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The Finnish spine register (FinSpine): development, design, validation and utility
Johan Marjamaa1, Jukka Huttunen2, Jyrki Kankare3
1Department of Neurosurgery, Helsinki University Hospital, Helsinki, Finland. johan.marjamaa@hus.fi.
Purpose:
Our aim was to develop a nationwide, computer-based, Spine Register (FinSpine) for monitoring surgical activity, quality of surgery, long-term outcomes, and effectiveness of treatment. In this paper, we describe our experiences in the development and implementation of the register.
Methods:
The register was developed by a steering group, consisting of orthopedic surgeons and neurosurgeons from the whole country. We strived to develop a register which would be in active use by spine surgeons and enable collection of Patient Reported Outcome and Experience Measures (PROMs and PREMs) automatically and prospectively. We are actively promoting the use of the register in order to gain a nationwide coverage and achieve high response-rates from both surgeons and patients.
Results:
The use of FinSpine started in 2016 and it has been granted continuous funding from the Finnish Institute for Health and Welfare from the 1st of January 2023 onwards. Currently the register is used by 19/23 (83%) public hospitals and the use is expanding to private hospitals as well. The response-rate of surgeons is currently 80%. The response-rate of patients is on average 56% but reaches up to 90% in hospitals using register-coordinators.
Conclusion:
The use of FinSpine is increasing. By gaining a larger coverage and completeness, the data can be used for research purposes which we believe will influence decision making and ultimately improve the outcomes and quality of life of the patients. Comparison with other national spine registers is possible, since FinSpine includes similar baseline characteristics and outcome measures (e.g., ODI, EQ-5D, VAS).
