The work of managing multiple myeloma and its implications for treatment-related decision making: a qualitative study of patient and caregiver experiences

BMC Cancer

Cheryl Pritlove¹  Mobin Jassi²  Bridget Burns³  Arleigh McCurdy⁴ 

[1]Applied Health Research Centre, St. Michael’s Hospital, 30 Bond Street, M5B 1W8, Toronto, ON, Canada

[2]Faculty of Medicine, Queen’s University, 99 University Avenue, K7L3P5, Kingston, ON, Canada

[3]Takeda Canada Inc, 24 Delhi Street, N1E 4J6, Guelph, ON, Canada

[4]The Ottawa Hospital Research Institute, Box 704-501 Smyth Rd, K1H 8L6, Ottawa, ON, Canada

关键词: Multiple myeloma;    Work;    Patient;    Caregiver;    Decision making;    Qualitative research;   

DOI  :  10.1186/s12885-021-08527-8

来源: Springer

【 摘 要 】

BackgroundThe evolving nature of multiple myeloma (MM) therapies, including the introduction of novel oral agents, has produced a shift in the delivery of care from hospital to home. Within this context, patients and their caregivers are becoming increasingly engaged in the work of illness management, however the exact nature of this work as well as the ways in which this work informs treatment preferences and decisions within this population has not been explored. This qualitative study sought to develop an in-depth understanding of patient and caregiver experiences with different MM treatments, the work necessitated by MM and treatment management, and the processes of patient/caregiver treatment-related decision making.MethodsQualitative interviews were conducted with 16 MM patients and 8 caregivers. Interviews were coded for emergent themes and patterns and a constant comparative approach was used to identify important similarities and differences within and between interviews.ResultsPatient and caregiver participants described four types of work, including the work of accruing and personalizing medical knowledge, illness-related work in the hospital, illness-related work in the home, and psychosocial and relational management. They illuminated the physical, psychological, social and relational toll of this work and traced a pathway through which work informed their treatment-related decisions, sometimes in ways that conflicted with their preferences for treatment.ConclusionsThe work involved in managing MM, its treatment, and side-effects can inform the treatment decisions that patients and caregivers make. We must continue to find meaningful ways for patients and caregivers to discuss goals of care and treatment throughout the cancer trajectory, as well as support health care providers in the delivery of person-centred cancer care. With an increasing emphasis on the importance of shared decision making in MM, an improved understanding of the factors that frame patient’s and caregiver’s treatment decisions will be paramount to ensuring meaningful and high-quality patient-centered care.

【 授权许可】

CC BY