Patient and clinician stakeholder perspectives on a patient portal questionnaire eliciting illness and treatment understanding and core health-related values Journal Article


Authors: Rosa, W. E.; Gilliland, J.; McDarby, M.; Nelson, J. E.; Desai, A. V.; Epstein, A. S.
Article Title: Patient and clinician stakeholder perspectives on a patient portal questionnaire eliciting illness and treatment understanding and core health-related values
Abstract: Introduction: Person-centered communication is foundational to cancer care. In pilot research, a questionnaire eliciting patients’ illness and treatment understanding (ITU) and core health-related values (HRV) through the electronic patient portal demonstrated feasibility, acceptability, and efficacy. The aim of this study was to elicit stakeholder feedback to refine the design of the portal-based intervention, remain end-user centered, and optimize future system-wide integration. Methods: Between April and June 2023, we purposively sampled patients and clinicians from a previous pilot study to participate in a 20–30-minute semistructured interview about their opinions of and experiences with the portal questionnaire on ITU and HRV. An interdisciplinary coding team used a two-phase rapid analysis to identify themes, subthemes, and illustrative participant quotations. Results: Fourteen patients (mean age = 68 years) and 12 clinicians participated (total n = 26). Colorectal cancer was the commonest malignancy (64%) among patients. Clinicians were mostly physicians (50%), nurse practitioners (33%), and registered nurses (17%), with two-thirds having >15 years of experience in their specialty. Analysis generated four themes: (1) clinical utility of questionnaire, (2) barriers to questionnaire implementation, (3) considerations and strategies for modifying the questionnaire, and (4) considerations and strategies for questionnaire implementation. Themes captured key information about incorporating this questionnaire into clinical practice. Conclusion: Patients with cancer and their clinicians found a portal-based ITU and HRV questionnaire clinically useful to improve multiple aspects of person-centered communication. Participant recommendations about questionnaire timing and sharing of questionnaire responses with the clinical team will inform future questionnaire implementation and scaling in clinical settings. © William E. Rosa et al., 2023.
Keywords: communication; technology; values; cancer; prognosis; prognostic understanding; person-centered care; patient portal
Journal Title: Palliative Medicine Reports
Volume: 4
Issue: 1
ISSN: 2689-2820
Publisher: Mary Ann Liebert, Inc  
Date Published: 2023-01-01
Start Page: 316
End Page: 325
Language: English
DOI: 10.1089/pmr.2023.0057
PROVIDER: scopus
PMCID: PMC10712361
PUBMED: 38089435
DOI/URL:
Notes: Article -- MSK Cancer Center Support Grant (P30 CA008748) acknowledged in PDF -- MSK corresponding author is William Rosa -- Source: Scopus
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MSK Authors
  1. Andrew Saul Epstein
    157 Epstein
  2. Judith Eve Nelson
    89 Nelson
  3. William   Rosa
    201 Rosa
  4. Meghan Mcdarby
    29 Mcdarby