Patient-reported Quality of Life during Photon and Proton Radiation Therapy: Results of a Prospective Registry of Patient Reported Outcomes in a Large-Volume, Multi-Site Practice

Abstract

Patient reported outcomes such as quality of life (QOL) are increasingly utilized to assess quality and value of medical care. In 2015 we instituted a prospective patient outcomes registry and biobank to evaluate patient reported toxicities, clinical outcomes, and QOL in a large, multi-site practice to establish quality metrics as well as correlate genetic factors with patient outcomes. In this first report, we aimed to evaluate early QOL changes in patients receiving fractionated external beam (proton/photon) radiotherapy (RT). Institutional prospective outcomes registry was utilized to identify all patients treated with curative intent RT receiving >14 fractions of RT who had completed both a baseline and end of RT PROMIS10 questionnaire between July 1, 2015 and December 31, 2017. PROMIS10 uses a 5-point Likert scale and allows measurements of symptoms, functioning, and healthcare-related QOL. Scores were dichotomized into normal/near-normal (4,5) vs all other (1-3) for individual item analysis. Decline in QOL was defined as a ≥2-point change in score as compared to baseline for each question analyzed by individual patient responses. Baseline scores, as well as change in scores from baseline to end of RT, were compared between patient groups using a Wilcoxon rank sum test. Chi-square analysis was performed for associations of QOL and patient and treatment factors. Of 3297 eligible patients, 2203 (67%) completed baseline and end of RT questionnaires and included in this analysis. Mean age was 61.8 years (range 18.5-94.4); 45% were female and 27% received proton RT. Distribution of disease sites treated are as follows: breast (25%), prostate (21%), gastrointestinal (15%), head/neck (14%), central nervous system (9%), sarcoma (5%), lung (4%), lymphoma (2%), and gynecologic (2%). For each of the 10 questions/domains, 10% or fewer of patients experienced declines in QOL at the end of RT. Greater than 10% declines in physical domains of QOL were seen in head/neck, gastrointestinal, and lung patients. Younger age and higher-stage was associated with lower global physical and mental health scores (p<0.001 for each) at the end of therapy. Patients receiving proton RT reported less impairment in carrying out daily physical activities at baseline (19% vs 25%, p <0.01) but there were no significant differences in baseline global QOL scores. Proton RT was associated with less decline in global physical score but the difference is small (median 0 vs -2.5, p<0.01) and likely due to less fatigue (50% vs 55%, p=0.02) and less difficulty carrying out daily physical activities (24% vs 34%, p<0.01) reported at the end of treatment. In a large multi-site practice, PROMIS10 survey appears useful in documenting changes in QOL in the acute setting. Proton RT may be associated with reduced declines in physical QOL. Further efforts to improve compliance with end-of-treatment surveys are ongoing.