Multiple sclerosis (MS) is a condition where the brain and the spinal cord are attacked by the bodys own defence system (the immune system), destroying the protective covering called the myelin sheath. This destruction slows down and even completely stops signals from travelling across the nerves. This process then causes weakness or loss of movement in the limbs and face. It can also cause pins and needles sensation or numbness. There are several types of MS. In secondary progressive MS (SPMS), patients have a steady decline, that can be slow or rapid, after a period of repeat incidences of MS (called relapse-remitting MS).
We would like to understand the impact of SPMS on the National Health Service. We want to do this first by describing the characteristics of SPMS patients in England. Once we have this profile, we would like to look at how many admissions, clinic appointments and emergency attendances these patients have, as well as the associated costs. We would then look at the complications and new conditions these patients develop after being diagnosed with SPMS. To further understand treatment, we plan to look at what medications these patients receive.
Data from the Clinical Practice Research Datalink (CPRD) is ideal because this condition is treated by general practitioners (GPs). We can also use prescription data from CPRD to determine treatments. Finally, CPRD can be linked to healthcare records in hospitals (Hospital Episode Statistics or HES), which will allow us to fully measure costs even in those healthcare providers.
SPMS is a debilitating autoimmune neurologic disease that results in paralysis and numbness of the body. Quantifying the healthcare resource and cost burden of SPMS on the NHS in England would be crucial for reviewing healthcare policies and treatment pathways for the disease.
We aim to determine the annual incidence and mean annual prevalence of SPMS using CPRD-HES linked data. For the SPMS cohort we have ascertained in the dataset, we will then determine their demographic and clinical profile, their healthcare resource use in primary and secondary care, the treatment pathway, and clinical outcomes.
CPRD-HES linked data is ideal for this study as we can track patients from primary care to secondary care, SPMS having significant healthcare journeys in both segments of the health system. Primary care data will provide us the diagnosis of patients, as well as appointments, referrals and prescriptions for the treatment pathway. Secondary care data will allow verification of the diagnosis of patients included, as well as healthcare resource use in the inpatient, outpatient and the A&E setting. Both datasets will be useful for determining patient outcomes. ONS data will provide reliable reference point for mortality to complete the treatment pathway of patients.
As this is mainly a descriptive study, no comparative testing shall be performed. Continuous outcomes will be reported as means with standard deviations, minima and maxima. Categorical outcomes will be reported as distributions of patients in terms of numbers and percentages of patients.
We shall measure the following: annual incidence and mean annual prevalence of SPMS, demographic and clinical profile (age, sex, follow-up, Charlson co-morbidity score, index of multiple deprivation), healthcare resource use and associated costs for inpatient care (admissions, length of stay, healthcare resource group [HRG] tariffs), outpatient care (appointments and HRG tariffs), A&E care (attendances and HRG tariffs), primary care (appointments, referrals, prescriptions), lines of therapy and medications in each line of therapy, morbidities following diagnosis, mortality rate.
Adrian Paul J. Rabe - Chief Investigator - Health iQ Ltd ( UK ) t/a CorEvitas
Adrian Paul J. Rabe - Corresponding Applicant - Health iQ Ltd ( UK ) t/a CorEvitas
Gulsah Akin Unal - Collaborator - Health iQ Ltd ( UK ) t/a CorEvitas
Gulum Alamgir - Collaborator - Health iQ Ltd ( UK ) t/a CorEvitas
James Tilbury - Collaborator - Health iQ Ltd ( UK ) t/a CorEvitas
Jay Were - Collaborator - Health iQ Ltd ( UK ) t/a CorEvitas
Gulsah Akin Unal - Collaborator - Health iQ Ltd ( UK ) t/a CorEvitas
HES Accident and Emergency;HES Admitted Patient Care;HES Outpatient;ONS Death Registration Data;Patient Level Index of Multiple Deprivation