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

被引：21

作者：

Monterosso, Leanne ^{[1
,2
,3
]}

Taylor, Karen ^{[1
,4
]}

Platt, Violet ^{[1
,4
]}

Lobb, Elizabeth ^{[5
,6
]}

Musiello, Toni ^{[7
]}

Bulsara, Caroline ^{[1
]}

Stratton, Kendall ^{[1
,8
]}

Joske, David ^{[9
,10
]}

Krishnasamy, Meinir ^{[11
]}

机构：

[1] Univ Notre Dame Australia, Ctr Nursing & Midwifery Res, Sch Nursing & Midwifery, Fremantle, WA, Australia

[2] St John God Murdoch Hosp, Murdoch, WA, Australia

[3] Edith Cowan Univ, Sch Nursing, Joondalup, WA, Australia

[4] Western Australia Canc & Palliat Care Network, Perth, WA, Australia

[5] Calvary Hlth Care Kogarah, New South Wales & Cunningham Ctr Palliat Care, Darlinghurst, NSW, Australia

[6] Univ Notre Dame, Sch Med, Darlinghurst, NSW, Australia

[7] Univ Western Australia, Sch Surg, Crawley, WA, Australia

[8] Sir Charles Gairdner Hosp, WA Youth Canc Serv, Nedlands, WA, Australia

[9] Sir Charles Gairdner Hosp, Nedlands, WA, Australia

[10] Univ Western Australia, Sch Med, Crawley, WA, Australia

[11] Univ Melbourne, Peter MacCallum Canc Ctr, Dept Canc Experiences Res, Melbourne, Vic, Australia

来源：

JOURNAL OF PATIENT EXPERIENCE | 2018年 / 5卷 / 01期

关键词：

multiple myeloma; survivorship; focus groups; unmet needs; support;

D O I：

10.1177/2374373517715011

中图分类号：

R19 [保健组织与事业（卫生事业管理）];

学科分类号：

摘要：

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.

引用

页码：6 / 15

页数：10

共 23 条

[1] Are psychosocial factors associated with quality of life in patients with haematological cancer? A critical review of the literature [J].