Longitudinal Identity Study of Childhood Cancer Survivors

NCT03424343 | Active Not Recruiting

• 1 other identifier: S60535
• Study Type: observational
• Target: 126
• Locations: 1 country
• Sites: 1

Brief Summary

The study investigators plan to conduct a longitudinal questionnaire study in adolescents and emerging adults (14-25 years of age at the start of the study) who survived childhood cancer to chart their identity development and broader social functioning. Additionally, the functioning of these survivors will be related to the functioning of their parents and siblings. The investigators shall focus especially on the current experience and impact of the earlier cancer experience. They will investigate to what extent the experience of a life-threatening disease has an effect on the daily life of survivors and over time and how the survivors develop through the course of adolescence and emerging adulthood on the psychosocial level. The formation of an adult identity is a very challenging task during adolescence and the way to adulthood and the fact that these youth had cancer during their childhood may especially complicate this process of identity formation. Furthermore, both parental and sibling functioning will be taken into account, which will allow us to examine inter-generational mechanisms (thus parental functioning that possibly impacts youth functioning and vice versa) and sibling functioning in these families. To investigate the latter, at each timepoint of the longitudinal study a sibling between 14 and 25 years of age at the start of the study will be included (if there is more than one sibling in a family, ideally the sibling who is closest in age will be the one who participates in the study). Moreover, a community sample that is matched on age and sex with the survivor of pediatric cancer will be assessed. This will allow the investigators to make well-founded comparisons regarding identity development and broader psychosocial functioning.

Conditions

Pediatric Cancer

Keywords

survivors; parents; sibling; family environment; psychosocial functioning; longitudinal; cancer; identity; adolescence; emerging adulthood

Outcome Measures

Primary Outcomes (4)

• Change in Dimensions of Identity Development

  Dimensions of Identity Development Scale (DIDS); dimensions: commitment making (range: 5 - 25), Identification with Commitment (range: 5 - 25), Exploration in Breadth (rang: 5 - 25), Exploration in Depth (range: 5 - 25), Ruminative Exploration (range: 5 - 25); for each dimension, a higher score indicates more identification with the dimension

  Assessed and reported at baseline, one year later, two years later, and five years later

• Change in Identity from an Eriksonian Perspective

  Erikson Psychosocial Stage Inventory (EPSI); subscales: Synthesis (range: 5 - 30), Confusion (range: 5 - 30); for each scale, higher scores indicate more identification with the scale

  Assessed and reported at baseline, one year later, two years later, and five years later

• Change in Illness Centrality

  Illness Centrality; total scale range: 0 - 4; A higher score indicates more identification with the scale

  Assessed and reported at baseline, one year later, two years later, and five years later

• Change in Self-Identity after Cancer

  Self-Identity after Cancer; dimensions: victim of cancer (range: 1 - 5), cancer patient (range: 1 - 5), person who had cancer (range: 1 - 5), survivor (range: 1 - 5); for each dimension, a higher score indicates more identification with the dimension

  Assessed and reported at baseline, one year later, two years later, and five years later

Secondary Outcomes (22)

• Change in Post-Traumatic Stress Symptoms (measured in survivors)

  Assessed and reported at baseline, one year later, two years later, and five years later

• Change in Illness-related Benefit Finding (measured in survivors)

  Assessed and reported at baseline, one year later, two years later, and five years later

• Change in Depressive Symptoms (measured in survivors, siblings, and parents)

  Assessed and reported at baseline, one year later, two years later, and five years later

• Change in Cancer-related Worries (measured in survivors and parents)

  Assessed and reported at baseline, one year later, two years later, and five years later

• Change in Global Life Satisfaction (measured in survivors, siblings and parents)

  Assessed and reported at baseline, one year later, two years later, and five years later

Study Arms (1)

cancer survivor, parents, sibling

study samples adolescent and young adult survivors of pediatric cancer, their parents, and one sibling; they are assessed using self-report questionnaires, so no intervention takes place

Other: Questionnaire bundle; Other: Obtaining information from survivors' medical file

Interventions

Questionnaire bundle OTHER

Questionnaires on identity formation and psychosocial functioning, assessed and reported at baseline, one year later, two years later, and five years later.

cancer survivor, parents, sibling

Obtaining information from survivors' medical file OTHER

After obtaining informed consent, we will access the medical file of participants to obtain information on the diagnosis, time of diagnosis, treatment duration, type of treatment, and relapse (when applicable).

cancer survivor, parents, sibling

Eligibility Criteria

• Age: 14 Years - 25 Years
• Sex: all
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

Survivors of childhood cancer, treated at the department of pediatric oncology at UZ Leuven.

You may qualify if:

• Survivors of childhood leukemia/lymphoma, solid tumors, and brain tumors, of whom the treatment has ended.
• years at the start of the study
• Treated at the department of pediatric oncology at University Hospital Leuven, Belgium.
• Sufficient knowledge of Dutch

You may not qualify if:

• Mental retardation which hinders completion of the questionnaire bundle
• Younger than 14 year and older than 25 year
• Physically incapable to complete the questionnaire bundle
• Insufficient knowledge of Dutch
• Contact information is not available

Sponsors & Collaborators

• KU Leuven: lead
• Research Foundation Flanders: collaborator
• Universitaire Ziekenhuizen KU Leuven: collaborator

Study Sites (1)

Gasthuisberg

Leuven, Vlaams-Brabant, 3000, Belgium

Location

MeSH Terms

Conditions

Neoplasms

Study Officials

• Koen Luyckx, Dr.

  KU Leuven

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate professor at the Faculty of Psychology and Educational Sciences

Study Record Dates

• First Submitted: November 29, 2017
• First Posted: February 7, 2018
• Study Start: August 28, 2018
• Primary Completion: December 1, 2024
• Study Completion: December 1, 2024
• Last Updated: August 21, 2024

Record last verified: 2024-08

Data Sharing

• IPD Sharing: Will not share

Locations

BE (1)