General recommendations for patients and relatives
Author: Dr. med. Gesche Riabowol (nee Tallen), Editor: Maria Yiallouros, English Translation: Dr. Natalie Kharina-Welke, Last modification: 2024/05/02 https://kinderkrebsinfo.de/doi/e1922
Table of contents
Close collaboration between the attending paediatrician in private and the paediatric oncologists is crucial for efficient aftercare. Accurate documentation of the patient’s clinical course and treatment examination is essential for good collaboration.
Parents as well as the children and young adults themselves can contribute to this. You will find some recommendations on this below.
Keeping a notebook
It is always helpful to keep a notebook, for example for keeping track of certain observations, complaints, questions and also measurements of body temperature. Clinical staff and paediatricians can also record control findings (in particular the number of leukocytes), medication and the results of any diagnostic tests.
Attendance of follow-up appointments
Attending the recommended follow-up appointments in the paediatric oncology outpatient clinic is extremely important. Follow-up appointments may include discussions about reintegration into everyday life, psychosocial issues, physical examinations and blood count check-ups. Also, follow-up imaging procedures and other tests are necessary, depending on the patient's clinical condition and the time after the end of intensive therapy.
Reconnecting with the family's paediatrician
Since the care of children and adolescents with cancer during the intensive phase of therapy takes place exclusively in a paediatric oncological treatment center or at least in a corresponding clinic, the connection between the family and their primary paediatrician or family doctor may be inmterrupted for a while. Hence, this connection needs to be re-established so that the family has someone to go to with their general medical issues and check-ups even after cancer therapy has been completed. The fear of a potential relapse and whether it can be detected as early as possible is one of the major worry for most families during early after-care. A check-up by the paediatrician/family doctor can help providing clarification.
Recommendations for patients after stem cell transplantation
Follow-up care of patients after stem cell transplantation is complex. Depending on the type of stem cell transplant as well as the intensity and duration of immunosuppressive therapy, the time at which the patient's immune system has fully recovered does vary. In some patients, susceptibility to infection can be a long-term challenge. The problem of chronic graft-versus-host disease (GvHD) and its treatment also requires specialists‘ expertise, and hence follow-up of these patients should be carried out by paediatric oncologists/haematologists.
Reintegration into everyday life
Both parents and former patients often experience severe anxiety, for example with regards to infections, as well as strong ambition to achieve complete rehabilitation as quickly as possible when reintegrating into everyday life and the social environment. During this time, it is helpful to ask the caregiver team what to expect regarding the potentially upcoming medical, psychosocial and emotional challenges and how they can be managed.
Most children and adolescents want to live a normal life after their cancer treatment. In order to support them as much as possible, their environment should be informed without stigmatizing the cancer survivor. Therefore, relatives (in consultation with the children and adolescents) should carefully consider the extent to which they inform the caregivers in their child's social environment about the details of their child's illness or current problems. Usually, the psychosocial team of the treatment centre can help with these decisions and also with the first conversations with, for example, educators or teachers.
