References:

Alberts, N. M., Kang, G., Li, C., Richardson, P. A., Hodges, J., Hankins, J. S., & Klosky, J. L. (2021). Pain in youth with sickle cell disease: A report from the sickle cell clinical research and intervention program. The Clinical Journal of Pain, 37(1), 43-50. https://doi-org/10.1097/ajp.0000000000000889
Alberts, N. M., Gilbert, A., Kang, G., Okhomina, V. I., Flynn, J. S., Hodges, J., Hankins, J. S., & Klosky, J. L. (2024). Agreement between youth and caregiver report of pain and functioning in pediatric sickle cell disease: PedsQL sickle cell disease module. Pain, 165(3), 715–722. https://doi-org/10.1097/j.pain.0000000000003079
Ali, J. S., Andrasik, F., Berlin, K. S., Porter, J., Hankins, J., Anderson, S., & Schreiber, J. E. (2020). Attention difficulties are associated with lower engagement in adult care amongst youth with sickle cell disease. British Journal of Haematology, 189(1), e27–e30. https://doi-org/10.1111/bjh.16421
ArcGIS Pro. 2020. Accessed March 3, 2024 from https://www.esri.com/en-us/arcgis/products/arcgis-pro/overview
Asnani, M. R., Quimby, K. R., Bennett, N. R., & Francis, D. K. (2016). Interventions for patients and caregivers to improve knowledge of sickle cell disease and recognition of its related complications. The Cochrane Database of Systematic Reviews, 10(10), CD011175. https://doi-org/10.1002/14651858.CD011175.pub2
Badawy, S. M., Cronin, R. M., Hankins, J., Crosby, L., DeBaun, M., Thompson, A. A., & Shah, N. (2018). Patient-Centered eHealth Interventions for Children, Adolescents, and Adults With Sickle Cell Disease: Systematic Review. Journal of Medical Internet Research, 20(7), e10940. https://doi-org/10.2196/10940
Ballas, S.K. (2005). Pain Management of Sickle Cell Disease. Hematology/Oncology Clinics, 19(5):785-802. https://doi.org/10.1016/j.hoc.2005.07.008
Barakat L. P., Simon K., Schwartz L. A., & Radcliffe J. (2008). Correlates of pain-rating concordance for adolescents with sickle cell disease and their caregivers. Clinical Journal of Pain, 24, 438-446. https://doi.org/10.1097/ajp.0b013e3181646038
Barton-Gooden, A., Grindley, M., Knight-Madden, J. & Asnani, M. (2019). Gender influences on the health of adolescents with sickle cell disease, Psychology, Health & Medicine, 24:4, 470-480. https://doi-org/10.1080/13548506.2018.1533985
Baskin, M.L., Collins, M.H., Brown, F. Griffith, J.R., ... & Kaslow, N.J. (1998). Psychosocial Considerations in Sickle Cell Disease (SCD): The Transition from Adolescence to Young Adulthood. Journal of Clinical Psychology in Medical Settings, 5, 315–341. https://doi.org/10.1023/A:1026206204009
Bemrich-Stolz, C. J., Halanych, J. H., Howard, T. H., Hilliard, L. M., & Lebensburger, J. D. (2015). Exploring Adult Care Experiences and Barriers to Transition in Adult Patients with Sickle Cell Disease. International Journal of Hematology & Therapy, 1(1), 10.15436/2381-1404.15.003. https://doi-org/10.15436/2381-1404.15.003
Bimpong, K., Thomson, K., Mcnamara, C. L., Balaj, M., Akhter, N., Bambra, C., & Todd, A. (2022). The Gender Pain Gap: gender inequalities in pain across 19 European countries. Scandinavian Journal of Public Health, 50(2), 287–294. https://doi-org/10.1177/1403494820987466
Blake, A., Guthrie-Dixon, N., Grindley, M., Barton-Gooden, A., Knight-Madden, J., & Asnani, M. (2020). Level of agreement between adolescents' self-assessment and parent proxy report of health-related quality of life in adolescents with sickle cell disease. Pediatric Blood & Cancer, 67(4), e28198. https://doi-org/10.1002/pbc.28198
Blinder, M. A., Vekeman, F., Sasane, M., Trahey, A., Paley, C., & Duh, M. S. (2013). Age‐related treatment patterns in sickle cell disease patients and the associated sickle cell complications and healthcare costs. Pediatric Blood & Cancer, 60(5), 828-835. https://doi.org/10.1002/pbc.24459
Blinder, M. A., Duh, M. S., Sasane, M., Trahey, A., Paley, C., & Vekeman, F. (2015). Age-Related Emergency Department Reliance in Patients with Sickle Cell Disease. The Journal of Emergency Medicine, 49(4), 513–522.e1. https://doi.org/10.1016/j.jemermed.2014.12.080
Bonnie, R.J., Stroud, C., & Breiner, H. Investing in the Health and Well-Being of Young Adults. (2015). Chapter 2. Committee on Improving the Health, Safety, and Well-Being of Young Adults; Board on Children, Youth, and Families; Institute of Medicine; National Research Council. Washington (DC): National Academies Press (US).
Brousseau, D. C., Owens, P. L., Mosso, A. L., Panepinto, J. A., & Steiner, C. A. (2010). Acute care utilization and rehospitalizations for sickle cell disease. JAMA, 303(13), 1288–1294. https://doi.org/10.1001/jama.2010.378
Bulgin, D., Tanabe, P., & Jenerette, C. (2018). Stigma of Sickle Cell Disease: A Systematic Review. Issues in Mental Health Nursing, 39(8), 675–686. https://doi-org/10.1080/01612840.2018.1443530
Capone, V., & Petrillo, G. (2014). Patient's Communication Perceived Self-efficacy Scale (PCSS): construction and validation of a new measure in a socio-cognitive perspective. Patient Education and Counseling, 95(3), 340–347. https://doi-org/10.1016/j.pec.2014.03.006
Clayman, M. L., Pandit, A. U., Bergeron, A. R., Cameron, K. A., Ross, E., & Wolf, M. S. (2010). Ask, understand, remember: a brief measure of patient communication self-efficacy within clinical encounters. Journal of Health Communication, 15 (Suppl 2), 72–79. https://doi-org/10.1080/10810730.2010.500349
Cohen, L. L., Vowles, K. E., & Eccleston, C. (2010). Adolescent chronic pain-related functioning: concordance and discordance of mother-proxy and self-report ratings. European Journal of Pain, 14(8), 882–886. https://doi-org/10.1016/j.ejpain.2010.01.005
Collins, P. J., Renedo, A., & Marston, C. A. (2022). Communicating and understanding pain: Limitations of pain scales for patients with sickle cell disorder and other painful conditions. Journal of health psychology, 27(1), 103–118. https://doi-org/10.1177/1359105320944987
Connolly, M. E., Bills, S. E., & Hardy, S. J. (2019). Neurocognitive and psychological effects of persistent pain in pediatric sickle cell disease. Pediatric Blood & Cancer, 66(9), e27823. https://doi-org/10.1002/pbc.27823
Cronin, R.M., Yang, M., Hankins, J.S., J... & Treadwell, M. (2020). Association between hospital admissions and healthcare provider communication for individuals with sickle cell disease. Hematology, 25(1), 229-240. https://doi.org/10.1080/16078454.2020.1780737
Crosby, L. E., Modi, A. C., Lemanek, K. L., Guilfoyle, S. M., Kalinyak, K. A., & Mitchell, M. J. (2009). Perceived barriers to clinic appointments for adolescents with sickle cell disease. Journal of Pediatric Hematology/Oncology, 31(8), 571–576. https://doi.org/10.1097/MPH.0b013e3181acd889
Dampier, C., Palermo, T. M., Darbari, D. S., Hassell, K., Smith, W., & Zempsky, W. (2017). AAPT diagnostic criteria for chronic sickle cell disease pain. The Journal of Pain, 18(5), 490–498. https://doi.org/10.1016/j.jpain.2016.12.016
Derlega, V. J., Janda, L. H., Miranda, J., Chen, I. A., Goodman III, B. M., & Smith, W. (2014). How patients' self-disclosure about sickle cell pain episodes to significant others relates to living with sickle cell disease. Pain Medicine, 15(9), 1496-1507. https://doi.org/10.1111/pme.12535
Derricks, V., Hirsh, A. T., Perkins, A. J., Daggy, J. K., & Matthias, M. S. (2024). Health Care Discrimination Affects Patient Activation, Communication Self-Efficacy, and Pain for Black Americans. The Journal of Pain, 25(12), 104663. https://doi-org/10.1016/j.jpain.2024.104663
Diniz, K. K. S., Pagano, A. S., Fernandes, A. P. P. C., Reis, I. A., Pinheiro Júnior, L. G., & Torres, H. C. (2019). Knowledge of professional healthcare providers about sickle cell disease: Impact of a distance education course. Hematology, Transfusion and Cell Therapy, 41(1), 62–68. https://doi-org/10.1016/j.htct.2018.06.004
Drossman, D. A., Chang, L., Deutsch, J. K., Ford, A. C., Halpert, A., Kroenke, K., Nurko, S., Ruddy, J., Snyder, J., & Sperber, A. (2021). A Review of the Evidence and Recommendations on Communication Skills and the Patient-Provider Relationship: A Rome Foundation Working Team Report. Gastroenterology, 161(5), 1670–1688.e7. https://doi-org/10.1053/j.gastro.2021.07.037
Dyson, S. M., Atkin, K., Culley, L. A., Dyson, S. E., Evans, H., & Rowley, D. T. (2010a). Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school. Social Science & Medicine, 70(12), 2036–2044. https://doi-org./10.1016/j.socscimed.2010.03.010
Dyson, S.M., Abuateya, H., Atkin, K., Culley, L., Dyson, S. E., & Rowley, D. T. (2010b). Reported school experiences of young people with sickle cell disorder in England. British Educational Research Journal, 36(1), 125-142. https://doi.org/10.1080/01411920902878941
Dyson, S. M., Atkin, K., Culley, L. A., Dyson, S. E., & Evans, H. (2011). Sickle cell, habitual dys-positions and fragile dispositions: young people with sickle cell at school. Sociology of Health & Illness, 33(3), 465–483. https://doi-org./10.1111/j.1467-9566.2010.01301.x
Faul, F., Erdfelder, E., Buchner, A., & Lang, A.-G. (2009). Statistical power analyses using G*Power 3.1: Tests for correlation and regression analyses. Behavior Research Methods, 41, 1149-1160. https://doi.org/10.3758/BRM.41.4.1149
Graff, J. C., Hankins, J., Graves, R. J., Robitaille, K. Y., Roberts, R., Cejda, K., Hardy, B. T., Johnson, M., & Porter, J. S. (2012). Exploring family communication about sickle cell disease in adolescence. Journal of Pediatric Oncology Nursing, 29(6), 323–336. https://doi-org/10.1177/1043454212456086
Ha, J. F., & Longnecker, N. (2010). Doctor-patient communication: a review. Ochsner Journal, 10(1), 38–43. PMCID: PMC3096184
Hadjistavropoulos, T., Craig, K. D., Duck, S., Cano, A., Goubert, L., Jackson, P. L., ... & Fitzgerald, T. D. (2011). A biopsychosocial formulation of pain communication. Psychological Bulletin, 137(6), 910. https://psycnet.apa.org/doi/10.1037/a0023876
Hankins, J. S., Estepp, J. H., Hodges, J. R., Villavicencio, M. A., … & Gurney, J. G. (2018). Sickle Cell Clinical Research and Intervention Program (SCCRIP): A lifespan cohort study for sickle cell disease progression from the pediatric stage into adulthood. Pediatric Blood & Cancer, 65(9), e27228. https://doi.org/10.1002/pbc.27228
Haywood, C., Lanzkron, S., Ratanawongsa, N., Bediako, S. M., Lattimer, L., Powe, N. R., & Beach, M. C. (2010a). The association of provider communication with trust among adults with sickle cell disease. Journal of General Internal Medicine, 25, 543-548. https://doi.org/10.1007/s11606-009-1247-7
Haywood Jr, C., Lanzkron, S., Ratanawongsa, N., Bediako, S. M., Lattimer‐Nelson, L., & Beach, M. C. (2010b). Hospital self‐discharge among adults with sickle‐cell disease (SCD): Associations with trust and interpersonal experiences with care. Journal of Hospital Medicine, 5(5), 289-294. https://doi.org/10.1002%2Fjhm.643
Haywood, C., Jr, Lanzkron, S., Hughes, M. T., Brown, R., Massa, M., Ratanawongsa, N., & Beach, M. C. (2011). A video-intervention to improve clinician attitudes toward patients with sickle cell disease: the results of a randomized experiment. Journal of General Internal Medicine, 26(5), 518–523. https://doi-org/10.1007/s11606-010-1605-5
Haywood, J.C., Bediako, S., Lanzkron, S., Diener-West, M., Strouse, J., Haythornthwaite, J., ... & Import Investigators. (2014). An unequal burden: Poor patient–provider communication and sickle cell disease. Patient Education and Counseling, 96(2), 159-164. https://doi.org/10.1016/j.pec.2014.05.013
Hijmans, C. T., Fijnvandraat, K., Grootenhuis, M. A., van Geloven, N., Heijboer, H., Peters, M., & Oosterlaan, J. (2011). Neurocognitive deficits in children with sickle cell disease: a comprehensive profile. Pediatric Blood & Cancer, 56(5), 783–788. https://doi-org/10.1002/pbc.22879
Hoffman, K. M., Trawalter, S., Axt, J. R., & Oliver, M. N. (2016). Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proceedings of the National Academy of Sciences of the United States of America, 113(16), 4296–4301. https://doi.org/10.1073/pnas.1516047113
Holdford, D., Vendetti, N., Sop, D. M., Johnson, S., & Smith, W. R. (2021). Indirect economic burden of sickle cell disease. Value in Health, 24(8), 1095-1101. https://doi-org/10.1016/j.jval.2021.02.014
Hood, A. M., Strong, H., Nwankwo, C., Johnson, Y., Peugh, J., Mara, C. A., Shook, L. M., … & Crosby, L. E. (2021). Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial. JMIR Research Protocols, 10(5), e27650. https://doi-org/10.2196/27650
Howell, K.E., Pugh, N., Longoria, J., Shah, N., ... & Porter, J.S. on behalf of the Sickle Cell Disease Implementation Consortium. (2023). Burden of Aging: Health Outcomes Among Adolescents and Young Adults With Sickle Cell Disease. HemaSphere 7(8), e930. https://doi.org/10.1097/HS9.0000000000000930
Issom, D. Z., Hardy-Dessources, M. D., Romana, M., Hartvigsen, G., & Lovis, C. (2021). Toward a Conversational Agent to Support the Self-Management of Adults and Young Adults With Sickle Cell Disease: Usability and Usefulness Study. Frontiers in Digital Health, 3, 600333. https://doi-org/10.3389/fdgth.2021.600333
Jean-Baptiste, D.M., Wassef, M., Bolyai, S.S., & Jenerette, C. (2022). Individuals with Sickle Cell Disease Using SBAR as a Communication Tool: A Pilot Study. International Journal of Environmental Research and Public Health, 19(21):13817. https://doi.org/10.3390/ijerph192113817
Jenerette, C. M., Brewer, C. A., & Ataga, K. I. (2014). Care seeking for pain in young adults with sickle cell disease. Pain Management Nursing, 15(1), 324–330. https://doi.org/10.1016/j.pmn.2012.10.007
Kahana, E., & Kahana, B. (2003). Patient proactivity enhancing doctor–patient–family communication in cancer prevention and care among the aged. Patient Education and Counseling, 50(1), 67-73. https://doi.org/10.1016/S0738-3991(03)00083-1
Kanter, J., Gibson, R., Lawrence, R.H., Smeltzer, M.P., Pugh, N.L., Glassberg, J., Masese, R.V., King, A.A., Calhoun, C., Hankins, J.S., & Treadwell, M. (2020). Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care. JAMA Network Open, 3(5), e206016. https://doi.org/10.1001/jamanetworkopen.2020.6016
Khan, H., Krull, M., Hankins, J. S., Wang, W. C., & Porter, J. S. (2023). Sickle cell disease and social determinants of health: A scoping review. Pediatric Blood & Cancer, 70(2), e30089. https://doi-org/10.1002/pbc.30089
Kline, R. B. (2013). Beyond Significance Testing Statistics Reform in the Behavioral Sciences (2nd ed.). Washington DC American Psychological Association. Washington, DC.
Kline, R. B. (2016). Principles and practice of structural equation modeling (4th ed.). The Guilford Press. New York, NY.
Keogh E. (2025). Sex, gender, and pain: Evidence and knowledge gaps. Current Opinion in Psychology, 63, 102006. https://doi-org/10.1016/j.copsyc.2025.102006
Liederman, Z., Quartey, N.K., Ward, R., & Papadakos, J. (2021). Exploration of Barriers and Facilitators to Optimal Emergency Department Care of Sickle Cell Disease: Opportunities for Patient–Physician Partnerships to Improve Care. Hemoglobin, 45(1):13-19. https://doi.org/10.1080/03630269.2020.1859383
Longoria, J. N., Heitzer, A. M., Hankins, J. S., Trpchevska, A., & Porter, J. S. (2022). Neurocognitive risk in sickle cell disease: Utilizing neuropsychology services to manage cognitive symptoms and functional limitations. British Journal of Haematology, 197(3), 260–270. https://doi-org/10.1111/bjh.18041
Nathan, R. P., & Adams, C. (1976). Understanding central city hardship. Political Science Quarterly, 91(1), 47-62.
National Heart Lung and Blood Institute (NHLBI). (2023). What is sickle cell disease? Accessed March 3, 2024 from https://www.nhlbi.nih.gov/health/sickle-cell-disease#:~:text=Many%20people%20who%20come%20from,cure%20for%20sickle%20cell%20disease
Matthias, M. S., Parpart, A. L., Nyland, K. A., Huffman, M. A., Stubbs, D. L., Sargent, C., & Bair, M. J. (2010). The patient–provider relationship in chronic pain care: providers' perspectives. Pain Medicine, 11(11), 1688-1697. https://doi.org/10.1111/j.1526-4637.2010.00980.x
Mazor, K. M., Street, R. L., Jr, Sue, V. M., Williams, A. E., Rabin, B. A., & Arora, N. K. (2016). Assessing patients' experiences with communication across the cancer care continuum. Patient Education and Counseling, 99(8), 1343–1348. https://doi-org/10.1016/j.pec.2016.03.004
Mazzocca, K., Langmuir, T., Manan, J., Gagnon, M., & Alberts, N.A. (2025). Journal of Pain. Accepted for publication.
Moser, R. P., Trivedi, N., Murray, A., Jensen, R. E., Willis, G., & Blake, K. D. (2022). Patient-Centered Communication (PCC) scale: Psychometric analysis and validation of a health survey measure. PloS one, 17(12), e0279725. https://doi-org/10.1371/journal.pone.0279725
Mulchan, S. S., Valenzuela, J. M., Crosby, L. E., & Diaz Pow Sang, C. (2016). Applicability of the SMART model of transition readiness for sickle-cell disease. Journal of Pediatric Psychology, 41(5), 543-554. https://doi.org/10.1093/jpepsy/jsv120
Mulchan, S. S., Theriault, C. B., DiVietro, S., Litt, M. D., Sukhera, J., Tanabe, P., Thomas, H. R., Zempsky, W. T., Boruchov, D., & Hirsh, A. T. (2024). Provider Implicit Racial Bias in Pediatric Sickle Cell Disease. Journal of Racial and Ethnic Health Disparities. Advance online publication. https://doi-org/10.1007/s40615-024-02086-x
O'Brien, J. A., Hickman, R. L., Jr, Burant, C., Dolansky, M., & Padrino, S. (2023). Health Literacy, Perceived Stigma, Self-Efficacy, and HRQOL in Sickle Cell Disease. Western Journal of Nursing Research, 45(4), 335–343. https://doi-org/10.1177/01939459221135331
Osunkwo, I., Andemariam, B., Minniti, C. P., Inusa, B. P., El Rassi, F., Francis‐Gibson, B., ... & James, J. (2021). Interference of sickle cell disease on patientsʼ daily lives, symptoms reported, and disease management strategies: Results from the international Sickle Cell World Assessment Survey (SWAY). American Journal of Hematology, 96(4), 404-417. https://doi.org/10.1002/ajh.26063
Panepinto J. A., Hoffmann R. G., Pajewski N. M. (2009). A psychometric evaluation of the PedsQL™ Family Interference Module in parents of children with sickle cell disease. Health and Quality of Life Outcomes, 7(32). Accessed March 3, 2024 from http://www.hqlo.com/content/7/1/32
Piel, F. B., Steinberg, M. H., & Rees, D. C. (2017). Sickle cell disease. New England Journal of Medicine, 376(16), 1561-1573. https://doi.org/10.1056/NEJMra1510865 Pieretti, S., Di Giannuario, A., Di Giovannandrea, R., Marzoli, F., Piccaro, G., Minosi, P., & Aloisi, A. M. (2016). Gender differences in pain and its relief. Annali dell'Istituto superiore di sanita, 52(2), 184–189. https://doi-org.lib-ezproxy.concordia.ca/10.4415/ANN_16_02_09
Pieretti, S., Di Giannuario, A., D i Giannuario, R., Marzoli, F., Piccaro, G., Minosi, P., & Aloisi, A.M. (2016). Gender differences in pain and its relief. Annali dell’lstituto superioire di sanita, 52(2), 184-189. https://doi.org/10.4415?ANN_16_02_09
Pizzo, A., Porter, J. S., Carroll, Y., Burcheri, A., Smeltzer, M. P., Beestrum, M., Nwosu, C., Badawy, S. M., Hankins, J. S., Klesges, L. M., & Alberts, N. M. (2023). Provider prescription of hydroxyurea in youth and adults with sickle cell disease: A review of prescription barriers and facilitators. British Journal of Haematology, 203(5), 712–721. https://doi-org/10.1111/bjh.19099
Plett, R., Eling, C., Tehseen, S., Felton, K., Martin, G., Sheppard, V., Pegg, M., & Sinha, R. (2023). Empowering patients with sickle cell anemia and their families through innovative educational methods. EJHaem, 4(4), 949–955. https://doi-org/10.1002/jha2.760
Poku, B., Caress, A.L., Kirk S. (2018). Adolescents’ experiences of living with sickle cell disease: An integrative narrative review of the literature. International Journal of Nursing Studies, 80, 20-28. https://doi.org/10.1016/j.ijnurstu.2017.12.008
Porter, J. S., Wesley, K. M., Zhao, M. S., Rupff, R. J., & Hankins, J. S. (2017). Pediatric to adult care transition: perspectives of young adults with sickle cell disease. Journal of Pediatric Psychology, 42(9), 1016-1027. https://doi.org/10.1093/jpepsy/jsx088
Porter, J.S., Heitzer A.M., Crosby, L.E., & Hankins, J.S. (2023). Social determinants of health: the next frontier for improving care and outcomes in sickle cell disease. The Lancet Haematology, 10(8):e571-e573. https://doi.org/10.1016/S2352-3026(23)00185-0
Quinn, C. T., Rogers, Z. R., McCavit, T. L., & Buchanan, G. R. (2010). Improved survival of children and adolescents with sickle cell disease. Blood, 115, 3447–3452. https://doi-org/10.1182/blood-2009-07-233700
Reich, J., Cantrell, M.A., & Smeltzer, S. C. (2023). An Integrative Review: The Evolution of Provider Knowledge, Attitudes, Perceptions and Perceived Barriers to Caring for Patients with Sickle Cell Disease 1970–Now. Journal of Pediatric Hematology/Oncology Nursing, 40(1), 43-64. https://doi.org/10.1177/27527530221090179
Renedo, A., Miles, S., Chakravorty, S., Leigh, A., Telfer, P., Warner, J. O., & Marston, C. (2019). Not being heard: barriers to high quality unplanned hospital care during young people's transition to adult services - evidence from 'this sickle cell life' research. BMC Health Services Research, 19(1), 876. https://doi-org/10.1186/s12913-019-4726-5
Ross, D. A., Hinton, R., Melles-Brewer, M., Engel, D., … & Mohan, A. (2020). Adolescent Well-Being: A Definition and Conceptual Framework. The Journal of adolescent health: official publication of the Society for Adolescent Medicine, 67(4), 472–476. https://doi.org/10.1016/j.jadohealth.2020.06.042
Ruta, N.S., & Ballas, S.K. (2016). The Opioid Drug Epidemic and Sickle Cell Disease: Guilt by Association. Pain Medicine, 17(10):1793-1798. https://doi.org/10.1093/pm/pnw074
Saha, S., Freeman, M., Toure, J., Tippens, K. M., Weeks, C., & Ibrahim, S. (2008). Racial and ethnic disparities in the VA health care system: a systematic review. Journal of General Internal Medicine, 23(5), 654–671. https://doi-org/10.1007/s11606-008-0521-4
Sahu, T., Pande, B., Sinha, M., Sinha, R., & Verma, H. K. (2022). Neurocognitive Changes in Sickle Cell Disease: A Comprehensive Review. Annals of Neurosciences, 29(4), 255–268. https://doi-org/10.1177/09727531221108871
Schwartz, L. F., Seidman, L. C., Zeltzer, L. K., & Tsao, J. C. (2013). Mother-child concordance for pain location in a pediatric chronic pain sample. Journal of Pain Management, 6(2), 135–145. PMCID: PMC4580285
Shook, L. M., House, B., Farrell, C. B., Stewart, R., Lanzkron, S., King, A. A., ... & Kanter, J. (2025). Challenges of Engaging Primary Care Providers in Specialized Telementoring Education About Sickle Cell Disease for Sickle Cell Specialists: Results from the Sickle Cell Disease Training and Mentoring Program for Primary Care Providers (STAMP) Project ECHO. AJPM Focus, 4(1), 100304. https://doi.org/10.1016/j.focus.2024.100304
Sickle Cell Awareness Group of Ontario. (2021). Health Equity Gap in Sickle Cell Disease in Ontario, Canada. Accessed March 3, 2024 from https://sicklecellanemia.ca/health-equity-gap-in-sickle-cell-disease-in-ontario-canada
Sickle Cell Disease Collaborators (2023). Global, regional, and national prevalence and mortality burden of sickle cell disease, 2000-2021: a systematic analysis from the Global Burden of Disease Study 2021. The Lancet Haematology, 10(8), e585–e599. https://doi.org/10.1016/S2352-3026(23)00118-7
Sil, S., Cohen, L. L., & Dampier, C. (2016). Psychosocial and Functional Outcomes in Youth With Chronic Sickle Cell Pain. The Clinical Journal of Pain, 32(6), 527–533. https://doi.org/10.1097/AJP.0000000000000289
Sil, S., Cohen, L. L., Bakshi, N., Watt, A., Hathaway, M., Abudulai, F., & Dampier, C. (2020). Changes in pain and psychosocial functioning and transition to chronic pain in pediatric sickle cell disease: a cohort follow-up study. The Clinical Journal of Pain, 36(6), 463-471. https://doi.org/10.1097/AJP.0000000000000827
Smeltzer, M. P., Howell, K. E., Treadwell, M., Preiss, L., King, A. A., Glassberg, J. A., Tanabe, P., Badawy, S. M., DiMartino, L., Gibson, R., Kanter, J., Klesges, L. M., Hankins, J. S., & Sickle Cell Disease Implementation Consortium (2021). Identifying barriers to evidence-based care for sickle cell disease: results from the Sickle Cell Disease Implementation Consortium cross-sectional survey of healthcare providers in the USA. BMJ Open, 11(11), e050880. https://doi-org/10.1136/bmjopen-2021-050880
Smith, L. A., Oyeku, S. O., Homer, C., & Zuckerman, B. (2006). Sickle cell disease: A question of equity and quality. Pediatrics, 117(5), 1763–1770. https://doi.org/10.1542/peds.2005-1611
Smith, W. R., Penberthy, L. T., Bovbjerg, V. E., McClish, D. K., Roberts, J. D., Dahman, B., Aisiku, I. P., Levenson, J. L., & Roseff, S. D. (2008). Daily assessment of pain in adults with sickle cell disease. Annals of Internal Medicine, 148(2), 94–101. https://doi.org/10.7326/0003-4819-148-2-200801150-00004
Sun, K., Eudy, A. M., Criscione-Schreiber, L. G., Sadun, R. E., Rogers, J. L., Doss, J., Corneli, A. L., Bosworth, H. B., & Clowse, M. E. B. (2021). Racial Differences in Patient-provider Communication, Patient Self-efficacy, and Their Associations With Systemic Lupus Erythematosus-related Damage: A Cross-sectional Survey. The Journal of Rheumatology, 48(7), 1022–1028. https://doi-org/10.3899/jrheum.200682
Thomas, V. J., & Taylor, L. M. (2002). The psychosocial experience of people with sickle cell disease and its Interference on quality of life: Qualitative findings from focus groups. British Journal of Health Psychology, 7(3), 345-363. https://doi.org/10.1348/135910702760213724
Varni, J. W., & Panepinto, J. A. (2020). Cognitive functioning, patient health communication, and worry mediate pain predictive effects on health‐related quality of life in youth with sickle cell disease. Pediatric Blood & Cancer, 67(11), e28680. https://doi.org/10.1002/pbc.28680
Viola, A.S., Porter, J, Shipman, J., Brooks, E., & Valrie, C. (2021a). A scoping review of transition interventions for young adults with sickle cell disease. Pediatric Blood & Cancer, 68(9):e29135. https://doi.org/10.1002/pbc.29135
Viola, A.S., Levonyan-Radloff, K., Drachtman, R., et al. (2021b). Understanding barriers to transition from pediatric to adult care among young adults with sickle cell disease to develop a transition mentor program. Clinical Practice in Pediatric Psychology, 9(1):68-81. https://doi.org/10.1037/cpp0000372
White, R.O., Chakkalakal, R.J., Presley, C.A., Bian, A., Schildcrout, J.S., Wallston, K.A., et al. (2016). Perceptions of Provider Communication Among Vulnerable Patients With Diabetes: Influences of Medical Mistrust and Health Literacy. Journal of Health Communication, 21(sup2):127–34. https://doi-org/10.1080/10810730.2016.1207116
Williams, T. N., Mwangi, T. W., Wambua, S., Alexander, N. D., Kortok, M., Snow, R. W., & Marsh, K. (2005). Sickle cell trait and the risk of Plasmodium falciparum malaria and other childhood diseases. The Journal of Infectious Diseases, 192(1), 178–186. https://doi.org/10.1086/430744
Wright, K., & Adeosun, O. (2009). Barriers to effective pain management in sickle cell disease. British Journal of Nursing, 18(3), 158-160. https://doi.org/10.12968/bjon.2009.18.3.39043
Yearby, R. (2018). Racial disparities in health status and access to healthcare: the continuation of inequality in the United States due to structural racism. American Journal of Economics and Sociology, 77(3-4), 1113-1152. https://doi-org/10.1111/ajes.12230