Information Technology-Assisted Treatment Planning and Performance Assessment for Severe Thalassemia Care in Low- and Middle-Income Countries: Observational Study

Rajat Kumar Agarwal; Amit Sedai; Kumari Ankita; Lalith Parmar; Rakesh Dhanya; Sunil Dhimal; Reshma Sriniwas; Ashwini Gowda; Pooja Gujjal; Pushpa H; Suman Jain; J Dasaratha Ramaiah; Sujata Jali; Neelavva Rayappa Tallur; Stalin Ramprakash; Lawrence Faulkner

doi:10.2196/medinform.9291

Information Technology-Assisted Treatment Planning and Performance Assessment for Severe Thalassemia Care in Low- and Middle-Income Countries: Observational Study

JMIR Med Inform. 2019 Jan 23;7(1):e9291. doi: 10.2196/medinform.9291.

Authors

Rajat Kumar Agarwal^{1

2}, Amit Sedai^{1

2}, Kumari Ankita^{1

2}, Lalith Parmar^{1

2}, Rakesh Dhanya², Sunil Dhimal¹, Reshma Sriniwas³, Ashwini Gowda³, Pooja Gujjal⁴, Pushpa H^{2

4}, Suman Jain⁵, J Dasaratha Ramaiah⁶, Sujata Jali⁷, Neelavva Rayappa Tallur⁷, Stalin Ramprakash⁸, Lawrence Faulkner^{2

9}

Affiliations

¹ Jagriti InnoHealth Platforms Private Ltd, Bangalore, India.
² Sankalp India Foundation, Bangalore, India.
³ Project Samraksha, Rashtrotthana Parishat, Bangalore, India.
⁴ Indira Gandhi Institute of Child Health, Bangalore, India.
⁵ Thalassemia and Sickle Cell Society, Hyderabad, India.
⁶ Rural Development Trust Hospital, Ananthpur, India.
⁷ Jawaharlal Nehru Medical College, Belgaum, India.
⁸ Sankalp-People Tree Centre for Pediatric Bone Marrow Transplant, People Tree Hospitals, Bangalore, India.
⁹ Cure2Children Foundation, Florence, Italy.

Abstract

Background: Successful models of information and communication technology (ICT) applied to cost-effective delivery of quality care in low- and middle-income countries (LMIC) are an increasing necessity. Severe thalassemia is one of the most common life-threatening noncommunicable diseases of children globally.

Objective: The aim was to study the impact of ICT on quality of care for severe thalassemia patients in LMIC.

Methods: A total of 1110 patients with severe thalassemia from five centers in India were followed over a 1-year period. The impact of consistent use of a Web-based platform designed to assist comprehensive management of severe thalassemia (ThalCare) on key indicators of quality of care such as minimum (pretransfusion) hemoglobin, serum ferritin, liver size, and spleen size were assessed.

Results: Overall improvements in initial hemoglobin, ferritin, and liver and spleen size were significant (P<.001 for each). For four centers, the improvement in mean pretransfusion hemoglobin level was statistically significant (P<.001). Four of five centers achieved reduction in mean ferritin levels, with two displaying a significant drop in ferritin (P=.004 and P<.001). One of the five centers did not record liver and spleen size on palpation, but of the remaining four centers, two witnessed a large drop in liver and spleen size (P<.01), one witnessed moderate drop (P=.05 for liver; P=.03 for spleen size), while the fourth witnessed a moderate increase in liver size (P=.08) and insignificant change in spleen size (P=.12).

Conclusions: Implementation of computer-assisted treatment planning and performance assessment consistently and positively impacted indexes reflecting effective delivery of care to patients suffering from severe thalassemia in LMIC.

Keywords: health information technologies; health planning; patient outcome assessment; β-thalassemia major.

©Rajat Kumar Agarwal, Amit Sedai, Kumari Ankita, Lalith Parmar, Rakesh Dhanya, Sunil Dhimal, Reshma Sriniwas, Ashwini Gowda, Pooja Gujjal, Pushpa H, Suman Jain, J Dasaratha Ramaiah, Sujata Jali, Neelavva Rayappa Tallur, Stalin Ramprakash, Lawrence Faulkner. Originally published in JMIR Medical Informatics (http://medinform.jmir.org), 23.01.2019.