Maya Doyle
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View article: Perspectives: Mental health challenges and medical trauma: focus on cystinosis patients and caregivers
Perspectives: Mental health challenges and medical trauma: focus on cystinosis patients and caregivers Open
As the lifespan of cystinosis patients extends, mental health issues increasingly impact both patients and their caregivers. The emotional journey for patients and “raregivers” has been mapped, providing a valuable guide across a patient's…
View article: Addressing challenges in diagnosis and management of rare disease through interprofessional education
Addressing challenges in diagnosis and management of rare disease through interprofessional education Open
Rare diseases represent a significant public health challenge due to their complexity and lack of resources. One way to improve care for patients with rare disease is to educate healthcare professionals on the diverse and unique needs of p…
View article: Vertical Integration in the Pediatrics Clerkship: A Case Study
Vertical Integration in the Pediatrics Clerkship: A Case Study Open
Since the end of the twentieth century, medical educators continue to review and call for changes that will improve how medical students apply their knowledge of basic sciences to the clinical management of their patients. The traditional …
View article: Transition Navigator Intervention improves transition readiness to adult care and addresses barriers for youth with Sickle Cell Disease
Transition Navigator Intervention improves transition readiness to adult care and addresses barriers for youth with Sickle Cell Disease Open
Background Adolescents and young adults (AYA) with Sickle Cell Disease (SCD) experience especially high rates of acute care utilization and increased morbidity, due in part to disease exacerbation and in part to the developmental challenge…
View article: Utilizing Change Leadership Within Social Work Education to Prioritize and Expand Interprofessional Education in a University Setting
Utilizing Change Leadership Within Social Work Education to Prioritize and Expand Interprofessional Education in a University Setting Open
Interprofessional education (IPE) is a critical educational component for promoting the quadruple aim of health care. Additionally, interprofessional practice (IP) is included in the Council on Social Work Education’s (CSWE) educational st…
View article: Clinical trial readiness study of distal myopathy and dysphagia in nephropathic cystinosis
Clinical trial readiness study of distal myopathy and dysphagia in nephropathic cystinosis Open
Background Nephropathic cystinosis is a lysosomal storage disorder with late‐onset systemic complications, such as myopathy and dysphagia. Currently employed outcome measures lack sensitivity and responsiveness for dysphagia and myopathy, …
View article: Giving Credence to the Experience of X-Linked Hypophosphatemia in Adulthood: An Interprofessional Mixed-Methods Study
Giving Credence to the Experience of X-Linked Hypophosphatemia in Adulthood: An Interprofessional Mixed-Methods Study Open
While new treatments may ease the burden of disease for adults with XLH, further research, increased provider awareness and education, and further development of standards of care are needed to promote accurate and adequate assessment and …
View article: Clinical myopathy in patients with nephropathic cystinosis
Clinical myopathy in patients with nephropathic cystinosis Open
Background Nephropathic cystinosis is a lysosomal storage disorder. Patient survival years after renal transplantation has revealed systemic complications including distal myopathy and dysphagia. Methods We evaluated 20 adult patients with…
View article: An EAACI task force report: recognising the potential of the primary care physician in the diagnosis and management of drug hypersensitivity
An EAACI task force report: recognising the potential of the primary care physician in the diagnosis and management of drug hypersensitivity Open
Adverse drug reactions include drug hypersensitivity reactions (DHRs), which can be immunologically mediated (allergy) or non-immunologically mediated. The high number of DHRs that are unconfirmed and often self-reported is a frequent prob…
View article: Leadership, Literacy, and Translational Expertise in Genomics: Challenges and Opportunities for Social Work
Leadership, Literacy, and Translational Expertise in Genomics: Challenges and Opportunities for Social Work Open
The transdisciplinary field of genomics is revolutionizing conceptualizations of health, mental health, family formation, and public policy. Many professions must rapidly acquire genomic expertise to maintain state-of-the-art knowledge in …