A clear call to action exists to include the patient’s voice in oncology
care.1,2 The translation of this imperative is less
clear when it comes to implementing patient-reported outcomes (PRO) into
clinical care specifically for children with cancer. Many validated PRO
measurement tools for both the pediatric patient’s and their caregivers,
or proxy users, are available. However, in comparison to adult oncology,
there are fewer clinical trials among children with cancer that
meaningfully include PRO.
Translating clinical research into practical patient care is even more
problematic. The decision whether to focus on only the patients’ voices
versus the input of their caregivers (serving as proxies) remain a
delicate issue. Mack et al found that when using the PROMIS measurement
tool, caregivers tended to overestimate their child’s symptoms and
underestimate their mobility.3 While the patient
perspective is key, there are times or situations when the caregiver
could or should serve as their voice through proxy reporting, as has
been accomplished through the Ped-PRO-CTCAE.4
In this issue of Pediatric Blood & Cancer , Meryk et al. from the
Medical University of Innsbruck, Austria describe their efforts to
implement and act clinically on a daily patient-reported outcome
measurement tool among children with cancer. The research team created a
web-based child-friendly patient portal (ePROtect) to track daily
patient reported outcomes. Among the twelve patients enrolled on their
study they obtained 891 daily reports with a median completion rate of
85.3% for inpatient stays and 55.9% for outpatient stays. Importantly,
the time to complete these measurements was less than one minute. Most
participants, including both the patient and their proxy, provided a
positive rating for usability measures including “ease of use and
satisfaction,” “system informational arrangement,” and
“usefulness.” The team responded to any reports of severe symptoms
which occurred in 14.7% of time points. Interventions that were
performed included extension of supportive care management and admission
to the hospital. Meryk, et al were able to successfully implement a
web-based PRO tool and enact clinical interventions among children
across all aspects of the clinical healthcare continuum from scheduled
inpatient admissions to outpatient stays to admission for unexpected
outcomes.
The platform to collect the PRO is critically important. Mobile health
(mHealth) technology tools appear to be a promising method in which to
capture PRO. As seen in the Meryk study, mobile platforms are a feasible
and acceptable manner in which to approach the collection of PRO by
children with cancer. In a longitudinal study, Vettese et al had high
utilization and positive usability for the Supportive care
Prioritization, Assessment, and Recommendation for Kids (SPARK) web
application to improve symptom control among children with cancer or
pediatric hematopoietic stem cell transplant
recipients.5 Others have utilized text messaging
features where the responses from patients and family members are
emailed to the clinical team.6
Despite these successes, there will continue to be barriers to
translating PRO into clinical care in the world of pediatric oncology.
These barriers tend to be organizational and less frequently due to user
or intervention issues.7 As most clinicians would
attest, available time and insufficient staff remain important factors
to help navigate the gathering and converting of PRO into clinical
care.8
In summary, the challenge to include patient-reported outcomes into
clinical care remains complex. Incorporation of the patient’s voice will
bring depth to our understanding of the journey our patients endure.
This will require a balance of information gathering and evaluation. It
is important that the tracking of PRO occur without overloading the
patient or their caregiver with tasks. Also, it is imperative that we
not providing too much information to the clinician who then may not
focus on the symptom most concerning to the patient. Infrastructure
changes and resource allocation will be required to merge our clinical
duties with PRO measurements in order to truly achieve the Institute for
Healthcare Improvement’s goal of understanding “What matters to you?”.
This study by Meryk et al is an important step in the right direction of
utilizing mHealth to capture, evaluate, and initiate clinical
interventions to improve symptom management for children with cancer
through their cancer experience.
References:
- Riedl D, Rothmund M, Darlington AS, Sodergren S, Crazzolara R, de
Rojas T; EORTC Quality of Life Group. Rare use of patient-reported
outcomes in childhood cancer clinical trials - a systematic review of
clinical trial registries. Eur J Cancer. 2021 Jul;152:90-99. doi:
10.1016/j.ejca.2021.04.023. Epub 2021 Jun 2. PMID: 34090144.
- Leahy AB, Steineck A. Patient-Reported Outcomes in Pediatric Oncology:
The Patient Voice as a Gold Standard. JAMA Pediatr. 2020 Nov
1;174(11):e202868. doi: 10.1001/jamapediatrics.2020.2868. Epub 2020
Nov 2. PMID: 32832974; PMCID: PMC8103813.
- Mack JW, McFatrich M, Withycombe JS, Maurer SH, Jacobs SS, Lin L,
Lucas NR, Baker JN, Mann CM, Sung L, Tomlinson D, Hinds PS, Reeve BB.
Agreement Between Child Self-report and Caregiver-Proxy Report for
Symptoms and Functioning of Children Undergoing Cancer Treatment. JAMA
Pediatr. 2020 Nov 1;174(11):e202861. doi:
10.1001/jamapediatrics.2020.2861. Epub 2020 Nov 2. PMID: 32832975;
PMCID: PMC7445628.
- Reeve BB, McFatrich M, Lin L, Lucas NR, Mack JW, Jacobs SS, Withycombe
JS, Baker JN, Freyer DR, Hinds PS. Validation of the caregiver
Pediatric Patient-Reported Outcomes Version of the Common Terminology
Criteria for Adverse Events measure. Cancer. 2021 May
1;127(9):1483-1494. doi: 10.1002/cncr.33389. Epub 2020 Dec 17. PMID:
33332590.
- Vettese E, Cook S, Soman D, Kuczynski S, Spiegler B, Davis H, Duong N,
Schechter T, Dupuis LL, Sung L. Longitudinal evaluation of Supportive
care Prioritization, Assessment and Recommendations for Kids (SPARK),
a symptom screening and management application. BMC Cancer. 2019 May
16;19(1):458. doi: 10.1186/s12885-019-5662-9. PMID: 31096957; PMCID:
PMC6521508.
- Leahy AB, Schwartz LA, Li Y, Reeve BB, Bekelman JE, Aplenc R, Basch
EM. Electronic symptom monitoring in pediatric patients hospitalized
for chemotherapy. Cancer. 2021 Aug 15;127(16):2980-2989. doi:
10.1002/cncr.33617. Epub 2021 May 4. PMID: 33945640.
- Schepers SA, Sint Nicolaas SM, Haverman L, Wensing M, Schouten van
Meeteren AYN, Veening MA, Caron HN, Hoogerbrugge PM, Kaspers GJL,
Verhaak CM, Grootenhuis MA. Real-world implementation of electronic
patient-reported outcomes in outpatient pediatric cancer care.
Psychooncology. 2017 Jul;26(7):951-959. doi: 10.1002/pon.4242. Epub
2016 Sep 4. PMID: 27502744.
- Schepers SA, Haverman L, Zadeh S, Grootenhuis MA, Wiener L. Healthcare
Professionals’ Preferences and Perceived Barriers for Routine
Assessment of Patient-Reported Outcomes in Pediatric Oncology
Practice: Moving Toward International Processes of Change. Pediatr
Blood Cancer. 2016 Dec;63(12):2181-2188. doi: 10.1002/pbc.26135. Epub
2016 Aug 11. PMID: 27511830; PMCID: PMC6347376.
- The Power of Four Words: “What Matters to You?”. Institute for
Healthcare Improvement. Accessed August 23, 2021.
http://www.ihi.org/Topics/WhatMatters/Pages/default.aspx