PR MS Registry: MS Disability Survey

Background:  Multiple sclerosis (MS) has a high incidence and prevalence in Puerto Rico (PR) with 6.3 and 70.1 per 100,000 respectively. The PRMS registry has been instrumental in the acquisition of data for the characterization of MS in PR. Law 85 was passed and it states that every physician authorized to practice medicine in PR has to register all their patients, with patient consent, to the PRMS registry. This law facilitates investigative progress of MS in Hispanics. Some of the data the registry offers sheds light on disability trends. This information can aid government agencies in acquiring the correct funds to better serve these patients.

Objectives: Evaluate disability trends in Hispanics with MS.

Methods: The PR MS Registry collects data from all diagnosed Puerto Rican MS patients living on the island. A self-reported questionnaire consisting of clinical, demographic, and diagnostic data is collected from each patient. Clinical data is obtained from a neurologist and MS diagnosis is confirmed using the revised 2010 McDonald criteria. Data was analyzed using descriptive statistical analysis.   

Results: MS subtype was analyzed for 1168 patients. Relapsing Remitting was 73.03%, Secondary Progressive was 21.06%, Primary Progressive was 0.68%, Clinically Isolated Syndrome was 4.71%, Resonance Imaging Syndrome and Tumefactive were both 0.26%. EDSS scores were analyzed for 1078 MS patients.  Patients with EDSS 3 were 62.62%, 6 were 21.61%, 6.5 were 15.77%. Walking aid assistance was observed for 1515 patients. 60.86% of patients did not require walking aid, 30.69% of patients were currently using walking aid, and 8.45% had past use. Employment status for 1665 patients was analyzed. Working patients amounted to 36.64%, disabled 26.85%, retired 10.21%, housewife 13.51%, unemployed 8.59%, and student 5.53%.

Conclusions: The PRMS registry, enforced by Law 85, can be used to establish disability factors for MS patients. This data shows that there is a high percentage of these patients that are disabled and thus require governmental aid. Many of these individuals require or have required walking aid assistance and many of them (21.74%) are in a progressive form of the disease. This data shows the importance of the PRMS registry and how it can help establish disability and working status trends.