Abstract
INTRODUCTION: Major progress has been made in treatment of patients with hemophilia over the last 30 or 40 years. Factor replacement, eliminating HIV and hepatitis C transmission, and more recently, longer-acting coagulation factors and immune treatments play a role in allowing patients with hemophilia to experience a longer and healthier life. Previous studies show that invasive procedures like colonoscopies, bronchoscopies or biopsies can safely be performed in patients with hemophilia if an appropriate factor replacement is given. However, because of their risk of bleeding, patients with hemophilia may be reluctant to undergo such invasive procedures or get recommended health maintenance, and these fears may have been worsened by the outbreak of COVID19. Therefore, we wondered if older patients with hemophilia have been impacted by the COVID19 pandemic and have received the recommended vaccinations and cancer screenings.
METHODS: The data for this study originates in the hemophilia clinics of two academic centers in Kentucky (University of Louisville and University of Kentucky). IRB approval was obtained in both institutions. Surveys were mailed or emailed to patients 50 years of age or older in our database. Follow-up phone calls were made to patients who did not respond. The surveys had 17 health related questions focusing on general well-being, pain, smoking, cancer screening, vaccinations and COVID19. The original survey was performed between 11/2020 and 3/2021 and COVID19 vaccination status was updated in 7/2021. Overall, 50 patients in our database met the study criteria (hemophilia and age 50 years or older) and 36 responded (72%). Some patients did not answer all questions.
Patient details are given in Table 1. Median age was 61 years, most patients had mild to moderate hemophilia, three patients were positive for HIV (all with a negative viral load), and 12 had been infected with hepatitis C. Questions related to the impact of COVID19 explored anxiety of leaving the house, meeting with other people, availability of medical appointments, and getting necessary medications. Patients were asked if they received an influenza vaccination and, if older than 60 years, if they had received a pneumonia vaccination.
RESULTS: Overall, most patients reported a good quality of life (Table 2). Nevertheless, most were often or always in pain. About half of the patients were on opioid pain medication. A minority took only over the counter pain medication or no pain medication. 57% of respondents had received both vaccinations for COVID19, two-thirds of the unvaccinated planned to get it. 55% of respondents had undergone a colonoscopy in the previous 5 years. Only 18% identified themselves as current smokers. Few men had undergone screening for prostate cancer. Finally, 5 of 32 patients reported a previous diagnosis of cancer (3 patients with localized skin cancer, 2 patients with head and neck cancers).
CONCLUSIONS: Quality of life in patients with hemophilia is self-reported as good or excellent in most older patients. However, chronic pain problems persist and are not always sufficiently controlled. One reason may be that many of our patients did not have consistent factor replacements early in their life. Only a minority of patients reported a psychological or physical impact of the COVID19 lockdown. Most patients as of June or July 2021 have been vaccinated against COVID19, however this is probably lower than in an age-matched group. Mayo Clinic's vaccine tracker reported a vaccination rate of 92.3% for the 65 and older age group in Kentucky (as of July 31 st of 2021). The rate of influenza vaccination is probably comparable to rates in other rural communities. The same applies to cancer screening by colonoscopy and PSA screening. The rate of smoking of 18% is relatively low but may suffer from under-reporting. Overall, health maintenance in older patients with hemophilia appears acceptable but can certainly be improved. Limitations of our study are small sample size and that most patients have mild to moderate hemophilia. We plan to expand our study to other centers to get more insight into health issues in older patients with hemophilia.
No relevant conflicts of interest to declare.
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