Contributions
Abstract: P392
Type: Poster Sessions
Abstract Category: Clinical aspects of MS - Clinical assessment tools
Background: The UK MS Register is one of the largest repositories of ´real world´ data from People with MS (PwMS) in the UK. Data are captured clinically and by Patient Reported Outcome Measures (PROMs) via the internet. Longitudinal data collection has been ongoing for 7 years. Amongst the ´core´ instruments is the Multiple Sclerosis Impact Scale 29v2 (MSIS29), and the EuroQol 5D (EQ5D). In 2017 the Extended Barthel Independence (EBI) instrument was added to assess participant dependence.
Objective: To examine the appropriateness of the EBI against the existing measures on the MS Register
Methods: Participants was ascertained by searching the UK MS Register datasets: Required complete demographics - date of birth, gender, age at diagnosis, MS type at diagnosis and current MS Type. The EBI, MSIS29v2 and the EQ5D had to be completed within a similar time point. MSIS and Barthel are calculated, the EQ5D allows for self assessment via a 0 -100 scale.
Results: 2649 participants satisfied all criteria, 72% were female. Mean age at diagnosis was 40.7(±10.7), mean age at response = 52.4(±11.4).
Mean response to the instruments with current MS Type:
PPMS RRMS SPMS Benign Unknown
MSIS 43.0. 55.5. 61.6 24.2 42.9
EQ5D 58.4 61.2 51.9 70.6 61.4
EBI 78.1 91.6 70.0 94.9 85.4
Conclusion: Previous work has shown that MSIS29 alone has been an excellent proxy for disability, fitting well across disease types. The addition of self assessed quality of life on the Register illustrates that most participants rate their quality of life in the middle of scale suggesting a certain amount of self adjustment to their disability. EBI however shows despite disease status that most participants have a high degree of independence in most aspects of daily living.
Disclosure: Middleton RM: Nothing to Disclose
Rodgers W: Nothing to Disclose
Ford DV: Nothing to Disclose
Tuite-Dalton KA : Nothing to Disclose
Nicholas R : Nothing to disclose related to this research abstract
Abstract: P392
Type: Poster Sessions
Abstract Category: Clinical aspects of MS - Clinical assessment tools
Background: The UK MS Register is one of the largest repositories of ´real world´ data from People with MS (PwMS) in the UK. Data are captured clinically and by Patient Reported Outcome Measures (PROMs) via the internet. Longitudinal data collection has been ongoing for 7 years. Amongst the ´core´ instruments is the Multiple Sclerosis Impact Scale 29v2 (MSIS29), and the EuroQol 5D (EQ5D). In 2017 the Extended Barthel Independence (EBI) instrument was added to assess participant dependence.
Objective: To examine the appropriateness of the EBI against the existing measures on the MS Register
Methods: Participants was ascertained by searching the UK MS Register datasets: Required complete demographics - date of birth, gender, age at diagnosis, MS type at diagnosis and current MS Type. The EBI, MSIS29v2 and the EQ5D had to be completed within a similar time point. MSIS and Barthel are calculated, the EQ5D allows for self assessment via a 0 -100 scale.
Results: 2649 participants satisfied all criteria, 72% were female. Mean age at diagnosis was 40.7(±10.7), mean age at response = 52.4(±11.4).
Mean response to the instruments with current MS Type:
PPMS RRMS SPMS Benign Unknown
MSIS 43.0. 55.5. 61.6 24.2 42.9
EQ5D 58.4 61.2 51.9 70.6 61.4
EBI 78.1 91.6 70.0 94.9 85.4
Conclusion: Previous work has shown that MSIS29 alone has been an excellent proxy for disability, fitting well across disease types. The addition of self assessed quality of life on the Register illustrates that most participants rate their quality of life in the middle of scale suggesting a certain amount of self adjustment to their disability. EBI however shows despite disease status that most participants have a high degree of independence in most aspects of daily living.
Disclosure: Middleton RM: Nothing to Disclose
Rodgers W: Nothing to Disclose
Ford DV: Nothing to Disclose
Tuite-Dalton KA : Nothing to Disclose
Nicholas R : Nothing to disclose related to this research abstract