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Zabora, James; Buzaglo, Joanne; Kennedy, Vicki; Richards, Tiffany; Schapmire, Tara; Zebrack, Brad; Ghobrial, Irene
Psycho-oncology (Chichester, England), 02/2014, Volume: 23Journal Article
Research has demonstrated that the diagnosis of cancer generates more fear than any other medical diagnosis. For most patients with the diagnosis of multiple myeloma, it takes time to fully understand how the disease may impact their lives. Given that multiple myeloma is a chronic disease characterized by re-occurring phases of cancer remission and relapse, this diagnosis presents an initial challenge for these patients and their families to grasp what lies ahead with treatment, side effects, and long-term physical, emotional, and social consequences. Although it is a relatively rare disease, patients with multiple myeloma face an unusually complex course of treatment that could include proteasome inhibitors, chemotherapy agents, immunomodulatory agents, radiation therapy, and stem cell transplantation (SCT) and will likely persist for the remainder of their lives. However a model of psychosocial care specific for patients with multiple myeloma and their caregivers has not yet been proposed. We sought to develop a model of care that considered the specific profile of this disease. The authors, representing the multidisciplinary care team, met in December 2012 to identify a model of psychosocial care for patients with multiple myeloma and their caregivers. The model was determined by consensus during the meeting and final agreement following the meeting. The meeting was sponsored by Onyx Pharmaceuticals. The need for targeted psychosocial care for the multiple myeloma patient and caregiver throughout the disease process is essential to ensure quality of life and optimal treatment outcomes. We propose herein the first known model of care for the treatment of multiple myeloma that engages both the patient and their caregivers. Innovative partnerships between psychosocial providers and other entities such as pharmaceutical companies can maximize resources for comprehensive program development. This presentation proposes a model of care that promotes active engagement in therapies for multiple myeloma while engaging the individual patient and their family caregivers. This treatment approach must be evidence-based in terms of distress screening tools, comprehensive psychosocial assessments, and most importantly, in the interventions and measurements of response that clinicians apply to this population.
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