Literature DB >> 27294435

The patient-reported outcome content of international ovarian cancer randomised controlled trial protocols.

Rebecca Mercieca-Bebber1,2, Michael Friedlander3,4, Peey-Sei Kok3,4, Melanie Calvert5, Derek Kyte5, Martin Stockler3, Madeleine T King6,7,4.   

Abstract

PURPOSE: Patient-reported outcomes (PROs) provide the patient's perspective of the impact of treatment. Evidence suggests that PRO content of randomised controlled trials (RCTs) protocols is generally sub-optimal. This study aimed to describe and evaluate the PRO-specific content of ovarian cancer RCT protocols.
METHODS: Published, phase III, ovarian cancer RCTs with PRO endpoints were identified following a systematic search of Medline and Cochrane databases (Jan 2000 to Feb 2016). Corresponding RCT protocols were downloaded (if published) or obtained by contacting authors. Two investigators independently assessed adherence of PRO-specific content of included protocols to a checklist of 58 recommended PRO protocol items currently being developed by the International Society for Quality of Life Research. Discrepancies were resolved with a third investigator.
RESULTS: Of 41 eligible trials identified, 26 protocols were assessed (developed 1995-2010). We were unable to obtain the remaining 15 protocols. Protocols addressed a mean of 28 % PRO checklist items (range 8-66 %). Fifteen (58 % of assessed protocols) provided a rationale for PRO assessment, 8 (31 %) described a PRO objective, 24 (92 %) included a PRO assessment schedule, but only 6 (23 %) justified timing of PRO assessments. Twelve protocols (46 %) provided staff data collection instructions, 4 (15 %) included plans for monitoring PRO compliance, and 16 (62 %) included a PRO analysis plan.
CONCLUSIONS: On average, protocols addressed less than one-third of PRO protocol checklist items. In some cases, key guidance regarding PRO administration was lacking, which may lead to inconsistent and sub-optimal PRO methodology. Efforts are needed to improve PRO protocol content in cancer trials.

Entities:  

Keywords:  Clinical trials as topic; Guideline adherence; Ovarian cancer; Patient-reported outcomes; Protocol checklist; Quality of life

Mesh:

Year:  2016        PMID: 27294435     DOI: 10.1007/s11136-016-1339-x

Source DB:  PubMed          Journal:  Qual Life Res        ISSN: 0962-9343            Impact factor:   4.147


  20 in total

1.  Patient-reported outcome alerts: ethical and logistical considerations in clinical trials.

Authors:  Derek Kyte; Heather Draper; Melanie Calvert
Journal:  JAMA       Date:  2013-09-25       Impact factor: 56.272

2.  Putting patients at the heart of health-care research.

Authors:  Melanie Calvert; Derek Kyte; Maria von Hildebrand; Madeleine King; David Moher
Journal:  Lancet       Date:  2015-03-21       Impact factor: 79.321

3.  SPIRIT 2013 explanation and elaboration: guidance for protocols of clinical trials.

Authors:  An-Wen Chan; Jennifer M Tetzlaff; Peter C Gøtzsche; Douglas G Altman; Howard Mann; Jesse A Berlin; Kay Dickersin; Asbjørn Hróbjartsson; Kenneth F Schulz; Wendy R Parulekar; Karmela Krleza-Jeric; Andreas Laupacis; David Moher
Journal:  BMJ       Date:  2013-01-08

4.  International Society for Quality of Life Research commentary on the draft European Medicines Agency reflection paper on the use of patient-reported outcome (PRO) measures in oncology studies.

Authors:  Derek Kyte; Bryce B Reeve; Fabio Efficace; Kirstie Haywood; Rebecca Mercieca-Bebber; Madeleine T King; Josephine M Norquist; William R Lenderking; Claire Snyder; Lena Ring; Galina Velikova; Melanie Calvert
Journal:  Qual Life Res       Date:  2015-08-15       Impact factor: 4.147

5.  Reducing waste from incomplete or unusable reports of biomedical research.

Authors:  Paul Glasziou; Douglas G Altman; Patrick Bossuyt; Isabelle Boutron; Mike Clarke; Steven Julious; Susan Michie; David Moher; Elizabeth Wager
Journal:  Lancet       Date:  2014-01-08       Impact factor: 79.321

6.  SPIRIT 2013 statement: defining standard protocol items for clinical trials.

Authors:  An-Wen Chan; Jennifer M Tetzlaff; Douglas G Altman; Andreas Laupacis; Peter C Gøtzsche; Karmela Krleža-Jerić; Asbjørn Hróbjartsson; Howard Mann; Kay Dickersin; Jesse A Berlin; Caroline J Doré; Wendy R Parulekar; William S M Summerskill; Trish Groves; Kenneth F Schulz; Harold C Sox; Frank W Rockhold; Drummond Rennie; David Moher
Journal:  Ann Intern Med       Date:  2013-02-05       Impact factor: 25.391

7.  Inconsistencies in quality of life data collection in clinical trials: a potential source of bias? Interviews with research nurses and trialists.

Authors:  Derek Kyte; Jonathan Ives; Heather Draper; Thomas Keeley; Melanie Calvert
Journal:  PLoS One       Date:  2013-10-04       Impact factor: 3.240

8.  Patient-reported outcome (PRO) assessment in clinical trials: a systematic review of guidance for trial protocol writers.

Authors:  Melanie Calvert; Derek Kyte; Helen Duffy; Adrian Gheorghe; Rebecca Mercieca-Bebber; Jonathan Ives; Heather Draper; Michael Brundage; Jane Blazeby; Madeleine King
Journal:  PLoS One       Date:  2014-10-15       Impact factor: 3.240

9.  Management of Patient-Reported Outcome (PRO) Alerts in Clinical Trials: A Cross Sectional Survey.

Authors:  Derek Kyte; Jonathan Ives; Heather Draper; Melanie Calvert
Journal:  PLoS One       Date:  2016-01-19       Impact factor: 3.240

Review 10.  Design, implementation and reporting strategies to reduce the instance and impact of missing patient-reported outcome (PRO) data: a systematic review.

Authors:  Rebecca Mercieca-Bebber; Michael J Palmer; Michael Brundage; Melanie Calvert; Martin R Stockler; Madeleine T King
Journal:  BMJ Open       Date:  2016-06-15       Impact factor: 2.692

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  15 in total

1.  Introduction to the special section "Reducing research waste in (health-related) quality of life research".

Authors:  Claudia Rutherford; Jan R Boehnke
Journal:  Qual Life Res       Date:  2022-10       Impact factor: 3.440

2.  A Systematic Review of Health-Related Quality of Life Reporting in Ovarian Cancer Phase III Clinical Trials: Room to Improve.

Authors:  Michelle K Wilson; Michael L Friedlander; Florence Joly; Amit M Oza
Journal:  Oncologist       Date:  2017-11-08

Review 3.  SPIRIT-PRO Extension explanation and elaboration: guidelines for inclusion of patient-reported outcomes in protocols of clinical trials.

Authors:  Melanie Calvert; Madeleine King; Rebecca Mercieca-Bebber; Olalekan Aiyegbusi; Derek Kyte; Anita Slade; An-Wen Chan; E Basch; Jill Bell; Antonia Bennett; Vishal Bhatnagar; Jane Blazeby; Andrew Bottomley; Julia Brown; Michael Brundage; Lisa Campbell; Joseph C Cappelleri; Heather Draper; Amylou C Dueck; Carolyn Ells; Lori Frank; Robert M Golub; Ingolf Griebsch; Kirstie Haywood; Amanda Hunn; Bellinda King-Kallimanis; Laura Martin; Sandra Mitchell; Thomas Morel; Linda Nelson; Josephine Norquist; Daniel O'Connor; Michael Palmer; Donald Patrick; Gary Price; Antoine Regnault; Ameeta Retzer; Dennis Revicki; Jane Scott; Richard Stephens; Grace Turner; Antonia Valakas; Galina Velikova; Maria von Hildebrand; Anita Walker; Lari Wenzel
Journal:  BMJ Open       Date:  2021-06-30       Impact factor: 2.692

4.  'Give Us The Tools!': development of knowledge transfer tools to support the involvement of patient partners in the development of clinical trial protocols with patient-reported outcomes (PROs), in accordance with SPIRIT-PRO Extension.

Authors:  Samantha Cruz Rivera; Richard Stephens; Rebecca Mercieca-Bebber; Ameeta Retzer; Claudia Rutherford; Gary Price; Anita Slade; Olalekan Lee Aiyegbusi; Philip Edge; Lesley Roberts; Lesley Gosden; Rav Verdi; Roger Wilson; Melanie Calvert
Journal:  BMJ Open       Date:  2021-06-30       Impact factor: 2.692

5.  Evaluation of patient-reported outcome protocol content and reporting in UK cancer clinical trials: the EPiC study qualitative protocol.

Authors:  Ameeta Retzer; Thomas Keeley; Khaled Ahmed; Jo Armes; Julia M Brown; Lynn Calman; Chris Copland; Fabio Efficace; Anna Gavin; Adam Glaser; Diana M Greenfield; Anne Lanceley; Rachel M Taylor; Galina Velikova; Michael Brundage; Rebecca Mercieca-Bebber; Madeleine T King; Melanie Calvert; Derek Kyte
Journal:  BMJ Open       Date:  2018-02-03       Impact factor: 2.692

Review 6.  A practical guide to understanding, using and including patient reported outcomes in clinical trials in ovarian cancer.

Authors:  Michelle K Wilson; Rebecca Mercieca-Bebber; Michael Friedlander
Journal:  J Gynecol Oncol       Date:  2018-06-09       Impact factor: 4.401

Review 7.  The importance of patient-reported outcomes in clinical trials and strategies for future optimization.

Authors:  Rebecca Mercieca-Bebber; Madeleine T King; Melanie J Calvert; Martin R Stockler; Michael Friedlander
Journal:  Patient Relat Outcome Meas       Date:  2018-11-01

8.  Patient-Reported Outcomes in Clinical Trials Leading to Cancer Immunotherapy Drug Approvals From 2011 to 2018: A Systematic Review.

Authors:  Houssein Safa; Monica Tamil; Philippe E Spiess; Brandon Manley; Julio Pow-Sang; Scott M Gilbert; Firas Safa; Brian D Gonzalez; Laura B Oswald; Adele Semaan; Adi Diab; Jad Chahoud
Journal:  J Natl Cancer Inst       Date:  2021-05-04       Impact factor: 13.506

9.  The administration of patient-reported outcome questionnaires in cancer trials: Interviews with trial coordinators regarding their roles, experiences, challenges and training.

Authors:  Rebecca Mercieca-Bebber; Melanie Calvert; Derek Kyte; Martin Stockler; Madeleine T King
Journal:  Contemp Clin Trials Commun       Date:  2017-11-23

10.  A systematic evaluation of compliance and reporting of patient-reported outcome endpoints in ovarian cancer randomised controlled trials: implications for generalisability and clinical practice.

Authors:  Rebecca Mercieca-Bebber; Michael Friedlander; Melanie Calvert; Martin Stockler; Derek Kyte; Peey-Sei Kok; Madeleine T King
Journal:  J Patient Rep Outcomes       Date:  2017-10-04
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