Patient-Defined Treatment Success: Perspectives of Patients With Advanced-Stage Lung Cancer

Islam, K. M.; Deviany, Poppy E.; Anggondowati, Trisari; Ryan, June; Fetrick, Ann; Bagenda, Danstan; Copur, Mehmet Sitki; Tolentino, Addison; Vaziri, Irfan; McKean, Heidi; Dunder, Steven; Gray, Jhanelle E.; Huang, Chao; Ganti, Apar Kishor

doi:10.1200/jop.18.00734

Cited by 6 publications

(11 citation statements)

References 17 publications

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“…Among those who initially consider success exclusively according to survival metrics, 80% subsequently modify the definition to include quality of life. 41 These earlier studies and our current observations suggest that the patient perspective may change over the course of treatment. Early on, patients may be less familiar with the nature and potential severity of toxicities and may assign greater weight to disease stability and treatment response.…”

Section: Discussionsupporting

confidence: 54%

“…Almost one‐half of individuals with lung cancer also change their definition of treatment success. Among those who initially consider success exclusively according to survival metrics, 80% subsequently modify the definition to include quality of life . These earlier studies and our current observations suggest that the patient perspective may change over the course of treatment.…”

Section: Discussionmentioning

confidence: 59%

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Patient familiarity with, understanding of, and preferences for clinical trial endpoints and terminology

Itzstein

Railey

Smith

et al. 2020

Cancer

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Background Although there is increased attention to designing and explaining clinical trials in ways that are clinically meaningful for patients, there is limited information on patient preferences, understanding, and perceptions of this content. Methods Maximum difference scaling (MaxDiff) methodology was used to develop a survey for assessing patients' understanding of 19 clinical terms and perceived importance of 9 endpoint surrogate phrases used in clinical trials and consent forms. The survey was administered electronically to individuals with metastatic breast cancer affiliated with the Metastatic Breast Cancer Alliance. Analyses were performed using Bayesian P values with statistical software. Results Among 503 respondents, 77% had a college degree, 70% were diagnosed with metastatic disease ≥2 years before survey completion, and 77% had received ≥2 lines of systemic therapy. Less than 35% of respondents reported understanding “fairly well” the terms symptomatic progression, duration of disease control, time to treatment cessation, and endpoints. Income level and time since onset of metastatic disease correlated with comprehension. Patients who had received ≥6 lines of therapy perceived that time until serious side effects (P < .001) and time on therapy (P < .001) were more important compared with those who had received only 1 line of therapy. Positively phrased parameters were associated with increased perceived importance. Conclusions Even among educated, heavily pretreated patients, many commonly used clinical research terms are poorly understood. Comprehension and the perceived importance of trial endpoints vary over the course of disease. These observations may inform the design, discussion, and reporting of clinical trials.

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Section: Discussionsupporting

confidence: 54%

Section: Discussionmentioning

confidence: 59%

Patient familiarity with, understanding of, and preferences for clinical trial endpoints and terminology

Itzstein

Railey

Smith

et al. 2020

Cancer

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“…For example, in the US, Islam et al interviewed patients with advanced non-small cell lung cancer to ask how they define treatment success before and after chemotherapy. Patients’ definitions of treatment success changed after treatment, often to include maintaining “quality of life” and daily activities [ 21 ]. In a study of patients receiving autologous stem cell transplantation, Schulmeister noted measuring “quality of life” is important information on treatment experiences and providing treatment for adverse effects [ 44 ].…”

Section: Resultsmentioning

confidence: 99%

“…These nuances may be missed because studies commonly focus on the perspective of one stakeholder group. For example, studies have exclusively focused on the perceptions of oncology nurses [ 16 , 17 ], oncologists [ 18 , 19 , 20 ], or adults with cancer [ 21 , 22 ], and only rarely examine more than one stakeholder group at a time [ 13 , 14 ]. Stakeholder groups, such as healthcare administrators, are often excluded from studies in this area even though the use of PROMs and PRO-PMs in a clinic would necessitate their buy-in.…”

Section: Introductionmentioning

confidence: 99%

Stakeholder Perceptions of Key Aspects of High-Quality Cancer Care to Assess with Patient Reported Outcome Measures: A Systematic Review

Stover

Kurtzman

Bissram

et al. 2021

Cancers

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Performance measurement is the process of collecting, analyzing, and reporting standardized measures of clinical performance that can be compared across practices to evaluate how well care was provided. We conducted a systematic review to identify stakeholder perceptions of key symptoms and health domains to test as patient-reported performance measures in oncology. Stakeholders included cancer patients, caregivers, clinicians, and healthcare administrators. Standard review methodology was used, consistent with PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses). MEDLINE/PubMed, EMBASE, and the Cochrane Library were searched to identify relevant studies through August 2020. Four coders independently reviewed entries and conflicts were resolved by a fifth coder. Efficacy and effectiveness studies, and studies focused exclusively on patient experiences of care (e.g., communication skills of providers) were excluded. Searches generated 1813 articles and 1779 were coded as not relevant, leaving 34 international articles for extraction. Patients, caregivers, clinicians, and healthcare administrators prioritize psychosocial care (e.g., distress) and symptom management for patient-reported performance measures. Patients and caregivers also perceive that maintaining physical function and daily activities are critical. Clinicians and administrators perceive control of specific symptoms to be critical (gastrointestinal symptoms, pain, poor sleep). Results were used to inform testing at six US cancer centers.

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“…8 The patient's expectation of treatment success may change during the course of treatment, such as not only living longer but also improvement of quality of life and achievement of personal goals. 9 Equally important is the incorporation of a patient's prognostic awareness of their disease. There is often a mismatch between a patient's treatment expectations and their oncologist's expectations.…”

Section: Introductionmentioning

confidence: 99%

A Qualitative Study of Interactions With Oncologists Among Patients With Advanced Lung Cancer

Achkar

Roy

Manley

et al. 2022

Preprint

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Introduction: To support the care of lung cancer patients, oncologists have needed to stay current on treatment advancements and build relationships with a new group of survivors in an era where lung cancer survivorship has been re-defined. The objectives of the study were to: 1) understand the perspectives of advanced lung cancer patients whose tumors have oncogenic alterations about their care experiences with their oncologist(s) and 2) describe the perceptions of advanced lung cancer patients about seeking second opinions and navigating care decisions. Methods: In this qualitative study, patients with advanced lung cancer (n=25) on targeted therapies were interviewed to discuss their ongoing experience with their oncologists. We used deductive and inductive qualitative approaches in the coding of the data. We organized the data using the self-determination framework.Results: Patients described both positive and negative aspects of their care as related to autonomy, provider competency, and connectedness. Patients sought second opinions for three primary reasons: expertise, authoritative advice, and access to clinical trial opportunities. When there is disagreement in the treatment plan between the primary oncologist and the specialist, there can be confusion and tension, and patients have to make difficult choices about their path forward.Conclusions: Patients value interactions that support their autonomy, demonstrate the competency of their providers, and foster connectedness. To ensure that patients receive quality and goal-concordant care, developing decision aids and education materials that help patients negotiate recommendations from two providers is an area that deserves further attention.

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Patient-Defined Treatment Success: Perspectives of Patients With Advanced-Stage Lung Cancer

Cited by 6 publications

References 17 publications

Patient familiarity with, understanding of, and preferences for clinical trial endpoints and terminology

Patient familiarity with, understanding of, and preferences for clinical trial endpoints and terminology

Stakeholder Perceptions of Key Aspects of High-Quality Cancer Care to Assess with Patient Reported Outcome Measures: A Systematic Review

A Qualitative Study of Interactions With Oncologists Among Patients With Advanced Lung Cancer

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