Evidence map›Paper›PMID 32012089›Full record

ArticleJMIR research protocols2020

Development of a Core Set of Patient-Reported Outcomes for Population-Based Cancer Survivorship Research: Protocol for an Australian Consensus Study.

Imogen Ramsey, Nadia Corsini, Amanda D Hutchinson, Julie Marker, Marion Eckert

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PubMed Full text at PMC Publisher
In one paragraph

Article in JMIR research protocols, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
–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

5 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Article
  4. Article
  5. 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

5 authors.

Imogen Ramsey *Rosemary Bryant AO Research Centre, School of Nursing and Midwifery and UniSA Cancer Research Institute, University of South Australia, Adelaide, Australia.ORCID https://orcid.org/0000-0002-8757-1572
Nadia CorsiniRosemary Bryant AO Research Centre, School of Nursing and Midwifery and UniSA Cancer Research Institute, University of South Australia, Adelaide, Australia.ORCID https://orcid.org/0000-0002-7614-5041
Amanda D HutchinsonSchool of Psychology, Social Work and Social Policy, University of South Australia, Adelaide, Australia.ORCID https://orcid.org/0000-0003-3983-8321
Julie MarkerCancer Voices South Australia, Adelaide, Australia.ORCID https://orcid.org/0000-0002-3887-8674
Marion EckertRosemary Bryant AO Research Centre, School of Nursing and Midwifery and UniSA Cancer Research Institute, University of South Australia, Adelaide, Australia.ORCID https://orcid.org/0000-0002-7232-6208

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundCore outcome sets seek to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. The problems arising from a lack of outcome standardization in population-based cancer survivorship research indicate the need for agreement on a core set of patient-reported outcomes (PROs) to enhance data quality, consistency, and comparability.

objectiveThis study aims to identify a core set of PROs, representing the most important issues impacting on cancer survivors' long-term health, functioning and quality of life, to inform population-based research on cancer survivorship.

methodsIn Phase I, a list of all potentially important outcomes will be generated through focus group discussions with cancer survivors and a review of measures for assessing quality of life in cancer survivorship. The consolidated list will be advanced to Phase II, where a stakeholder consensus process will be conducted with national experts in cancer survivorship to refine and prioritize the outcomes into a core outcome set. The process will consist of a two-round Delphi survey and a consensus meeting. Cancer survivors, oncology health care professionals, and potential end users of the core outcome set with expertise in cancer survivorship research or policy will be invited to participate. In Phase III, recommended measures for assessment of the core outcome set will be selected with advice from experts on the assessment, analysis, and interpretation of PROs.

resultsAs of April 2019, data collection for Phase I is complete and data analysis is underway. These data will inform the list of outcomes to be advanced into Phase II. Recruitment for Phase II will commence in June 2019, and it is anticipated that it will take 6 months to complete the three-step consensus process and identify a provisional core outcome set. The study results are expected to be published in early 2020.

conclusionsExpert consensus-driven recommendations on outcome measurement will facilitate the inclusion of survivorship outcomes considered important by cancer survivors and health professionals in future research. Adoption of the core outcome set will enable comparison and synthesis of evidence across studies and enhance the quality of PRO data collected in cancer survivorship research, particularly when applied to address macro-level questions. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/14544.

Indexed as

cancer survivorshipconsensuscore outcome setDelphi studypatient-reported outcomesquality of life

Identifiers

PMID32012089
PMCPMC7013638

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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.