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. 2022 Aug 19;56(9):731–739. doi: 10.1097/MCG.0000000000001749

TABLE 3.

Suggested Features for PROMS Assessing Symptoms, Side Effects, and HRQoL Related to PLD Treatment

Feature Need to Have Nice to Have
Validation Validated
Symptoms Assesses PLD-specific symptoms (yes/no) Includes threshold to select patients for treatment
HRQoL Provides an overall indication of HRQoL Can detect clinically relevant changes in HRQoL Includes specific HRQoL subdomains (ie, emotional health, health perception)
Complications and side effects Includes most frequent complications and side-effects associated with the treatment Includes options to report unexpected side effects or complications
Time needed ≤30 minutes ≤15 minutes
Language Language use understandable for the entire population Available in multiple languages to enable cross-country comparability
Frequency of administration (medical therapy) At baseline and after stopping the treatment During treatment with an appropriate interval depending on the therapy During follow-up period after stop treatment Treatment-specific effects on symptom burden, HRQoL and complications should be taken into account when administering the PROM during follow-up
Frequency of administration (radiologic and surgical) Baseline and at the end of follow-up Treatment-specific effects on symptom burden, HRQoL and complications should be taken into account when administering the PROM during follow-up