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Identity Development in Youth With Neuromuscular Diseases

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. Identifier: NCT03775135
Recruitment Status : Withdrawn (Changed plans)
First Posted : December 13, 2018
Last Update Posted : December 13, 2018
Information provided by (Responsible Party):
Universitaire Ziekenhuizen Leuven

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.

Condition or disease Intervention/treatment
Neuromuscular Diseases Other: Questionnaires

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Study Type : Observational
Actual Enrollment : 0 participants
Observational Model: Cohort
Time Perspective: Prospective
Official Title: Identity Development in Youth With Neuromuscular Diseases: A Clinically Relevant But Forgotten Issue in the Transition to Adulthood
Estimated Study Start Date : January 1, 2019
Estimated Primary Completion Date : February 1, 2020
Estimated Study Completion Date : February 1, 2020

Resource links provided by the National Library of Medicine

Group/Cohort Intervention/treatment
Children with neuromuscular diseases
Questionnaires will be administered by children with neuromuscular disease between 12 and 25 years and their parents
Other: Questionnaires
Different questionnaires about identity development and psychosocial functioning will be administered

Primary Outcome Measures :
  1. Manifestation of identity in 120 patients with neuromuscular diseases [ Time Frame: up to year 1 ]
    Identity development will be measured with specific questionnaires

  2. Psychosocial functioning in 120 patients with neuromuscular diseases [ Time Frame: up to year 1 ]
    Psychosocial functioning will be measures with specific questionnaires

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

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Ages Eligible for Study:   12 Years to 25 Years   (Child, Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
Children with neuromuscular diseases between 12 and 25 years

Inclusion Criteria:

  • 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.

Exclusion criteria:

-Patients that do not fulfill the inclusion criteria

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT03775135

Sponsors and Collaborators
Universitaire Ziekenhuizen Leuven
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Principal Investigator: Nathalie Goemans, MD, PhD UZ Leuven
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Responsible Party: Universitaire Ziekenhuizen Leuven Identifier: NCT03775135    
Other Study ID Numbers: S0000
First Posted: December 13, 2018    Key Record Dates
Last Update Posted: December 13, 2018
Last Verified: November 2018
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No

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Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No
Keywords provided by Universitaire Ziekenhuizen Leuven:
Additional relevant MeSH terms:
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Neuromuscular Diseases
Nervous System Diseases