Developing a two‐sided intervention to facilitate shared decision‐making in haemophilia: decision boxes for clinicians and patient decision aids for patients

Abstract

Background. People with haemophilia face many treatment decisions, which are largely informed by evidence from observational studies. Without evidence-based 'best' treatment options, patient preferences play a large role in decisions regarding therapy. The shared decision-making (SDM) process allows patients and health care providers to make decisions collaboratively based on available evidence, and patient preferences. Decision tools can help the SDM process. The objective of this project was to develop two-sided decision tools, decision boxes for physicians and patient decision aids for patients, to facilitate SDM for treatment decisions in haemophilia. Methods. Development of the decision tools comprised three phases: topic selection, prototype development and usability testing with targeted end-users. Topics were selected using a Delphi survey. Tool prototypes were based on a previously validated framework and were informed by systematic literature reviews. Patients, through focus groups, and physicians, through interviews, reviewed the prototypes iteratively for comprehensibility and usability. Results. The chosen topics were: (i) prophylactic treatment: when to start and dosing, (ii) choosing factor source and (iii) immunotolerance induction: when to start and dosing. Intended end users (both health care providers and haemophilia patients and caregivers) were engaged in the development process. Overall perception of the decision tools was positive, and the purpose of using the tools was well received.Conclusions. This study demonstrates the feasibility of developing decision tools for haemophilia treatment decisions. It also provides anecdotal evidence of positive perceptions of such tools. Future directions include assessment of the tools' practical value and impact on clinical practice.

Patient‐centred care in haemophilia: Patient perspectives on visualization and participation in decision‐making

“…First, tools such as iCHIP and WAPPS may help increase patients' understanding, even for those with mild haemophilia. 22 Yet, to Another potential limitation of this study is that the convenience sampling approach makes it more likely to include PWH who are already willing to accept their condition and its treatment and engage with the Clinic Team. This, in turn, determines self-reported adherence.…”

Information provision and attentive listening as determinants of patient perceptions of shared decision-making around chronic illnesses

“…Haemophilia is a chronic disease characterized by the existence of more than one possible treatment option. Actually, there are no evidence-based indications to identify the better treatment option (Athale et al 2014). In this context, great uncertainty exists when choosing the right treatment option and SDM plays an essential role.…”

How I approach: Previously untreated patients with severe congenital hemophilia A

“…One of the first decisions to be made with the family is the type of clotting factor to prescribe. Tools for shared decision‐making can facilitate the process . Athale et al developed two‐sided decision tools for clinicians and parents to guide initial factor product choice .…”

“…Tools for shared decision‐making can facilitate the process . Athale et al developed two‐sided decision tools for clinicians and parents to guide initial factor product choice . The decision aids provide basic information about clotting factor, what the choices are, why parent preferences matter, and available data related to inhibitor risk.…”

“…A second set of decision‐making relates to prophylaxis including if, when, and how to initiate. Athale et al also developed decision aids to facilitate the discussion about when to start (early or late) and with what regimen . Data presented in the decision aids focus on joint health, venous access, and inhibitor risk.…”