Ami Baba1, Melissa D McCradden1, Jessica Rabski1, Michael D Cusimano1,2,3. 1. Injury Prevention Research Office, St. Michael's Hospital, Division of Neurosurgery, Toronto, Ontario, Canada. 2. Division of Neurosurgery, Department of Surgery, St. Michael's Hospital, University of Toronto, Ontario, Canada. 3. Dalla Lana School of Public Health, University of Toronto, Ontario, Canada.
Abstract
BACKGROUND: Meningiomas are the most common primary benign brain neoplasms, but despite their commonality, the supportive needs of this patient population have been overlooked. The aim of this study is to identify unmet needs of meningioma patients, caregivers, and health care providers. METHODS: We adopted a patient-centered approach by using qualitative interviewing with patients diagnosed with a meningioma who have undergone treatment in the last 10 years since the date of their interview. Informal caregivers (family and/or friends) of the patient population and health care providers who are normally involved in the management and care of meningioma patients were also interviewed. Interview transcripts were subjected to thematic analysis. RESULTS: Of the 50 participants interviewed, there were 30 patients, 12 caregivers, and 8 health care professionals. Thematic analysis revealed 4 overarching themes: (1) access to targeted postoperative care, (2) financial struggles for patients and their families, (3) lack of information specific to meningiomas and postsurgical management, and (4) lack of psychosocial support. CONCLUSION: This study identified supportive needs specific to the meningioma patient population, which predominantly falls within the postoperative phase. The postoperative journey of this patient population could potentially extend to the rest of the patient's life, which necessitates resources and information directed to support postoperative recovery and management. The development of directly relevant supportive resources that support meningioma patients in their postoperative recovery is necessary to improve the health-related quality of life in this patient population.
BACKGROUND: Meningiomas are the most common primary benign brain neoplasms, but despite their commonality, the supportive needs of this patient population have been overlooked. The aim of this study is to identify unmet needs of meningioma patients, caregivers, and health care providers. METHODS: We adopted a patient-centered approach by using qualitative interviewing with patients diagnosed with a meningioma who have undergone treatment in the last 10 years since the date of their interview. Informal caregivers (family and/or friends) of the patient population and health care providers who are normally involved in the management and care of meningioma patients were also interviewed. Interview transcripts were subjected to thematic analysis. RESULTS: Of the 50 participants interviewed, there were 30 patients, 12 caregivers, and 8 health care professionals. Thematic analysis revealed 4 overarching themes: (1) access to targeted postoperative care, (2) financial struggles for patients and their families, (3) lack of information specific to meningiomas and postsurgical management, and (4) lack of psychosocial support. CONCLUSION: This study identified supportive needs specific to the meningioma patient population, which predominantly falls within the postoperative phase. The postoperative journey of this patient population could potentially extend to the rest of the patient's life, which necessitates resources and information directed to support postoperative recovery and management. The development of directly relevant supportive resources that support meningioma patients in their postoperative recovery is necessary to improve the health-related quality of life in this patient population.
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