Prospective cohort study reveals high satisfaction but moderate worries among childhood cancer survivors in follow-up care, indicating areas for improvement.
Background: Late effects are frequent among adult childhood cancer survivors (ACCS), highlighting the importance of long-term follow-up (LTFU) care. This study aimed to examine satisfaction and worries of ACCS after their first visit to dedicated LTFU clinics, and to identify factors associated with satisfaction and worries. Methods: Eligible participants were ACCS (>18 years) entering LTFU care at one of two Swiss outpatient clinics. Prior to their first visit and three months after the visit, participants completed a set of questionnaires. Satisfaction after the visit was assessed in three domains: patient-centered care, information dissemination, and worries, with scores ranging from 1 to 4. For each scale, a mean score was calculated. We used univariable and multivariable regression analyses to assess the association between participant characteristics and outcomes. Results: A total of 145 ACCS were included in the study. Satisfaction was very high, with mean scores of 3.77 (SD = 0.28, range = 2.75–4.00) for patient-centered care and 3.58 (SD = 0.33, range = 1.78–4.00) for information dissemination. Moderate worries were reported (M = 2.02, SD = 0.71, range = 1.00–3.67). Discussing a higher proportion of wished topics during the visit was significantly associated with greater satisfaction with patient-centered care (p=0.011). Lower mental HRQoL was significantly associated with increased worries (p=0.032). Conclusions: Satisfaction with LTFU visits was generally very high, with desired discussion topics being an important determinant. ACCS with lower mental HRQoL may benefit from additional guidance and psychological support to mitigate worries following FU care visits.
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Buchmüller et al. (2025) studied this question.
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