• Hafsa Majid, Lena Jafri, Zeba Zulfiqar Ali, and Bushra Afroze.
• Dr. Hafsa Majid, FCPS. Section of Chemical Pathology, Department of Pathology and Laboratory Medicine, Aga Khan University, Stadium Road, P.O. Box 3500. Karachi 74800, Pakistan.
• Pak J Med Sci. 2021 Nov 1; 37 (7): 1896-1901.

ObjectiveThis study was done to determine the factors responsible for non-treatment of inherited metabolic disorders (IMDs) requiring food for special medical purposes (FSMPs) in Pakistan.MethodsA descriptive cross-sectional study was conducted by Departments of Pediatrics & Child Health and Pathology & Laboratory Medicine, Aga Khan University. Patients diagnosed with IMDs from January 2013 to December 2016 requiring FSMPs were surveyed after a year of initial diagnosis to collect the details of treatment advised, mortality status, and reasons of non-treatment, including not prescribed by physician, non-acceptance by family, non-availability or non-affordability.ResultsOver four years period, 311 patients were identified with IMDs; Median age of patients was 1.0 yrs (0.0.2-3.65) with 54% (n=168) being male. Of the total 38.2% (n=119) required FSMPs, 9% (n=28) patients were excluded due to unavailability of diagnostics information. Parents of 58 patients requiring FSMPs out of 119 participated in survey. The leading causes of non-treatment were, FSMPs not prescribed by physicians (n= 30, 51.7%) followed by non-affordability (n=23, 39.6%), families' unacceptance in (n=9, 18%) patients, non-availability of FSMPs (n=2, 3.4%) and early death of patient (n=1, 1.7%).ConclusionThe main factors responsible for non-treatment of FSMPs requiring IMDs were non-prescription by physician and non-affordability.Copyright: © Pakistan Journal of Medical Sciences.

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