Living With Multiple Myeloma A Focus Group Study of Unmet Needs and Preferences for Survivorship Care

Purpose: To describe the unmet informational, psychological, emotional, social, practical, and physical needs and preferences for posttreatment survivorship care of individuals living with multiple myeloma to inform the development of relevant, person-centered, survivorship services. Methods: An exp...

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Published inJournal of patient experience Vol. 5; no. 1; pp. 6 - 15
Main Authors Monterosso, Leanne, Taylor, Karen, Platt, Violet, Lobb, Elizabeth, Musiello, Toni, Bulsara, Caroline, Stratton, Kendall, Joske, David, Krishnasamy, Meinir
Format Journal Article
LanguageEnglish
Published Los Angeles, CA SAGE Publications 01.03.2018
Subjects
survivorship
unmet needs
multiple myeloma
support
focus groups
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Abstract Purpose: To describe the unmet informational, psychological, emotional, social, practical, and physical needs and preferences for posttreatment survivorship care of individuals living with multiple myeloma to inform the development of relevant, person-centered, survivorship services. Methods: An exploratory, descriptive study using 2 focus groups with 14 participants, 6 to 49 months postdiagnosis. Results: Thematic analysis revealed 7 key themes: information needs, experience with health-care professionals, coping with side effects, communicating with family and friends, dealing with emotions, support needs, and living with the chronicity of myeloma. Participants described key characteristics of survivorship care relevant to their needs and indicated they would like a more whole of person approach to follow-up when the main treatment phases had completed. Conclusion: Participants in this study described unmet needs across a breadth of domains that varied over time. The development of flexible, person-centered approaches to comprehensive survivorship care is needed to address the considerable quality-of-life issues experienced by people living with multiple myeloma. Nurse-led care may offer 1 viable model to deliver enhanced patient experience—providing the vital “link” that people described as missing from their survivorship care.
AbstractList PURPOSETo describe the unmet informational, psychological, emotional, social, practical, and physical needs and preferences for posttreatment survivorship care of individuals living with multiple myeloma to inform the development of relevant, person-centered, survivorship services. METHODSAn exploratory, descriptive study using 2 focus groups with 14 participants, 6 to 49 months postdiagnosis. RESULTSThematic analysis revealed 7 key themes: information needs, experience with health-care professionals, coping with side effects, communicating with family and friends, dealing with emotions, support needs, and living with the chronicity of myeloma. Participants described key characteristics of survivorship care relevant to their needs and indicated they would like a more whole of person approach to follow-up when the main treatment phases had completed. CONCLUSIONParticipants in this study described unmet needs across a breadth of domains that varied over time. The development of flexible, person-centered approaches to comprehensive survivorship care is needed to address the considerable quality-of-life issues experienced by people living with multiple myeloma. Nurse-led care may offer 1 viable model to deliver enhanced patient experience-providing the vital "link" that people described as missing from their survivorship care.
Purpose: To describe the unmet informational, psychological, emotional, social, practical, and physical needs and preferences for posttreatment survivorship care of individuals living with multiple myeloma to inform the development of relevant, person-centered, survivorship services. Methods: An exploratory, descriptive study using 2 focus groups with 14 participants, 6 to 49 months postdiagnosis. Results: Thematic analysis revealed 7 key themes: information needs, experience with health-care professionals, coping with side effects, communicating with family and friends, dealing with emotions, support needs, and living with the chronicity of myeloma. Participants described key characteristics of survivorship care relevant to their needs and indicated they would like a more whole of person approach to follow-up when the main treatment phases had completed. Conclusion: Participants in this study described unmet needs across a breadth of domains that varied over time. The development of flexible, person-centered approaches to comprehensive survivorship care is needed to address the considerable quality-of-life issues experienced by people living with multiple myeloma. Nurse-led care may offer 1 viable model to deliver enhanced patient experience—providing the vital “link” that people described as missing from their survivorship care.
To describe the unmet informational, psychological, emotional, social, practical, and physical needs and preferences for posttreatment survivorship care of individuals living with multiple myeloma to inform the development of relevant, person-centered, survivorship services. An exploratory, descriptive study using 2 focus groups with 14 participants, 6 to 49 months postdiagnosis. Thematic analysis revealed 7 key themes: information needs, experience with health-care professionals, coping with side effects, communicating with family and friends, dealing with emotions, support needs, and living with the chronicity of myeloma. Participants described key characteristics of survivorship care relevant to their needs and indicated they would like a more whole of person approach to follow-up when the main treatment phases had completed. Participants in this study described unmet needs across a breadth of domains that varied over time. The development of flexible, person-centered approaches to comprehensive survivorship care is needed to address the considerable quality-of-life issues experienced by people living with multiple myeloma. Nurse-led care may offer 1 viable model to deliver enhanced patient experience-providing the vital "link" that people described as missing from their survivorship care.
Author Lobb, Elizabeth
Krishnasamy, Meinir
Joske, David
Platt, Violet
Monterosso, Leanne
Bulsara, Caroline
Stratton, Kendall
Taylor, Karen
Musiello, Toni
AuthorAffiliation 10 School of Medicine, University of Western Australia, Crawley, Western Australia, Australia
3 School of Nursing, Edith Cowan University, Joondalup, Western Australia, Australia
9 Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia
7 School of Surgery, University of Western Australia, Crawley, Western Australia, Australia
11 Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, University of Melbourne, Victoria, Australia
8 WA Youth Cancer Service, Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia
6 School of Medicine, The University of Notre Dame, Darlinghurst, New South Wales, Australia
2 St John of God Murdoch Hospital, Western Australia, Australia
4 Western Australia Cancer and Palliative Care Network, Perth, Australia
1 Centre for Nursing and Midwifery Research, School of Nursing and Midwifery, University of Notre Dame Australia, Fremantle, Western Australia, Australia
5 Calvary Health Care Kogarah, New South Wales and Cunningham Ce
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Issue 1
Keywords survivorship
unmet needs
multiple myeloma
support
focus groups
Language English
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Title Living With Multiple Myeloma
URI https://journals.sagepub.com/doi/full/10.1177/2374373517715011
https://www.ncbi.nlm.nih.gov/pubmed/29582005
https://search.proquest.com/docview/2019041906
https://pubmed.ncbi.nlm.nih.gov/PMC5862374
Volume 5
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