Establishing Initial Data and Assessing the Feasibility of a Community Collaborative to Improve Adherence to Essential Management in Beta-Thalassemia Patients in Pune, India

Abstract

There are several large endogamous communities in the city of Pune, India that have a high prevalence of β-thalassemia major, which has led to local efforts to address the medical and psychosocial burden of the disease. Essential medical management of β-thalassemia major includes periodic blood transfusions, iron chelation therapy, and routine tests to monitor for secondary complications. Adherence to essential medical management, is an important aspect of tertiary prevention as it can significantly reduce morbidity and mortality. and improve quality of life of affected individuals. Multidimensional and multilevel conceptualizations of adherence posit that apart from patient-related factors, adherence behavior is influenced by opportunities and constraints at various ecological levels and additional dimensions. Also, the World Health Organization posits that links between organizations across sectors is an essential health system building block for tertiary prevention of chronic conditions. With this in mind, the overall aim of this dissertation was to establish initial data that can contribute towards the improvement of adherence to essential management through strategic cross-sector collaboration, for the thalassemia community in Pune. Specific aims include: 1) Identifying contextual multidimensional and multilevel factors that influence adherence to essential management, 2) Determining the degree of connectivity between cross-sector stakeholder organizations that influence adherence to essential management, identifying key players in the network, and characterizing perceptions regarding interorganizational collaboration, and 3) Assessing the feasibility of using the Collective Impact approach to foster structured cross-sector collaboration to improve adherence to essential management. Specific aim 1 was achieved through in-depth interviews with 49 patients, caregivers, and key informants. Specific aim 2 was achieved through administration of a network survey to representatives of 43 stakeholder organizations and in-depth interviews with 3 influential informants. Specific aim 3 was achieved through a guided assessment using the Collective Impact Feasibility Framework, and findings from all prior interviews and the network survey. Deductive content analysis of interviews conducted as part of specific aim 1 revealed 150 multidimensional and multilevel opportunities and constraints that influenced adherence to essential management. While most of the findings were supported by prior studies, some of them were unique to our study since no prior studies related to thalassemia had used a multidimensional and multilevel orientation to identify adherence-influencing opportunities and constraints to all aspects of essential management. Opportunities and constraints were conceptualized as having a cascading influence, where they worked synergistically or against each other to influence adherence to essential management; this can serve as foundational data for multifactorial interventions in the future. The findings can also be disseminated to multilevel stakeholders to inform current practice patterns, organizational protocols, and policymaking. Social network analysis of the network surveys administered as part of specific aim 2 revealed that only a small proportion of connections existed between organizations within sectors and across sectors, indicating scope for network strengthening. Influential informant interviews revealed six barriers that might explain these findings. Encouragingly, most existing connections consisted of multiple relational ties and were therefore strong. Based on their positions within the network, seven organizations were identified that could be considered as strategic partners for network strengthening interventions. Findings from all interviews and surveys revealed that poor adherence to essential management was a social problem of significant scale and complexity since it affected a majority of thalassemia patients, and was influenced by multidimensional and multilevel opportunities and constraints. Many of the constraints could be addressed by cross-sector collaboration, but as per findings from specific aims 1 and 2, the system was found to be broken, disconnected and fragmented. All these aspects of the problem suggest that Collective Impact is an appropriate approach to address this problem. However, readiness of the community to adopt this approach must be increased. This can be done by garnering buy-in of all influential champions, exploring collaborative-based funding models, building trust between organizations, and creating a sense of urgency around the problem. Once the community is ready to adopt the approach, findings from our study can also contribute towards the initiation phase of a Collective Impact initiative, which involves using data to make a case for change, identifying key issues and gaps, and facilitating community outreach.