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

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 (C...

Full description

Bibliographic Details
Main Authors: Nitya Bakshi, Cynthia B Sinha, Diana Ross, Kirshma Khemani, George Loewenstein, Lakshmanan Krishnamurti
Format: Article
Language:English
Published: Public Library of Science (PLoS) 2017-01-01
Series:PLoS ONE
Online Access:http://europepmc.org/articles/PMC5518995?pdf=render
_version_ 1828204440992088064
author Nitya Bakshi
Cynthia B Sinha
Diana Ross
Kirshma Khemani
George Loewenstein
Lakshmanan Krishnamurti
author_facet Nitya Bakshi
Cynthia B Sinha
Diana Ross
Kirshma Khemani
George Loewenstein
Lakshmanan Krishnamurti
author_sort Nitya Bakshi
collection DOAJ
description 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.
first_indexed 2024-04-12T12:23:43Z
format Article
id doaj.art-df81bdb7e16a4355ba79f9863dd6c5ae
institution Directory Open Access Journal
issn 1932-6203
language English
last_indexed 2024-04-12T12:23:43Z
publishDate 2017-01-01
publisher Public Library of Science (PLoS)
record_format Article
series PLoS ONE
spelling doaj.art-df81bdb7e16a4355ba79f9863dd6c5ae2022-12-22T03:33:14ZengPublic Library of Science (PLoS)PLoS ONE1932-62032017-01-01127e017841310.1371/journal.pone.0178413Proponent or collaborative: Physician perspectives and approaches to disease modifying therapies in sickle cell disease.Nitya BakshiCynthia B SinhaDiana RossKirshma KhemaniGeorge LoewensteinLakshmanan KrishnamurtiSickle 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.http://europepmc.org/articles/PMC5518995?pdf=render
spellingShingle Nitya Bakshi
Cynthia B Sinha
Diana Ross
Kirshma Khemani
George Loewenstein
Lakshmanan Krishnamurti
Proponent or collaborative: Physician perspectives and approaches to disease modifying therapies in sickle cell disease.
PLoS ONE
title Proponent or collaborative: Physician perspectives and approaches to disease modifying therapies in sickle cell disease.
title_full Proponent or collaborative: Physician perspectives and approaches to disease modifying therapies in sickle cell disease.
title_fullStr Proponent or collaborative: Physician perspectives and approaches to disease modifying therapies in sickle cell disease.
title_full_unstemmed Proponent or collaborative: Physician perspectives and approaches to disease modifying therapies in sickle cell disease.
title_short Proponent or collaborative: Physician perspectives and approaches to disease modifying therapies in sickle cell disease.
title_sort proponent or collaborative physician perspectives and approaches to disease modifying therapies in sickle cell disease
url http://europepmc.org/articles/PMC5518995?pdf=render
work_keys_str_mv AT nityabakshi proponentorcollaborativephysicianperspectivesandapproachestodiseasemodifyingtherapiesinsicklecelldisease
AT cynthiabsinha proponentorcollaborativephysicianperspectivesandapproachestodiseasemodifyingtherapiesinsicklecelldisease
AT dianaross proponentorcollaborativephysicianperspectivesandapproachestodiseasemodifyingtherapiesinsicklecelldisease
AT kirshmakhemani proponentorcollaborativephysicianperspectivesandapproachestodiseasemodifyingtherapiesinsicklecelldisease
AT georgeloewenstein proponentorcollaborativephysicianperspectivesandapproachestodiseasemodifyingtherapiesinsicklecelldisease
AT lakshmanankrishnamurti proponentorcollaborativephysicianperspectivesandapproachestodiseasemodifyingtherapiesinsicklecelldisease