Cancer knowledge and health-consciousness in childhood cancer survivors following transition into adult care—results from the ACCS project

Abstract

BackgroundKnowledge on chronic medical conditions in childhood cancer survivors (CCSs) is constantly growing and underlines that long-term follow-up (LTFU) care is often mandatory, also in adulthood. However, many CCSs discontinue follow-up care after transition to adult care. One reason might be that the current transition practices do not meet the needs of adolescent and young adult CCSs. We therefore aim to evaluate different transition models for Swiss CCSs by assessing their cancer knowledge, cancer worries, self-management skills, and expectations for LTFU care, following transition in two different hospital-based models.MethodsWithin the Aftercare of Childhood Cancer Survivors (ACCS) study, we performed a questionnaire-based survey with a cross-sectional and longitudinal part. We included 5-year CCSs aged >16 years at recruitment who were transitioned to adult care in two hospitals between 2014 and 2021. Here, we report the results of the cross-sectional part. We compared the survivors’ cancer knowledge with medical record data and assessed cancer worries (6 questions), self-management skills (15 questions), and expectations (12 questions) by validated scales. We used descriptive statistics, chi-squared test, and t-tests to describe the results.ResultsWe analyzed 57 CCSs (response rate 44%), 60% of those were female, had a median age of 9 years at diagnosis and 23 years at the questionnaire. Most CCSs recalled their diagnosis (95%) and exposure to treatment modalities (98%) correctly. CCSs worried the most about potential late effects (47%) and issues with having children in the future (44%). At least 75% of CCSs agreed to 12 of the 15 self-management questions, indicating high self-management skills. The top three expectations included that physicians know the survivors’ cancer history, that visits start on time, and that physicians can always be called in case of questions.ConclusionCCSs receiving hospital-based LTFU care have good cancer knowledge and high self-management skills. The identified worries and expectations will help to improve the LTFU care of CCSs who transition to adult care, to further inform and educate survivors and healthcare professionals about and might be relevant for other countries with a similar healthcare system.

Educational pathways of childhood cancer survivors—a parental cohort

“…The association of post-traumatic growth with educational attainment is supported by the study of Zynda et al in which participating survivors were more likely to achieve A-levels than peers from the general population [39]. Similarly, Otth et al found high self-management skills among CCS respondents [22]. The support system for childhood cancer patients, which includes individual support from the psychosocial team and in-hospital educators, could also play an important role in promoting patient educational skills.…”

Ajuste y adaptación psicosocial de adultos jóvenes supervivientes de un cáncer en etapa pediátrica: Revisión sistemática

“…En cuarto lugar, se buscaba analizar si existe una mayor necesidad de apoyo médico y psicosocial en población adulta de supervivientes a medio-largo plazo en comparación con población no oncológica, ya que, tiempo después de la finalización del tratamiento, pueden seguir teniendo necesidades insatisfechas. Diferentes estudios coinciden en que, independientemente del tiempo transcurrido desde el tratamiento, la mayoría de supervivientes describe una necesidad y carencia de apoyo psicosocial en el seguimiento a largo plazo, e incluso, de por vida (26,27,28) . En el estudio de Lahaye et al (29) , los supervivientes explican que durante la enfermedad se sienten cuidados por el entorno médico y social; pero que después, esa atención desaparece y refieren una necesidad de recibir atención específica.…”

“…Los resultados del presente trabajo ponen de manifiesto la pertinencia de la asistencia y seguimiento a largo plazo de los supervivientes de cáncer infantil, pues la evidencia sugiere que dicha atención generaría beneficios, tales como un alto conocimiento sobre la enfermedad, preocupaciones moderadas o habilidades de autocontrol (27) . Sin embargo, falta apoyo psicológico y social en el seguimiento, colaboración interdisciplinar entre profesionales de la salud y una atención centralizada, especializada e individualizada (26,28,29) que contemple la promoción de estilos de vida saludables como aspectos importantes de la atención a largo plazo (48) .…”

Health Care Transitions Among Adolescents and Young Adults With Cancer

“…75 Few studies have concentrated on optimizing transitions. There are several small studies assessing the feasibility and acceptability of structured transition programs 90 or different modes of transitional practice 115,116 and one larger ongoing study assessing multilevel barriers to successful transition (The Improving Support for Survivors…”

“…75 Few studies have concentrated on optimizing transitions. There are several small studies assessing the feasibility and acceptability of structured transition programs 90 or different modes of transitional practice 115,116 and one larger ongoing study assessing multilevel barriers to successful transition (The Improving Support for Survivors Engaged in Transition study [National Cancer Institute, NCI P30 CA138292]). Beyond these, there are few active intervention trials targeting transitional practices in this population.…”