Evidence map›Paper›PMID 32128368›Full record

ArticleJournal of patient experience2020

Who Needs What? Perceptions of Patients and Caregivers in Oncology Phase 1 Trials.

Victoria Rezash, Janice Reed, Barbara Gedeon, Eric Parsons, Sandra Siedlecki, Bradley Daniels, Dale R Shepard

Abstract read
In one paragraph

Article in Journal of patient experience, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.

0numbers the graph read from it
0cells of the map it votes in
13citing 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

13 citing papers in PubMed.

  1. Trial
  2. Article
  3. Considering the caregiver in early-phase clinical trials: a review of trial protocols and consent forms.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026
    Review
  4. Review
  5. Stakeholder perspectives on the role of caregivers in cancer clinical trial decision-making: results of a qualitative study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025
    Article
  6. Article
  7. Article
  8. Reflections on the opportunities and challenges of applying experience-based co-design (EBCD) to phase 1 clinical trials in oncology.Health expectations : an international journal of public participation in health care and health policy · 2024
    Article
  9. Review
  10. Article
  11. Article
  12. Article
  13. 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

7 authors.

Victoria RezashTaussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA.
Janice ReedTaussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA.
Barbara GedeonTaussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA.
Eric ParsonsTaussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA.
Sandra SiedleckiOffice of Nursing Research and Innovation, Cleveland Clinic, Cleveland, OH, USA.
Bradley DanielsTaussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA.
Dale R ShepardTaussig Cancer Institute, Cleveland Clinic, Cleveland, OH, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe study design and nature of oncology phase 1 clinical trials create a uniquely vulnerable patient population yet little research has been conducted to identify the added burden these trials create for both cancer patients and their caregiver(s).

objectiveExamining the perceptions and needs of patients and their caregivers participating in phase 1 oncology clinical trials, the investigators tested the hypothesis that the caregiver will exhibit a higher level of burden and/or distress than the patient.

methodA mixed-methods exploratory process utilizing patient and caregiver interviews and quality-of-life questionnaires was used to assess the psychosocial burdens associated with oncology clinical trial participation. A qualitative and quantitative analysis of the responses were 8 performed.

resultBoth patients and caregivers reported similar themes identifying the burdens and benefits related to phase 1 clinical trial participation. However, the caregivers' expressed burden exceeded that of the patients' validating the study's hypothesis.

conclusionThe need for ongoing additional support services for not only the patient but also the caregiver was identified.

Indexed as

cancercaregivingclinician–patient relationshiponcologypatient perspectives/narrativespatient satisfactionphase 1 clinical trialservice excellence

Identifiers

PMID32128368
PMCPMC7036678

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.