Improving Outcome-Driven Care in Multiple Myeloma Using Patient-Reported Outcomes: A Qualitative Evaluation Study

Christine Bennink (), Marleen Mul, Marjolein Klift, Annemiek Broijl, Lidwine Tick, Eva Jongh, Mirjam Garvelink, Dorien Lobbezoo, Pieter Sonneveld and Jan Hazelzet
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Christine Bennink: Erasmus University Medical Center
Marleen Mul: Erasmus University
Marjolein Klift: Amphia
Annemiek Broijl: Erasmus University Medical Center
Lidwine Tick: Maxima Medical Center
Eva Jongh: Albert Schweitzer Hospital
Mirjam Garvelink: St. Antonius Hospital
Dorien Lobbezoo: Maastricht University Medical Center
Pieter Sonneveld: Erasmus University Medical Center
Jan Hazelzet: Erasmus University Medical Center

The Patient: Patient-Centered Outcomes Research, 2023, vol. 16, issue 3, No 6, 255-264

Abstract: Abstract Background and Objective Multiple myeloma is an incurable disease with a considerable illness and treatment burden, which negatively impacts patients’ quality of life. This study aimed to evaluate the implementation of multiple myeloma care in five Dutch hospitals, related to the three objectives of outcome-driven care, which are defined as (1) providing information for shared decision making in individual patient care, (2) supporting the learning capacity of healthcare professionals and healthcare institutions through benchmarking and (3) developing outcome-driven and patient-centred contracting by health insurers. Methods In this qualitative study, semi-structured interviews about experiences with patient-reported outcomes were conducted with patients, healthcare professionals and other stakeholders 2 years after implementation. Data were thematically analysed, and emerging topics were clustered around the three objectives of outcome-driven care. Results A total of 46 interviews were held (15 with patients, 16 with professionals and 15 with other stakeholders) that showed patients with multiple myeloma were willing to complete patient-reported outcomes, although integration of patient-reported outcomes in shared decision making fell short in clinical practice. Aggregated patient-reported outcomes were considered important for improving quality of care; however, data collection and data exchange are hindered by privacy legislation, limitations of IT systems and a lack of data standards. Patient-reported outcomes were expected to contribute to cost-effective multiple myeloma treatment, yet outcome-driven reimbursement is still lacking. Conclusions Outcome-driven multiple myeloma care using patient-reported outcomes is feasible, provided that (1) patient-reported outcomes and shared decision making are integrated into clinical practice, (2) legal and technical obstacles hindering data collection are removed and (3) health insurers adjust their reimbursement plans to facilitate outcome-driven care.

Date: 2023
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DOI: 10.1007/s40271-023-00616-z

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