Treatment preferences of patients with relapsed and refractory multiple myeloma: a qualitative study.
Experiences of illness
Haematological cancer
Qualitative methods
Side effects
Survivorship
Treatment options
Journal
BMC cancer
ISSN: 1471-2407
Titre abrégé: BMC Cancer
Pays: England
ID NLM: 100967800
Informations de publication
Date de publication:
25 Mar 2019
25 Mar 2019
Historique:
received:
16
08
2018
accepted:
13
03
2019
entrez:
27
3
2019
pubmed:
27
3
2019
medline:
16
7
2019
Statut:
epublish
Résumé
Multiple myeloma is a haematological malignancy characterized by significant morbidity and mortality. This study sought to develop an in-depth understanding of patients' lived experiences of relapsed or refractory multiple myeloma (RRMM) and its treatment, and to identify which features of treatment were most important to them. Qualitative interviews and focus groups (FGs) were conducted with 32 people living with RRMM across Canada. In Phase 1, interviews focused on participants' accounts of their experiences with the disease and its treatment and laid the groundwork for the FGs (Phase 2). The FGs developed a deeper understanding of patients' treatment priorities. Interview and FG transcripts were coded for emergent themes and patterns. The interviews identified important side effects that had significant impacts on patients' lives, including physical, cognitive, and psychological/emotional side effects. Participants also identified specific treatment features (attributes) that were important to them. These were compiled into a list and used in the FGs to understand patients' priorities. Higher prioritized attributes were: life expectancy, physical and cognitive side effects, and financial impact. Mode of administration, treatment intervals, psychological side effects, and sleep/mood effects were identified as lower priorities. RRMM and its treatments impact importantly on patients' quality-of-life across a range of domains. Patients prioritized treatment features that could enhance life expectancy, minimize side effects and offset financial burdens. A clear articulation of patient priorities can contribute to efforts to design treatment with patients' concerns in mind, thereby promoting a more patient-centered approach to care.
Sections du résumé
BACKGROUND
BACKGROUND
Multiple myeloma is a haematological malignancy characterized by significant morbidity and mortality. This study sought to develop an in-depth understanding of patients' lived experiences of relapsed or refractory multiple myeloma (RRMM) and its treatment, and to identify which features of treatment were most important to them.
METHODS
METHODS
Qualitative interviews and focus groups (FGs) were conducted with 32 people living with RRMM across Canada. In Phase 1, interviews focused on participants' accounts of their experiences with the disease and its treatment and laid the groundwork for the FGs (Phase 2). The FGs developed a deeper understanding of patients' treatment priorities. Interview and FG transcripts were coded for emergent themes and patterns.
RESULTS
RESULTS
The interviews identified important side effects that had significant impacts on patients' lives, including physical, cognitive, and psychological/emotional side effects. Participants also identified specific treatment features (attributes) that were important to them. These were compiled into a list and used in the FGs to understand patients' priorities. Higher prioritized attributes were: life expectancy, physical and cognitive side effects, and financial impact. Mode of administration, treatment intervals, psychological side effects, and sleep/mood effects were identified as lower priorities.
CONCLUSIONS
CONCLUSIONS
RRMM and its treatments impact importantly on patients' quality-of-life across a range of domains. Patients prioritized treatment features that could enhance life expectancy, minimize side effects and offset financial burdens.
IMPLICATIONS FOR CANCER SURVIVORS
CONCLUSIONS
A clear articulation of patient priorities can contribute to efforts to design treatment with patients' concerns in mind, thereby promoting a more patient-centered approach to care.
Identifiants
pubmed: 30909874
doi: 10.1186/s12885-019-5467-x
pii: 10.1186/s12885-019-5467-x
pmc: PMC6434792
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
264Subventions
Organisme : Janssen Inc. (Canada)
ID : 14-0903-SPA (Contract ID)
Références
Sociol Health Illn. 1982 Jul;4(2):167-82
pubmed: 10260456
BMJ. 2000 Jun 3;320(7248):1530-3
pubmed: 10834905
Res Nurs Health. 2000 Aug;23(4):334-40
pubmed: 10940958
Oncol Nurs Forum. 2004 Nov 16;31(6):1127-35
pubmed: 15547635
J Health Serv Res Policy. 2007 Jan;12(1):25-30
pubmed: 17244394
Blood. 2008 Mar 1;111(5):2516-20
pubmed: 17975015
Hematology Am Soc Hematol Educ Program. 2007;:317-23
pubmed: 18024646
Soc Sci Med. 2008 Dec;67(11):1826-36
pubmed: 18851893
Can Oncol Nurs J. 2008 Summer;18(3):141-51
pubmed: 18856174
Haematologica. 2009 Feb;94(2):270-5
pubmed: 19144659
Psychosoc Med. 2008 Dec 19;5:Doc10
pubmed: 19742282
Support Care Cancer. 2011 Jan;19(1):101-11
pubmed: 19998045
Eur J Haematol. 2011 Jan;86(1):1-15
pubmed: 20942854
Eur J Cancer Care (Engl). 2011 Mar;20(2):267-75
pubmed: 20950368
Nurs Stand. 2011 Mar 16-22;25(28):38-44
pubmed: 21488448
Value Health. 2011 Jun;14(4):403-13
pubmed: 21669364
Clin J Oncol Nurs. 2011 Aug;15 Suppl:5-8
pubmed: 21816706
Support Care Cancer. 2012 Sep;20(9):2033-40
pubmed: 22076620
Support Care Cancer. 2013 Feb;21(2):599-607
pubmed: 22886429
Patient Prefer Adherence. 2013;7:133-9
pubmed: 23412964
J Adv Nurs. 2014 Dec;70(12):2800-9
pubmed: 24725097
BMC Health Serv Res. 2014 May 22;14:235
pubmed: 24884920
BMC Cancer. 2014 Jul 09;14:496
pubmed: 25005145
Eur J Health Econ. 2015 Jul;16(6):657-70
pubmed: 25135768
BMJ Open. 2014 Oct 24;4(10):e006661
pubmed: 25344489
Expert Rev Hematol. 2015 Jun;8(3):355-66
pubmed: 25739703
Cell Cycle. 2017 Jul 18;16(14):1345-1349
pubmed: 28657421
Qual Health Res. 2019 Apr;29(5):758-773
pubmed: 30296921
Res Nurs Health. 1993 Jun;16(3):213-8
pubmed: 8497673