Article

Support and information needs identified in a survey of adults with sickle cell disease

2023-02-06

Abstract excerpt

Newborn screening and early treatment for sickle cell disease has dramatically improved outcomes for impacted children, but adults with the disease live with chronic and acute pain, organ damage, a high risk of mortality, and diminished quality of life. Adults’ access to quality care and knowledgeable providers is limited compared to other genetic diseases. Adults living with the disease and associated with two co...

Topics

Open a Topic to create a Post that cites this publication.

Identifiers and source

Literature Corpus work: 527ffec7-9eb5-5b46-b61c-1c08f23f6418
DOI: 10.21203/rs.3.rs-2534702/v1

Open publication

Related research

Semantic proximity does not establish scientific evidence.

Click a neighbor to travelStep 1 · 12 closest

Support and information needs identified in a survey of adults with sickle cell diseaseDOI 10.21203/rs.3.rs-2534702/v1Read

Recent treatment guidelines for managing adult patients with sickle cell disease: challenges in access to care, social issues, and adherence.Semantic proximity Read

Health-Related Quality of Life and Service Barriers among Adults with Sickle Cell Disease in KSASemantic proximity Read

Developing a Community Engaged Sickle Cell Disease Center: An Initial Data Analysis of Healthcare Utilization Rates and Perspectives of Key InformantsSemantic proximity Read

Risk of vaso-occlusive crisis requiring hospitalization in sickle cell disease patients in Brazil: retrospective cohort study of real-world dataSemantic proximity Read

Understanding stakeholders’ experience with sickle cell disease by social media listening across EuropeSemantic proximity Read

Sickle Cell Disease and PainSemantic proximity Read

Comprehensive care for patients with sickle cell disease in Cuba.Semantic proximity Read

A Needs Analysis of Parents Following Sudden Cardiac Death in the YoungSemantic proximity Read

Exploring the support needs of parents of young children with Usher syndrome: A qualitative approach.Semantic proximity Read

Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare SystemSemantic proximity Read

Beyond the definitions of the phenotypic complications of sickle cell disease: an update on management.Semantic proximity Read

Understanding Caregiver Knowledge to Improve Home-Based Management of Sickle Cell Disease in Zaria, NigeriaSemantic proximity Read