What Are the Expectations of Patients in Decision Making Process for Disease Modifying Therapies for Sickle Cell Disease: Do They Care about Shared Decision Making?
Authors: Ross Diana , Bakshi Nitya , Khemani Kirshma , Sinha Cynthia , Loewenstein George , Krishnamurti Lakshmanan 
Published: November 2019

Abstract
Background
Medical decisions regarding disease modifying therapy for sickle cell disease (SCD) such as chronic blood transfusion, hydroxyurea, and bone marrow transplantation are complex and have many short and long term implications for the patient's health. Shared decision-making, a collaborative process that allows patients and healthcare providers to make health care decisions collaboratively taking into account the best clinical evidence available as well as the patient's values and preferences, is considered the preferred process in complex medical decisions. There is a paucity of information regarding perspectives of patients with SCD and their caregivers regarding shared decision-making. The objective of this study was to determine the perspective of patients and their caregivers regarding shared decision making in disease modifying therapy for SCD.
Methods
We conducted qualitative interviews of patients with SCD as well as their caregivers from a geographically diverse population recruited from attendees at regional and national conferences for SCD. A semi-structured open-ended interview guide was used to collect data. Interview guide focussed on determining the expectations of patients and caregivers in their interaction with their physician and their involvement in decision making regarding disease modifying therapy. Interviews lasted 30-60 minutes and were recorded. Audio recordings were transcribed verbatim. Transcripts were coded using qualitative content analysis with NVivo 10.
Results
Participants were African American, average age was 40 (SD 10.8), 18 of 19 were female, one had a high school degree, eight had some college, and 10 had either a bachelor's or graduate degree.Qualitative analyses yielded the following themes:
1. Patients prefer decision making to occur as a collaborative process between a patient or caregiver and the physician. They indicated that physician and patient each brings their own expertise to the table when discussing treatment. They strongly endorsed that patients should make an informed decision based on ability to comply and personal goals, preferences, and beliefs.
2. Patients prefer that the physician provide information about SCD, including complications and expected long-term outcomes based on the literature as well as personal knowledge of the patient. Patients indicated a desire to receive information in an unbiased fashion. Participants felt that it is the physician's responsibility to provide verbal and written information as well as referral to websites of value in learning.
3. Participants felt that physicians should be aware of their patient's medical history and personal preferences for care.
3. Patients prefer to receive detailed information on side effects and expectations of the impact of treatment on the patient based on the literature and physician experience.
4. Patients would like for the physician to listen to the patient and attempt to understand the patient perspective regarding self-care.
5. Patients have the responsibility to understand SCD and its complications, including expected long-term outcomes of SCD. Participants also underlined the importance of patients making an effort to understand the treatment being offered, including intended purpose, expected outcome, risks, and benefits. Participants felt that patients need time to do their own research and learning before making a decision.
6. Multiple sources for learning about SCD and treatment options. These include education by the physician and asking questions, talking to other patients, doing research on the internet, and personal knowledge of their medical history to including the way their body responded to past treatment.
7. Nurses, and social workers can have a supportive role in decision-making, and can address past medical history and provide guidance regarding socioeconomic barriers to care.
8. Extended family, unless living with the patient, plays a supportive role but is not part of the decision-making team.
Conclusion
The perspective of patients and their caregivers suggests strong support for shared decision making collaboratively with the physician, supported by high quality information and based on the patient's personal values and preferences. These data provide a rationale for developing and implementing measures to facilitate shared decision making for disease modifying therapy for SCD.

Disclosures
No relevant conflicts of interest to declare.