The future of myeloma research in Canada and beyond: results of a James Lind Alliance priority setting partnership

Fowler, Samantha; McLaughlin, Lauren P.; Bridges, Sarah; Robichaud, Marc; Ridgway, Barbara; Reece, Donna; Song, Kevin; Dalrymple, Lorelei; Sully, Robin; Nason, Sharon; Rowland, Suzanne; MacDonald, Trish; Paine, William; Reiman, Anthony

doi:10.1111/bjh.17946

Cited by 3 publications

(3 citation statements)

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“…This list encompassed questions related to all four areas of scope and highlighted research topics that may be underway but are still largely unanswered (i.e., finding a cure for myeloma). This list was previously published in a medical journal to raise awareness of these questions among myeloma clinicians, researchers, and funders [ 14 ].…”

Section: Resultsmentioning

confidence: 99%

“…Knowledge translation steering group members were actively involved with knowledge translation, including informally sharing the results with peers (e.g., at support groups) and presenting to potential research funders while the research team developed traditional knowledge translation products (which were reviewed and approved by knowledge translation steering group members) tailored to the needs of the clinical and research members of the myeloma community. These knowledge translation products included a correspondence article in a peer-reviewed journal and presentations at national and international conferences [ 14 ].…”

Section: Discussionmentioning

confidence: 99%

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How should multiple myeloma research change in a patient-oriented world? Findings and lessons from the pan-Canadian myeloma priority setting partnership

et al. 2023

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Background Over the last decade there has been considerable research into the treatment, management, and quality of life of people living with multiple myeloma. However, there has been limited investigation into topics deemed important to patients and caregivers within this community. We conducted a James Lind Alliance Priority Setting Partnership to establish the ‘Top 10 Priorities for Myeloma Research’, informed by patient and public partners. Methods A research team and steering group were established in 2019 to conduct the myeloma priority setting partnership. Steering group members included patients, caregivers, and healthcare providers who advised the research team and oversaw the scope of the project, grounded on their lived experience. Following the James Lind Alliance guidelines for identification and ranking of research questions, we used surveys and a virtual workshop to collect and prioritize questions posed by myeloma patients, caregivers, and healthcare providers across Canada. Results The Top 10 list of priorities for myeloma research was finalized at the consensus-building workshop and encompassed questions related to diagnosis, treatment, management, and living well with myeloma. A final participant evaluation survey elicited a positive response. Interpretation The myeloma priority setting partnership identified the research priorities of people living with myeloma, caregivers, and healthcare providers to inform clinical research on this disease going forward. This project underscores the importance of patient and public engagement in the identification of research questions, highlighting the concerns of people affected by myeloma to ultimately improve the lives of people living with this disease.

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

How should multiple myeloma research change in a patient-oriented world? Findings and lessons from the pan-Canadian myeloma priority setting partnership

et al. 2023

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“…This article aims to address the lack of clear direction on best practices with steroid management in MM, with the goal of improving the patient’s quality of life. This article aligns with Myeloma Canada’s 2021 top ten priorities ( 9 ) that include topics such as personalized medicine; safe reduction, cycling, and cessation of anti-myeloma medications in order to minimize side effects; and reduction and management of short and long-term adverse effects (AEs) of myeloma treatment.…”

Section: Introductionmentioning

confidence: 91%

Canadian perspectives in multiple myeloma on the use of steroids in clinical practice based on patient and healthcare provider interviews

McKenzie

Gazzé²,

Hewitt³

et al. 2022

Front. Oncol.

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Corticosteroid (steroid) medications are associated with challenging adverse effects that can negatively impact patient quality of life. However, owing to a long legacy of effective use in treatment protocols, they remain a cornerstone of multiple myeloma (MM) care. We conducted a roundtable with Canadian healthcare providers (HCPs) with diverse healthcare backgrounds and involvement in MM care as well as with patients with MM. Our goal was to develop clear guidance for steroid management aimed at improving patient quality of life, taking into account patient perspective and experiences with managing the disease. Our recommendations, which are based on the insights acquired from this discussion, can be categorized to the following areas: steroid prescribing, dosing, and modifications; managing adverse effects; and patient-HCP communication. These recommendations can be used by the entire multi-disciplinary hematology team to improve patient quality of life while being treated with steroid medication for multiple myeloma.

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Baseline peripheral neuropathy was associated with age and a prognostic factor in newly diagnosed multiple myeloma patients

Dong

Zhang

Han

et al. 2022

Sci Rep

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Multiple myeloma (MM) is an incurable plasma cell hematological malignancy. Bortezomib has become the primary drug in the treatment of patients with MM. However, its negative effects, especially peripheral neuropathy (PN), affect the patients’ life quality and treatment continuity. However, there are few studies on baseline PN of MM, and little is known of the impact of baseline PN on the prognosis of MM patients. Therefore, we reviewed the clinical data of newly diagnosed MM patients in our center, explored the influencing factors of baseline PN, and evaluated PN’s influence on the prognosis of MM patients undergoing induction therapy with bortezomib. According to the inclusion and exclusion criteria, 155 MM patients were eligible for the retrospective study. The multivariate regression analysis, generalized additive fitting smooth curve, the receiver operating characteristic curve (ROC) and K-M curve were conducted in this study. We found that baseline PN in patients with MM was age-related; MM patients with baseline PN have more severe bortezomib induced PN (BiPN) during the four courses of induction therapy with bortezomib as the primary regimen and worse PN outcome after induction therapy. Additionally, the progression-free survival (PFS) and overall survival (OS) of MM patients with baseline PN were worse than those of the MM patients without baseline PN.

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The future of myeloma research in Canada and beyond: results of a James Lind Alliance priority setting partnership

Abstract: et al. Gemtuzumab ozogamicin improves event-free survival and reduces relapse in pediatric KMT2A-rearranged AML: results from the phase III children's oncology group trial AAML0531.

Cited by 3 publications

References 4 publications

How should multiple myeloma research change in a patient-oriented world? Findings and lessons from the pan-Canadian myeloma priority setting partnership

How should multiple myeloma research change in a patient-oriented world? Findings and lessons from the pan-Canadian myeloma priority setting partnership

Canadian perspectives in multiple myeloma on the use of steroids in clinical practice based on patient and healthcare provider interviews

Baseline peripheral neuropathy was associated with age and a prognostic factor in newly diagnosed multiple myeloma patients

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