Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on medication adherence

LIVE: Thursday 27th June 2024, 18:00-19:30 (CEST)
Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.
ADVANCED SEARCH
Log in
Top
BMC Cancer
Published in: BMC Cancer 1/2023

Open Access 01-12-2023 | Breast Cancer | Research

A qualitative study examining newly diagnosed breast cancer patients’ experiences of participating in the Alberta Moving Beyond Breast Cancer (AMBER) prospective cohort study

Authors: Lynn Corcoran, Christine M. Friedenreich, Margaret L. McNeely, Nicole S. Culos-Reed, Gordon Bell, Leanne Dickau, Kerry S. Courneya, Jeff K. Vallance

Published in: BMC Cancer | Issue 1/2023

Login to get access

Abstract

Background

Decisions to participate in cancer trials are associated with uncertainty, distress, wanting to help find a cure, the hope for benefit, and altruism. There is a gap in the literature regarding research examining participation in prospective cohort studies. The aim of this study was to examine the experiences of newly diagnosed women with breast cancer participating in the AMBER Study to identify potential strategies to support patients’ recruitment, retention, and motivation.

Methods

Newly diagnosed breast cancer patients were recruited from the Alberta Moving Beyond Breast Cancer (AMBER) cohort study. Data were collected using semi-structured conversational interviews with 21 participants from February to May 2020. Transcripts were imported into NVivo software for management, organization, and coding. Inductive content analysis was undertaken.

Results

Five main concepts associated with recruitment, retention, and motivation to participate were identified. These main concepts included: (1) personal interest in exercise and nutrition; (2) investment in individual results; (3) personal and professional interest in research; (4) burden of assessments; (5) importance of research staff.

Conclusions

Breast cancer survivors participating in this prospective cohort study had numerous reasons for participating and these reasons could be considered in future studies to enhance participant recruitment and retention. Improving recruitment and retention in prospective cancer cohort studies could result in more valid and generalizable study findings that could improve the care of cancer survivors.
Literature
1.
Brenner DR, Poirier A, Woods RR, Ellison LF, Billette JM, Demers AA, et al. Projected estimates of cancer in Canada in 2022. CMAJ. 2022;194(17):E601–7.CrossRefPubMedPubMedCentral
2.
Jenkins V, Farewell V, Farewell D, Darmanin J, Wagstaff J, Langridge C, et al. Drivers and barriers to patient participation in RCTs. Br J Cancer. 2013;108(7):1402–7.CrossRefPubMedPubMedCentral
3.
Nielsen ZE, Berthelsen CB. Cancer patients’ perceptions of factors influencing their decisions on participation in clinical drug trials: a qualitative meta-synthesis. J Clin Nurs. 2019;28(13–14):2443–61.CrossRefPubMed
4.
Unger JM, Hershman DL, Till C, Minasian LM, Osarogiagbon RU, Fleury ME, et al. When offered to participate”: a systematic review and meta-analysis of patient agreement to participate in cancer clinical trials. J Natl Cancer Inst. 2021;113(3):244–57.CrossRefPubMed
5.
Unger JM, Vaidya R, Hershman DL, Minasian LM, Fleury ME. Systematic review and meta-analysis of the magnitude of structural, clinical, and physician and patient barriers to cancer clinical trial participation. J Natl Cancer Inst. 2019;111(3):245–55.CrossRefPubMedPubMedCentral
6.
Viljoen B, Chambers SK, Dunn J, Ralph N, March S. Deciding to enrol in a cancer trial: a systematic review of qualitative studies. J Multidiscip Health. 2020;13:1257–81.CrossRef
7.
Chhatre S, Jefferson A, Cook R, Meeker CR, Kim JH, Hartz KM, et al. Patient-centered recruitment and retention for a randomized controlled study. Trials. 2018;19(1):205.CrossRefPubMedPubMedCentral
8.
Duma N, Vera Aguilera J, Paludo J, Haddox CL, Gonzalez Velez M, Wang Y, et al. Representation of minorities and women in oncology clinical trials: review of the past 14 years. J Oncol Pract. 2018;14(1):e1–10.CrossRefPubMed
9.
Todd A, Martin C, Morgan J, Herbert E, Bradburn M, Burton M, et al. Age specific recruitment and retention to a large multicentre observational breast cancer trial in older women: the Age Gap Trial. J Geriatr Oncol. 2021;12(5):714–23.CrossRefPubMedPubMedCentral
10.
Courneya KS, Vallance JK, Culos-Reed SN, McNeely ML, Bell GJ, Mackey JR, et al. The Alberta moving beyond breast Cancer (AMBER) cohort study: a prospective study of physical activity and health-related fitness in breast cancer survivors. BMC Cancer. 2012;12:525.CrossRefPubMedPubMedCentral
11.
Friedenreich CM, Vallance JK, McNeely ML, Culos-Reed SN, Matthews CE, Bell GJ, et al. The Alberta moving beyond breast Cancer (AMBER) cohort study: baseline description of the full cohort. Cancer Causes Control. 2022;33(3):441–53.CrossRefPubMedPubMedCentral
12.
Patton MQ. The nature, niche, value, and fruit of qualitative inquiry. Qualitative research and evaluation methods. 4th ed. Sage; 2015. 1–44.
13.
Tolley EE, Ulin PR, Mack N, Robinson ET, Succop SM. Qualitative methods in public health: a field guide for applied research. John Wiley & Sons; 2016. p. 480.
14.
15.
Patton MQ. Designing qualitative studies. Qualitative research and evaluation methods. 4th ed. Sage; 2015. 244–326.
16.
Fusch P, Ness L. Are we there yet? Data saturation in qualitative research. Qual Rep. 2015;20:1408–16.
17.
Elo S, Kaariainen M, Outi K, Polkki T, Utriainen K, Kyngas H. Qualitative content analysis: a focus on trustworthiness. SAGE Open. 2014;4(1).
18.
Kvale S, Brinkmann S. InterViews: learning the craft of qualitative research interviewing. SAGE; 2009. p. 377.
19.
20.
21.
Soule MC, Beale EE, Suarez L, Beach SR, Mastromauro CA, Celano CM, et al. Understanding motivations to participate in an observational research study: why do patients enroll? Soc Work Health Care. 2016;55(3):231–46.CrossRefPubMedPubMedCentral
22.
Goodman D, Johnson CO, Bowen D, Wenzel L, Edwards K. Factors that motivate participation in observational genetic cancer research studies. Open J Epidemiol. 2019;9(2):156.CrossRef
23.
Friedenreich CM, Stone CR, Cheung WY, Hayes SC. Physical activity and mortality in cancer survivors: a systematic review and meta-analysis. JNCI Cancer Spectr. 2020;4(1):350–8.CrossRef
24.
Spei ME, Samoli E, Bravi F, La Vecchia C, Bamia C, Benetou V. Physical activity in breast cancer survivors: a systematic review and meta-analysis on overall and breast cancer survival. Breast. 2019;44:144–52.CrossRefPubMed
25.
De Cicco P, Catani MV, Gasperi V, Sibilano M, Quaglietta M, Savini I. Nutrition and breast cancer: a literature review on prevention, treatment and recurrence. Nutrients. 2019;11(7):1514.CrossRefPubMedPubMedCentral
26.
Bower P, Brueton V, Gamble C, Treweek S, Smith CT, Young B, et al. Interventions to improve recruitment and retention in clinical trials: a survey and workshop to assess current practice and future priorities. Trials. 2014;15:399.CrossRefPubMedPubMedCentral
27.
Parkinson B, Meacock R, Sutton M, Fichera E, Mills N, Shorter GW, et al. Designing and using incentives to support recruitment and retention in clinical trials: a scoping review and a checklist for design. Trials. 2019;20(1):624.CrossRefPubMedPubMedCentral
28.
Hartman SJ, Rosen RK. Breast cancer relatives’ physical activity intervention needs and preferences: qualitative results. BMC Womens Health. 2017;17(1):36.CrossRefPubMedPubMedCentral
29.
Toledano MB, Smith RB, Brook JP, Douglass M, Elliott P. How to establish and follow up a large prospective cohort study in the 21st century–lessons from UK COSMOS. PLoS ONE. 2015;10(7):e0131521.CrossRefPubMedPubMedCentral
30.
Bidad N, MacDonald L, Winters ZE, Edwards SJL, Emson M, Griffin CL, et al. How informed is declared altruism in clinical trials? A qualitative interview study of patient decision-making about the QUEST trials (quality of life after mastectomy and breast Reconstruction). Trials. 2016;17(1):431.CrossRefPubMedPubMedCentral
31.
Godskesen T, Hansson MG, Nygren P, Nordin K, Kihlbom U. Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials. Eur J Cancer Care. 2015;24(1):133–41.CrossRef
32.
Raj M, De Vries R, Nong P, Kardia SLR, Platt JE. Do people have an ethical obligation to share their health information? Comparing narratives of altruism and health information sharing in a nationally representative sample. PLoS ONE. 2020;15(12):e0244767.CrossRefPubMedPubMedCentral
33.
34.
Lera AT, Fede AB, Miranda MC, Ueda A, Lerner T, Cordeiro RA, et al. Cognitive dysfunction (chemobrain) in breast cancer patients receiving adjuvant therapy: a meta-analysis. J Clin Oncol. 2010;28(15suppl):e19608–8.CrossRef
35.
Selamat MH, Loh SY, Mackenzie L, Vardy J. Chemobrain experienced by breast cancer survivors: a meta-ethnography study investigating research and care implications. PLoS ONE. 2014;9(9):e108002.CrossRefPubMedPubMedCentral
36.
Hesse CM, Tinius RA, Pitts BC, Olenick AA, Blankenship MM, Hoover DL, et al. Assessment of endpoint criteria and perceived barriers during maximal cardiorespiratory fitness testing among pregnant women. J Sports Med Phys Fitness. 2018;58(12):1844–51.CrossRefPubMed
37.
Jones SMW, LaCroix AZ, Li W, Zaslavsky O, Wassertheil-Smoller S, Weitlauf J, et al. Depression and quality of life before and after breast cancer diagnosis in older women from the women’s Health Initiative. J Cancer Surviv. 2015;9(4):620–9.CrossRefPubMedPubMedCentral
38.
Dellson P, Nilsson K, Jernström H, Carlsson C. Patients’ reasoning regarding the decision to participate in clinical cancer trials: an interview study. Trials. 2018;19(1):528.CrossRefPubMedPubMedCentral
Metadata
Title
A qualitative study examining newly diagnosed breast cancer patients’ experiences of participating in the Alberta Moving Beyond Breast Cancer (AMBER) prospective cohort study
Authors
Lynn Corcoran
Christine M. Friedenreich
Margaret L. McNeely
Nicole S. Culos-Reed
Gordon Bell
Leanne Dickau
Kerry S. Courneya
Jeff K. Vallance
Publication date
01-12-2023
Publisher
BioMed Central
Published in
BMC Cancer / Issue 1/2023
Electronic ISSN: 1471-2407
DOI
https://doi.org/10.1186/s12885-023-10967-3

Other articles of this Issue 1/2023

BMC Cancer 1/2023 Go to the issue

Research

A clinicopathological study and survival analysis of 99 breast cancers with HER2/CEP17 ratio ≥ 2.0 and an average HER2 copy number < 4.0 per cell in China

Research

Comparison of the effectiveness of lauromacrogol injection for ablation and microwave ablation in the treatment of predominantly cystic thyroid nodules: a multicentre study

Research

Urinary tract infection after radiation therapy or radical prostatectomy on the prognosis of patients with prostate cancer: a population-based study

Research

Investigating the functional role of SETD6 in lung adenocarcinoma

Research

Function and regulation of miR-186-5p, miR-125b-5p and miR-1260a in chordoma

Research

Endosulfine alpha maintains spindle pole integrity by recruiting Aurora A during mitosis
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine
Image Credits