A nationwide questionnaire survey on late effects among Dutch childhood cancer survivors: which invitation strategy to use?

Plain English summary of protocol

Background and study aims
Advances in the diagnosis and treatment of childhood cancer in the last decade has meant that many more children now survive the disease. Unfortunately, however, it has become increasingly apparent that both the treatment and the cancer itself can have long-term effects on health. Long-term follow-up of childhood cancer survivors (CCS) is therefore vital. The Dutch Childhood Oncology Group (DCOG) has set up a nationwide study called DCOG-LATER, which aims to identify which groups of CCS are most at risk of long-term health problems which will then form the basis of recommendations on later follow-up programmes. The study also involves research on accurate screening tests and effective treatments (interventions) that might be needed to reduce morbidity and mortality in CCS. In order for the DCOG-LATER study results to be meaningful, it is important that a representative group of CCS participate in the study. It is therefore vital to encourage as many CCS to participate as possible. Characteristics such as the age and gender of a potential participant and also what the study involves can influence whether or not they will agree to take part. The aim of this study is to investigate the effect of different invitation strategies on participation rates in a questionnaire survey among CCS. We also want to investigate reasons for non-participation, whether people prefer to complete a paper-based or web-based questionnaire and which groups of CCS (in terms of age, or gender) prefer each type of questionnaire.

Who can participate?
Adult CCS that were diagnosed with cancer before the age of 18 and between 1st January 1962 and 31st December 2001, alive 5 years after diagnosis and treated in one of the seven Dutch paediatric oncology and stem cell transplant centers. They also have to be currently living in the Netherlands.

What does the study involve?
Each participant is randomly allocated to one of three groups. All participants receive an initial invitation to take part in the study. For groups 1 and 2, two postal reminders and one telephone reminder are sent out. For group 3, only one postal reminder and one telephone reminder is sent. With each invitation, the CCS were given a web-based questionnaire. Paper-based questionnaires are also given at various timepoints depending on group. Group 3 receive the paper-based questionnaire as part of their initial invitation, group 2 as part of the first reminder and group 1 receive their paper-based questionnaire as part of their second reminder.

What are the possible benefits and risks of participating?
Not provided at time of registration

Where is the study run from?
Academic Medical Center (Netherlands)

When is the study starting and how long is it expected to run for?
December 2012 to June 2013

Who is funding the study?
1. The Dutch Childhood Oncology Group (DCOG) (Netherlands)
2. The Children Cancerfree Foundation (KiKa) (Netherlands)

Who is the main contact?
Miss Monique Jaspers

Study website

Contact information

Study information

Eligibility

Locations

Countries of recruitment

• Netherlands

Study participating centre

Sponsor information

Academic Medical Center (AMC) (Netherlands)
Hospital/treatment centre

Meibergdreef 9
Amsterdam
1105 AZ
Netherlands

Website	https://www.amc.nl
"ROR"	https://ror.org/03t4gr691

Funders

Funder type

Charity

Results and Publications

Study outputs

Editorial Notes

18/04/2017: Publication reference added.