Figure 1.
Example questions from the ethnographic interviews
| SECTION | TOPICS COVERED (PERSPECTIVE OF PARENT AND CHILD FOR TWO PERSON INTERVIEWS) |
|---|---|
| 1. Introduction (20/25 min) |
|
| 2. What it means to have haemophilia (40/50 min) |
|
| 3. Their daily lives with haemophilia (40/50 min) |
|
| 4. Their current treatment routine (40/50 min) |
|
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.” | |