Literature DB >> 33411044

A pilot study of population-based, patient-reported outcome collection in cancer survivors.

Veenoo Agarwal1, Nadia Corsini2,3, Marion C Eckert2,3, Greg Sharplin2,3, Imogen Ramsey2,3, Kate Gunn3, Michael K Fitzgerald4,5, Bogda Koczwara4,5.   

Abstract

AIM: To determine feasibility and acceptability of completing PROs questionnaires at completion and 1 year after curative cancer treatment.
METHODS: Patients assessed in a nurse-led end of treatment survivorship clinic, at a tertiary referral centre, recruited between October 2015 and July 2016 were mailed a survey at baseline and at 12-month follow-up. The survey included validated PRO questionnaires. A target response rate for feasibility, defined as the proportion of the eligible population approached that completed the survey, was set at 70%. Qualitative feedback regarding the survey was collected from participants.
RESULTS: Of the 47 eligible patients approached, 34 (72.4%) agreed to participate with 29 (61.9%) completing the survey at baseline, and 21 (44.7%) at follow-up. Respondents lost to follow-up at 12 months had clinically meaningful lower scores on all QLQ-C30 functioning scales and 8 out of 9 symptom scales/items. Qualitative feedback from survey respondents indicated the content was relevant and acceptable. Participants expressed willingness to complete a similar survey approximately once per year and a higher preference for completing the survey in hard copy compared with online.
CONCLUSIONS: Cancer survivors are willing to provide information on a range of PROs, but those with higher needs were the ones less likely to complete surveys. There is scope to improve the response rate and representativeness of the patient cohort captured. Future research should identify strategies to optimise recruitment when collecting PROs data from cancer survivors.

Entities:  

Keywords:  Cancer survivors; Quality of life

Mesh:

Year:  2021        PMID: 33411044     DOI: 10.1007/s00520-020-05910-2

Source DB:  PubMed          Journal:  Support Care Cancer        ISSN: 0941-4355            Impact factor:   3.603


  18 in total

1.  An international field study of the reliability and validity of a disease-specific questionnaire module (the QLQ-OV28) in assessing the quality of life of patients with ovarian cancer.

Authors:  E Greimel; A Bottomley; A Cull; A-C Waldenstrom; J Arraras; L Chauvenet; B Holzner; K Kuljanic; J Lebrec; S D'haese
Journal:  Eur J Cancer       Date:  2003-07       Impact factor: 9.162

2.  The European Organization for Research and Treatment of Cancer breast cancer-specific quality-of-life questionnaire module: first results from a three-country field study.

Authors:  M A Sprangers; M Groenvold; J I Arraras; J Franklin; A te Velde; M Muller; L Franzini; A Williams; H C de Haes; P Hopwood; A Cull; N K Aaronson
Journal:  J Clin Oncol       Date:  1996-10       Impact factor: 44.544

3.  The Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship registry: scope, rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts.

Authors:  Lonneke V van de Poll-Franse; Nicole Horevoorts; Mies van Eenbergen; Johan Denollet; Jan Anne Roukema; Neil K Aaronson; Ad Vingerhoets; Jan Willem Coebergh; Jolanda de Vries; Marie-Louise Essink-Bot; Floortje Mols
Journal:  Eur J Cancer       Date:  2011-05-27       Impact factor: 9.162

4.  Clinical and psychometric validation of the EORTC QLQ-CR29 questionnaire module to assess health-related quality of life in patients with colorectal cancer.

Authors:  R N Whistance; T Conroy; W Chie; A Costantini; O Sezer; M Koller; C D Johnson; S A Pilkington; J Arraras; E Ben-Josef; A M Pullyblank; P Fayers; J M Blazeby
Journal:  Eur J Cancer       Date:  2009-09-16       Impact factor: 9.162

5.  Patient-reported outcomes (PROs): putting the patient perspective in patient-centered outcomes research.

Authors:  Claire F Snyder; Roxanne E Jensen; Jodi B Segal; Albert W Wu
Journal:  Med Care       Date:  2013-08       Impact factor: 2.983

6.  The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology.

Authors:  N K Aaronson; S Ahmedzai; B Bergman; M Bullinger; A Cull; N J Duez; A Filiberti; H Flechtner; S B Fleishman; J C de Haes
Journal:  J Natl Cancer Inst       Date:  1993-03-03       Impact factor: 13.506

7.  Validation of the EORTC QLQ-C30 and EORTC QLQ-H&N35 in patients with laryngeal cancer after surgery.

Authors:  Susanne Singer; Dorit Wollbrück; Cornelia Wulke; Andreas Dietz; Eckart Klemm; Jens Oeken; Eberhard F Meister; Hilmar Gudziol; Julian Bindewald; Reinhold Schwarz
Journal:  Head Neck       Date:  2009-01       Impact factor: 3.147

8.  Clinical and psychometric validation of an EORTC questionnaire module, the EORTC QLQ-OES18, to assess quality of life in patients with oesophageal cancer.

Authors:  J M Blazeby; T Conroy; E Hammerlid; P Fayers; O Sezer; M Koller; J Arraras; A Bottomley; C W Vickery; P L Etienne; D Alderson
Journal:  Eur J Cancer       Date:  2003-07       Impact factor: 9.162

9.  Population-based survivorship research using cancer registries: a study of non-Hodgkin's lymphoma survivors.

Authors:  Neeraj K Arora; Ann S Hamilton; Arnold L Potosky; Julia H Rowland; Noreen M Aziz; Keith M Bellizzi; Carrie N Klabunde; Wendy McLaughlin; Jennifer Stevens
Journal:  J Cancer Surviv       Date:  2007-03       Impact factor: 4.442

10.  Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) system.

Authors:  Laura Ashley; Helen Jones; James Thomas; Alex Newsham; Amy Downing; Eva Morris; Julia Brown; Galina Velikova; David Forman; Penny Wright
Journal:  J Med Internet Res       Date:  2013-10-25       Impact factor: 5.428

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  2 in total

Review 1.  Patient-reported outcome measurement implementation in cancer survivors: a systematic review.

Authors:  Surbhi Singhal; James Dickerson; Michael J Glover; Mohana Roy; Michelle Chiu; Timothy Ellis-Caleo; Gavin Hui; Carla Tamayo; Nele Loecher; Hong-Nei Wong; Lauren C Heathcote; Lidia Schapira
Journal:  J Cancer Surviv       Date:  2022-05-23       Impact factor: 4.442

Review 2.  A Narrative Review on the Collection and Use of Electronic Patient-Reported Outcomes in Cancer Survivorship Care with Emphasis on Symptom Monitoring.

Authors:  Corina J G van den Hurk; Floortje Mols; Manuela Eicher; Raymond J Chan; Annemarie Becker; Gijs Geleijnse; Iris Walraven; Annemarie Coolbrandt; Maryam Lustberg; Galina Velikova; Andreas Charalambous; Bogda Koczwara; Doris Howell; Ethan M Basch; Lonneke V van de Poll-Franse
Journal:  Curr Oncol       Date:  2022-06-17       Impact factor: 3.109

  2 in total

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