Journal Article

Proponent or collaborative: Physician perspectives and approaches to disease modifying therapies in sickle cell disease

Khemani, Kirshma, Sinha, Cynthia B., Bakshi, Nitya, Krishnamurti, Lakshmanan, Ross, Diana, Loewenstein, George

2017

Overview

Sickle cell disease (SCD) is an inherited blood disorder that primarily affects African-American and other ethnic minority populations. There are three available disease-modifying therapies for sickle cell disease: hydroxyurea (HU), bone marrow transplantation (BMT), and chronic blood transfusion (CBT). Since these treatments vary in their therapeutic intent, efficacy in preventing progression of the disease, short and long-term adverse effects, costs and patient burden, the decision-making process regarding these therapies is complicated for both the patient and healthcare provider. While previous research has focused on the patient perspective of treatment-related decision making, there is a paucity of research investigating the physician perspective of treatment-related decision making. We conducted a qualitative study with physicians who were experts in the field of SCD. Interviews focused on physician perceptions of patient decisional needs as well as physicians' approach to decision making regarding disease-modifying therapies in SCD. Thirty-six physician interviews were analyzed, with a focus on their perspectives regarding available treatment options and on how they approach decision making with patients. We identified two narrative approaches. The Collaborative approach (CA) was characterized by emphasizing the need to discuss all possible treatment options to ensure that the patient and/or family was equipped to make an informed decision. The Proponent approach (PA) was characterized by strongly advocating a pre-determined treatment plan and providing patients/families with information, with the objective of convincing them to accept the treatment. An interplay of patient-related and disease-related factors, decision type and physician-related factors, as well as institutional frameworks, influenced physician perspectives on treatment options and decision making regarding these therapies. These findings point to the potential value of developing systems to foster patient engagement as a way of facilitating shared decision making.

• Publisher: Public Library of Science,Public Library of Science (PLoS)
• Subject: Adult / Analysis / Anemia, Sickle Cell - drug therapy / Anemia, Sickle Cell - therapy / Antisickling Agents - therapeutic use / Biology and Life Sciences / Blood / Blood diseases / Blood transfusion / Blood Transfusion - methods / Blood transfusions / Bone marrow / Bone Marrow Transplantation / Cancer therapies / Care and treatment / Child / Chronic illnesses / Collaboration / Confidentiality / Decision analysis / Decision Making / Diagnosis / Families & family life / Female / Health aspects / Health care / Health Care Surveys / Health services / Hematology / Hospitals / Humans / Hydroxyurea / Hydroxyurea - therapeutic use / Male / Medical personnel / Medical research / Medicine and Health Sciences / Minority & ethnic groups / Oncology / Patient outcomes / Patient Participation / Patients / Pediatrics / People and Places / Physician-Patient Relations / Physicians / Populations / Practice Patterns, Physicians / Prognosis / Qualitative research / Risk factors / Sickle cell anemia / Sickle cell disease / Side effects / Social Sciences / Stem cell transplantation / Transfusion / Transplantation