A detailed insight in the high risks of hospitalizations in long-term childhood cancer survivors—A Dutch LATER linkage study

Abstract Background The successful transition of childhood cancer survivors (CCSs) from pediatric to adult long-term follow-up care is a critical phase, and determining the right time point can be challenging. We assessed the feasibility of the use of existing transition readiness tools in the context of the Swiss health care system, assessed partly transition readiness in Swiss CCSs, and compared our findings with Canadian CCSs for which these tools were originally developed. Methods We officially translated the Cancer Worry Scale (CWS) and Self-Management Skill Scale (SMSS) into German and integrated them into this cross-sectional study. We included CCSs attending the long-term follow-up (LTFU) clinic in the Division of Oncology-Hematology, Department of Pediatrics, Kantonsspital Aarau. We used descriptive statistics to describe transition readiness. Results We randomly recruited 50 CCSs aged ≥18 years at participation. The CCSs had a median CWS score of 62 (interquartile range 55–71), indicating a moderate level of cancer-related worry. Despite high self-management skills, some answers showed a dependency of CCSs on their parents. Our experience shows that the CWS and SMSS are easy for Swiss CCSs to use, understand, and complete. The interpretation of the results must take differences in health care systems between countries into account. Conclusions The translated CWS and SMSS are appropriate additional measures to assess transition readiness in CCSs. These scales can be used longitudinally to find the individual time point for transition and the completion by CCSs enables the health care team to individualize the transition process and to support the CCSs according to their individual needs.

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The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors

Pediatric Blood & Cancer ◽

10.1002/pbc.25310 ◽

2014 ◽

Vol 62 (2) ◽

pp. 322-328 ◽

Cited By ~ 18

Author(s):

Morven C. Brown ◽

Gillian A. Levitt ◽

Eva Frey ◽

Edit Bárdi ◽

Riccardo Haupt ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Childhood Cancer Survivors ◽

Long Term Follow Up

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PO-0770: Subsequent colorectal adenomas in childhood cancer survivors: a DCOG LATER record linkage study

Radiotherapy and Oncology ◽

10.1016/s0167-8140(16)32020-5 ◽

2016 ◽

Vol 119 ◽

pp. S360-S361

Author(s):

J. Teepen ◽

J. Kok ◽

F. Van Leeuwen ◽

W. Tissing ◽

W. Dolsma ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Record Linkage ◽

Childhood Cancer Survivors ◽

Linkage Study ◽

Colorectal Adenomas

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Quality of life in long-term childhood cancer survivors and the relation of late effects and subjective well-being

Supportive Care in Cancer ◽

10.1007/s00520-004-0724-0 ◽

2004 ◽

Vol 13 (1) ◽

pp. 49-56 ◽

Cited By ~ 58

Author(s):

Sigrid Pemberger ◽

Reinhold Jagsch ◽

Eva Frey ◽

Rosemarie Felder-Puig ◽

Helmut Gadner ◽

...

Keyword(s):

Quality Of Life ◽

Cancer Survivors ◽

Childhood Cancer ◽

Late Effects ◽

Well Being ◽

Childhood Cancer Survivors ◽

Subjective Well Being

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A vulnerable age group: the impact of cancer on the psychosocial well-being of young adult childhood cancer survivors

Supportive Care in Cancer ◽

10.1007/s00520-021-06009-y ◽

2021 ◽

Author(s):

L. M. E. van Erp ◽

H. Maurice-Stam ◽

L. C. M. Kremer ◽

W. J. E. Tissing ◽

H. J. H. van der Pal ◽

...

Keyword(s):

Young Adults ◽

Young Adult ◽

Cancer Survivors ◽

Childhood Cancer ◽

Psychosocial Outcomes ◽

Well Being ◽

Childhood Cancer Survivors ◽

Negative Impacts ◽

Time Since Diagnosis

Abstract Purpose This study aimed to increase our understanding of the psychosocial well-being of young adult childhood cancer survivors (YACCS) as well as the positive and negative impacts of cancer. Methods YACCS (aged 18–30, diagnosed ≤ 18, time since diagnosis ≥ 5 years) cross-sectionally filled out the “Pediatric Quality of Life Inventory Young Adults” (PedsQL-YA), “Hospital Anxiety and Depression Scale” (HADS), and “Checklist Individual Strengths” (CIS-20R) to measure fatigue and survivor-specific “Impact of Cancer - Childhood Survivors” (IOC-CS), which measures the long-term impact of childhood cancer in several domains. Descriptive statistics (IOC-CS), logistic regression (HADS, CIS-20R), and ANOVA (PedsQL-YA, HADS, CIS-20R) were performed. Associations between positive and negative impacts of childhood cancer and psychosocial outcomes were examined with linear regression analyses. Results YACCS (N = 151, 61.6% female, mean age 24.1 ± 3.6, mean time since diagnosis 13.6 ± 3.8) reported lower HRQOL (− .4 ≤ d ≤ − .5, p ≤ .001) and more anxiety (d = .4, p ≤ .001), depression (d = .4, p ≤ .01), and fatigue (.3 ≤ d ≤ .5, p ≤ .001) than young adults from the general Dutch population. They were at an increased risk of experiencing (sub)clinical anxiety (OR = 1.8, p = .017). YACCS reported more impact on scales representing a positive rather than negative impact of CC. Various domains of impact of childhood cancer were related to psychosocial outcomes, especially “Life Challenges” (HRQOL β = − .18, anxiety β = .36, depression β = .29) and “Body & Health” (HRQOL β = .27, anxiety β = − .25, depression β = − .26, fatigue β = − .47). Conclusion YACCS are vulnerable to psychosocial difficulties, but they also experience positive long-term impacts of childhood cancer. Positive and negative impacts of childhood cancer were associated with psychosocial outcomes in YACCS. Screening of psychosocial outcomes and offering targeted interventions are necessary to optimize psychosocial long-term follow-up care for YACCS.

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