“I’d go on a hike with my kids… that would make me feel so happy.” Recognising what people with haemophilia B identify as meaningful when considering personal goals and the potential for gene therapy
, , Richard Gorman
Brighton and Sussex Medical School, University of SussexUK
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, , , e 19 mar 2025
INFORMAZIONI SU QUESTO ARTICOLO
Categoria dell'articolo: Community Focus
Pubblicato online: 19 mar 2025
Pagine: 1 - 14
DOI: https://doi.org/10.2478/jhp-2025-0001
Parole chiave
© 2025 Kate Khair et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Figure 1.
Figure 2.
Code tree, themes and sub-themes identified through workshops and interviews
| Living with haemophilia | Frustrations | Bleeds |
| Mobility | ||
| Joints | ||
| Pain | ||
| Treatment | ||
| IV access | ||
| Not being held back | ||
| Infected blood | ||
| The next generation | ||
| Goals | Achievable goals | Family/relationships |
| Education | ||
| Employment | ||
| Sport | ||
| Travel | ||
| Unachievable goals | Family/relationships | |
| Education | ||
| Employment | ||
| Sport | ||
| Travel | ||
| Future goals | Family/relationships | |
| Employment | ||
| Sport | ||
| Travel | ||
| Gene therapy | Uncertainty | Need for more information |
| Equitable access | ||
| The next generation | ||
| Psychological support | ||
| What gene therapy might offer | ||