Literature DB >> 24813474

Application of best practice approaches for designing decision support tools: the preparatory education about clinical trials (PRE-ACT) study.

Linda Fleisher1, Dominique G Ruggieri2, Suzanne M Miller3, Sharon Manne4, Terrance Albrecht5, Joanne Buzaglo6, Michael A Collins3, Michael Katz7, Tyler G Kinzy8, Tasnuva Liu8, Cheri Manning9, Ellen Specker Charap3, Jennifer Millard3, Dawn M Miller8, David Poole3, Stephanie Raivitch3, Nancy Roach10, Eric A Ross3, Neal J Meropol8.   

Abstract

OBJECTIVE: This article describes the rigorous development process and initial feedback of the PRE-ACT (Preparatory Education About Clinical Trials) web-based- intervention designed to improve preparation for decision making in cancer clinical trials.
METHODS: The multi-step process included stakeholder input, formative research, user testing and feedback. Diverse teams (researchers, advocates and developers) participated including content refinement, identification of actors, and development of video scripts. Patient feedback was provided in the final production period and through a vanguard group (N=100) from the randomized trial.
RESULTS: Patients/advocates confirmed barriers to cancer clinical trial participation, including lack of awareness and knowledge, fear of side effects, logistical concerns, and mistrust. Patients indicated they liked the tool's user-friendly nature, the organized and comprehensive presentation of the subject matter, and the clarity of the videos.
CONCLUSION: The development process serves as an example of operationalizing best practice approaches and highlights the value of a multi-disciplinary team to develop a theory-based, sophisticated tool that patients found useful in their decision making process. Practice implications Best practice approaches can be addressed and are important to ensure evidence-based tools that are of value to patients and supports the usefulness of a process map in the development of e-health tools.
Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

Entities:  

Keywords:  Cancer; Clinical trials; Decision aids; Decision support tools

Mesh:

Year:  2014        PMID: 24813474      PMCID: PMC4171039          DOI: 10.1016/j.pec.2014.04.009

Source DB:  PubMed          Journal:  Patient Educ Couns        ISSN: 0738-3991


  45 in total

1.  Recruitment and retention of minority women in cancer screening, prevention, and treatment trials.

Authors:  D R Brown; M N Fouad; K Basen-Engquist; G Tortolero-Luna
Journal:  Ann Epidemiol       Date:  2000-11       Impact factor: 3.797

Review 2.  Computerised decision aids: a systematic review of their effectiveness in facilitating high-quality decision-making in various health-related contexts.

Authors:  Joanne Sheehan; Kerry A Sherman
Journal:  Patient Educ Couns       Date:  2011-12-18

3.  How to develop web-based decision support interventions for patients: a process map.

Authors:  Glyn Elwyn; Ilse Kreuwel; Marie Anne Durand; Stephanie Sivell; Natalie Joseph-Williams; Rhodri Evans; Adrian Edwards
Journal:  Patient Educ Couns       Date:  2010-06-02

4.  Understanding immigrant Chinese Americans' participation in cancer screening and clinical trials.

Authors:  Jennifer S Lin; Alyssa Finlay; Angela Tu; Francesca M Gany
Journal:  J Community Health       Date:  2005-12

Review 5.  Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors.

Authors:  Edward J Mills; Dugald Seely; Beth Rachlis; Lauren Griffith; Ping Wu; Kumanan Wilson; Peter Ellis; James R Wright
Journal:  Lancet Oncol       Date:  2006-02       Impact factor: 41.316

Review 6.  Decision aids for people facing health treatment or screening decisions.

Authors:  Dawn Stacey; Carol L Bennett; Michael J Barry; Nananda F Col; Karen B Eden; Margaret Holmes-Rovner; Hilary Llewellyn-Thomas; Anne Lyddiatt; France Légaré; Richard Thomson
Journal:  Cochrane Database Syst Rev       Date:  2011-10-05

7.  Cancer patients' decision making and trial-entry preferences: the effects of "framing" information about short-term toxicity and long-term survival.

Authors:  H A Llewellyn-Thomas; M J McGreal; E C Thiel
Journal:  Med Decis Making       Date:  1995 Jan-Mar       Impact factor: 2.583

Review 8.  Are cancer-related decision aids effective? A systematic review and meta-analysis.

Authors:  Mary Ann O'Brien; Timothy J Whelan; Miguel Villasis-Keever; Amiram Gafni; Cathy Charles; Robin Roberts; Susan Schiff; Wenjie Cai
Journal:  J Clin Oncol       Date:  2009-01-05       Impact factor: 44.544

9.  Informing breast cancer patients about clinical trials: a randomized clinical trial of an educational booklet.

Authors:  P M Ellis; P N Butow; M H N Tattersall
Journal:  Ann Oncol       Date:  2002-09       Impact factor: 32.976

10.  Increasing readiness to decide and strengthening behavioral intentions: evaluating the impact of a web-based patient decision aid for breast cancer treatment options (BresDex: www.bresdex.com).

Authors:  Stephanie Sivell; Adrian Edwards; Antony S R Manstead; Malcolm W R Reed; Lisa Caldon; Karen Collins; Alison Clements; Glyn Elwyn
Journal:  Patient Educ Couns       Date:  2012-04-26
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  15 in total

1.  Development and utilization of complementary communication channels for treatment decision making and survivorship issues among cancer patients: The CIS Research Consortium Experience.

Authors:  Linda Fleisher; Kuang Yi Wen; Suzanne M Miller; Michael Diefenbach; Annette L Stanton; Mary Ropka; Marion Morra; Peter C Raich
Journal:  Internet Interv       Date:  2015-11-01

2.  Development and preliminary testing of PROGRESS: a Web-based education program for prostate cancer survivors transitioning from active treatment.

Authors:  Suzanne M Miller; Shawna V Hudson; Siu-Kuen Azor Hui; Michael A Diefenbach; Linda Fleisher; Stephanie Raivitch; Tanisha Belton; Gem Roy; Anuli Njoku; John Scarpato; Rosalia Viterbo; Mark Buyyounouski; Crystal Denlinger; Curtis Miyamoto; Adam Reese; Jayson Baman
Journal:  J Cancer Surviv       Date:  2015-02-20       Impact factor: 4.442

3.  A stakeholder-driven approach to improve the informed consent process for palliative chemotherapy.

Authors:  Andrea C Enzinger; Jennifer K Wind; Elizabeth Frank; Nadine J McCleary; Laura Porter; Heather Cushing; Caroline Abbott; Christine Cronin; Peter C Enzinger; Neal J Meropol; Deborah Schrag
Journal:  Patient Educ Couns       Date:  2017-03-22

4.  Financial Burden of Cancer Clinical Trial Participation and the Impact of a Cancer Care Equity Program.

Authors:  Ryan D Nipp; Hang Lee; Elizabeth Powell; Nicole E Birrer; Emily Poles; Daniel Finkelstein; Karen Winkfield; Sanja Percac-Lima; Bruce Chabner; Beverly Moy
Journal:  Oncologist       Date:  2016-03-14

5.  Development of an Internet Intervention to Address Behaviors Associated with Skin Cancer Risk among Young Adults.

Authors:  Carolyn Heckman; Susan Darlow; Teja Munshi; Carolyn Caruso; Lee Ritterband; Stephanie Raivitch; Linda Fleisher; Sharon Manne
Journal:  Internet Interv       Date:  2015-05-06

Review 6.  Is 'informed consent' an 'understood consent' in hematopoietic cell transplantation?

Authors:  A D'Souza; M Pasquini; R Spellecy
Journal:  Bone Marrow Transplant       Date:  2014-09-22       Impact factor: 5.483

7.  Financial Concerns About Participation in Clinical Trials Among Patients With Cancer.

Authors:  Yu-Ning Wong; Mark D Schluchter; Terrance L Albrecht; Al Bowen Benson; Joanne Buzaglo; Michael Collins; Anne Lederman Flamm; Linda Fleisher; Michael Katz; Tyler G Kinzy; Tasnuva M Liu; Sharon Manne; Seunghee Margevicius; Dawn M Miller; Suzanne M Miller; David Poole; Stephanie Raivitch; Nancy Roach; Eric Ross; Neal J Meropol
Journal:  J Clin Oncol       Date:  2015-12-23       Impact factor: 44.544

8.  Randomized Trial of a Web-Based Intervention to Address Barriers to Clinical Trials.

Authors:  Neal J Meropol; Yu-Ning Wong; Terrance Albrecht; Sharon Manne; Suzanne M Miller; Anne Lederman Flamm; Al Bowen Benson; Joanne Buzaglo; Michael Collins; Brian Egleston; Linda Fleisher; Michael Katz; Tyler G Kinzy; Tasnuva M Liu; Seunghee Margevicius; Dawn M Miller; David Poole; Nancy Roach; Eric Ross; Mark D Schluchter
Journal:  J Clin Oncol       Date:  2015-12-23       Impact factor: 44.544

9.  Development of a Plain Language Decision Support Tool for Cancer Clinical Trials: Blending Health Literacy, Academic Research, and Minority Patient Perspectives.

Authors:  Aisha T Langford; Sarah T Hawley; Sue Stableford; Jamie L Studts; Margaret M Byrne
Journal:  J Cancer Educ       Date:  2020-06       Impact factor: 1.771

10.  A Bridging Opportunities Work-frame to develop mobile applications for clinical decision making.

Authors:  Tibor van Rooij; Serena Rix; James B Moore; Sharon Marsh
Journal:  Future Sci OA       Date:  2015-11-01
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