Skip to main content
Top
Published in: Health and Quality of Life Outcomes 1/2015

Open Access 01-12-2015 | Research

The subjective experience of young women with non-metastatic breast cancer: the Young Women with Breast Cancer Inventory

Authors: V. Christophe, C. Duprez, A. Congard, P. Antoine, A. Lesur, E. Fournier, L. Vanlemmens

Published in: Health and Quality of Life Outcomes | Issue 1/2015

Login to get access

Abstract

Background

The subjective experience of young women with breast cancer has some particular features linked to the impact of the disease and its treatment on their age-related issues (e.g. desire for a child, couple relationship, career management). Despite these specific concerns, no questionnaire currently targets the young breast cancer patient’s quality of life, subjective experience or common problems when facing cancer. This study presents the psychometric validation of an inventory that aimed to measure the impact of breast cancer on the quality of life of young women (<45 years of age) with non-metastatic disease.

Methods

546 women aged <45 years when diagnosed with a non-metastatic breast cancer were recruited in 27 French cancer research and treatment centers. They answered a self-reported questionnaire created from verbatim collected by non-directive interviews carried out with 69 patients in a first qualitative study. Exploratory and confirmatory analyses were conducted in order to obtain the final structure of the scale. Internal consistency, test-retest reliability and concurrent validity with quality of life questionnaires currently used (QLQ-C30 and the QLQ-BR23 module) were then assessed.

Results

The YW-BCI36 contains 36 items and highlights 8 factors: 1) feeling of couple cohesion, 2) negative affectivity and apprehension about the future, 3) management of child(ren) and of everyday life, 4) sharing with close relatives, 5) body image and sexuality, 6) financial difficulties, 7) deterioration of relationships with close relatives, and 8) career management. Psychometric analyses indicated good internal consistency (Cronbach’s alpha values ranging from 0.76 to 0.91) and temporal reliability (Bravais-Pearson correlations ranging from 0.66 to 0.85). As expected, there were quite strong correlations between the YW-BCI36 and the QLQ-C30 and QLQ-BR23 scores (r ranging from 0.20 to −0.66), indicating adequate concurrent validity.

Conclusions

The YW-BCI36 was confirmed as a valid scale for evaluating the subjective experience of breast cancer in young women. This instrument could help to identify the problems of these women more precisely, in order to respond to them better by an optimal care management. This scale may improve the medical, psychological and social care of breast cancer patients.
Literature
1.
go back to reference WHOQOL Group. The development of the WHO quality of life assessment instruments (the WHOQOL). In: Orley J, Kuyken W, editors. Quality of life assessment: International perspectives. Berlin: Springer-Verlag; 1994. p. 41–57.CrossRef WHOQOL Group. The development of the WHO quality of life assessment instruments (the WHOQOL). In: Orley J, Kuyken W, editors. Quality of life assessment: International perspectives. Berlin: Springer-Verlag; 1994. p. 41–57.CrossRef
2.
go back to reference WHO. Measurement of and target-setting for well-being: an initiative by the WHO Regional Office for Europe. Second meeting of the expert group, Paris, France, 25–26 June 2012. WHO. Measurement of and target-setting for well-being: an initiative by the WHO Regional Office for Europe. Second meeting of the expert group, Paris, France, 25–26 June 2012.
3.
go back to reference Bakas T, McLennon SM, Carpenter JS, Buelow JM, Otte JL, Hanna KM, et al. Systematic review of health-related quality of life models. Health and Quality of Life Outcomes. 2012;10:134.CrossRefPubMedCentralPubMed Bakas T, McLennon SM, Carpenter JS, Buelow JM, Otte JL, Hanna KM, et al. Systematic review of health-related quality of life models. Health and Quality of Life Outcomes. 2012;10:134.CrossRefPubMedCentralPubMed
5.
go back to reference Epplein M, Zheng Y, Zheng W, Chen Z, Gu K, Penson D, et al. Quality of life after breast cancer diagnosis and survival. J Clin Oncol. 2011;29:406–12.CrossRefPubMedCentralPubMed Epplein M, Zheng Y, Zheng W, Chen Z, Gu K, Penson D, et al. Quality of life after breast cancer diagnosis and survival. J Clin Oncol. 2011;29:406–12.CrossRefPubMedCentralPubMed
6.
go back to reference Muñoz M. Quality of life during treatment in young women with breast cancer. Breast Cancer Res Treat. 2010;123 Suppl 1:75–7.CrossRefPubMed Muñoz M. Quality of life during treatment in young women with breast cancer. Breast Cancer Res Treat. 2010;123 Suppl 1:75–7.CrossRefPubMed
7.
go back to reference Brédart A, Dolbeault S. Évaluation de la qualité de vie en oncologie: I—Définitions et objectifs. Rev Francoph Psycho Oncologie. 2005;4(1):7–12.CrossRef Brédart A, Dolbeault S. Évaluation de la qualité de vie en oncologie: I—Définitions et objectifs. Rev Francoph Psycho Oncologie. 2005;4(1):7–12.CrossRef
8.
go back to reference Kanatas A, Velikova G, Roe B, Horgan K, Ghazali N, Shaw RJ, et al. Patient-reported outcomes in breast oncology: a review of validated outcome instruments. Tumori. 2012;98:678–88.PubMed Kanatas A, Velikova G, Roe B, Horgan K, Ghazali N, Shaw RJ, et al. Patient-reported outcomes in breast oncology: a review of validated outcome instruments. Tumori. 2012;98:678–88.PubMed
9.
go back to reference Brédart A. Evaluation de la qualité de vie en oncologie: méthodes et applications. Oncologie. 2006;8:1–5.CrossRef Brédart A. Evaluation de la qualité de vie en oncologie: méthodes et applications. Oncologie. 2006;8:1–5.CrossRef
10.
go back to reference Ferrans CE. Differences in what quality-of-life instruments measure. J Natl Cancer Inst Monographs. 2007;37:22–6.CrossRefPubMed Ferrans CE. Differences in what quality-of-life instruments measure. J Natl Cancer Inst Monographs. 2007;37:22–6.CrossRefPubMed
11.
go back to reference Varricchio CG, Ferrans CE. Quality of life assessments in clinical practice. Semin Oncol Nurs. 2010;26:12–7.CrossRefPubMed Varricchio CG, Ferrans CE. Quality of life assessments in clinical practice. Semin Oncol Nurs. 2010;26:12–7.CrossRefPubMed
12.
go back to reference Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM, et al. Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol. 2004;22:714–24.CrossRefPubMed Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM, et al. Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol. 2004;22:714–24.CrossRefPubMed
13.
go back to reference Badger TA, Braden CJ, Mishel MH, Longman A. Depression burden, psychological adjustment, and quality of life in women with breast cancer: patterns over time. Res Nurs Health. 2004;27:19–28.CrossRefPubMed Badger TA, Braden CJ, Mishel MH, Longman A. Depression burden, psychological adjustment, and quality of life in women with breast cancer: patterns over time. Res Nurs Health. 2004;27:19–28.CrossRefPubMed
14.
go back to reference Montazeri A. Quality of life data as prognostic indicators of survival in cancer patients: an overview of the literature from 1982 to 2008. Health Qual Life Outcomes. 2009;7:102.CrossRefPubMedCentralPubMed Montazeri A. Quality of life data as prognostic indicators of survival in cancer patients: an overview of the literature from 1982 to 2008. Health Qual Life Outcomes. 2009;7:102.CrossRefPubMedCentralPubMed
15.
go back to reference Northouse L, Templin T, Mood D. Couples’ adjustment to breast disease during the first year following diagnosis. J Behav Med. 2001;24:115–36.CrossRefPubMed Northouse L, Templin T, Mood D. Couples’ adjustment to breast disease during the first year following diagnosis. J Behav Med. 2001;24:115–36.CrossRefPubMed
16.
go back to reference Waldrop DP, O’Connor TL, Trabold N. “Waiting for the other shoe to drop:” distress and coping during and after treatment for breast cancer. J Psychosoc Oncol. 2011;29:450–73.PubMed Waldrop DP, O’Connor TL, Trabold N. “Waiting for the other shoe to drop:” distress and coping during and after treatment for breast cancer. J Psychosoc Oncol. 2011;29:450–73.PubMed
18.
go back to reference Champion VL, Wagner LI, Monahan PO, Daggy J, Smith L, Cohee A, et al. Comparison of younger and older breast cancer survivors and age-matched controls on specific and overall quality of life domains. Cancer. 2014;120(15):2237–46.CrossRefPubMed Champion VL, Wagner LI, Monahan PO, Daggy J, Smith L, Cohee A, et al. Comparison of younger and older breast cancer survivors and age-matched controls on specific and overall quality of life domains. Cancer. 2014;120(15):2237–46.CrossRefPubMed
19.
go back to reference Dunn J, Steginga SK. Young women’s experience of breast cancer: Defining young and identifying concerns. Psycho-Oncology. 2000;9:137–16.CrossRefPubMed Dunn J, Steginga SK. Young women’s experience of breast cancer: Defining young and identifying concerns. Psycho-Oncology. 2000;9:137–16.CrossRefPubMed
22.
go back to reference Partridge AH, Ruddy KJ, Kennedy J, Winer EP. Model program to improve care for a unique cancer population: young women with breast cancer. J Oncol Pract. 2012;8:e105–110.CrossRefPubMedCentralPubMed Partridge AH, Ruddy KJ, Kennedy J, Winer EP. Model program to improve care for a unique cancer population: young women with breast cancer. J Oncol Pract. 2012;8:e105–110.CrossRefPubMedCentralPubMed
23.
go back to reference Roche N. Follow-up after treatment for breast cancer in young women. Breast. 2006;15 Suppl 2:S71–75.CrossRefPubMed Roche N. Follow-up after treatment for breast cancer in young women. Breast. 2006;15 Suppl 2:S71–75.CrossRefPubMed
24.
go back to reference Avis NE, Crawford S, Manuel J. Quality of life among younger women with breast cancer. J Clin Oncol. 2005;23:3322–30.CrossRefPubMed Avis NE, Crawford S, Manuel J. Quality of life among younger women with breast cancer. J Clin Oncol. 2005;23:3322–30.CrossRefPubMed
25.
go back to reference Baucom DH, Porter LS, Kirby JS, Gremore TM, Keefe FJ. Psychosocial issues confronting young women with breast cancer. Breast Dis. 2005;23:103–13.PubMed Baucom DH, Porter LS, Kirby JS, Gremore TM, Keefe FJ. Psychosocial issues confronting young women with breast cancer. Breast Dis. 2005;23:103–13.PubMed
26.
go back to reference Le Corroller-Soriano AG, Malavoti L, Mermilliod C. La Vie Deux Ans Après Le Diagnostic de Cancer. La documentation française; 2008. [Etudes et Statistiques] Le Corroller-Soriano AG, Malavoti L, Mermilliod C. La Vie Deux Ans Après Le Diagnostic de Cancer. La documentation française; 2008. [Etudes et Statistiques]
27.
go back to reference Mertz BG, Bistrup PE, Johansen C, Dalton SO, Deltour I, Kehlet H, et al. Psychological distress among women with newly diagnosed breast cancer. Eur J Oncol Nurs. 2012;16:439–43.CrossRefPubMed Mertz BG, Bistrup PE, Johansen C, Dalton SO, Deltour I, Kehlet H, et al. Psychological distress among women with newly diagnosed breast cancer. Eur J Oncol Nurs. 2012;16:439–43.CrossRefPubMed
28.
go back to reference Phillips K-A, Osborne RH, Giles GG, Dite GS, Apicella C, Hopper JL, et al. Psychosocial factors and survival of young women with breast cancer: a population-based prospective cohort study. J Clin Oncol. 2008;26:4666–71.CrossRefPubMedCentralPubMed Phillips K-A, Osborne RH, Giles GG, Dite GS, Apicella C, Hopper JL, et al. Psychosocial factors and survival of young women with breast cancer: a population-based prospective cohort study. J Clin Oncol. 2008;26:4666–71.CrossRefPubMedCentralPubMed
29.
go back to reference Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85:365–76.CrossRefPubMed Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85:365–76.CrossRefPubMed
30.
go back to reference Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, et al. The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol. 1993;11:570–9.PubMed Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, et al. The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol. 1993;11:570–9.PubMed
31.
go back to reference Carlson LE, Waller A, Mitchell AJ. Screening for distress and unmet needs in patients with cancer: review and recommendations. J Clin Oncol. 2012;30:1160–77.CrossRefPubMed Carlson LE, Waller A, Mitchell AJ. Screening for distress and unmet needs in patients with cancer: review and recommendations. J Clin Oncol. 2012;30:1160–77.CrossRefPubMed
33.
go back to reference Finlayson TL, Moyer CA, Sonnad SS. Assessing symptoms, disease severity, and quality of life in the clinical context: A theoretical framework. Am J Manag Care. 2004;10:336–44.PubMed Finlayson TL, Moyer CA, Sonnad SS. Assessing symptoms, disease severity, and quality of life in the clinical context: A theoretical framework. Am J Manag Care. 2004;10:336–44.PubMed
34.
go back to reference Mc Cabe C, Cronin P. Issues for researchers to consider when using health-related quality of life outcomes in cancer research. Eur J Cancer Care. 2011;20:563–9.CrossRef Mc Cabe C, Cronin P. Issues for researchers to consider when using health-related quality of life outcomes in cancer research. Eur J Cancer Care. 2011;20:563–9.CrossRef
35.
go back to reference Easley J, Miedema B. Rehabilitation after breast cancer: recommendations from young survivors. Rehabil Nurs. 2012;37:163–70.CrossRefPubMed Easley J, Miedema B. Rehabilitation after breast cancer: recommendations from young survivors. Rehabil Nurs. 2012;37:163–70.CrossRefPubMed
36.
go back to reference Fournier E, Christophe V, Vanlemmens L. [Assessing the quality of life of young women and their partners: a pertinent approach to the study of breast cancer]. Bull Cancer. 2009;96:571–7.PubMed Fournier E, Christophe V, Vanlemmens L. [Assessing the quality of life of young women and their partners: a pertinent approach to the study of breast cancer]. Bull Cancer. 2009;96:571–7.PubMed
37.
go back to reference Antoine P, Vanlemmens L, Fournier E, Trocmé M, Christophe V. Young couples’ experiences of breast cancer during hormone therapy: an interpretative phenomenological dyadic analysis. Cancer Nurs. 2013;36:213–20.CrossRefPubMed Antoine P, Vanlemmens L, Fournier E, Trocmé M, Christophe V. Young couples’ experiences of breast cancer during hormone therapy: an interpretative phenomenological dyadic analysis. Cancer Nurs. 2013;36:213–20.CrossRefPubMed
38.
go back to reference Vanlemmens L, Fournier E, Boinon D, Machavoine J-L, Christophe V. Quality of life of young women with early breast cancer and their partners: specific needs result in the necessity of development of specific questionnaires for the patient and the partner. Bull Cancer. 2012;99:685–91.PubMed Vanlemmens L, Fournier E, Boinon D, Machavoine J-L, Christophe V. Quality of life of young women with early breast cancer and their partners: specific needs result in the necessity of development of specific questionnaires for the patient and the partner. Bull Cancer. 2012;99:685–91.PubMed
39.
go back to reference Vanlemmens L, Christophe V, Fournier E, Dauchy S, Boinon D, Toudic-Emily F, et al. The quality of life of young women with nonmetastatic breast cancer and their partners’: specific needs require development of specific questionnaires for each of them. Breast J. 2012;18:182–4.CrossRefPubMed Vanlemmens L, Christophe V, Fournier E, Dauchy S, Boinon D, Toudic-Emily F, et al. The quality of life of young women with nonmetastatic breast cancer and their partners’: specific needs require development of specific questionnaires for each of them. Breast J. 2012;18:182–4.CrossRefPubMed
40.
go back to reference Joreskog KG, Sorbom D. LISREL 8: User’s Reference Guide. Chicago: Scientific Software International; 2001. Joreskog KG, Sorbom D. LISREL 8: User’s Reference Guide. Chicago: Scientific Software International; 2001.
41.
go back to reference Baider L, Andritsch E, Goldzweig G, Uziely B, Ever-Hadani P, Hofman G, et al. Changes in psychological distress of women with breast cancer in long-term remission and their husbands. Psychosomatics. 2004;45:58–68.CrossRefPubMed Baider L, Andritsch E, Goldzweig G, Uziely B, Ever-Hadani P, Hofman G, et al. Changes in psychological distress of women with breast cancer in long-term remission and their husbands. Psychosomatics. 2004;45:58–68.CrossRefPubMed
43.
44.
go back to reference Romito F, Goldzweig G, Cormio C, Hagedoorn M, Andersen BL. Informal caregiving for cancer patients. Cancer. 2013;119 Suppl 11:2160–9.CrossRefPubMed Romito F, Goldzweig G, Cormio C, Hagedoorn M, Andersen BL. Informal caregiving for cancer patients. Cancer. 2013;119 Suppl 11:2160–9.CrossRefPubMed
45.
go back to reference Traa MJ, De Vries J, Bodenmann G, Den Oudsten BL. Dyadic coping and relationship functioning in couples coping with cancer: A systematic review. Br J Health Psychol. 2014;5:1-39. Traa MJ, De Vries J, Bodenmann G, Den Oudsten BL. Dyadic coping and relationship functioning in couples coping with cancer: A systematic review. Br J Health Psychol. 2014;5:1-39.
46.
go back to reference Ferrans CE. Advances in measuring quality of life outcomes in cancer care. Sem Oncol Nurs. 2010;26(1):2–11.CrossRef Ferrans CE. Advances in measuring quality of life outcomes in cancer care. Sem Oncol Nurs. 2010;26(1):2–11.CrossRef
Metadata
Title
The subjective experience of young women with non-metastatic breast cancer: the Young Women with Breast Cancer Inventory
Authors
V. Christophe
C. Duprez
A. Congard
P. Antoine
A. Lesur
E. Fournier
L. Vanlemmens
Publication date
01-12-2015
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2015
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-015-0273-x

Other articles of this Issue 1/2015

Health and Quality of Life Outcomes 1/2015 Go to the issue