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

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

Kanter, Julie

Sickle Cell Disease Implementation Consortium

Vall-llosera Camps, Miquel

2023-11-12T17:37:02Z

2023-11-12T17:37:02Z

2022-01

2023-11-12T17:37:01Z

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.

PONE-D-21-22833

1932-6203

1932-6203

https://hdl.handle.net/10161/29373

eng

Public Library of Science (PLoS)

PloS one

10.1371/journal.pone.0272204

Sickle Cell Disease Implementation Consortium

Humans

Anemia, Sickle Cell

Hydroxyurea

Blood Transfusion

Consensus

Delphi Technique

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

Journal article

e0272204

11

Duke

School of Medicine

School of Nursing

Basic Science Departments

Clinical Science Departments

Institutes and Centers

Medicine

Pediatrics

Psychiatry & Behavioral Sciences

Medicine, General Internal Medicine

Medicine, Hematology

Pediatrics, Hematology-Oncology

Duke Cancer Institute

Duke Clinical Research Institute

Institutes and Provost's Academic Units

Center for the Study of Aging and Human Development

Initiatives

Duke Science & Society

Population Health Sciences

Duke Innovation & Entrepreneurship

Psychiatry & Behavioral Sciences, Behavioral Medicine & Neurosciences

Emergency Medicine

Duke - Margolis Center For Health Policy

Published

17