Children With Cancer, Parents, and Providers Value Patient-Reported Outcomes Feedback
In a pilot trial (PediQUEST) reported in the Journal of Clinical Oncology, Wolfe et al assessed the effects of use of the PediQUEST electronic patient-reported feedback survey on health-related quality of life in children with advanced cancer. Although few significant improvements were observed, changes in health-related quality of life were all in the positive direction and children, parents, and providers reported valuing the information provided by the PediQUEST reports.
Study Details
The study was a parallel, multicenter pilot trial in which children aged ≥ 2 years with advanced cancer or their parent completed the computer-based Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) survey consisting of age- and respondent-adapted versions of the Memorial Symptom Assessment Scale (PQ-MSAS), Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL4.0), and an overall Sickness question.
Patients were randomly assigned to the intervention group (n = 51), in which oncologists and families received printed reports summarizing patient-reported outcomes and e-mails were sent to oncologists and subspecialists when predetermined scores were exceeded, or a control group (n = 53), which received no feedback. Primary outcomes included trends in PQ-MSAS, PedsQL4.0 total and subscale scores, and Sickness scores over 20 weeks of follow-up and child, parent, and provider satisfaction with PediQUEST feedback.
Quality-of-Life Outcomes
Feedback to families and providers had no significant effect on average PQ-MSAS, PedsQL4.0, or Sickness scores, although changes all favored improved quality of life (ie, reductions in PQ-MSAS and Sickness scores, increase in PedsQL4.0).
Exploratory subgroup analyses showed that in children who survived > 20 weeks, feedback was associated with significant improvement in PedsQL4.0 emotional scores (average of 6 points, 95% confidence interval [CI] = 0.3–11.7) and Sickness scores (average of −5.3 points, 95% CI = −10.6 to 0.0). Stronger significant improvements in PedsQL4.0 emotional scores (average of 8.1 points, 95% CI =1.8–14.4) and Sickness scores (average of −8.2 points, 95% CI = −14.2 to −2.2) were observed among children aged ≥ 8 years who survived beyond 20 weeks.
Patient/Parent Satisfaction
Satisfaction with PediQUEST reports was assessed in 41 of 44 families (29 children and 24 parents) remaining in the intervention group at the fourth administration of the instrument. Overall, 52% of children and 71% of parents found reports easy to understand, 52% of children (28% “quite a bit/very much”) and 75% of parents (54% “quite a bit/very much”) felt that the reports helped them talk to their doctors, and 75% of parents reported that reports often or almost always helped them understand their child’s feelings.
Confidentiality was not reported as an issue, and 92% of parents were positive about continuing to use the system.
Provider Satisfaction
Analysis of satisfaction for the 21 providers (64%) who completed the satisfaction component of the survey showed that most felt that the survey included relevant symptom (67%) and quality-of-life information (83%). Overall, 50% found reports useful when speaking with patients, 56% reported that use of reports did not increase total consult time, 61% and 22% reported that reports provided new information on psychosocial issues and physical symptoms, respectively, and 78% felt that reports were consistent with information they obtained during their clinical encounter with the patient.
Providers agreed that the reports contributed at least sometimes to their decision to initiate psychosocial (56%), pain (34%), social work (33%), or palliative care (29%) consults and to discuss goals with families (36%), and 12% agreed that reports changed their views about treatment goals. In total, 72% agreed that reports were at least somewhat helpful (50% “quite a bit/very helpful”) and 43% felt that e-mail alerts were helpful (14% “quite a bit/very helpful”).
The investigators concluded, “Although routine feedback of [patient-reported outcomes] did not significantly affect the child’s symptoms or [health-related quality of life], changes were in expected directions and improvements observed in emotional [health-related quality of life] through exploratory analyses were encouraging. Importantly, children, parents, and providers value [patient-reported outcomes] feedback.”
Joanne Wolfe, MD, MPH, of Dana-Farber Cancer Institute, is the corresponding author for the Journal of Clinical Oncology article.
The study was funded by a National Cancer Institute grant, a Charles H. Hood Foundation Child Health Research Award, and an American Cancer Society Pilot and Exploratory Project Award. The study authors reported no potential conflicts of interest.
The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.
