Literature DB >> 30620401

Evaluating cancer patient-reported outcome measures: Readability and implications for clinical use.

Janet K Papadakos1,2, Rebecca C Charow1, Christine J Papadakos1,2, Lesley J Moody3, Meredith E Giuliani1,4,5.   

Abstract

BACKGROUND: The benefits of patient-reported outcome measures (PROMs) are well known; however, their readability has come into question because multiple PROMs have been found to be incomprehensible to patients. This is a critical safety and equity consideration because PROMs are increasingly being integrated into routine clinical practice. A key strategy for promoting patient comprehension is the use of plain language. The aim of this study was to determine whether PROMs routinely used in the cancer setting meet plain-language best practices.
METHODS: To report the plain-language level of each PROM, readability (Fry Readability Graph, Simple Measure of Gobbledygook, Flesch Reading Ease, and FORCAST) and understandability assessments (Patient Education Materials Assessment Tool [PEMAT] for Printable Materials) were performed. PROMs at grade level 6 or lower and with PEMAT scores greater than 80% were considered to meet plain-language best practices. PROMs were divided into 4 domains (physical, emotional, social, and quality of life) and 17 dimensions (eg, pain was a dimension of the physical domain). A subanalysis was conducted to determine whether specific domains and dimensions were more likely to adhere to plain-language best practices.
RESULTS: More than half of the 45 PROMs evaluated (n = 33 [73%]) had a grade level higher than 6. Understandability scores ranged from 29% to 100%. The majority of the PROMs that did not meet plain-language best practices were within the physical and emotional domains and focused on the patient's symptom experience.
CONCLUSIONS: This evaluation shows that more than half of the most commonly used cancer PROMs do not meet plain-language best practices. Practice implications include the necessity for plain-language assessment during the PROM validation process, the consideration of plain language in PROM selection, and plain-language review and editing of low-scoring PROMs.
© 2019 American Cancer Society.

Entities:  

Keywords:  access; and evaluation; cancer care facilities; comprehension; health care quality; health literacy; health services accessibility; health status; hospital oncology service; patient outcome assessment; patient-reported outcome measures; surveys and questionnaires

Year:  2019        PMID: 30620401     DOI: 10.1002/cncr.31928

Source DB:  PubMed          Journal:  Cancer        ISSN: 0008-543X            Impact factor:   6.860


  11 in total

1.  Measuring female breast cancer survivors' concerns about late effects of treatment: initial development of the Concerns about Late Effects in Oncology Questionnaire (CLEO).

Authors:  Georgina Henry; Phyllis Butow; Ilona Juraskova; Rebekah Laidsaar-Powell; Joanne Shaw
Journal:  Support Care Cancer       Date:  2022-01-13       Impact factor: 3.603

2.  Ethnography and user-centered design to inform context-driven implementation.

Authors:  Emily R Haines; M Alexis Kirk; Lauren Lux; Andrew B Smitherman; Byron J Powell; Alex Dopp; Angela M Stover; Sarah A Birken
Journal:  Transl Behav Med       Date:  2022-01-18       Impact factor: 3.626

3.  Electronic Patient-Reported Outcome Measures in Radiation Oncology: Initial Experience After Workflow Implementation.

Authors:  Franziska Hauth; Verena Bizu; Rehan App; Heinrich Lautenbacher; Alina Tenev; Michael Bitzer; Nisar Peter Malek; Daniel Zips; Cihan Gani
Journal:  JMIR Mhealth Uhealth       Date:  2019-07-24       Impact factor: 4.773

4.  Evaluation of the scope, quality, and health literacy demand of Internet-based anal cancer information.

Authors:  Rebecca Charow; Michelle Snow; Sameera Fathima; Meredith E Giuliani; Kate McEwan; Jordana Winegust; Janet Papadakos
Journal:  J Med Libr Assoc       Date:  2019-10-01

Review 5.  Including the patient voice in the development and implementation of patient-reported outcomes in cancer clinical trials.

Authors:  Bonnie Addario; Jan Geissler; Marcia K Horn; Linda U Krebs; Deborah Maskens; Kathy Oliver; Ananda Plate; Erin Schwartz; Nicole Willmarth
Journal:  Health Expect       Date:  2019-11-13       Impact factor: 3.377

6.  A Prospective Outcomes Pilot Evaluation of Inspire Now: A Program for People with Lung Cancer.

Authors:  Ellen Conte; Mark Legacy; Athanasios Psihogios; Anne Pitman; Andrea Redway; Jill Hamer-Wilson; Dugald Seely
Journal:  Integr Cancer Ther       Date:  2020 Jan-Dec       Impact factor: 3.279

7.  Harmonizing evidence-based practice, implementation context, and implementation strategies with user-centered design: a case example in young adult cancer care.

Authors:  Emily R Haines; Alex Dopp; Aaron R Lyon; Holly O Witteman; Miriam Bender; Gratianne Vaisson; Danielle Hitch; Sarah Birken
Journal:  Implement Sci Commun       Date:  2021-04-26

8.  Integrated Palliative Outcome Scale for People with Dementia: easy language adaption and translation.

Authors:  Frank Spichiger; Anita Keller Senn; Thomas Volken; Philip Larkin; Andrea Koppitz
Journal:  J Patient Rep Outcomes       Date:  2022-02-15

9.  Readability of Patient Education Materials From High-Impact Medical Journals: A 20-Year Analysis.

Authors:  Michael K Rooney; Gaia Santiago; Subha Perni; David P Horowitz; Anne R McCall; Andrew J Einstein; Reshma Jagsi; Daniel W Golden
Journal:  J Patient Exp       Date:  2021-03-03

10.  Mastication, swallowing, and salivary flow in patients with head and neck cancer: objective tests versus patient-reported outcomes.

Authors:  Jorine A Vermaire; Cornelis P J Raaijmakers; Irma M Verdonck-de Leeuw; Femke Jansen; C René Leemans; Chris H J Terhaard; Caroline M Speksnijder
Journal:  Support Care Cancer       Date:  2021-06-25       Impact factor: 3.603

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