Parent caregivers' preferences and satisfaction with currently provided childhood cancer survivorship care

Abstract

Purpose: The aim of this study was to investigate the level of satisfaction of parent caregivers of childhood cancer survivors (CCSs) with currently provided survivorship care and their preferences for survivorship care provider.

Methods: Study subjects were parent caregivers recruited at three hospitals in Korea. Study data were collected from self-administered questionnaires and medical records. We assessed parent caregivers' levels of satisfaction with specific survivorship care contents and preferred types of survivorship care provider among oncologists, primary care physicians (PCPs), and institutional general physicians (IGPs). Factors associated with parent caregivers' preferences for survivorship care provider were evaluated by multiple logistic regression analysis.

Results: 680 parent caregivers (mother 62.1% and father 37.9%) of 487 CCSs (mean age at diagnosis: 6.9 ± 5.1 years; mean time since treatment completion 5.4 ± 4.4 years) were included. Parent caregivers' dissatisfaction was the highest with screening for second primary cancer, followed by psychosocial problem management. Higher educational level of parent caregiver, parent caregiver's higher level of dissatisfaction with currently provided care, higher age of CCSs at cancer diagnosis, history of receiving hematopoietic stem cell transplant, and longer time lapse after cancer treatment were significantly associated with parent caregivers' higher preference for PCPs or IGPs than oncologists. Parent caregiver's multiple comorbidities and higher fear of cancer recurrence were associated with parent caregivers' higher preference for oncologists than PCPs or IGPs. Around 80% of parent caregivers recognized that a shared care system was helpful for promoting the health of CCSs.

Conclusion: Parent caregivers were substantially dissatisfied with currently provided care, especially regarding the health issues not directly associated with the primary cancer. Parent caregivers' preferences for survivorship care provider is influenced by multiple factors, including age and survival time of CCSs, characteristics of parent caregivers, satisfaction level with care, and specific survivorship care contents.

Implications for cancer survivors: The findings of our study suggest that shared survivorship care for CCSs with consideration of specific care contents can complement the current oncologist-led survivorship care system.

Keywords: Childhood cancer survivors; Childhood cancer survivorship care; Parent caregivers; Preferences.