Identity Development in Youth With Neuromuscular Diseases

NCT03775135 | Withdrawn

• 1 other identifier: S0000
• Study Type: observational
• Target: N/A
• Locations: 0 countries
• Sites: N/A

Brief Summary

Up to 20% of the adolescents worldwide are diagnosed with a chronic illness. Although it's known that these young people suffer from a wide range of physical discomfort, in real life they have to cope with much more challenges whether or not caused by their physical situation. Psychiatric disorders (e.g. ASS, ADHD or depression) are more often diagnosed in this population compared to their healthy peers. The causal mechanisms for this higher risk, however, are yet unknown. This project examines three underlying intrapersonal processes possibly having an impact on the evolution of these secondary symptoms. Previous research confirmed the significant impact of having a chronic illness on the development of identity and the association with a higher prevalence of depressive symptoms. Identity formation is a crucial developmental task to transfer from a child to an independent, responsible adult. We believe this developmental task is more at risk for youngsters and young adults suffering from a physical disability, caused by a neuromuscular disease. In this longitudinal research project, we investigate the development of identity in youth with a neuromuscular disease, compared to healthy peers and compared to a group of peers with a non-visible chronical illness. We also evaluate the impact of the degree of physical functioning on those mechanisms. Second, we examine if parental behavior and parental functioning is linked with the formation of identity in a neuromuscular populations. Finally, the impact of identity formation on psychosocial outcomes (e.g. feelings of depression and anxiety, quality of life, …) is measured. By addressing these research questions, this project will add substantially to our knowledge on identity in chronic illness and can inform future prevention and intervention efforts targeting illness adaptation and parental functioning in order to prevent negative psychosocial outcomes and to optimize quality of life.

Conditions

Neuromuscular Diseases

Keywords

Identity

Outcome Measures

Primary Outcomes (2)

• Manifestation of identity in 120 patients with neuromuscular diseases

  Identity development will be measured with specific questionnaires

  up to year 1

• Psychosocial functioning in 120 patients with neuromuscular diseases

  Psychosocial functioning will be measures with specific questionnaires

  up to year 1

Study Arms (1)

Children with neuromuscular diseases

Questionnaires will be administered by children with neuromuscular disease between 12 and 25 years and their parents

Other: Questionnaires

Interventions

Questionnaires OTHER

Different questionnaires about identity development and psychosocial functioning will be administered

Children with neuromuscular diseases

Eligibility Criteria

• Age: 12 Years - 25 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

Children with neuromuscular diseases between 12 and 25 years

You may qualify if:

• confirmed diagnoses of a neuromuscular disorder;
• aged 12-25 years at baseline;
• last neuromuscular consult at our NMRC is 5 or less years ago;
• able to read and write Dutch;
• valid contact details available in the clinical database or the hospital information system.

Sponsors & Collaborators

• Universitaire Ziekenhuizen KU Leuven: lead

MeSH Terms

Conditions

Neuromuscular Diseases

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Nervous System Diseases

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Nathalie Goemans, MD, PhD

  UZ Leuven

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: November 13, 2018
• First Posted: December 13, 2018
• Study Start: January 1, 2019
• Primary Completion: February 1, 2020
• Study Completion: February 1, 2020
• Last Updated: December 13, 2018

Record last verified: 2018-11

Data Sharing

• IPD Sharing: Will not share