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What Shapes Satisfaction With Daily Life Participation? Insights Into Functional Outcomes After Pediatric Bone
Leonie G Tigelaar1, Willem P Bekkering1, Lianne M Haveman1
1Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands.
Objective:
To structurally evaluate functional outcomes in a nationwide cohort of pediatric patients with bone sarcoma after local therapy, including stratification of outcomes by tumor location and surgical approach for tumors around the knee, and to explore factors related to satisfaction with participation.
Design:
Survey.
Setting:
Multidisciplinary follow-up clinic at a tertiary referral center.
Participants:
A total of 122 pediatric patients with bone sarcoma, ≥2 years postdiagnosis, had completed treatment for pelvic or lower-extremity tumors and attended the multidisciplinary follow-up clinic. Mean age at assessment was 20.0 years (SD, 5.4), 44% were female, and median time since local therapy was 5.8 years (Q1-Q3, 3.0-10.3).
Interventions:
Not applicable.
Main Outcome Measures:
PedsQL Multidimensional Fatigue Scale (PedsQL Fatigue), numeric rating scale (pain), 10-meter walk test (10-MWT), 6-minute walk test (6-MWT), lateral step-up test, timed up and down stairs, Toronto Extremity Salvage Score, Patient-Reported Outcomes Measurement Information System (PROMIS)-Physical Functioning (PF), Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P) Frequency, Restrictions and Satisfaction scales, and PROMIS-Pain Interference (PI). Assessments were structured according to the International Classification of Functioning, Disability, and Health (ICF).
Results:
Patients demonstrated worse outcomes compared with reference values for the PedsQL Fatigue, 10-MWT, 6-MWT, and PROMIS-PF (all P≤.007). PI scores were comparable with reference scores (P=.912), despite 57% of patients reporting pain. No surgical approach emerged consistently superior across measures. Satisfaction with participation (USER-P Satisfaction) was significantly associated with restrictions and fatigue (P<.001).
Conclusion:
Functional outcomes in pediatric patients with bone sarcoma vary across ICF domains, each providing distinct insights. Satisfaction with participation in daily life was associated with restrictions and fatigue. However, no clear association was observed with surgical approach for bone sarcoma around the knee, suggesting that other factors, such as personal and psychosocial characteristics, may play a crucial role. These findings underscore the need for patient-centered care and targeted support, and inform both local therapy counseling and follow-up care.
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