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Lessons from a qualitative study of treatment experiences and perceptions in people with haemophilia in France

Sabine-Marie Castet

Sabine-Marie Castet

Haemophilia Treatment Centre (CRC MHC), Bordeaux Pellegrin University HospitalBordeaux, France
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Castet, Sabine-Marie
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Lola Sepot-Boucherit

Lola Sepot-Boucherit

Rare Disease, Novo NordiskParis, France
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Sepot-Boucherit, Lola
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Nicolas Beranger

Nicolas Beranger

Rare Disease, Novo NordiskParis, France
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Beranger, Nicolas
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Stephanie Delienne

Stephanie Delienne

Dijon Haemophilia Treatment Centre, French Federation of Haemophilia and Haemorrhagic Diseases Nurses (FIDEL’HEM)Dijon, France
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Delienne, Stephanie
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Valérie Chamouard

Valérie Chamouard

French Reference Centre on Haemophilia, Haemophilia Centre, Hospices Civils de Lyon, University Hospital of Lyon 1Lyon, France
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Chamouard, Valérie
  
12 kwi 2025
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Kategoria artykułu: Community Focus
Data publikacji: 12 kwi 2025
Zakres stron: 48 - 56
DOI: https://doi.org/10.2478/jhp-2025-0006
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© 2025 Sabine-Marie Castet et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Figure 1.

Patient perspectives on functional and aspirational haemophilia treatment needs in FranceResults from ethnographic interviews on patient perspectives of haemophilia treatment goals in France (N=13), ranked according to the type of need (functional vs aspirational).
Patient perspectives on functional and aspirational haemophilia treatment needs in FranceResults from ethnographic interviews on patient perspectives of haemophilia treatment goals in France (N=13), ranked according to the type of need (functional vs aspirational).

Example questions from the ethnographic interviews

SECTION TOPICS COVERED (PERSPECTIVE OF PARENT AND CHILD FOR TWO PERSON INTERVIEWS)
1. Introduction (20/25 min)

Start the conversation and put the participant/parent and child at ease

Who are they, what do they do professionally, and what are their hobbies in their spare time?

What is important to them, what are their goals in life and how does haemophilia impact them?
2. What it means to have haemophilia (40/50 min)

Is there a family history of haemophilia? What is their treatment history?

How have patients/families been informed about haemophilia over the years?

How do patients/their parents perceive their illness in relation to the French healthcare system and pharmaceutical laboratories?

Do they see themselves as part of a community? If so, what role does this community play for them?

How much do they know about their illness and how involved are they in their own treatment?
3. Their daily lives with haemophilia (40/50 min)

What impact does haemophilia have on their daily lives/their family life?

What difficulties do they encounter on a daily basis?

What strategies have they put in place to live as normally as possible?

What helps them feel protected? What, on the contrary, makes them feel vulnerable?
4. Their current treatment routine (40/50 min)

Understand their current treatment and resulting needs across different age groups/family situations

Demonstration of their daily therapeutic routine

What kind of habits and routines have they developed around their treatment? Why and how did they develop these habits?

What role do family, friends, and members of their community play in their treatment and how do they perceive it?

Clinical and demographic characteristics of interviewed patients with haemophilia in France (N=13)

HAEMOPHILIA TYPE SEX TREATMENT AT TIME OF INTERVIEW FREQUENCY
HAwI Male Emicizumab Q2W
Male Emicizumab QW
Male Emicizumab Q2W
Male Emicizumab QW
Male EHL rFVIII (efmoroctocog alfa)* TIW
Male FVIII (simoctocog alfa)* QD
HB Male EHL rFIX (eftrenonacog alfa) TIW
Male EHL rFIX (eftrenonacog alfa) QW
Male EHL rFIX (eftrenonacog alfa) QW
Male EHL rFIX (eftrenonacog alfa) QW
Male EHL rFIX (eftrenonacog alfa) QW
Male EHL rFIX (eftrenonacog alfa) QW
Female EHL rIX-FP (albutrepenonacog alfa) Q2W

Patient perspectives on the management of haemophilia in FranceThe table shows select patient quotes that were highlighted following data analysis_

DOMAIN HAEMOPHILIA TYPE, TREATMENT PATIENT QUOTES
Efficiency A HB, EHL rIX-FP (mother of patient) “We’d try a new treatment if it’s efficient and as long as my daughter has a high factor level.”
B HAwI, Emicizumab “With emicizumab the protection is different, you load up and then it plateaus. The drug actually stays in your body for six months.”
Autonomy A HAwI, Emicizumab “We had never left mainland France for travelling. My wife is impatient to travel further. Being on prophylaxis made me feel comfortable to travel to Corsica in 2020. Now that I am on emicizumab I feel even better protected. We are planning on going abroad for the first time.”
B HAwI, FVIII “Living in Paris, I cannot afford a car or taxi. So I need to take my shopping cart to the hospital to carry my 30 boxes.”
C HB, EHL rFIX “I drove all the way to Paris to retrieve my treatment only to be told it was not available yet.”
D HB, EHL rIX-FP (mother of patient) “My daughter’s nurse has lots of knowledge and empathy. She’s witnessed many reactions to treatments. My daughter only wants her to do injections. She treats kids as equal and they sense it.”
Normalcy A HAwI, Emicizumab “Emicizumab is great but its mode of administration still resembles a needle, at least to outsiders. I’d never do it outside my house.”
B HAwI, FVIII “If I have people over, I prefer to wait until they leave to do my IV, it’s annoying as I have to infuse every day.”
Język:
Angielski
Częstotliwość wydawania:
1 razy w roku
Dziedziny czasopisma:
Medycyna, Podstawowe nauki medyczne, Podstawowe nauki medyczne, inne, Medycyna kliniczna, Medycyna kliniczna, inne, Farmacja, Farmakologia
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