Exploring patient and clinician perspectives on the benefits and risks of emerging therapies for the treatment of haemophilia: a qualitative study
John Spoors
- London School of Hygiene and Tropical MedicineLondon, UK
- NHS EnglandLondon, UK
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, Katherine Payne
Division of Population Health, Health Services and Primary Care, University of ManchesterManchester, UK
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, , , oraz 08 kwi 2024
O artykule
Kategoria artykułu: Clinical Research
Data publikacji: 08 kwi 2024
Zakres stron: 21 - 37
DOI: https://doi.org/10.2478/jhp-2024-0006
Słowa kluczowe
© 2024 John Spoors et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Figure 1:
Study methodology and participation
| PARTICIPANT ID | METHODOLOGY |
|---|---|
| Consultant Haematologist 1 | Focus groups |
| Consultant Haematologist 2 | |
| Advanced Nurse Practitioner 1 | |
| Advanced Nurse Practitioner 2 | |
| Advanced Nurse Practitioner 3 | |
| Patient 1 | |
| Patient 2 | |
| Patient 3 | |
| Patient 5 | |
| Patient 6 | |
| Consultant Haematologist 3 | 1:1 qualitative interviews |
| Consultant Haematologist 4 | |
| Consultant Haematologist 5 | |
| Consultant Haematologist 6 | |
| Consultant Haematologist 7 | |
| Patient 4 | |
| Patient 7 |
Summary of thematic codes
| PARTICIPANT GROUP | CONSULTANT HAEMATOLOGISTS (N=7) | ADVANCED NURSE PRACTITIONERS (N=3) | PATIENTS (N=7) |
|---|---|---|---|
| 50 | 18 | 30 | |
| 13 | 8 | 11 | |
Bias Clinician influence Clinician risk-training Clinician gateway for the NHS Cost containment Gene therapy Importance of MDT Media influence Nature of haemophilia as a disease Patient communication Risk Structure of consultations Uncertainty |
Benefit-risk Bias Gene therapy Inequity of focus Importance of MDT Timing of consultation Training Treatment choices |
Active vs. passive patients Consultation structure Evidence sources for new treatments Experience with current treatment and care Gateway for the NHS Gene therapy Geographical differences in care Health literacy Impact of blood inquiry Importance of MDT Treatment choices |
|
Active vs. passive patients Health literacy Gene therapy perspectives External factors Scar of blood infection scandal |
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