Evidence map›Paper›PMID 20201115›Full record

ArticlePsycho-oncology2011

Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue?

Michelle van Ryn, Sara Sanders, Katherine Kahn, Courtney van Houtven, Joan M Griffin, Michelle Martin, Audie A Atienza, Sean Phelan, Deborah Finstad, Julia Rowland

Open access · bronzeAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Psycho-oncology, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 175 papers, 8 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
175citing papers in PubMed, 8 pooled it
51.1field-weighted citation impact, top 1% of its field
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

175 citing papers in PubMed, 8 syntheses or guidelines pooled it, 372 citations in OpenAlex.

  1. Pooled it
  2. Pooled it
  3. Health literacy in cancer caregivers: a systematic review.Journal of cancer survivorship : research and practice · 2021
    Pooled it
  4. Are cancer helplines effective in supporting caregivers? A systematic review.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2019
    Pooled it
  5. Pooled it
  6. Pooled it
  7. Cancer-Related Fatigue, Version 2.2015.Journal of the National Comprehensive Cancer Network : JNCCN · 2015
    Guideline
  8. Pooled it
  9. Trial
  10. Trial
  11. Trial
  12. Trial
  13. Trial
  14. Trial
  15. Trial
  16. Trial
  17. Trial
  18. A telephone outcall program to support caregivers of people diagnosed with cancer: utility, changes in levels of distress, and unmet needs.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2018
    Trial
  19. Trial
  20. Trial

115 more citing papers are in PubMed but not listed here.

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

10 authors at 8 institutions in 1 country.

Michelle van RynUniversity of Iowa, Iowa City, IA, USA. vanry001@umn.edu
Sara Sanders
Katherine Kahn
Courtney van Houtven
Joan M Griffin
Michelle Martin
Audie A Atienza
Sean Phelan
Deborah Finstad
Julia Rowland
University of Iowa · USUniversity of Minnesota Medical Center · USNational Cancer Institute · USNational Institutes of Health · USUniversity of Alabama at Birmingham · USUniversity of California, Los Angeles · USUniversity of Minnesota · USUniversity of North Carolina at Chapel Hill · US

Funding

PROPENSITY SCORES IN HIERARCHICAL MODELSU01CA093344 · NCI · DANA-FARBER CANCER INSTITUTE · PI AYANIAN, JOHN Z., FOUAD, MONA N. · 2001 to 2011
$19.5M
Lung/Colon Cancer Outcomes--Cancer Research NetworkU01CA093332 · NCI · DANA-FARBER CANCER INSTITUTE · PI WEEKS, JANE C. · 2001 to 2008
$7.4M
RAND-UCLA CanCORS PDCR ApplicationU01CA093348 · NCI · RAND CORPORATION · PI KAHN, KATHERINE LESLIE · 2001 to 2008
$7.3M
Cancer Care Outcomes Research &Surveillance ConsortiumU01CA093324 · NCI · HARVARD UNIVERSITY (MEDICAL SCHOOL) · PI AYANIAN, JOHN Z. · 2001 to 2008
$7.1M
RACIAL DISPARITIES IN END OF LIFE CARE--ACCESSU01CA093329 · NCI · UNIVERSITY OF ALABAMA AT BIRMINGHAM · PI FOUAD, MONA N. · 2001 to 2008
$6.6M
NC Colorectal Cancer Care Outcomes Research StudyU01CA093326 · NCI · UNIV OF NORTH CAROLINA CHAPEL HILL · PI SANDLER, ROBERT S. · 2001 to 2008
$4.3M
Lung Cancer Care Outcomes/Surveillance Consortium-IowaU01CA093339 · NCI · UNIVERSITY OF IOWA · PI WALLACE, ROBERT BRUCE · 2001 to 2008
$3.7M
NCI NIH HHS U01 CA093324NCI NIH HHS U01 CA093326NCI NIH HHS U01 CA093329NCI NIH HHS U01 CA093332NCI NIH HHS U01 CA093339NCI NIH HHS U01 CA093344NCI NIH HHS U01 CA093348NCI NIH HHS U01 CA93324NCI NIH HHS U01 CA93326NCI NIH HHS U01 CA93329NCI NIH HHS U01 CA93332NCI NIH HHS U01 CA93339NCI NIH HHS U01 CA93344NCI NIH HHS U01 CA93348
6 · The paper itself

Abstract

unlabelledA great deal of clinical cancer care is delivered in the home by informal caregivers (e.g. family, friends), who are often untrained. Caregivers' context varies widely, with many providing care despite low levels of resources and high levels of additional demands.

backgroundChanges in health care have shifted much cancer care to the home, with limited data to inform this transition. We studied the characteristics, care tasks, and needs of informal caregivers of cancer patients.

methodsCaregivers of seven geographically and institutionally defined cohorts of newly diagnosed colorectal and lung cancer patients completed self-administered questionnaires (n = 677). We combined this information with patient survey and chart abstraction data and focused on caregivers who reported providing, unpaid, at least 50% of the patient's informal cancer care.

resultsOver half of caregivers (55%) cared for a patient with metastatic disease, severe comorbidity, or undergoing current treatment. Besides assisting with activities of daily living, caregivers provided cancer-specific care such as watching for treatment side effects (68%), helping manage pain, nausea or fatigue (47%), administering medicine (34%), deciding whether to call a doctor (30%), deciding whether medicine was needed (29%), and changing bandages (19%). However, half of caregivers reported not getting training perceived as necessary. In addition, 49% of caregivers worked for pay, 21% reported poor or fair health, and 21% provided unpaid care for other individuals. One in four reported low confidence in the quality of the care they provided.

conclusionsMuch assistance for cancer patients is delivered in the home by informal caregivers, often without desired training, with a significant minority having limited resources and high additional demands. Future research should explore the potentially high yield of addressing caregiver needs in improving quality of cancer care and both survivors' and caregivers' outcomes.

Indexed as

Cost of IllnessActivities of Daily LivingAdultAgedCaregiversCohort StudiesCross-Sectional StudiesFamilyFemaleHome NursingHumansMaleMiddle AgedNeoplasmsSocial SupportStress, Psychological

Identifiers

PMID20201115
PMCPMC4479404
OpenAlexW2081943263

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

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.