TY - JOUR
T1 - Clinical audit research and evaluation of motor neuron disease (CARE-MND)
T2 - a national electronic platform for prospective, longitudinal monitoring of MND in Scotland
AU - Leighton, Danielle
AU - Newton, Judith
AU - Colville, Shuna
AU - Bethell, Andrew
AU - Craig, Gillian
AU - Cunningham, Laura
AU - Flett, Moira
AU - Fraser, Dianne
AU - Hatrick, Janice
AU - Lennox, Helen
AU - Marshall, Laura
AU - McAleer, Dympna
AU - McEleney, Alison
AU - Millar, Kitty
AU - Silver, Ann
AU - Stephenson, Laura
AU - Stewart, Susan
AU - Storey, Dorothy
AU - Stott, Gill
AU - Thornton, Carol
AU - Webber, Carolyn
AU - Gordon, Harry
AU - Melchiorre, Giulia
AU - Sherlock, Laura
AU - Beswick, Emily
AU - Buchanan, David
AU - Abrahams, Sharon
AU - Bateman, Anthony
AU - Preston, Jenny
AU - Duncan, Callum
AU - Davenport, Richard
AU - Gorrie, George
AU - Morrison, Ian
AU - Swingler, Robert
AU - Chandran, Siddharthan
AU - Pal, Suvankar
N1 - This work was supported by grant CAF/MND/15/01, jointly funded by the Chief Scientist Office for Scotland, MND Scotland and the MND Association. MND Scotland also contributed additionally to the overall funding of CARE-MND development.
PY - 2019
Y1 - 2019
N2 - Objectives: Launched in 1989, the Scottish Motor Neuron Disease Register (SMNDR) has provided a resource for prospective clinical data collection. However, in 2015 we aimed to evolve a system to allow: i) A patient-centered approach to care based on recognized standards, ii) Harmonized data sharing between Scottish health professionals in "real-time", iii) Regular audit of care to facilitate timely improvements in service delivery, and iv) Patient participation in a diverse range of observational and interventional research studies including clinical trials.Methods: We developed a standardized national electronic data platform-Clinical Audit Research and Evaluation of MND (CARE-MND) which integrates clinical audit and research data fields. Data completion pre- and post-CARE-MND were compared, guided by recently published National Institute for Clinical Excellence (NICE) recommendations. Statistical difference in data capture between time periods was assessed using Z-test of proportions.Results: Data field completion for the historical 2011-2014 period ranged from 4 to 95%; median 50%. CARE-MND capture ranged from 32 to 98%; median 87%. 15/17 fields were significantly more complete post-CARE-MND ( p < 0.001). All MND nurse/allied health specialists in Scotland use the CARE-MND platform. Management of MND in Scotland is now coordinated through a standardized template.Conclusions: Through CARE-MND, national audits of MND care and interventions have been possible, leading to protocols for harmonized service provision. Stratification of the MND population is facilitating participation in observational and interventional studies. CARE-MND can act as a template for other neurological disorders.
AB - Objectives: Launched in 1989, the Scottish Motor Neuron Disease Register (SMNDR) has provided a resource for prospective clinical data collection. However, in 2015 we aimed to evolve a system to allow: i) A patient-centered approach to care based on recognized standards, ii) Harmonized data sharing between Scottish health professionals in "real-time", iii) Regular audit of care to facilitate timely improvements in service delivery, and iv) Patient participation in a diverse range of observational and interventional research studies including clinical trials.Methods: We developed a standardized national electronic data platform-Clinical Audit Research and Evaluation of MND (CARE-MND) which integrates clinical audit and research data fields. Data completion pre- and post-CARE-MND were compared, guided by recently published National Institute for Clinical Excellence (NICE) recommendations. Statistical difference in data capture between time periods was assessed using Z-test of proportions.Results: Data field completion for the historical 2011-2014 period ranged from 4 to 95%; median 50%. CARE-MND capture ranged from 32 to 98%; median 87%. 15/17 fields were significantly more complete post-CARE-MND ( p < 0.001). All MND nurse/allied health specialists in Scotland use the CARE-MND platform. Management of MND in Scotland is now coordinated through a standardized template.Conclusions: Through CARE-MND, national audits of MND care and interventions have been possible, leading to protocols for harmonized service provision. Stratification of the MND population is facilitating participation in observational and interventional studies. CARE-MND can act as a template for other neurological disorders.
KW - Care
KW - epidemiology
KW - motor neuron disease
KW - patient-centered
KW - technology
UR - http://www.scopus.com/inward/record.url?scp=85063150176&partnerID=8YFLogxK
U2 - 10.1080/21678421.2019.1582673
DO - 10.1080/21678421.2019.1582673
M3 - Article
C2 - 30889975
SN - 2167-8421
VL - 20
SP - 242
EP - 250
JO - Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
JF - Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
IS - 3-4
ER -