Improved Quality of Life for SCD Patients

The Greater Milwaukee Foundation funds this project.

A Study of Lifestyle Pain and Medication Management for Improved Quality of Life for SCD Patients

Alaafia is embarking on an ambitious research endeavor aimed at deepening our understanding of sickle cell disease and its impact on patients’ lives in Wisconsin. This initiative is set to employ a dual-faceted strategy to gather comprehensive insights directly from those living with sickle cell disease.

The research will kick off with the distribution of three detailed surveys to the sickle cell community, inviting participants to share insights on various aspects of their lives. These surveys will cover topics such as personal background, income levels, daily routines, approaches to medication and pain management, healthcare experiences, and personal goals related to managing their condition. Following the survey phase, Alaafia will organize group discussions to facilitate a shared analysis of the collected experiences.

The project will then select ten individuals for a seven-day detailed study based on the survey data. This segment will focus on understanding sickle cell patients’ day-to-day challenges and lifestyle practices through in-depth, individual interviews conducted by our research team.

In the final phase of the research, a select group of ten participants will be closely observed by expert researchers.

This study aims to gain a clearer picture of how individuals manage their pain medication and daily routines amidst the realities of living with sickle cell disease, both in controlled and everyday environments.

This comprehensive research project is poised to illuminate the everyday realities and struggles sickle cell patients face.

By capturing and analyzing these lived experiences, Alaafia aims to catalyze improvements in healthcare services and foster a better quality of life for individuals with sickle cell disease in Wisconsin. Through this initiative, we are committed to uncovering the pathways to healthier, more fulfilling lives for sickle cell patients, guided by real-world insights and data.