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Start Over Author "Chen, Yumei" Publication Type Academic Journals
764 results on '"Chen, Yumei"'

11. An evaluation of patient-reported outcomes in sickle cell disease within a conceptual model

Author

Treadwell, Marsha J, Mushiana, Swapandeep, Badawy, Sherif M, Preiss, Liliana, King, Allison A, Kroner, Barbara, Chen, Yumei, Glassberg, Jeffrey, Gordeuk, Victor, Shah, Nirmish, Snyder, Angela, and Wun, Theodore

Subjects
Health Sciences, Mind and Body, Mental Health, Rare Diseases, Hematology, Sickle Cell Disease, Clinical Research, Behavioral and Social Science, Chronic Pain, Pain Research, Neurosciences, Adolescent, Adult, Anemia, Sickle Cell, Humans, Middle Aged, Pain, Patient Reported Outcome Measures, Quality of Life, Surveys and Questionnaires, Young Adult, Patient-reported outcome measures, Sickle cell disease, Implementation science, Models-biopsychosocial, Sickle Cell Disease Implementation Consortium, Models—biopsychosocial, Public Health and Health Services, Psychology, Health Policy & Services, Health sciences, Human society
Abstract

PurposeTo examine the relations between patient-reported outcomes (PROs) within a conceptual model for adults with sickle cell disease (SCD) ages 18 - 45 years enrolled in the multi-site Sickle Cell Disease Implementation Consortium (SCDIC) registry. We hypothesized that patient and SCD-related factors, particularly pain, and barriers to care would independently contribute to functioning as measured using PRO domains.MethodsParticipants (N = 2054) completed a 48-item survey including socio-demographics and PRO measures, e.g., social functioning, pain impact, emotional distress, and cognitive functioning. Participants reported on lifetime SCD complications, pain episode frequency and severity, and barriers to healthcare.ResultsHigher pain frequency was associated with higher odds of worse outcomes in all PRO domains, controlling for age, gender and site (OR range 1.02-1.10, 95% CI range [1.004-1.12]). Reported history of treatment for depression was associated with 5 of 7 PRO measures (OR range 1.58-3.28 95% CI range [1.18-4.32]). Fewer individual barriers to care and fewer SCD complications were associated with better outcomes in the emotion domain (OR range 0.46-0.64, 95% CI range [0.34-0.86]).ConclusionsStudy results highlight the importance of the biopsychosocial model to enhance understanding of the needs of this complex population, and to design multi-dimensional approaches for providing more effective interventions to improve outcomes.

Published
2022

33. What does it mean to be affiliated with care?: Delphi consensus on the definition of "unaffiliation" and "specialist" in sickle cell disease.

Author

Lamont, Andrea E, Hsu, Lewis L, Jacobs, Sara, Gibson, Robert, Treadwell, Marsha, Chen, Yumei, Lottenberg, Richard, Axelrod, Kathleen, Varughese, Taniya, Melvin, Cathy, Smith, Sharon, Chukwudozie, Ifeanyi Beverly, and Kanter, Julie

Subjects
Health Services and Systems, Health Sciences, Sickle Cell Disease, Chronic Pain, Rare Diseases, Hematology, Clinical Research, Health Services, Pain Research, Health and social care services research, 8.1 Organisation and delivery of services, Humans, Consensus, Delphi Technique, Anemia, Sickle Cell, Hydroxyurea, Blood Transfusion, Sickle Cell Disease Implementation Consortium, General Science & Technology
Abstract

Accruing evidence reveals best practices for how to help individuals living with Sickle Cell Disease (SCD); yet, the implementation of these evidence-based practices in healthcare settings is lacking. The Sickle Cell Disease Implementation Consortium (SCDIC) is a national consortium that uses implementation science to identify and address barriers to care in SCD. The SCDIC seeks to understand how and why patients become unaffiliated from care and determine strategies to identify and connect patients to care. A challenge, however, is the lack of agreed-upon definition for what it means to be unaffiliated and what it means to be a "SCD expert provider". In this study, we conducted a Delphi process to obtain expert consensus on what it means to be an "unaffiliated patient" with SCD and to define an "SCD specialist," as no standard definition is available. Twenty-eight SCD experts participated in three rounds of questions. Consensus was defined as 80% or more of respondents agreeing. Experts reached consensus that an individual with SCD who is unaffiliated from care is "someone who has not been seen by a sickle cell specialist in at least a year." A sickle cell specialist was defined as someone with knowledge and experience in SCD. Having "knowledge" means: being knowledgeable of the 2014 NIH Guidelines, "Evidence-Based Management of SCD", trained in hydroxyurea management and transfusions, trained on screening for organ damage in SCD, trained in pain management and on SCD emergencies, and is aware of psychosocial and cognitive issues in SCD. Experiences that are expected of a SCD specialist include experience working with SCD patients, mentored by a SCD specialist, regular attendance at SCD conferences, and obtains continuing medical education on SCD every 2 years." The results have strong implications for future research, practice, and policy related to SCD by helping to lay a foundation for an new area of research (e.g., to identify subpopulations of unaffiliation and targeted interventions) and policies that support reaffiliation and increase accessibility to quality care.

Published
2022

34. Perspectives of individuals with sickle cell disease on barriers to care

Author

Phillips, Shannon, Chen, Yumei, Masese, Rita, Noisette, Laurence, Jordan, Kasey, Jacobs, Sara, Hsu, Lewis L, Melvin, Cathy L, Treadwell, Marsha, Shah, Nirmish, Tanabe, Paula, and Kanter, Julie

Subjects
Health Services and Systems, Health Sciences, Health Services, Hematology, Prevention, Sickle Cell Disease, Rare Diseases, Clinical Research, Health and social care services research, 8.1 Organisation and delivery of services, Good Health and Well Being, Anemia, Sickle Cell, Emergency Service, Hospital, Health Services Accessibility, Hospitalization, Humans, United States, General Science & Technology
Abstract

IntroductionSickle cell disease (SCD) is an inherited hemoglobinopathy that predominantly affects African Americans in the United States. The disease is associated with complications leading to high healthcare utilization rates, including emergency department (ED) visits and hospitalizations. Optimal SCD care requires a multidisciplinary approach involving SCD specialists to ensure preventive care, minimize complications and prevent unnecessary ED visits and hospitalizations. However, most individuals with SCD receive sub-optimal care or are unaffiliated with care (have not seen an SCD specialist). We aimed to identify barriers to care from the perspective of individuals with SCD in a multi-state sample.MethodsWe performed a multiple methods study consisting of surveys and interviews in three comprehensive SCD centers from March to June 2018. Interviews were transcribed and coded, exploring themes around barriers to care. Survey questions on the specific themes identified in the interviews were analyzed using summary statistics.ResultsWe administered surveys to 208 individuals and conducted 44 in-depth interviews. Barriers to care were identified and classified according to ecological level (i.e., individual, family/interpersonal, provider, and socio-environmental/organizational level). Individual-level barriers included lack of knowledge in self-management and disease severity. Family/interpersonal level barriers were inadequate caregiver support and competing life demands. Provider level barriers were limited provider knowledge, provider inexperience, poor provider-patient relationship, being treated differently, and the provider's lack of appreciation of the patient's SCD knowledge. Socio-environmental/organizational level barriers included limited transportation, lack of insurance, administrative barriers, poor care coordination, and reduced access to care due to limited clinic availability, services provided or clinic refusal to provide SCD care.ConclusionParticipants reported several multilevel barriers to SCD care. Strategies tailored towards reducing these barriers are warranted. Our findings may also inform interventions aiming to locate and link unaffiliated individuals to care.

Published
2022

45. Effect of the tyrosine kinase inhibitors on the growth in children with Philadelphia chromosome–positive acute lymphoblastic leukemia: a case–control study

Author

Cai, Jiaoyang, Liu, Hu, Chen, Yumei, Yu, Jie, Gao, Ju, Jiang, Hua, Zhai, Xiaowen, Ju, Xiuli, Wu, Xuedong, Wang, Ningling, Tian, Xin, Liang, Changda, Fang, Yongjun, Zhou, Fen, Li, Hong, Sun, Lirong, Yang, Liangchun, Guo, Jing, Liu, Aiguo, Li, Chi-kong, Zhu, Yiping, Tang, Jingyan, Yang, Jun J., Shen, Shuhong, Cheng, Cheng, and Pui, Ching-Hon

Published
2023
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