Feasibility and Acceptability of the Patient-Reported Outcomes Measurement Information System Measures in Children and Adolescents in Active Cancer Treatment and Survivorship

Abstract

Background Patient-reported outcomes (PROs) related to symptoms, function, and quality of life during and following cancer treatment can guide care for pediatric cancer patients. To advance the science of PROs, the National Institutes of Health funded the Patient Reported Outcomes Measurement Information System (PROMIS). Objective To assess feasibility and acceptability of the PROMIS pediatric measures, as defined by enrollment and attrition rates as well as missingness by measure, item, participant, and assessment time point. Methods 8-to-18 year olds participated in two studies: PROMIS I, a cross-sectional study of children in active cancer treatment or survivorship, and PROMIS II, a longitudinal study with 3 assessment time points for children receiving curative treatment. Results PROMIS I (n=200) and PROMIS II (n=94) had enrollment rates of 92.5% and 89.7%, respectively. For PROMIS I, measure missingness was acceptable (8% missed any measures) and was not related to other study variables. For PROMIS II, measure missingness was minimal (0.8%), and item-level missingness was relatively low. In general, items that were skipped asked about experiences that participants had not encountered in the past 7 days. Conclusions In both studies, the PROMIS instruments demonstrated good feasibility and acceptability among pediatric cancer patients. Overall, we had high enrollment, low attrition, and acceptable rates of measure and item missingness. Implications for Practice Our results demonstrate that PROMIS measures are acceptable to 8-to-18 year-olds in different points of cancer care and feasible for use in pediatric cancer inpatient and outpatient settings.

PROMIS® pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions

“…Sixteen (8%) had missing scores for at least 1 of the PROMIS measures. Thirteen of these 16 participants (6.5%) ended the survey early, so the missing measures were at the end of the survey [23]. …”

Measures and Methods for Symptom and Symptom Cluster Assessment in Adolescents and Young Adults with Cancer

“…34 PROMIS pediatric measures for fatigue, pain interference, depressive symptoms, and anxiety are feasible and acceptable for use with adolescents in active cancer treatment and survivorship. 35 Adult PROMIS measures for fatigue, sleep disturbance, wake disturbance, and depression are acceptable and feasible for use with YAs receiving chemotherapy. 36 Because the pediatric item banks are specified for respondents ages 8 to 18 and the adult item banks for those over 18, PROMIS does not provide single instruments for use across the specific age range for AYAs.…”

Feasibility and diagnostic accuracy of the Patient‐Reported Outcomes Measurement Information System (PROMIS) item banks for routine surveillance of sleep and fatigue problems in ambulatory cancer care

“…To date, we were only able to identify three studies that have examined the feasibility of the application of PROMIS ® for use in routine oncology clinical care [37][38][39] . These studies did not assess the diagnostic accuracy of PROMIS ® CAT in comparison to legacy measures using a Receiver Operator Characteristic (ROC) methodology.…”