Exploring patient and clinician perspectives on the benefits and risks of emerging therapies for the treatment of haemophilia: a qualitative study

Figures & Tables

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

PARTICIPANT GROUP	CONSULTANT HAEMATOLOGISTS (N=7)	ADVANCED NURSE PRACTITIONERS (N=3)	PATIENTS (N=7)
Minor themes (n)	50	18	30
Major themes (n)	13	8	11
Major themes (list)	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
SUMMARY THEMES (N=5)
Active vs. passive patients Health literacy Gene therapy perspectives External factors Scar of blood infection scandal