Who can enter
- Childhood cancer survivors (more than five years since diagnosis) receiving follow-up care in the LATER outpatient clinic
- Treated with chemotherapy and/or radiotherapy
- Age: 16 years and older
Please note: this study is now closed for inclusion
Goal
The goal of this study is to evaluate the satisfaction of childhood cancer survivors and their LATER health care providers with the LATER Individual Care Plan. In addition, we will evaluate if the LATER health care providers work well with the LATER Individual Care Plan.
Currently, childhood cancer survivors do not have access to a care plan that describes the individual long-term follow-up care. We hope to use the information from this study to improve the LATER Individual Care Plan and the conversation about it in the LATER outpatient clinic. Subsequently, the LATER Individual Care Plan will become available to every childhood cancer survivor at the LATER outpatient clinic.
Background
Childhood cancer survivors who go to the LATER outpatient clinic do not always know what care they can expect in the coming years, and why. It is also sometimes unclear to them what treatment they received as a child and what the associated health risks of this treatment are. The LATER Individual Care Plan is a document that explains all this information in simple terms. The Individual Care Plan provides information about the previous childhood cancer diagnosis and treatment, the possible health risks, and the long-term follow-up care that is needed to monitor and prevent these health risks as much as possible.
The LATER Individual Care Plan was developed to ensure that childhood cancer survivors can take more control of the care they need as well as to ensure that care is tailored to their personal preferences. The LATER Individual Care Plan helps determine what the best care is for them.
Wat will we do?
The study consists of several steps linked to the LATER outpatient clinic visit.
- Prior to the LATER outpatient clinic visit, the participating childhood cancer survivors will receive the LATER Individual Care Plan.
- During the appointment at the LATER outpatient clinic, the long-term follow-up care is discussed with the LATER health care provider using the LATER Individual Care Plan. The LATER Individual Care Plan can be modified based on personal preferences. Other than that, the visit will be the same as normal.
- After the LATER outpatient clinic visit, there is a telephone appointment with the LATER health care provider about any results of the tests that have been done and the LATER Individual Care Plan will be finalized. This appointment is also the same as normal. After the telephone appointment, participants will receive their final LATER Individual Care Plan.
- Afterwards, participants will be asked to complete an online questionnaire about the satisfaction with the LATER Individual Care Plan.