Evidence map›Paper›PMID 34477302›Full record

ArticleCancer medicine2021

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

Arjun Gupta, Omar Khalid, Cassadie Moravek, Anica Lamkin, Lynn M Matrisian, Sudheer Doss, Crystal S Denlinger, Andrew L Coveler, Colin D Weekes, Eric J Roeland and 2 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Cancer medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

9 citing papers in PubMed.

  1. Observational
  2. Article
  3. Article
  4. Article
  5. Article
  6. Article
  7. Pancreatic Cancer Surgery: What Matters to Patients?Journal of clinical medicine · 2023
    Review
  8. Review
  9. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

12 authors.

Arjun GuptaUniversity of Minnesota, Minneapolis, Minnesota, USA.ORCID 0000-0003-0875-4731
Omar KhalidPancreatic Cancer Action Network, Manhattan Beach, California, USA.
Cassadie MoravekPancreatic Cancer Action Network, Manhattan Beach, California, USA.
Anica LamkinPancreatic Cancer Action Network, Manhattan Beach, California, USA.
Lynn M MatrisianPancreatic Cancer Action Network, Manhattan Beach, California, USA.
Sudheer DossPancreatic Cancer Action Network, Manhattan Beach, California, USA.
Crystal S DenlingerFox Chase Cancer Center, Philadelphia, Pennsylvania, USA.ORCID 0000-0002-5663-7751
Andrew L CovelerSeattle Cancer Care Alliance/University of Washington, Seattle, Washington, USA.
Colin D WeekesMassachusetts General Hospital and Harvard Medical School, Boston, Massachusetts, USA.
Eric J RoelandMassachusetts General Hospital and Harvard Medical School, Boston, Massachusetts, USA.
Andrew E HendifarSamuel Oschin Cancer Center, Cedars-Sinai Medical Center, Los Angeles, California, USA.ORCID 0000-0002-2079-9177
Ryan D NippMassachusetts General Hospital and Harvard Medical School, Boston, Massachusetts, USA.

Funding

Conquer Cancer/American Society of Clinical Oncology Young Investigator AwardPancreatic Cancer Action Network
6 · The paper itself

Abstract

backgroundThe Pancreatic Cancer Action Network (PanCAN) Patient Registry is an online, pancreatic cancer-specific, global registry enabling patients to self-report sociodemographics, disease/management characteristics, and patient-reported outcomes (PROs). We sought to describe the creation, user experience, and research potential of the PanCAN Registry.

methodsWe 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).

resultsThe 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).

conclusionsOur findings demonstrate the feasibility, usability, and research potential of an online PRO registry for patients with cancer. This description of the PanCAN Registry should inform future registry-building efforts to facilitate standardized PRO reporting and provide a valuable research database. CLINICAL TRIAL REGISTRATION NUMBER: Not applicable.

Indexed as

Patient Reported Outcome MeasuresRegistriesAdultAdvertisingAgedAged, 80 and overCancer Care FacilitiesFeasibility StudiesFemaleHumansMaleMiddle AgedPancreatic NeoplasmsPatient ParticipationPrecision MedicineResearchPanCANpancreatic cancerpatient-reported outcomesregistry

Identifiers

PMID34477302
PMCPMC8525124

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.