Aftercare of Childhood Cancer Survivors in Switzerland

NCT04284189 | Recruiting

• 1 other identifier: 2018-02304
• Study Type: observational
• Target: 140
• Locations: 1 country
• Sites: 3

Brief Summary

The Aftercare of Childhood Cancer Survivors in Switzerland (ACCS) study is a multicenter cohort study designed to investigate transition of follow-up care from pediatric oncology to adult care in a prospective and longitudinal way. The investigators collect data on preferences and expectations for follow-up care and transition to adult care by questionnaires in adolescent and young adult survivors of childhood cancer.

Conditions

Childhood Cancer; Survivorship; Transition

Keywords

Childhood Cancer Survivor; Transition of follow-up care

Outcome Measures

Primary Outcomes (4)

• Cancer Worry as part of transition readiness

  Assessment via validated "Cancer Worry Scale"

  Change from baseline to 3 month and 15 month

• Self-management as part of transition readiness

  Assessment via validated "Self-Management Skill Scale"

  Change from baseline to 3 month and 15 month

• Evaluation of needs for ongoing care as part of transition readiness

  Assessment via validated "Scale for ongoing Care"

  Change from baseline to 3 month and 15 month

• Evaluation of expectation for transition as part of transition readiness

  Assessment via validated "Expectation Scale"

  Change from baseline to 3 month and 15 month

Secondary Outcomes (1)

• Survivors' cancer specific knowledge

  Change from baseline to 3 month and 15 month

Interventions

Transition model OTHER

Transition of follow-up care of childhood cancer survivors to adult care

Eligibility Criteria

• Age: 16 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

The study population consists of childhood cancer survivors, who were diagnosed in three Swiss pediatric oncology centers at age \<18 years and are ≥5-year from diagnosis and age ≥16 years at study inclusion. Additionally, survivors are at study start in follow-up care at one of the three pediatric oncology centers (group before transition) or have been transitioned to adult care not before 2014 (group after transition)

You may qualify if:

• year survivor of childhood cancer
• Diagnosis according to ICCC3 I-XII; Langerhans cell histiocytosis (LCH), Hemophagocytic lymphohistiocytosis (HLH)
• Age at diagnosis \<18 years
• Age at study ≥16 years
• At study start in follow-up care at one of the three pediatric oncology centers (group before transition) or transitioned not before 2014 (group after transition).
• Written informed consent

You may not qualify if:

• Treatment only by means of surgery and without increased risk of late effects (e.g. teratoma)
• \<5 years after therapy of a relapse or palliative situation
• Severe cognitive impairment, which makes it impossible to complete the questionnaire independently
• Insufficient knowledge of the German language
• Informed consent form not signed

Sponsors & Collaborators

• Kantonsspital Aarau: lead
• University Children's Hospital Basel: collaborator
• Luzerner Kantonsspital: collaborator

Study Sites (3)

Division of Oncology - Hematology, Department of Pediatrics, Kantonsspital Aarau

Aarau, Switzerland

RECRUITING

Division of Oncology/ Hematology, University Children's Hospital Basel

Basel, Switzerland

RECRUITING

Division of Oncology/ Hematology, Department of Pediatrics, Kantonsspital Lucerne

Lucerne, Switzerland

RECRUITING

Related Publications (1)

• Denzler S, Otth M, Scheinemann K. Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study. JMIR Res Protoc. 2020 Aug 26;9(8):e18898. doi: 10.2196/18898.

  PMID: 32845247 DERIVED

MeSH Terms

Conditions

Neoplasms

Study Officials

• Katrin Scheinemann, MD

  Kantonsspital Aarau

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Katrin Scheinemann, MD

CONTACT

004162 838 4909; katrin.scheinemann@ksa.ch

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Division Head of Pediatric Oncology-Hematology

Study Record Dates

• First Submitted: February 20, 2020
• First Posted: February 25, 2020
• Study Start: February 12, 2019
• Primary Completion: April 1, 2025
• Study Completion (Estimated): August 1, 2030
• Last Updated: August 17, 2022

Record last verified: 2022-08

Data Sharing

• IPD Sharing: Will not share

Locations

CH (3)