There has been a subtle shift in medicine over the last few years bringing the physical and psychological disciplines together. Formerly, the proverbial Venn diagram of the two barely touched; there was almost an understanding that the primary clinician would treat the patient’s “primary concern,” while counselors and mental health specialists would come in later to sweep up any “lingering concerns about coping.”
That the 2 disciplines are often now given equal weight is a laudable step forward. It is now a common sight to see clinicians and their psychological counterparts discussing cases on a regular basis in a multidisciplinary setting.
What we have learned from this new type of cross-disciplinary discourse is that physical symptoms, treatment regimens, and psychological burden are intricately intertwined. Take, for example, patients with hemophilia. It is true that hemophilia is no longer the death sentence it was before the introduction of factor replacement therapy. Nonetheless, the average patient is still inundated with constant intravenous therapy, meaning they typically visit a healthcare facility at least once a week.
Implicit in this is the fact that young patients with hemophilia often miss out on school and social activities as a result of their need for constant prophylactic therapy. A young patient with hemophilia may be more familiar with the sights and sounds of a healthcare facility than an athletic field, given the inherent dangers of bleeding.
Fear of Movement
In a letter to the editor published in Haemophilia, Feldberg and colleagues highlighted the complex interaction between the physical and psychological components of hemophilia-associated pain. Based on their interaction with patients, they reported how cognitive and social behavioral issues contribute to the impact of pain, which then result in a poorer prognosis following the onset of musculoskeletal pain.
Patients with hemophilia are educated about the risks associated with physical movement, especially contact sports. While prophylactic therapy does work, breakthrough bleeding can sometimes occur, resulting in severe pain. As a result, vulnerable patients may see pain and physical movement as deeply intertwined, causing a psychological problem known as kinesiophobia.
“Kinesiophobia is defined as an excessive, irrational, and debilitating fear to carry out a movement resulting from a feeling of vulnerability due to painful injury and may be associated with pain and disability,” the authors of the study wrote.
Read more about hemophilia etiology
Patients with this disorder tend to adjust their motor behavior based on their expectations of which movement might elicit most pain. This may be based on past experience or an irrational fear of pain.
Feldberg and colleagues carried out a study in which they recruited patients with hemophilia A or B aged more than 12 years. Participants were asked to define the presence or absence of chronic pain based on definitions determined by the International Association for the Study of Pain. In addition, they were asked to fill in the Tampa Scale for Kinesiophobia, a 17-item questionnaire on pain and fear of movement.
The research team reported that the median kinesiophobia score was higher in the group of patients with hemophilia who suffered from chronic pain compared with patients without nonchronic pain. In addition, they reported that there was a moderately positive correlation between total articular pain and the Tampa Scale for Kinesiophobia and catastrophic thoughts.
“Kinesiophobia and catastrophic thinking become a form of unconscious mechanical and psychological defense that [patients with hemophilia] may develop with the aim of self-protection,” Feldberg et al wrote. “We hypothesized that kinesiophobia could provoke negative attitudes towards the body and participation in daily and sport activities.”
The Scale of the Problem
In Haemophilia, a literature review conducted by Al-Huniti and colleagues found that the prevalence of mental health issues such as depression, anxiety, and attention deficit hyperactivity disorder (ADHD) were significantly higher among patients with hemophilia compared to the general population. This is their finding after combing through 28 related studies.
Because the experience of pain, quality of life, and mental health are so intertwined, we as physicians need to push for reforms in which the mental health of patients is given due concern. We can achieve this by broadening the scope of our consultation beyond the walls of the doctor’s office and engaging with teachers, caregivers, school administrators, and even friends of patients with hemophilia to provide education on best practices for maximizing their life experience.
Read more about hemophilia treatment
Already, a number of promising therapies are under investigation—therapies that may end the dominance of factor replacement therapy once and for all. However, to reap the benefits, we all need to be a little bit more patient.
Better mental health can begin now, even while we wait for the therapies of the future to undergo the necessary regulatory checks and approval. Meanwhile, we should do everything in our power to ensure that young patients with hemophilia get to live free, unrestrained lives, as much as it is medically safe to do.
Feldberg G, Ricciardi JBS, Zorzi AR, Colella MP, Yamaguti-Hayakawa GG, Ozelo MC. Chronic pain in patients with hemophilia: Influence of kinesiophobia and catastrophizing thoughts. Haemophilia. 2023;29(1):386-389. doi:10.1111/hae.14708
Al-Huniti A, Reyes Hernandez M, Ten Eyck P, Staber JM. Mental health disorders in haemophilia: systematic literature review and meta-analysis. Haemophilia. 2020;26(3):431-442. doi:10.1111/hae.13960