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Completed

NCT Number: NCT01511341

Impact of a Telenursing Service on Satisfaction and Health Outcomes of Children With Inflammatory Rheumatic Diseases

Paediatric rheumatisms represent a large group of inflammatory and non-inflammatory diseases of the locomotion system. The annual rate incidence of children diagnosed with rheumatic disease in Switzerland (canton of Vaud) is 56.8 for 100'000 children. These children experience a chronic course of the disease impacting on their quality of life and family functioning. Their medical treatment is significant and may last for life. Caring for these children involves a multidisciplinary approach. Control of the disease and management of the symptoms becomes of foremost importance to minimise disability and pain. In addition to medical care, the supporting role of nurses in the care of children with rheumatic diseases and their family aims to limit the potential for further deformity, disability, and psychological complications. In particular, they play a key role in supporting the specialist team caring for patients with rheumatism disease, recognising poor disease control and the need for changes in treatment, providing a resource to patients on treatment options and how to access additional support and advice, and identifying best practice to achieve optimal outcomes for the patients and their family. Nurses also ensure the link between medical practitioner, other health providers, and family, thus play a key role in the follow-up care of the child and its family. Follow-up of children and their family can be ensured by regular telephone consultation (telenursing) made by experienced nurse specialists in rheumatology. However, the effectiveness of telenursing remains to be proven in children with chronic rheumatic diseases. The aim of this study is, therefore, to evaluate the effect of a telephone nursing intervention on the outcomes of family and children with rheumatism chronic disease.

This randomised crossover, experimental longitudinal study will be carried out in the outpatient clinic of paediatric rheumatology of a tertiary referral hospital in canton of Vaud. The population will consist of children newly diagnosed with inflammatory rheumatologic diseases and one of their parent. The nurse-led intervention will consist of providing a monthly telephone call by a qualified and experienced nurse specialist in paediatric rheumatology and TN to ensure follow-up of the children and their family. The intervention will focus on providing affective support, health information, and aid to making decision.

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Key information

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • Children under the age of 17 years at the time of enrolment into the study
  • Newly diagnosed (within 24 months from the enrolment date) with inflammatory rheumatologic diseases
  • Registered as outpatient in the clinic of paediatric rheumatology
  • A parent (the mother or the father or the guardian) on behalf of their children.

Exclusion criteria

  • Children and parents who do not understand and speak French
  • No access to a telephone line.

Treatment and study plan

telenursing

Behavioral

The nurse-led intervention will consist of providing a monthly telephone call by a qualified and experienced nurse specialist in paediatric rheumatology and TN to ensure follow-up of the children and their family. The intervention will focus on providing affective support, health information, and aid to making decision.

Primary outcomes

  1. Satisfaction

    Time frame: 2 years

    Mixed methods, with Client Satisfaction Questionnaire (CSQ-8), and semi-structured interview

Secondary outcomes

  1. Telenursing service utilisation

    Time frame: 2 years

    Telenursing service utilisation will be recorded in terms of number, time and duration of calls, who made the call, the nature of the call, decision made, description of the plan for action, and follow-through of the advice.

  2. Adherence to therapeutic regimen

    Time frame: 2 years

    Parent Adherence Report Questionnaire (PARQ) and Child Adherence Report Questionnaire (CARQ)

  3. Cost effectiveness

    Time frame: 2 years

    Cost will be descriptive in nature and be estimated by calculating the cost related to the time for the use of the service by a qualified nurse versus what the parents would have done if the service was not avalaible.

  4. Clinical status (disease activity, QOL)

    Time frame: 2 years

    Juvenile Arthritis Disease Activity Score (JADAS) and Juvenile Arthritis Multidimensional Assessment Report (JAMAR)

Sponsors and collaborators

Lead sponsor

University of Applied Sciences of Western Switzerland

Other

Collaborators

  • Consultation Multisite Romande de Rhumatologie Pédiatrique
  • Ligue Genevoise contre le Rhumatisme
  • Réseau d'Etudes aux Confins de la Santé et du Social (RECSS)(HES-SO)
  • Swiss National Science Foundation
  • University of Lausanne Hospitals

Registry information

Official study title

Impact of a Telenursing Service on Satisfaction and Health Outcomes of Children With Inflammatory Rheumatic Diseases and Their Family: a Crossover Trial

Important dates

Study start
2011
Primary completion
2014
Study completion
2014
First posted
Jan 18, 2012
Registry last updated
Feb 4, 2015

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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