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PHAREO study: Perceived and observed accessibility to therapeutic drugs used for treating patients with inherited
Valérie Chamouard1,2, Laurie Fraticelli3,4, Julie Freyssenge3,5
1Centre de Référence de l'Hémophilie et autres déficits constitutionnels en protéines de la coagulation, Hôpital Louis Pradel, Groupement Hospitalier Est, Bron, France.
Insights
Patients with haemophilia report high satisfaction with clotting factor access but face pharmacy accessibility challenges. The PHAREO study suggests including community pharmacists to improve treatment pathways and reduce patient burden.
Area of Science:
- Hematology
- Public Health
- Pharmacy Practice
Background:
- Hospital pharmacy dispensing of clotting factor concentrates presents accessibility barriers for patients and caregivers, increasing disease burden.
- Limited research exists on patient perceptions and actual difficulties related to accessing these treatments.
Purpose of the Study:
- To assess patient perceptions of treatment accessibility.
- To evaluate the spatial accessibility of hospital pharmacies for patients requiring clotting factor concentrates.
- To identify factors influencing patient satisfaction with treatment access.
Main Methods:
- An observational survey (PHAREO study) utilizing a questionnaire co-designed with patient representatives.
- Data collected from patients in the second demographic and economic French region.
- Analysis of 293 responses, achieving a 64.1% participation rate.
Main Results:
- 89.8% of respondents reported high satisfaction with treatment access.
- Significant difficulties were reported regarding physical access to hospital pharmacies.
- 39.2% of patients found travel times exceeded their acceptable threshold, with 79.2% overestimating travel duration.
- Parental burden and waiting times at hospital pharmacies were key determinants of dissatisfaction.
Conclusions:
- The PHAREO study highlights a discrepancy between overall treatment satisfaction and the practical challenges of accessing hospital pharmacies.
- A high representativeness rate (87.5% for patients on prophylaxis) underscores the study's findings.
- Stakeholders advocate for evolving the dispensing circuit, proposing centralized coordination involving community pharmacists alongside hospital pharmacists to enhance patient care pathways.
What Is Known And Objective:
The dispensing of clotting factor concentrates in hospital pharmacies imposes accessibility constraints on patients and their caregivers, thereby increasing the disease burden. Very few studies have addressed these issues so far in terms of individual perceptions and actual difficulties. The PHAREO study aims to report patient's perception of treatment accessibility and evaluate spatial accessibility.
Methods:
The PHAREO study is an observational survey based on a questionnaire specifically designed for the study purpose in collaboration with patients' representatives in the second demographic and economic French region.
Results And Discussion:
We collected 293 responses (participation rate of 64.1%) which show that 89.8% of respondents were either very or rather satisfied with regard to access to treatment. However, respondents reported difficulties in accessing the hospital pharmacy. The data also showed that 79.2% of respondents tended to over-estimate travel time which was reported above their acceptable threshold for 39.2% of them. The main determinants of dissatisfaction were parental burden (OR 2.5 [1.3; 4.8], p = 0.008) and waiting time at the hospital pharmacy (OR 1.5 [1.1;2.0], p = 0.016, per 10 min increase).
What Is New And Conclusion:
The PHAREO study provides subjective and objective data regarding satisfaction levels of persons with haemophilia and other coagulation deficiencies, with a high representativeness rate for patients on prophylaxis (87.5%). Both respondents and hospital pharmacists pled for an evolution of the current dispensing circuit to improve access to treatment and reduce the burden for patients. Currently, the community pharmacists are apart from the dispensing circuit. The authors propose improvements in the pathway of care for patients and their caregivers by including the community pharmacists alongside the hospital pharmacists in a centralized coordination scheme.
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