Introduction:

Patient-reported outcome measures (PROMs) provide a standardized way for patients to share insights on well-being, quality of life, mental health, treatment satisfaction, and future health goals—often “invisible” metrics until these issues escalate. Although PROM integration into post-pediatric LT (pLT) clinical care has demonstrated feasibility, sustained use has stalled. This study investigates the PeLTQL in identifying common patient-reported concerns in a representative cohort to aid intervention planning and resource allocation.

Methods:

PeLTQL data from patient-parent dyads completed between 01/01/2022 to 02/03/2025 were reviewed. Likert responses were converted to a 0–100 scale generating a total (PeLTQL-TS) and three subdomain scores: Future Health, Coping & Adjustment, and Social-Emotional. A PeLTQL-TS value < 62.5 indicates “at-risk” for anxiety.

Results:

A total of 161 PeLTQLs were identified; 83 completed for a research study and 2 with too many missing responses were excluded. The final cohort was comprised of 61 subjects completing 76 PeLTQLs, with 15 (25%) completing two (Table 1).  The intraclass correlation coefficient (ICC) was 0.54 (95% CI, 0.31-0.71), indicating moderate dyad agreement. The top self-reported concerns were scar visibility (26%) and overprotective parents (25%). Eighteen (32%) patients were identified as “at-risk” (median (IQR) self-PeLTQL-TS 55.29 (49.03-59.86)), whereas 62% of their parents reported “not at-risk” proxy-PeLTQL-TS scores (64.5 (55.05-75.24); p=0.03). “At-risk” patients were more likely than not “at-risk” patients to report concerns about scar visibility (62% vs 10%), future health problems (40% vs 2%), being treated differently (38% vs 2%), and overprotective parents (33% vs 14%). Eight (57%) of the patients who completed the PeLTQL twice reported a change in PeLTQL-TS exceeding the minimal clinically important difference of 6.45. 

Conclusions:

Routine PROM use in pLT surveillance care reveals a disconnect between self- and proxy-reported concerns, with “at-risk” patients more often expressing worries about scar visibility and future health. These findings highlight the need to prioritize the patient voice. A qualitative study exploring coping with surgical scars pLT is underway.