Evidence map›Paper›PMID 31399859›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2019

Cancer survivor perspectives on sharing patient-generated health data with central cancer registries.

T G Smith, M E Dunn, K Y Levin, S P Tsakraklides, S A Mitchell, L V van de Poll-Franse, K C Ward, C L Wiggins, X C Wu, M Hurlbert and 1 more

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
10citing 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

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

  1. Pooled it
  2. Trial
  3. Article
  4. Review
  5. Review
  6. Review
  7. Article
  8. Review
  9. Utilizing SEER Cancer Registries for Population-Based Cancer Survivor Epidemiologic Studies: A Feasibility Study.Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology · 2020
    Article
  10. Review
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

11 authors.

T G SmithBehavioral and Epidemiology Research Group, American Cancer Society, 250 Williams Street, Atlanta, GA, 30303, USA. tenbroeck.smith@cancer.org.ORCID http://orcid.org/0000-0002-1752-0577
M E DunnWestat, Rockville, MD, USA.
K Y LevinWestat, Rockville, MD, USA.
S P TsakraklidesWestat, Rockville, MD, USA.
S A MitchellNational Cancer Institute, Bethesda, MD, USA.
L V van de Poll-FranseDivision of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands.
K C WardEmory University, Atlanta, GA, USA.
C L WigginsNew Mexico Tumor Registry, Albuquerque, NM, USA.
X C WuLouisiana Tumor Registry/ School of Public Health Epidemiology Program, Louisiana State University Health Sciences Center, New Orleans, LA, USA.
M HurlbertMetastatic Breast Cancer Alliance, New York, NY, USA.
N K AaronsonDivision of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands.

Funding

American Cancer Society Intramural fundingMBC Alliance Intramural funding
6 · The paper itself

Abstract

purposeCentral cancer registries collect data and provide population-level statistics that can be tracked over time; yet registries may not capture the full range of clinically relevant outcomes. Patient-generated health data (PGHD) include health/treatment history, biometrics, and patient-reported outcomes (PROs). Collection of PGHD would broaden registry outcomes to better inform research, policy, and care. However, this is dependent on the willingness of patients to share such data. This study examines cancer survivors' perspectives about sharing PGHD with central cancer registries.

methodsThree U.S. central registries sampled colorectal, non-Hodgkin lymphoma, and metastatic breast cancer survivors 1-4 years after diagnosis, recruiting them via mail to participate in one of seven focus groups (n = 52). Group discussions were recorded, transcribed, and thematically analyzed.

resultsMost survivor-participants were unaware of the existence of registries. After having registries explained, all participants expressed their willingness to share PGHD with them if treated confidentially. Participants were willing to provide information on a variety of topics (e.g., medical history, medications, symptoms, financial difficulties, quality of life, biometrics, nutrition, exercise, and mental health), with a focus on long-term effects of cancer and its treatment. Participants' preferred mode for providing data varied. Participants were also interested in receiving information from registries.

conclusionsOur results suggest that registry-based collection of PGHD is acceptable to most cancer survivors and could facilitate registry-based efforts to collect PGHD/PROs. Central cancer registry-based collection of PGHD/PROs, especially on long-term effects, could enhance registry support of cancer control efforts including research and population health management.

Indexed as

Patient Reported Outcome MeasuresCancer SurvivorsData CollectionData ManagementDelivery of Health CareFemaleFocus GroupsHumansMaleMiddle AgedQuality of LifeRegistriesCancer survivorsFocus groupsPatient generated health dataPatient-reported outcome measuresQuality of lifeRegistries

Identifiers

PMID31399859

What OpenQuestion holds

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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.