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Establishment of a thalassaemia major quality improvement collaborative in Pakistan
  1. Zahra Hoodbhoy1,
  2. Lubaina Ehsan2,
  3. Najveen Alvi1,
  4. Fatimah Sajjad2,
  5. Aleezay Asghar2,
  6. Omair Nadeem2,
  7. Asim Qidwai3,
  8. Shabneez Hussain4,
  9. Erum Hasan5,
  10. Sadaf Altaf1,
  11. Salman Kirmani1,
  12. Babar S Hasan1
  1. 1 Department of Paediatrics and Child Health, Aga Khan University, Karachi, Pakistan
  2. 2 Medical College, Aga Khan University, Karachi, Pakistan
  3. 3 Afzaal Memorial Thalassemia Foundation, Karachi, Pakistan
  4. 4 Laboratory and Clinical Department, Fatimid Foundation, Karachi, Pakistan
  5. 5 Kashif Iqbal Thalassemia Care Center, Karachi, Pakistan
  1. Correspondence to Dr Babar S Hasan, Department of Paediatrics and Child Health, The Aga Khan University, Karachi City 74800, Pakistan; babar.hasan{at}


Objectives The aim of this study was to establish multidisciplinary care for patients with transfusion-dependent thalassaemia (TDT) by creating a TDT quality improvement (QI) collaborative in a resource-constrained setting. This study presents our initial experience of creating this collaborative, the baseline characteristics of the participants, the proposed QI interventions and the outcome metrics of the collaborative.

Design and setting TDT QI collaborative is a database comprising patients with TDT from four centres in Karachi, Pakistan. Study variables included symptoms of cardiac or endocrine dysfunction, physical examination including anthropometry and Tanner staging, chelation therapy, results of echocardiography, T2* cardiac MRI (CMR) and serum ferritin. The main outcome of this collaborative was improvement in TDT-related morbidity and mortality. Interventions addressing the key drivers of outcome were designed and implemented.

Results At the time of reporting, the total number of patients in this database was 295. Most patients reported cardiac symptoms corresponding to New York Heart Association class 2. Approximately half (52%, n=153) of the patients demonstrated severe myocardial iron overload (T2* <10 ms). Majority of the patients (58%, n=175) were not on adequate chelation therapy. There was no difference in echocardiographic measures of systolic and diastolic left ventricle among the different spectrums of iron overloaded myocardium.

Conclusion Using T2* CMR and endocrine testing, we have identified significant burden of iron siderosis in our patients with TDT. Lack of adequate iron load assessment and standardised management was observed. Interventions designed to target these key drivers of outcome are the unique part of this QI-based TDT registry.

  • thalassemia
  • key driver diagram
  • quality improvement

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  • ZH and LE contributed equally.

  • Contributors LE, NA, ON, AQ, SH, EH, SA, SK and BSH were involved in the initial concept and design of this study. ZH, LE, NA, FS, AA, ON, AQ, SH and EH were involved in data collection. ZH, NA, FS, AA, SA, SK and BSH were involved in quality checks for the data. ZH, NA and LE were involved in data analysis and interpretation. All authors contributed to the development and review of the final draft of the manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Ethics approval Ethical approval was obtained from AKUH Ethical Review Committee.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Correction notice This paper has been amended since it was published Online First. The authors noticed that the affiliation of the first and second author were swapped (ie, Zahra Hoodbhoy is affiliated with Department of Paediatrics and Lubaina Ehsan is affiliated with the medical college). Also, the article now notes that the first two authors are joint first authors.

  • Patient consent for publication Not required.