Women Diagnosed with Ovarian Cancer: Patient and Carer Experiences and Perspectives.
focus groups
health-related quality of life
patient-reported outcome measures
qualitative descriptive
semi-structured interviews
Journal
Patient related outcome measures
ISSN: 1179-271X
Titre abrégé: Patient Relat Outcome Meas
Pays: New Zealand
ID NLM: 101551170
Informations de publication
Date de publication:
2021
2021
Historique:
received:
18
07
2020
accepted:
15
12
2020
entrez:
24
2
2021
pubmed:
25
2
2021
medline:
25
2
2021
Statut:
epublish
Résumé
By directly engaging with women diagnosed with ovarian cancer, this study aimed to explore and identify their view of the health symptoms and outcomes that matter most to them as they traverse their disease pathway. Patient-reported outcome measures in ovarian cancer have tended to focus on physical symptoms rather than the more complex psychosocial aspects of living with the disease. Using a "ground-up approach", this study sought to comprehensively understand the health concerns that matter most to women with ovarian cancer as a first step in generating items for development into an ovarian cancer-specific patient-reported outcome measure. Following an extensive literature review, we sought to capture the "patient voice" through a qualitative descriptive approach including a community conversation with ovarian cancer patients, their carers and clinicians, and interviews and focus groups with women with ovarian cancer. Thirteen women were interviewed individually, and two focus groups were conducted. A template thematic analysis was used to analyze the data. Key themes included challenges related to clinical diagnosis, treatment phase, altered relationships with family/friends, financial issues, relationships with health professionals and coping strategies. Within each key theme, several sub-themes emerged that were identified as various challenges experienced by participants. Diagnostic delay, chemotherapy and surgery-related challenges, negative impact of sexual well-being on partner relationship, communicational challenges with health professionals were among the few issues identified. In addition, self-empowerment was identified as a coping mechanism among participants. By identifying priorities for women diagnosed with ovarian cancer we have highlighted the need for strategies to reduce diagnostic delays and improve quality of life for these women. Data will inform the development of an ovarian cancer-specific patient-reported outcome measure.
Sections du résumé
PURPOSE
OBJECTIVE
By directly engaging with women diagnosed with ovarian cancer, this study aimed to explore and identify their view of the health symptoms and outcomes that matter most to them as they traverse their disease pathway.
BACKGROUND
BACKGROUND
Patient-reported outcome measures in ovarian cancer have tended to focus on physical symptoms rather than the more complex psychosocial aspects of living with the disease. Using a "ground-up approach", this study sought to comprehensively understand the health concerns that matter most to women with ovarian cancer as a first step in generating items for development into an ovarian cancer-specific patient-reported outcome measure.
PATIENTS AND METHODS
METHODS
Following an extensive literature review, we sought to capture the "patient voice" through a qualitative descriptive approach including a community conversation with ovarian cancer patients, their carers and clinicians, and interviews and focus groups with women with ovarian cancer. Thirteen women were interviewed individually, and two focus groups were conducted. A template thematic analysis was used to analyze the data.
RESULTS
RESULTS
Key themes included challenges related to clinical diagnosis, treatment phase, altered relationships with family/friends, financial issues, relationships with health professionals and coping strategies. Within each key theme, several sub-themes emerged that were identified as various challenges experienced by participants. Diagnostic delay, chemotherapy and surgery-related challenges, negative impact of sexual well-being on partner relationship, communicational challenges with health professionals were among the few issues identified. In addition, self-empowerment was identified as a coping mechanism among participants.
CONCLUSION
CONCLUSIONS
By identifying priorities for women diagnosed with ovarian cancer we have highlighted the need for strategies to reduce diagnostic delays and improve quality of life for these women. Data will inform the development of an ovarian cancer-specific patient-reported outcome measure.
Identifiants
pubmed: 33623464
doi: 10.2147/PROM.S272688
pii: 272688
pmc: PMC7896761
doi:
Types de publication
Journal Article
Langues
eng
Pagination
33-43Informations de copyright
© 2021 Boban et al.
Déclaration de conflit d'intérêts
Paul Cohen reports personal fees from Seqirus, outside the submitted work. The authors report no other potential conflicts of interest in this work.
Références
Expert Rev Pharmacoecon Outcomes Res. 2011 Aug;11(4):421-31
pubmed: 21831023
Health (London). 2009 Sep;13(5):523-41
pubmed: 19696134
J Nurs Scholarsh. 2012 Jun;44(2):136-44
pubmed: 22551013
J Ment Health. 2013 Dec;22(6):555-62
pubmed: 23323928
BMC Cancer. 2014 Mar 10;14:171
pubmed: 24612526
J Nurs Res. 2017 Dec;25(6):447-454
pubmed: 29023254
J Patient Rep Outcomes. 2018 Sep 15;2:42
pubmed: 30294712
Int J Gynecol Cancer. 2013 May;23(4):775-9
pubmed: 23552803
Palliat Support Care. 2008 Sep;6(3):239-47
pubmed: 18662417
Lancet. 2017 Jul 8;390(10090):191-202
pubmed: 28077228
Cancer. 2009 Oct 15;115(20):4857-64
pubmed: 19691091
Curr Oncol. 2016 Dec;23(6):e556-e562
pubmed: 28050144
Lancet. 2017 Jul 8;390(10090):178-190
pubmed: 28077235
Sex Med. 2019 Dec;7(4):530-539
pubmed: 31501030
Top Spinal Cord Inj Rehabil. 2014 Summer;20(3):167-80
pubmed: 25484563
Taiwan J Obstet Gynecol. 2020 Jan;59(1):115-119
pubmed: 32039777
Am Fam Physician. 2016 Jun 1;93(11):937-44
pubmed: 27281838
Holist Nurs Pract. 2003 Nov-Dec;17(6):300-8
pubmed: 14650572
Qual Life Res. 2018 Jan;27(1):59-74
pubmed: 29248998
Int J Gynaecol Obstet. 2003 Oct;83 Suppl 1:211-29
pubmed: 14763177
Ann Oncol. 2013 Dec;24 Suppl 10:x64-x68
pubmed: 24265408
J Psychosom Obstet Gynaecol. 2020 Jun;41(2):86-92
pubmed: 31373525
BMC Health Serv Res. 2017 Sep 8;17(1):635
pubmed: 28886742
Eur J Cancer Care (Engl). 2011 Sep;20(5):653-61
pubmed: 21771126
J Cancer Educ. 2018 Dec;33(6):1285-1293
pubmed: 28646458
Lancet Oncol. 2018 Aug;19(8):1117-1125
pubmed: 30026000
Ecancermedicalscience. 2020 May 06;14:1035
pubmed: 32419847
HERD. 2016 Jul;9(4):16-25
pubmed: 26791375
Br J Cancer. 2013 Feb 5;108(2):292-300
pubmed: 23370208
Int J Gynecol Cancer. 2012 Jun;22(5):712-7
pubmed: 22453532
Cancer Control. 2011 Jan;18(1):52-8
pubmed: 21273980
Cancer Nurs. 2003 Feb;26(1):1-9
pubmed: 12556707
Eur J Obstet Gynecol Reprod Biol. 2017 Sep;216:85-91
pubmed: 28738296
Patient Educ Couns. 2013 Sep;92(3):286-91
pubmed: 23746769
J Oncol. 2018 Mar 7;2018:7863520
pubmed: 29707001
Health Aff (Millwood). 2016 Apr;35(4):575-82
pubmed: 27044954
JAMA Oncol. 2017 Apr 1;3(4):524-548
pubmed: 27918777
JAMA. 2018 Feb 13;319(6):595-606
pubmed: 29450530
Gynecol Oncol. 2018 Jan;148(1):12-18
pubmed: 29174565
Clin Nurs Res. 2018 Sep;27(7):826-840
pubmed: 28412839
Qual Health Res. 2016 Nov;26(13):1753-1760
pubmed: 26613970
J Adv Pract Oncol. 2016 Apr;7(3):271-273
pubmed: 29152388
Int J Gynecol Cancer. 2014 Jun;24(5):857-64
pubmed: 24844219
Prz Menopauzalny. 2016 Jun;15(2):112-6
pubmed: 27582686
Br J Community Nurs. 2011 Mar;16(3):146-51
pubmed: 21378658