Use of a Cancer Registry to Evaluate Patient-Reported Outcomes of Immune Checkpoint Inhibitors

Jim, Heather; Eisel, Sarah L.; Hoogland, Aasha I.; Shaw, Sandra; King, Jennifer C.; Dicker, Adam P.

doi:10.3390/cancers13010103

Cited by 10 publications

(6 citation statements)

References 35 publications

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“… 22 , 23 Much like the broader PanCAN mission to promote genetic testing of patients through the KYT program, some cancer registries, such as the International Pediatric Adrenocortical Tumor Registry, the Angiosarcoma Project, and the Metastatic Breast Cancer Project, allow patients to share biospecimens (germline and somatic) for genetic testing, along with clinical information. 20 , 21 , 22 Analyses of clinical information allow research insights, such as identifying ‘’exceptional responders’’, 21 , 22 exploring patterns of care delivery and outcomes, 19 , 20 , 24 and evaluating specific needs, such as those related to patient education resources. 23 These registries are often supported by foundations and professional organizations, rely heavily on direct‐to‐patient outreach through social media, and promote a patient‐partnered approach to research.…”

Section: Discussionmentioning

confidence: 99%

Leveraging patient‐reported outcomes (PROs) in patients with pancreatic cancer: The Pancreatic Cancer Action Network (PanCAN) online patient registry experience

et al. 2021

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Background: The Pancreatic Cancer Action Network (PanCAN) Patient Registry is an online, pancreatic cancer-specific, global registry enabling patients to selfreport sociodemographics, disease/management characteristics, and patientreported outcomes (PROs). We sought to describe the creation, user experience, and research potential of the PanCAN Registry. Methods: We obtained data to describe (1) the creation of the Registry (questionnaire development, marketing efforts, and regulatory considerations); (2) the user experience (user characteristics and interactions with the registry following inception); and (3) the research potential of the registry (comparing PROs and treatment patterns by age [±65 years] and treatment site [community or academic] for users with de novo metastatic disease). Results:The Registry was conceived as part of PanCAN's strategic plan for a personalized therapy initiative. PanCAN staff and disease expert consultants developed questionnaires hosted on an electronic PRO platform. Users had the option to include their data in research efforts, and the Registry platform received institutional review board approval. From 7/2015 to 12/2020, 2187 patients visited the registry and 1697 (77.6%) completed at least one survey (median age = 64 years [range: 24-90], 47.9% women, 88.7% White, 34.0% metastatic disease). Among patients with metastatic disease (N = 567), 46.0% were ≥65 years old and 67.5% received treatment at community sites. Patients ≥65 years reported feeling less hopeful about the treatment plan (12.4% vs. 24.3%, p = 0.003), and patients treated at community sites reported more frequent treatment breaks of >2 weeks (58.2% vs. 28.1%, p < 0.001).

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Section: Discussionmentioning

confidence: 99%

Leveraging patient‐reported outcomes (PROs) in patients with pancreatic cancer: The Pancreatic Cancer Action Network (PanCAN) online patient registry experience

et al. 2021

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show abstract

“…22,23 Much like the broader PanCAN mission to promote genetic testing of patients through the KYT program, some cancer registries, such as the International Pediatric Adrenocortical Tumor Registry, the Angiosarcoma Project, and the Metastatic Breast Cancer Project, allow patients to share biospecimens (germline and somatic) for genetic testing, along with clinical information. [20][21][22] Analyses of clinical information allow research insights, such as identifying ''exceptional responders'', 21,22 exploring patterns of care delivery and outcomes, 19,20,24 and evaluating specific needs, such as those related to patient education resources. 23 These registries The answers to questions posed in the Basic and Health assessment surveys trigger the appearance of additional surveys on the dashboard if they are relevant for the participant (white boxes).…”

Section: Discussionmentioning

confidence: 99%

Leveraging patient-reported outcomes (PROs) in patients with pancreatic cancer: The Pancreatic Cancer Action Network (PanCAN) online patient registry experience.

Gupta

Khalid

Ladnier

et al. 2020

JCO

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154 Background: By allowing patients (pts) to self-report key issues related to their quality of life and symptoms, PROs have important clinical and research implications. The PanCAN Registry, which began collecting data in July 2015, is a pancreatic cancer-specific global online registry enabling pts to report sociodemographics, disease/management characteristics, and PROs via online surveys. We sought to describe pt experiences with the PanCAN Registry. Methods: We assessed individual characteristics and interactions with the registry (visits, survey completions, and longitudinal use) from 7/2015-10/2019 for pts who provided permission to use their data. The registry allows pts to complete surveys about their experience (e.g. basics of pancreatic cancer, general information), symptoms (e.g. fatigue, pain), diagnostics (e.g. labs, scans), and drug therapy (e.g. type, frequency). We validated PROs using the PanCAN Know Your Tumor database. For a subset of pts (those with de novo metastatic disease), we compared PROs, treatment patterns, and side effects by age (+/- 65 years) and treatment site (community or academic). Results: Of 2,836 pts who visited the registry, 2,076 (73%) completed at least one survey (median age = 64 [range: 18-97], 48% women, 92% white, 32% metastatic disease). Pts most commonly completed the basics (73%), general information (39%), and drug therapy (37%) surveys. Overall, 10% answered surveys longitudinally. We observed 95% concordance between PROs and the PanCAN Know Your Tumor database. Among the 667 pts with de novo metastatic disease, 34% were older (age 65+) and 50% were treated at academic sites. Younger pts were more hopeful about the treatment plan (strongly agree: 24% v 12%, p < .01) and reported less constipation (moderate/severe: 33% v 48%, p < .01) compared with older pts. Pts treated at academic sites reported less frequent treatment breaks of > 2 weeks (28% v 58%, p = 0.01) and more frequent severe cytopenias (27% v 12%, p = 0.01) compared with those treated at community sites. Conclusions: With > 2,800 pts visiting the PanCAN registry and > 70% completing a survey, these findings demonstrate the feasibility, robustness, and research potential of an online PRO registry. We observed important differences by age and treatment site regarding pts’ outlook, symptoms, treatment patterns, and side effects. With increasing focus on PROs, registries like this can facilitate standardized PRO reporting and monitoring, while also providing a valuable research database.

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“…The study sample was selected from all consented participants in the Lung Cancer Registry 33,34 (http://www.lungcancerregistry.org) based upon availability of complete data for smoking history and responses to questions about internalized stigma, perceived stigma, and constrained disclosure. The data cutoff was July 15, 2022.…”

Section: Methodsmentioning

confidence: 99%

“…The study sample was selected from all consented participants in the Lung Cancer Registry 33,34 (www. lungc ancer regis try.…”

Section: Platform and Questionnairementioning

confidence: 99%

Real‐world analysis of the relationships between smoking, lung cancer stigma, and emotional functioning

Chansky,

Rigney,

King

2024

Cancer Medicine

Self Cite

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IntroductionPeople diagnosed with lung cancer experience high rates of distress, which can be compounded by the stigma of the disease. This study assessed a real‐world population to understand patient‐reported emotional functioning, types of stigma experienced, and relationship with smoking history.MethodsQuestionnaires using validated survey tools assessing demographics, smoking history, stigma, and quality of life (EORTC QLQ‐C30 Emotional Functioning Scale) were analyzed from 539 global participants in the Lung Cancer Registry between November 2019 and July 2022. The associations between smoking history and self‐reported internalized and perceived stigma and constrained disclosure of lung cancer diagnosis, as well as the potential impact of stigma on emotional functioning, were examined using multivariable logistic regression models.ResultsAmong the broad geographic mix of study participants, all types of lung cancer stigma were associated with decreased emotional functioning due to a combination of factors including depression, anxiety, stress, and irritability. Participants who reported a history of current or former smoking experienced higher levels of internalized stigma and perceived stigma. Constrained disclosure about a diagnosis was common, associated with decreased emotional functioning, and not related to a history of smoking. Smoking status itself was not associated with reduced emotional functioning, implicating the role of stigma in distress.ConclusionsIn this study, all types of lung cancer stigma were associated with clinically important decreases in emotional functioning. This impact was not dependent on smoking history. Internalized and perceived stigma were associated with the presence of a smoking history. These findings have implications for proper psychosocial care of people diagnosed with lung cancer.

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Use of a Cancer Registry to Evaluate Patient-Reported Outcomes of Immune Checkpoint Inhibitors

Cited by 10 publications

References 35 publications

Leveraging patient‐reported outcomes (PROs) in patients with pancreatic cancer: The Pancreatic Cancer Action Network (PanCAN) online patient registry experience

Leveraging patient‐reported outcomes (PROs) in patients with pancreatic cancer: The Pancreatic Cancer Action Network (PanCAN) online patient registry experience

Leveraging patient-reported outcomes (PROs) in patients with pancreatic cancer: The Pancreatic Cancer Action Network (PanCAN) online patient registry experience.

Real‐world analysis of the relationships between smoking, lung cancer stigma, and emotional functioning

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