Implementation of daily patient‐reported outcome measurements to support children with cancer

Abstract

Background Several stakeholders, including patients and health care providers, suggest symptom self‐reporting measurements for a more patient‐directed cancer control approach. However, services tailored to measure daily reporting and implementing it in clinical care are lacking. This study aimed to evaluate the feasibility and value of daily patient‐reported outcome measures (PROMs) by children receiving chemotherapy for cancer. Methods Health status was recorded daily with a web‐based child‐friendly patient portal (ePROtect). Following aspects of feasibility and usability were assessed: (a) the completion rate and time, (b) user feedback on usability and satisfaction, and (c) the performed interventions if moderate to severe symptom deterioration was noted. Results Twelve children (median age: 7.2 years) were included. A total number of 891 daily reports were collected during the study period; the median percentage of ePROtect completion days was 85.3% (interquartile range [IQR] 64.2–100.0) and 55.9% (IQR 51.9–76.9) for inpatient and outpatient stay, respectively. Mean time to complete the questionnaire was 47.6 seconds. Severe symptoms were reported in 14.7% of measurement time points, which led to prompt health care interventions in 57 cases, including extension of supportive care (n = 37) and pre‐emptive inpatient admissions (n = 5). Over 80% of the patients (10/12) and their proxies (16/18) provided feedback with high rating for satisfaction (>90%) and usefulness (>80%) of ePROtect. Conclusion Our study shows that daily symptom monitoring is feasible for all children with newly diagnosed cancer aged 5–18 years. Monitoring offers the opportunity to identify symptoms early and trigger appropriate clinical action.

Use of Daily Patient-Reported Outcome Measurements in Pediatric Cancer Care

“…27,28 When introducing ePROtect, we carefully identified the use of valid and reliable disease-specific PROMs with high relevance for children's health-related quality of life: appetite loss, fatigue, nausea, pain, physical functioning, and sleep disturbance. 12 Notably, current practice in childhood cancer treatment includes the sequential administration of intravenous chemotherapy during a period of a few days spent in the hospital and most of the time including a recovery period, which is best spent at home in family care. Therefore, our system has to meet the demand for anytime and anywhere, particularly when the patient is sent home to recover.…”

“…Although some PROMs offer promise in routine clinical care of pediatric patients with cancer, [9][10][11] no study to our knowledge has evaluated daily PROMs on a longterm basis or differentiated between surveys administered in the hospital or at home. Our group 12 recently developed a unique, web-based approach for daily child self-reporting and parent-based proxy reporting (ePROtect) and demonstrated its feasibility for implementation in clinical care. We have now prospectively enrolled a larger number of patients in an effort to better understand the utility of patients' health status measurement.…”

Strategies to Mitigate Chemotherapy and Radiation Toxicities That Affect Eating

“…Since cancer is more prevalent in older adults, the problem of increased toxicity associated with poor eating in sarcopenic, frail, older patients with co-morbidities and polypharmacy can be challenging [74,77,118,[128][129][130][131][132]. Use of the Geriatric Nutrition Risk Index (GNRI) or Mini-Nutritional Assessment (MNA) tools [133][134][135] and patient reported outcomes (PRO) such as the PG-SGA [69][70][71][72][73][136][137][138][139][140] could help to predict risk and trigger more timely interventions to address eating behaviors, malnutrition, cachexia, and sarcopenia in this particularly vulnerable, high-risk population. A recent study showed a proactive team approach which included an oncologist, NP, social worker, PT/OT, pharmacist, and nutritionist resulted in the significant reduction of grade 3 or higher toxicities in older adults [141].…”

“…Since patient eating behaviors are generally superior as an outpatient compared to inpatient, electronic patient-reported outcomes (ePRO) [69][70][71][72][73]130,[137][138][139][140][166][167][168] may help to generate new data and metrics concerning differences between predominantly outpatient versus inpatient chemotherapy delivery and admissions for chemotherapy and amelioration of serious adverse events (SAEs). For example, this approach could ask for (number of hospital days/year) to generate a new ePRO metric of quality and cost of cancer care.…”

Challenges and Pitfalls for Implementing Digital Health Solutions in Clinical Studies in Europe

“…The current era of rapid technological progress and its necessity in the medical field drives the development of innovative eHealth technology. Application areas in medical care span from personalized care ( 1 ), oncology ( 2 – 4 ) and palliative care ( 5 , 6 ) to mental health ( 7 – 9 ). Many national public health institutions have already acknowledged the urgency to adapt to a global imminent digitalization trend ( 10 , 11 ).…”