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JOURNAL ONKOLOGIE – STUDIE
ACCS

Aftercare of Childhood Cancer Survivors in Switzerland

Rekrutierend

NCT-Nummer:
NCT04284189

Studienbeginn:
Februar 2019

Letztes Update:
17.08.2022

Wirkstoff:
-

Geschlecht:
Alle

Altersgruppe:
Alle

Phase:
-

Sponsor:
Kantonsspital Aarau

Collaborator:
University Children's Hospital Basel, Luzerner Kantonsspital,

Studienleiter

Katrin Scheinemann, MD
Principal Investigator
Kantonsspital Aarau

Kontakt

Studienlocations
(3 von 3)

Studien-Informationen

Detailed Description:

Background: Every year over 300 children and adolescents up to the age of 18 years are newly

diagnosed with cancer in Switzerland. Survival after childhood cancer has increased

substantially over the last decades and 10-year survival now exceeds 85%. This results in an

increasing numbers of childhood cancer survivors - currently around 7,000 survivors in

Switzerland. Due to cancer treatment or the cancer itself, a large part of the childhood

cancer survivors suffers from late effects. Early diagnosis and intervention can reduce

morbidity and mortality due to late effects. Therefore, regular follow-up care, even beyond

childhood, is very important, but transition from pediatric to adult follow-up care is a

critical point. In Switzerland there are very different aftercare and transition models,

although it is unclear which aftercare strategy is the best and meets the needs of survivors.

The Aftercare of Childhood Cancer Survivors (ACCS) study aims to fill this gap.

Objectives: The main objective of the ACCS study is to identify the current needs of

adolescent and young adult long-term survivors in terms of follow-up care by comparing three

different transition practices. The secondary objective is to assess survivors' knowledge on

their diagnosis, therapy and follow-up examinations longitudinally.

Methods: ACCS is a multicenter questionnaire-based study, including survivors from three

pediatric oncology centers in Switzerland. Eligible survivors who already transitioned to

adult care at start of the study once receive a letter explaining the purpose of the study,

the study information, the informed consent form, and the questionnaire. The questionnaire

asks about cancer knowledge and additionally includes validated scales on cancer worry,

self-management skills, ongoing care, and expectations. The survivors send the documents back

by a prepaid envelope. Eligible survivors before transition to adult care at start of the

study receive a letter explaining the purpose of the study, the study information and

informed consent form, and the first questionnaire two to four weeks before the next

scheduled follow-up visit. They can either send the documents back before the visit or bring

them to the visit. The participants receive three month after the visit a short questionnaire

to assess cancer knowledge. Three month after the follow-up visit after transition (15 month

after last visit in pure pediatric setting), the participants receive the first comprehensive

questionnaire again.

Rationale and significance: There are very different aftercare and transition models in

Switzerland, although it is unclear which follow-up care strategy best meets the needs of

survivors. The data collected within the ACCS study helps to define which transition and

follow-up care strategies and related factors are favoured by adolescent and young adult

survivors. Adaption of transition processes to the needs of survivors improve adherence to

follow-up care of adult childhood cancer survivors. As late effects increase with increasing

time from treatment, adult survivors of childhood cancer are at particular risk to develop

late effects and it is important that they continue follow-up care.

Ein-/Ausschlusskriterien

Inclusion Criteria:

- 5-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

Exclusion Criteria:

- 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

Studien-Rationale

Primary outcome:

1. Cancer Worry as part of transition readiness (Time Frame - Change from baseline to 3 month and 15 month):
Assessment via validated "Cancer Worry Scale"

2. Self-management as part of transition readiness (Time Frame - Change from baseline to 3 month and 15 month):
Assessment via validated "Self-Management Skill Scale"

3. Evaluation of needs for ongoing care as part of transition readiness (Time Frame - Change from baseline to 3 month and 15 month):
Assessment via validated "Scale for ongoing Care"

4. Evaluation of expectation for transition as part of transition readiness (Time Frame - Change from baseline to 3 month and 15 month):
Assessment via validated "Expectation Scale"

Secondary outcome:

1. Survivors' cancer specific knowledge (Time Frame - Change from baseline to 3 month and 15 month):
Assessment via questionnaire

Geprüfte Regime

  • Transition model:
    Transition of follow-up care of childhood cancer survivors to adult care

Quelle: ClinicalTrials.gov


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