scholarly journals Shared decision making and patient choice for growth hormone therapy: current perspectives

Author(s):  
Vageesh Ayyar ◽  
Belinda George
2018 ◽  
Vol 9 ◽  
Author(s):  
Carlo L. Acerini ◽  
David Segal ◽  
Sherwin Criseno ◽  
Kei Takasawa ◽  
Navid Nedjatian ◽  
...  

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e13603-e13603
Author(s):  
Zubin Master ◽  
Cambray Smith ◽  
Jeremiah Stout ◽  
Alex A. Adjei ◽  
Jan C. Buckner ◽  
...  

e13603 Background: Over half of Americans report favoring access to experimental treatments even if they have yet to be proven either safe or effective, yet only 3-5% are enrolled in clinical trials and a fraction of a percent in expanded access. The Expanded Access (EA) program (aka “compassionate use”) and Right-to-Try (RTT) are parallel federal mechanisms that offer qualifying patients access to off-trial experimental treatments. Our study aimed to capture the views and experiences of oncologists on obtaining eligible medicine using the FDA’s EA and is the first to report findings on physician attitudes toward RTT. Methods: We conducted 21 semi-structured interviews and qualitative analysis of oncologists at a major cancer center with 3 main sites across the U.S. Participants were purposely selected to have experience with EA. Results: Oncologists’ considerations for offering EA options to patients were based on a sound scientific rationale, reasonable risk-benefit ratio, functional status of the patient, and patient motivation. Although oncologists’ experience positively correlated with level of ease in navigating EA, most remained largely unfamiliar with RTT. Only 4 oncologists had experience discussing RTT with patients and none had obtained an experimental therapeutic under this pathway. When informed about RTT, oncologists articulated 3 sets of concerns including limited safety and oversight, unclear structure and lack of requirements to collect and report data, and the potential for inflating patient expectations. Published work by others have shown that patients desire experimental options to be offered and report that physicians do not always offer experimental medicine taking into account factors, such as, reimbursement. Given that oncologists may factor in variables such as patient motivation, and potentially affordability or health literacy, when considering whether experimental medicine is appropriate to offer their patient, there may be a need to develop a conversation aid so that clinically relevant options are presented to patients equitably and patient choice is enhanced. Conclusions: Further research to better understand patient perspectives and potential discordant views between patients and oncologists is needed in order to design shared decision-making tools to inform oncologists about off-trial preapproval pathways and help both oncologists and patients navigate the thorny issues of experimental oncology.


Author(s):  
Beth A Clark ◽  
Alice Virani ◽  
Sheila K Marshall ◽  
Elizabeth M Saewyc

Abstract Information is lacking on the role shared decision making plays in the care of transgender (trans) youth. This qualitative, descriptive study explored how trans youth, parents and health care providers engaged or did not engage in shared decision-making practices around hormone therapy initiation and what conditions supported shared decision-making approaches in clinical practice. Semi-structured interviews were conducted with 47 participants in British Columbia, Canada, and analyzed using a constructivist grounded theory approach. While formal shared decision-making models were not used in practice, many participants described elements of such approaches when asked about their health care decision-making processes. Others described health care interactions that were not conducive to a shared decision-making approach. The key finding that emerged through this analysis was a set of five conditions for supporting shared decision making when making decisions surrounding initiation of hormone therapy with trans youth. Both supportive relationships and open communication were necessary among participants to support shared decision making. All parties needed to agree regarding what decisions were to be made and what role each person would play in the process. Finally, adequate time was needed for decision-making processes to unfold. When stakeholders meet these five conditions, a gender-affirming and culturally safer shared decision-making approach may be used to support decision making about gender-affirming care. Implications for clinical practice and future research are discussed.


2009 ◽  
Vol 18 (1) ◽  
pp. 60-84 ◽  
Author(s):  
Lars Sandman ◽  
Christian Munthe

2020 ◽  
Vol 11 (2) ◽  
pp. 117-120
Author(s):  
Cassandra E Henderson MD ◽  
Shadi Rezai ◽  
Richard A Giovane

Despite a paucity of data that intrahepatic cholestasis of pregnancy (ICP) is a risk for unexplained term fetal demise, active management to achieve delivery between 36 0/7 and 37 0/7 weeks remains standard clinical practice. This practice continues despite conflicting evidence associating ICP with increased stillbirth risk, disregarding the simultaneous presence of voluminous data attesting to the perinatal and pediatric hazards associated with late preterm and early-term deliveries. This clinical risk correlation between possible antenatal death versus the potential long-term consequences for iatrogenic late preterm or early term infant born from an ICP affected pregnancy warrants inclusion of shared decision making to elicit the patient’s values and preferences during the ICP management option informed consent process.


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