Perceptions of Response Burden Associated with Completion of Patient-Reported Outcome Assessments in Oncology

Atkinson, Thomas M.; Schwartz, Carolyn E.; Goldstein, Leah; Garcia, Iliana; Storfer, Daniel F.; Li, Yuelin; Zhang, Jie; Bochner, Bernard H.; Rapkin, Bruce D.

doi:10.1016/j.jval.2018.07.875

Cited by 50 publications

(49 citation statements)

References 39 publications

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“…To the majority of participating women, the time to complete the questionnaires (mean 10 minutes) was acceptable, while patient burden was considered a potential barrier in advance. 20 Furthermore, most women were willing to participate at all timepoints in case of future implementation. However, as one-third of the women considered the timepoint just after birth (T3) too burdensome, the added value of timepoint T3 should be evaluated concisely.…”

Section: Discussionmentioning

confidence: 99%

A feasibility study of implementing a patient‐centered outcome set for pregnancy and childbirth

Depla

Ernst-Smelt

Poels

et al. 2020

Health Science Reports

106

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Background and Aims Patient‐reported outcome and experience measures (PROM and PREM) can facilitate shared decision making and hold potential to improve healthcare quality. However, their adoption in perinatal care is still limited. The International Consortium for Health Outcomes Measurement (ICHOM) developed a Pregnancy and Childbirth (PCB) outcome set, including PROM and PREM questionnaires. We studied the feasibility to use these PROMs/PREMs in Dutch perinatal care, addressing both women's and professionals' perspective. Methods Patients and professionals in primary and hospital care participated. Women under care at one of five timepoints for PROM/PREM collection of the PCB set (2 during pregnancy, 3 postpartum) were e‐mailed a questionnaire and discussed their answers with their obstetric professional the next regular visit. Compliance was recorded. After discussing the PROMs/PREMs, usability and experience were assessed with separate surveys amongst women and professionals. Results Of 26 women approached, 21 completed and discussed their PROM/PREM questionnaire. Mean questionnaire completion rate was 97%. Average reported time completing the questionnaires was 10 minutes; most women (90%) stated this was acceptable. Women preferred completing questionnaires digitally and discuss their answers with an obstetric professional rather than other care professionals, also 6 months postpartum. Over half of women agreed PROMs/PREMs supported shared decision making (58%), ability to raise issues (60%), and patient‐clinician relationship (52%). Six professionals participated: two obstetricians, two clinical midwives, and two community midwives. Most professionals experienced sufficient time to discuss the responses, except at 6 months postpartum. They knew what items to discuss but did not always feel responsible to act upon them. Professionals agreed PROMs/PREMs supported symptom detection and personalized care. Conclusions Patients and obstetric professionals consider the PCB set a feasible instrument for PROM/PREM assessment, with good compliance, acceptability and usability. Important determinants of successful implementation are a well‐equipped ICT‐tool, agreements regarding professionals' responsibilities and how outcomes are discussed or acted upon.

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Section: Discussionmentioning

confidence: 99%

A feasibility study of implementing a patient‐centered outcome set for pregnancy and childbirth

Depla

Ernst-Smelt

Poels

et al. 2020

Health Science Reports

106

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“…Patient burden is often raised as a concern regarding the inclusion of PRO instruments in oncology trials, however, in a study conducted by Atkinson et al patients who completed a lengthy battery of PRO assessments reported minimal response burden. 16 In fact, in that study 32% of participants indicated that they would have liked to report additional information. While the current data cannot directly address response burden of increased reporting, patient preference for episodic or daily reporting suggests that patients do not expect to be overwhelmed by such demands.…”

Section: Discussionmentioning

confidence: 88%

“…15 While preliminary evidence suggests that a relatively lengthy battery of PROs was not perceived by patients as significantly burdensome, it is unclear if patients would be willing to complete PRO measures with more frequency. 16 A first step toward clarifying optimal frequency of PRO reporting in oncology is to examine patient preference in reporting. To that end, the current study aimed to gain a better understanding of oncology patients' reporting preferences.…”

Section: Introductionmentioning

confidence: 99%

Oncology patient preferences in reporting on symptoms

Peechatka¹,

Ly²,

Dallabrida³

2020

Int J Clin Trials

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Background: Collecting patient reported outcomes (PROs) in oncology clinical trials is becoming increasingly important. However, there is limited consensus on the most appropriate frequency of PRO administration in oncology trials. The aim of this preliminary study is to examine the perspective of participants with a cancer diagnosis on the importance of completing PROs and to identify at what frequency participants prefer to report on their cancer-related symptoms.Methods: 166 participants with a self-reported cancer diagnosis completed a multiple-choice online survey regarding perceptions of symptom importance and reporting preferences.Results: When asked about the benefit of reporting oncology-related symptoms daily, 44% of participants indicated there would be “very much” a benefit, 29% indicated there would be “quite a bit” of benefit, and 17% indicated there would be “somewhat” of a benefit. When asked about how frequently they would prefer to report symptoms, 41% of participants preferred “as they occur,” 36% preferred “once a day,” 18% preferred “once a week,” 4% preferred “twice a day,” and 1% preferred “every 4 hours”.Conclusions: PROs in oncology clinical research are most often collected at weekly, monthly, or longer intervals; however, meaningful fluctuations in cancer-related symptoms can occur more frequently. While concerns regarding patient burden are often raised to support infrequent reporting, these data suggest that participants would like to report symptoms with greater frequency, as episodic and daily reporting options were most popular. Based on these data, more frequent PRO data capture is not only feasible but perceived as important by individuals with cancer.

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“…In addition, it will help to anticipate patients’ needs—according to the Institute of Medicine, patient-centered healthcare should be an integral part of the healthcare system [ 45 ]. Despite the potential response burden of completing such a measure in oncology trials, patients with cancer may not perceive the experience as overly burdensome [ 46 ].…”

Section: Discussionmentioning

confidence: 99%

Development and content validation of the Satisfaction and Experience Questionnaire for Granulocyte Colony-Stimulating Factor (SEQ-G-CSF)

Yücel

Skalicky

Eseyin

et al. 2021

J Patient Rep Outcomes

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Background Several options for granulocyte colony-stimulating factor (G-CSF) prophylaxis of chemotherapy-induced febrile neutropenia are available to patients worldwide. We have developed a novel patient-reported outcome measure, the Satisfaction and Experience Questionnaire for G-CSF (SEQ-G-CSF), to help understand patients’ perspectives of and satisfaction with different G-CSF options. Results Three oncology nurses and 40 adult oncology patients in the United States were enrolled and participated in focus group discussions to develop and refine the SEQ-G-CSF. Nurses had ≥ 5 years of experience treating oncology patients and were currently involved in the management of oncology patients receiving G-CSF prophylaxis. The patients had breast cancer, lung cancer, non-Hodgkin lymphoma, or prostate cancer (10 patients in each group) and were receiving G-CSF prophylaxis via injection or the on-body injector (OBI) device. The preliminary SEQ-G-CSF contained an item relevance questionnaire and three SEQ modules (sociodemographic, medical history, and G-CSF–related healthcare characteristics questionnaires). Twenty-one patients (53% of total sample size) discussed their experience and satisfaction with G-CSF. Their most common experiences were G-CSF effectiveness, convenience and benefits of the OBI, and relationships with healthcare providers. Side effects and having to undergo additional treatment were also reported. Satisfaction with aspects of G-CSF included the OBI and effectiveness of G-CSF treatment; dissatisfaction included inconvenience (having to return to the clinic the next day and administration of the injection) and the insurance approval process. The SEQ-G-CSF was finalized after three rounds of cognitive interviews and includes five domains related to general satisfaction (one item), treatment burden (four items), travel burden (two items), time burden (four items), and treatment compliance (two items). Conclusions The SEQ-G-CSF is a novel instrument that quantifies a patient’s experience and satisfaction with different G-CSF options using 13 easy-to-understand items. This study provides evidence for the content validity of SEQ-G-CSF. Although further psychometric testing is required, the SEQ-G-CSF may be a useful addition to clinical trials, observational studies, and clinical practice.

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Perceptions of Response Burden Associated with Completion of Patient-Reported Outcome Assessments in Oncology

Cited by 50 publications

References 39 publications

A feasibility study of implementing a patient‐centered outcome set for pregnancy and childbirth

A feasibility study of implementing a patient‐centered outcome set for pregnancy and childbirth

Oncology patient preferences in reporting on symptoms

Development and content validation of the Satisfaction and Experience Questionnaire for Granulocyte Colony-Stimulating Factor (SEQ-G-CSF)

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