Access to treatment among persons with hemophilia: A spatial analysis assessment in the Rhone-Alpes region, France

Leroy, Vincent; Freyssenge, Julie; Renard, Florent; Tazarourte, Karim; Claude, Négrier; Chamouard, Valérie

doi:10.1016/j.japh.2019.07.006

Cited by 6 publications

(5 citation statements)

References 32 publications

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“…One of the learnings from a recent study, identified that travel time to care facilities (i.e. 30‐min access to the hospital pharmacy) was an insufficient parameter in the absence of a measure of perceived quality‐of‐life of the patients themselves 6 …”

Section: Resultsmentioning

confidence: 99%

“…30-min access to the hospital pharmacy) was an insufficient parameter in the absence of a measure of perceived quality-of-life of the patients themselves. 6 The results of the PHAREO study show that perceived accessibility to treatment for patients and their relatives was satisfactory regardless of the patient characteristics. However, we show that patients who have to collect their prophylactic treatment monthly are more likely to be dissatisfied.…”

Section: Strengths and Limitationsmentioning

confidence: 96%

“…A large number of studies, particularly Anglo‐Saxon, have assessed access to care and medication 5 as in the treatment of asthma for example, demonstrating the unfavourable role that the geographical distance from pharmacies plays in the proper management of these chronic diseases. In a previous study, the geographic accessibility of haemophilia patients in the Rhône‐Alpes region to hospital pharmacies underlined that approximately 72% of the study area was accessible to a hospital pharmacy in less than 30 min, 6 without considering the perception of patients and their caregivers who are impacted throughout their lives by the quality and availability of their treatment. Despite socio‐economic inequities 7,8 and geographic availability, 9,10 no study in France takes into account the perception of patients themselves regarding access to their treatment.…”

Section: What Is Known and Objectivementioning

confidence: 96%

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PHAREO study: Perceived and observed accessibility to therapeutic drugs used for treating patients with inherited bleeding disorders

Chamouard

Fraticelli

Freyssenge

et al. 2022

Clinical Pharmacy Therapeu

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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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Section: Resultsmentioning

confidence: 99%

Section: Strengths and Limitationsmentioning

confidence: 96%

Section: What Is Known and Objectivementioning

confidence: 96%

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PHAREO study: Perceived and observed accessibility to therapeutic drugs used for treating patients with inherited bleeding disorders

Chamouard

Fraticelli

Freyssenge

et al. 2022

Clinical Pharmacy Therapeu

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“…To maintain a sufficient level of clotting factor in the bloodstream to prevent bleeds, patients with severe hemophilia A are typically prescribed prophylactic treatment that consists of regular administration of FVIII, for example, every day, week, or month, according to how long the factor lasts in the body. Although effective, this treatment can only be administered intravenously, and in France, as well as in other countries [3][4][5][6], dispensation FVIII is only available from hospital pharmacies; they both contribute to organizational and geographical constraints [7] as well as a significant mental burden for patients and their caregivers, particularly for the parents of children with hemophilia [8].…”

Section: Introduction Backgroundmentioning

confidence: 99%

Evaluation of the Care Pathway in the Context of the Dispensing of Emicizumab (Hemlibra) in Community Pharmacies in France: Protocol for a Cross-sectional Study Based on the Kirkpatrick Model

Fraticelli¹,

Freyssenge²,

Promé-Combel³

et al. 2023

JMIR Res Protoc

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Background Commercialized since 2019, emicizumab (Hemlibra) was available only in French hospital pharmacies for prophylaxis of hemophilia A with or without inhibitors. Since June 15, 2021, patients can choose between a hospital and community pharmacy. These changes in the care pathway have important organizational consequences for patients, their relatives, and health professionals. Two training programs are available for community pharmacists: the “HEMOPHAR” training program proposed by the national reference center for hemophilia and the Roche training program proposed by the laboratory that markets the product. Objective The PASODOBLEDEMI study aims to evaluate the direct impact of the training programs provided to community pharmacists in the context of the dispensing of emicizumab, and to evaluate patients’ satisfaction with their treatment whether they choose dispensation from a community pharmacy or retained dispensation from the hospital pharmacy. Methods We designed a cross-sectional study based on the 4-level Kirkpatrick evaluation model: the immediate reaction of community pharmacists following training (Reaction), the knowledge acquired during the training (Learning), the professional practice of community pharmacists during dispensing of the product (Behavior), and patients’ satisfaction related to the treatment whether it is dispensed from a hospital or from a community pharmacy (Results). Results Considering that single outcome measures cannot adequately reflect the complexity of this new organization, the Kirkpatrick evaluation model provides 4 distinct outcomes: the immediate reaction after the HEMOPHAR training program, the level of knowledge acquired after the HEMOPHAR training program, the impact of training on professional practice, and patient satisfaction with access to emicizumab. We developed specialized questionnaires for each of the 4 levels of the Kirkpatrick evaluation model. All community pharmacists involved in dispensing emicizumab, whether they have followed the HEMOPHAR or the Roche training program or neither, were eligible for inclusion. All patients with severe hemophilia A were eligible, irrespective of inhibitor use, age, treatment with emicizumab, and whether they chose dispensation from a community pharmacy or retained dispensation from a hospital pharmacy. Conclusions The new organization for dispensing emicizumab to patients with hemophilia A in French community pharmacies must be accompanied by optimal safety and quality conditions due to the risk of serious and urgent bleeding situations in the management of rare bleeding diseases. The elaboration of the PASODOBLEDEMI protocol has already a positive impact with the commitment of all health professionals, physicians, hospital and community pharmacists, and the patient community. The results will be disseminated among the French authorities and will enable, if necessary, proposing this access model to other rare diseases. Trial Registration ClinicalTrials.gov NCT05449197, https://clinicaltrials.gov/ct2/show/NCT05449197?term=NCT05449197; ClinicalTrials.gov NCT05450640, https://clinicaltrials.gov/ct2/show/NCT05450640?term=NCT05450640 International Registered Report Identifier (IRRID) DERR1-10.2196/43091

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“…However, the accessibility of CFCs needs to be improve, especially in an emergency context. 19 Therefore, in France, the evolution of the drug distribution system represents a real challenge for patient care.…”

Section: Introductionmentioning

confidence: 99%

Patients’ Perception of the Impact of Innovation on Hemophilia Care Management Organization: A Qualitative Study Protocol (INNOVHEMO Study)

Beny

Vigneulles

Chamouard

et al. 2021

PPA

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Background New therapies provide a favorable evolution in the care management of persons with hemophilia. However, the impact of these new therapies on patient care organization remains to be determined. A qualitative study will be implemented to analyze patients’ perception regarding the impact of innovation on the organization of their care management. Secondary objectives will include refining specific factors related to persons with hemophilia (barriers or facilitators, especially the place of treatment) to consider within an organizational impact analysis. Patients and Methods Semi-structured individual interviews will be conducted via videoconferencing or by phone by two researchers using an interview guide. Participants will be recruited from the Rhône-Alpes region, in France. Physicians from two hemophilia treatment centers will identify eligible patients. Moreover, a call for volunteers will be launched by the Rhône-Alpes committee of the French hemophilia association. Interviews will be conducted with adult patients, adolescent patients or parents of a minor with hemophilia regularly treated prophylactically or on demand. Data analysis will be performed with NVivo ® software. Each interview will be analyzed by two researchers using an inductive content analytic method. Discussion The INNOVHEMO study is an original study analyzing the way patients perceive the impact of an innovation on their care management organization. The resulting patient-specific factors, identified as barriers or facilitators, will need to be integrated into a more comprehensive analysis of the impact of innovation on care management organization.

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Access to treatment among persons with hemophilia: A spatial analysis assessment in the Rhone-Alpes region, France

Cited by 6 publications

References 32 publications

PHAREO study: Perceived and observed accessibility to therapeutic drugs used for treating patients with inherited bleeding disorders

PHAREO study: Perceived and observed accessibility to therapeutic drugs used for treating patients with inherited bleeding disorders

Evaluation of the Care Pathway in the Context of the Dispensing of Emicizumab (Hemlibra) in Community Pharmacies in France: Protocol for a Cross-sectional Study Based on the Kirkpatrick Model

Patients’ Perception of the Impact of Innovation on Hemophilia Care Management Organization: A Qualitative Study Protocol (INNOVHEMO Study)

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