Siwaar Abouhala

All Publications

• Facilitators and Barriers to Health Research Knowledge and Participation Among Arab/Middle Eastern and North African (MENA) Patients in the US. Journal of community health Abouhala, S., Abdulle, A., Zanial, N., Aziz, G., Hussein, A., Stiffler, M. J., Hawa, R., Tariq, M., Ady, G., Shalabi, I., Awad, G. H., Abuelezam, N. N. 2024

  Abstract

  Research examining Arab and Middle Eastern and North African (MENA) health disparities faces several research limitations. These obstacles include unrepresentative national data due to the absence of a MENA identifier on the US Census, and a lack of Arab/MENA American participant trust in surveying bodies. This research hesitancy prompts the need for targeted investigation of the barriers preventing Arab/MENA Americans from participating in health research. Using community- and patient-centered methods, we created and disseminated a patient-facing survey to identify barriers to Arab/MENA American research participation. Through regular meetings and collaboration with stakeholders on research instrument development and participant recruitment, a novel quantitative survey was created (April-May 2023) to identify barriers affecting Arab/MENA American participation in health research and to explore their experiences and opportunities for improvement in the healthcare sector. The survey instruments assessed interest in research, as well as the motivators and barriers to clinical research participation. The data were analyzed quantitatively using descriptive statistics and logistic regression models. A total of 149 respondents had non-missing values on both outcomes. The study sample was largely college educated and foreign-born. Over three quarters of respondents (77.5%) felt they knew what health research was while slightly less than three quarter of respondents (72.5%) would accept to participate in a health research study in the future. Those who were foreign-born, in lower income levels (<$65k), or had low English proficiency or acculturation were less likely to report knowing what health research was. Facilitators to participating in research included a belief that participation would improve health, the idea of contributing to science, if monetary compensation was available, and if participation could be withdrawn at any time. These data further enhance our knowledge of Arab/MENA American comfortability with health research participation and can help inform future interventions. Immigration and sociodemographic factors are related to knowledge and willingness to participate as are several ideals including a desire to improve community health.

  View details for DOI 10.1007/s10900-024-01423-9

  View details for PubMedID 39681793

• "Our Voices Will Get Louder": A Qualitative Exploration of Factors Influencing Arab/Middle Eastern North African (MENA) American Patient Participation in US-Based Health Care and Health Research. Journal of racial and ethnic health disparities Abouhala, S., Abdulle, A., Aziz, G., Hussein, A., Zanial, N., Shalabi, I., Stiffler, M. J., Hawa, R., Tariq, M., Ady, G., Awad, G. H., Abuelezam, N. N. 2024

  Abstract

  BACKGROUND: Heightened anti-Arab/Middle Eastern and North African (MENA) xenophobia in the United States (US) coupled with the addition of a MENA category on the next US Census call into attention the health needs of this minoritized population. Targeted research is needed to better understand the factors that influence Arab/MENA American participation in US-based health research and health care.METHODS: A novel qualitative interview guide was constructed to better understand the health research experiences, health care experiences and needs of Arab/MENA patients nationally. Patients were recruited through the Arab American Health Network Alliance (AAHNA) community connections. Semi-structured interviews were conducted virtually in English and Arabic, and qualitative data was interpreted through iterative thematic analysis using inductive reasoning.RESULTS: A total of seventeen interviews (n=17) were completed (14 in English, 3 in Arabic). Notably, the majority identified as female (82%) and have resided in the US for 18years or longer (53%). Three main themes were identified (1) Individual-level Comfortability and Access to Research Participation, (2) Advancing Community Health Outcomes and Participation, and (3) Structural Barriers as Drivers of Health Disparities.CONCLUSION: The health research and health care experiences explored in this project have the potential of informing future inquiries on Arab/MENA American health. For instance, we suggest building community trust, providing equitable compensation and support, increasing health workforce diversity, and advocating for affordable health care, all to improve Arab/MENA patient participation in health research.

  View details for DOI 10.1007/s40615-024-02255-y

  View details for PubMedID 39653989

• Beyond the exome: What's next in diagnostic testing for Mendelian conditions. American journal of human genetics Wojcik, M. H., Reuter, C. M., Marwaha, S., Mahmoud, M., Duyzend, M. H., Barseghyan, H., Yuan, B., Boone, P. M., Groopman, E. E., Délot, E. C., Jain, D., Sanchis-Juan, A., Starita, L. M., Talkowski, M., Montgomery, S. B., Bamshad, M. J., Chong, J. X., Wheeler, M. T., Berger, S. I., O'Donnell-Luria, A., Sedlazeck, F. J., Miller, D. E. 2023; 110 (8): 1229-1248

  Abstract

  Despite advances in clinical genetic testing, including the introduction of exome sequencing (ES), more than 50% of individuals with a suspected Mendelian condition lack a precise molecular diagnosis. Clinical evaluation is increasingly undertaken by specialists outside of clinical genetics, often occurring in a tiered fashion and typically ending after ES. The current diagnostic rate reflects multiple factors, including technical limitations, incomplete understanding of variant pathogenicity, missing genotype-phenotype associations, complex gene-environment interactions, and reporting differences between clinical labs. Maintaining a clear understanding of the rapidly evolving landscape of diagnostic tests beyond ES, and their limitations, presents a challenge for non-genetics professionals. Newer tests, such as short-read genome or RNA sequencing, can be challenging to order, and emerging technologies, such as optical genome mapping and long-read DNA sequencing, are not available clinically. Furthermore, there is no clear guidance on the next best steps after inconclusive evaluation. Here, we review why a clinical genetic evaluation may be negative, discuss questions to be asked in this setting, and provide a framework for further investigation, including the advantages and disadvantages of new approaches that are nascent in the clinical sphere. We present a guide for the next best steps after inconclusive molecular testing based upon phenotype and prior evaluation, including when to consider referral to research consortia focused on elucidating the underlying cause of rare unsolved genetic disorders.

  View details for DOI 10.1016/j.ajhg.2023.06.009

  View details for PubMedID 37541186