Evidence map›Paper›PMID 39227513›Full record

ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2024

Evaluating cancer patient-reported experience measures against health literacy best practices.

Eleni Giannopoulos, Lesley Moody, Rebecca MacKinnon, Bhajan Gill, Meredith E Giuliani, Janet K Papadakos

Abstract read
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In one paragraph

Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

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

  1. Pooled it
  2. Mapping methods and tools for measuring patient experience in oncology settings: a scoping review.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026
    Article
  3. 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

6 authors.

Eleni GiannopoulosCancer Health Literacy Research Centre, Princess Margaret Cancer Centre, 585 University Avenue, ELLICSR PMB B-130, Toronto, ON, M5G 2N2, Canada.ORCID http://orcid.org/0009-0001-0011-7896
Lesley MoodyAmbulatory Care, Princess Margaret Cancer Centre, Toronto, Canada.ORCID http://orcid.org/0000-0002-1282-7342
Rebecca MacKinnonCancer Health Literacy Research Centre, Princess Margaret Cancer Centre, 585 University Avenue, ELLICSR PMB B-130, Toronto, ON, M5G 2N2, Canada.
Bhajan GillCancer Health Literacy Research Centre, Princess Margaret Cancer Centre, 585 University Avenue, ELLICSR PMB B-130, Toronto, ON, M5G 2N2, Canada.
Meredith E GiulianiCancer Health Literacy Research Centre, Princess Margaret Cancer Centre, 585 University Avenue, ELLICSR PMB B-130, Toronto, ON, M5G 2N2, Canada.
Janet K PapadakosCancer Health Literacy Research Centre, Princess Margaret Cancer Centre, 585 University Avenue, ELLICSR PMB B-130, Toronto, ON, M5G 2N2, Canada. Janet.papadakos@uhn.ca.ORCID http://orcid.org/0000-0001-6320-4156

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposePositive patient experiences can lead to better adherence to cancer treatment and greater patient health outcomes. The primary aim of this descriptive study was to determine whether commonly used cancer PREMs have been developed according to health literacy best practices. The secondary and third aims were to examine the development of PREMs and to assess their comprehensiveness against principles of patient-centered care.

methodsTo assess adherence to best practice literacy principles regarding readability and understandability of commonly used cancer PREMs, three validated readability calculators and a validated instrument were utilized. To better understand how PREMs were developed, data about survey items, patient involvement, and expert consultation were collected. Finally, the Picker framework was used to evaluate the comprehensiveness of PREMs against principles of patient-centered care.

resultsThirty-five PREMs studies met inclusion criteria for the study. The mean reading grade level of cancer PREMs was 9.7 (SD = 0.75, range = 8.2-11.2) with best practice recommendation being a grade 6 reading grade level. Twenty-eight PREMs were rated on understandability, with a mean score of 74% (SD = 10.6, range = 46-93%, with optimal score of greater than 80%). The mean number of items across PREMs was 49 (SD = 31, range = 13-136). Recommendations for the number of items to include in a questionnaire is 25-30 items. Most PREMs (n = 33, 94.3%) asked ≥ 1 double-barreled question. All PREMs addressed ≥ 2 patient-centered care principles.

conclusionCancer PREMs included in this study did not meet evidence-informed thresholds for readability and understandability. As such, it is possible that there may be gaps in how we understand the care experiences of low health literacy populations. Future development of PREMs should engage patients with low health literacy to ensure their perspectives are accurately captured and that PREMs are designed to meet the needs of all patients.

Indexed as

Health LiteracyNeoplasmsPatient-Centered CareComprehensionHumansPatient Reported Outcome MeasuresPractice Guidelines as TopicSurveys and QuestionnairesCancerHealth literacyPatient-centered carePatient experiencePatient-reported experience measuresSurvey development

Identifiers

What OpenQuestion holds

Textmetadata
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.