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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...
Autores principales: | , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2017
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5862374/ https://www.ncbi.nlm.nih.gov/pubmed/29582005 http://dx.doi.org/10.1177/2374373517715011 |
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author | Monterosso, Leanne Taylor, Karen Platt, Violet Lobb, Elizabeth Musiello, Toni Bulsara, Caroline Stratton, Kendall Joske, David Krishnasamy, Meinir |
author_facet | Monterosso, Leanne Taylor, Karen Platt, Violet Lobb, Elizabeth Musiello, Toni Bulsara, Caroline Stratton, Kendall Joske, David Krishnasamy, Meinir |
author_sort | Monterosso, Leanne |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-5862374 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2017 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-58623742018-03-26 Living With Multiple Myeloma: A Focus Group Study of Unmet Needs and Preferences for Survivorship Care Monterosso, Leanne Taylor, Karen Platt, Violet Lobb, Elizabeth Musiello, Toni Bulsara, Caroline Stratton, Kendall Joske, David Krishnasamy, Meinir J Patient Exp Research Articles 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. SAGE Publications 2017-07-26 2018-03 /pmc/articles/PMC5862374/ /pubmed/29582005 http://dx.doi.org/10.1177/2374373517715011 Text en © The Author(s) 2017 http://creativecommons.org/licenses/by-nc/4.0/ This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). |
spellingShingle | Research Articles Monterosso, Leanne Taylor, Karen Platt, Violet Lobb, Elizabeth Musiello, Toni Bulsara, Caroline Stratton, Kendall Joske, David Krishnasamy, Meinir Living With Multiple Myeloma: A Focus Group Study of Unmet Needs and Preferences for Survivorship Care |
title | Living With Multiple Myeloma: A Focus Group Study of Unmet Needs and Preferences for Survivorship Care |
title_full | Living With Multiple Myeloma: A Focus Group Study of Unmet Needs and Preferences for Survivorship Care |
title_fullStr | Living With Multiple Myeloma: A Focus Group Study of Unmet Needs and Preferences for Survivorship Care |
title_full_unstemmed | Living With Multiple Myeloma: A Focus Group Study of Unmet Needs and Preferences for Survivorship Care |
title_short | Living With Multiple Myeloma: A Focus Group Study of Unmet Needs and Preferences for Survivorship Care |
title_sort | living with multiple myeloma: a focus group study of unmet needs and preferences for survivorship care |
topic | Research Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5862374/ https://www.ncbi.nlm.nih.gov/pubmed/29582005 http://dx.doi.org/10.1177/2374373517715011 |
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