Are people getting quality thalassemia care in twin cities of Pakistan? A comparison with international standards

Abstract

Objectives: This study was conducted to determine if thalassemia patients were getting quality care in Rawalpindi and Islamabad, Pakistan, as per international standards and to identify determinants for better quality of thalassemia care. Design: A cross sectional study was conducted using interview based structured questionnaire, which was developed using standards of thalassemia care used by International Thalassemia Foundation. Setting: Five healthcare facilities catering to the needs of thalassemia patients in Rawalpindi and Islamabad, Pakistan. Participants: Data were collected from 315 thalassemia patients from May to August, 2016. Main outcome measure: Survey data on quality indicators. Results: Results showed that almost half of thalassemia patients (48.5%) were getting poor quality of care. On average patients were getting only 63.93% of possible quality care for the disease. The most deficient quality area was management of complications where patients were getting only 49.1% of possible care. Better quality of care was likely to be received by those patients who were educated, patients with educated fathers, those visiting private facilities and those who were visiting facilities in Islamabad. Those with concomitant diseases were also likely to receive better care. Conclusion: Quality of care provided to thalassemia patients was well below the international standards for the care of thalassemia. There is a need to take urgent action to improve quality of care in the country.