“What more can we ask for?”: an ethnographic study of challenges and possibilities for people living with haemophilia
, , , , , , y | 08 jun 2020
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Article Category: Community Focus
Publicado en línea: 08 jun 2020
Páginas: 25 - 36
DOI: https://doi.org/10.17225/jhp00151
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© 2020 Thomas Hughes et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
Figure 1
Demographics of PwH in the study (n=51)All information in the table was self-reported by study participants.
| 0–12 | 16 | 31.4% |
| 13–18 | 10 | 19.6% |
| 19–49 | 14 | 27.5% |
| 50+ | 11 | 21.6% |
| UK | 11 | 21.6% |
| Ireland | 12 | 23.5% |
| Germany | 9 | 17.6% |
| Spain | 9 | 17.6% |
| Italy | 10 | 19.6% |
| Haemophilia A | 42 | 82.4% |
| Haemophilia B | 9 | 17.6% |
| Mild or moderate | 3 | 5.9% |
| Severe | 48 | 94.1% |
| Prophylaxis | 49 | 96.1% |
| On demand | 2 | 3.9% |
| Never non-adherent | 40 | 81.6% |
| Rarely non-adherent | 5 | 10.2% |
| Often non-adherent | 4 | 8.2% |
| Never non-adherent | 25 | 100% |
| Rarely non-adherent | 0 | 0% |
| Often non-adherent | 0 | 0% |
| Never non-adherent | 6 | 46.2% |
| Rarely non-adherent | 4 | 30.8% |
| Often non-adherent | 3 | 23.1% |
| Never non-adherent | 9 | 81.8% |
| Rarely non-adherent | 1 | 9.1% |
| Often non-adherent | 1 | 9.1% |
| Standard half-life | 30 | 58.8% |
| Extended half-life | 15 | 29.4% |
| Non-factor-based | 6 | 11.8% |
| Yes | 8 | 15.7% |
| No | 43 | 84.3% |
Summary of PwH statistics
| PwH who described their lives as normal | 24 of 50 | 48% |
| PwH who reported regular bleeds and/or joint pain, despite self-reported adherence to treatment | 22 of 45 | 49% |
| PwH who had experienced at least one bleed within the last year | 32 of 51 | 63% |
| PwH who reported disease-related limitations in activity levels | 40 of 51 | 78% |
| PwH who reported disease-related challenges with travel | 17 of 51 | 33% |
| PwH who stated that they tended to entrust their HCP with key decisions | 39 of 50 | 78% |
| PwH who described difficulty translating their HCP's concept of protection and activities based on factor levels into everyday life | 26 of 50 | 52% |
| PwH who described trying to ignore their condition, who were on prophylaxis, and were often or sometimes non-adherent | 8 of 9 | 89% |
| PwH who pointed to family members, patient organisations and summer camps as sources of information they use | 20 of 50 | 40% |
| PwH who reported that they obtain information from five or more different sources | 15 of 50 | 30% |