheumatology will consist of providing affective support, health information, and aid to decision-making. Cox's Interaction Model of Client Health Behavior serves as the theoretical framework for this study. The primary outcome measure is satisfaction and this will be assessed using mixed methods (quantitative and qualitative data). Secondary outcome measures include disease activity, quality of life, adherence to treatment, use of the telenursing service, and cost. We plan to enroll 56 children.
  
  
  CONCLUSIONS
  The telenursing consultation is designed to support parents and children/adolescents during the course of the disease with regular follow-up. This project is novel because it is based on a theoretical standardized intervention, yet it allows for individualized care. We expect this trial to confirm the importance of support by a clinical specialist nurse in improving outcomes for children and adolescents with inflammatory rheumatisms.
  
  
  BACKGROUND
  ClinicalTrial.gov identifier: NCT01511341 (December 1st, 2012).
authors.affiliation: Institute of Higher Education and Nursing Research, University of Lausanne, CHUV, Rte de la Corniche 10, Lausanne 1011, Switzerland. Anne-Sylvie.Ramelet@unil.ch.
authors.forename: Anne-Sylvie
authors.initials: AS
authors.lastname: Ramelet
authors.forename: Béatrice
authors.initials: B
authors.lastname: Fonjallaz
authors.forename: Joachim
authors.initials: J
authors.lastname: Rapin
authors.forename: Christophe
authors.initials: C
authors.lastname: Gueniat
authors.forename: Michaël
authors.initials: M
authors.lastname: Hofer
mesh_terms: D000293:Adolescent; D002648:Child; D018592:Cross-Over Studies; D003657:Decision Making; D006801:Humans; D008137:Longitudinal Studies; D009723:Nurse-Patient Relations; D010349:Patient Compliance; D010353:Patient Education as Topic; D063868:Patient Outcome Assessment; D017060:Patient Satisfaction; D011368:Professional-Family Relations; D011788:Quality of Life; D012216:Rheumatic Diseases / Q000451:nursing*; D012944:Social Support; D013041:Specialties, Nursing; D013557:Switzerland; D055817:Telenursing