Physicians would do well to reflect on how various clinical symptoms in a patient intersect in a way that creates something of a negative synergy. For example, in patients with hemophilia, excessive bleeding episodes can damage joints, which reduces mobility. Reduced mobility, in turn, often translates to fewer opportunities to participate in social settings, further fermenting feelings of isolation and sowing the seeds of psychological despair. 

If we are to take things further, we can assume that psychological mood disorders can dampen enthusiasm to improve one’s clinical condition, and that this passivity can translate into reduced efforts at physiotherapy or treatment compliance. As a result, the patient’s condition deteriorates, joint bleeding episodes become more severe, and the cycle continues. 

Of course, many patients with chronic illnesses, hemophilia included, have a wonderful disposition and are ironclad in their commitment to living lives that are as normal as possible. Nevertheless, if we are to be serious about leaving nothing to chance and to ensure that no patient falls through the cracks, we need to robustly engage with our patients in the treatment decision making process.


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“The management and treatment of chronic diseases is one of the most pressing challenges facing societies,” Valero writes in Frontiers in Psychology. “Practitioners should always be alert for poor adherence and may mitigate the problem by emphasizing the value of a patient’s regimen, making it simple, and customizing it to the patient’s lifestyle.” 

Towards a Healthier Patient–Clinician Partnership 

In the specific field of hemophilia research, Hermans and colleagues authored a study in Blood Reviews investigating the importance of including patients in any therapeutic decisions by understanding their priorities, preferences, and goals. 

The mainstay of hemophilia treatment for decades now has been factor replacement therapy. Nevertheless, new therapeutic options are on the rise, which is generally good news, but it comes with its own baggage. All treatments have their strengths and weaknesses, and more treatment options can add unnecessary complexity into the lives of patients with hemophilia, making their treatment regimes difficult to keep up with.

The additional challenge for healthcare providers, even as we move into an age of personalized medicine, is to ensure that the best form of treatment is selected for each patient according to his/her individual needs and wants. This inevitably involves a multidisciplinary team, as well as input from family members and caregivers. 

“Shared decision-making, whereby patients (and their families) and clinicians collaborate in health care decisions based on clinical evidence and patient priorities is an established and aspirational concept,” the authors write. “To facilitate patient involvement in important treatment decisions, [healthcare professionals] need a deeper understanding of patient experiences and values.” 

To collect information on this topic, an expert panel of the Zürich Hemophilia Forum convened in 3 online meetings in September and October 2020. The forum comprised various health care professionals involved in treating patients with hemophilia. Their goal was to develop practical algorithms that would make shared decision making easier between clinicians and patients. 

In creating the clinician–patient treatment algorithm, 4 key areas were identified: maintaining existing treatment, intensifying current standard half-life, considering a nonfactor replacement product, and switching to extended half-life products. 

“This proposed algorithm allows the best available treatment option to be selected for each patient, as the data used to create it are compiled by the clinician based on important clinical factors drawn from patient records,” the authors claim. 

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In addition, the panel recommended a complementary patient preference tool that is designed to explore the treatment expectations of patients and enhance shared decision making. This tool explores a number of important questions such as: What are their lifestyle goals? Do patients wish to participate in high-intensity sports? Do they have career/family plans? Each of these goals should impact product choice or regimen. 

The point of this exercise is to include patients in the decision making process like never before. When one encounters progressive research such as this, one is left with the irresistible conclusion that a new age of patient–physician partnership is on the horizon. Gone are the days in which patients play a completely passive role and take all their medications as prescribed with no questions asked. We are moving toward a more hopeful vision of patient–clinician partnership, which should bring us one step closer to truly personalized medicine. 

Making Sure Our Patients Are Seen and Heard

“We are, to a very large extent, the stories of our lives. The way in which the disease affects us depends on the way in which the sickness alters our stories,” Valero writes. “Moreover, for many people, the pain, suffering, or incapacity resulting from different adverse situations generate additional suffering because they burst in upon them dramatically and unexpectedly.”  

The push for greater patient autonomy does not mean relinquishing medical decision taking to lay people—far from it. It entails listening to the personal stories of patients having to undergo massive life upheavals in order to cope with their disease and supporting them with sensitivity and grace. We can all agree that we want our patients to thrive. To realize this fully, we must take a cue from them and make them feel included in the most personal decisions of their lives. 

References

Hermans C, Noone D, Benson G, et al. Hemophilia treatment in 2021: choosing the “optimal” treatment using an integrative, patient-oriented approach to shared decision-making between patients and cliniciansBlood Rev. 2022;52:100890. doi:10.1016/j.blre.2021.100890

Valero IA. Autonomies in interaction: dimensions of patient autonomy and non-adherence to treatmentFront Psychol. 2019;10:1857. doi:10.3389/fpsyg.2019.01857