Abstract
Background
Enhanced horizon scanning for emerging treatments has identified that both haemophilia A and haemophilia B pathways will be enriched with a range of new medicines with varying risk-benefit profiles. Patient and clinician views of the balance of the benefits and risks associated with emerging therapies will affect their subsequent use for the treatment of haemophilia, while also, introducing the need for effective communication strategies to enable informed patient-clinician decision-making.
Aim
This study aimed to explore the views of patients and clinicians about the perceived benefits and risks of emerging therapies for the treatment of haemophilia. The study also aimed to gain insight into clinician-patient communication on benefit and risk and how this shapes decisions on new therapeutic options.
Methods
Qualitative methods, using online focus groups and one-to-one interviews, which were guided by a defined set of questions. Data were collected in 2022 and 2023 from a sample of adult patients identified through the national patient group (the Haemophilia Society) and clinicians identified through the NHS Clinical Reference Group (CRG) and HAEM-NET. Data were analysed using a combination of theoretic and inductive thematic analysis.
Findings
The final sample included seven patients and ten clinicians (seven consultant haematologists; three advanced nurse practitioners). Five summary themes were extracted and analysed in the research with three themes relating to clinician-patient communication: (i) active vs passive patients (ii) health literacy (iii) external factors, one theme relating to gene therapy perspectives on benefit-risk and one theme on the scar of the blood infection scandal.
Conclusion
There remains scepticism about gene therapy across all research participant groups which suggests that uptake is likely to be relatively slow with divergence anticipated between haemophilia A and B. Treatment decision-making and risk-benefit discussions are complex and multi-faceted issues which in haemophilia are heavily influenced by the infected blood scandal. Clinicians frame treatment decision-making which necessitates the requirement for risk-benefit training and high-quality tailored patient gene therapy information materials.
Enhanced horizon scanning for emerging treatments has identified that both haemophilia A and haemophilia B pathways will be enriched with a range of new medicines with varying risk-benefit profiles. Patient and clinician views of the balance of the benefits and risks associated with emerging therapies will affect their subsequent use for the treatment of haemophilia, while also, introducing the need for effective communication strategies to enable informed patient-clinician decision-making.
Aim
This study aimed to explore the views of patients and clinicians about the perceived benefits and risks of emerging therapies for the treatment of haemophilia. The study also aimed to gain insight into clinician-patient communication on benefit and risk and how this shapes decisions on new therapeutic options.
Methods
Qualitative methods, using online focus groups and one-to-one interviews, which were guided by a defined set of questions. Data were collected in 2022 and 2023 from a sample of adult patients identified through the national patient group (the Haemophilia Society) and clinicians identified through the NHS Clinical Reference Group (CRG) and HAEM-NET. Data were analysed using a combination of theoretic and inductive thematic analysis.
Findings
The final sample included seven patients and ten clinicians (seven consultant haematologists; three advanced nurse practitioners). Five summary themes were extracted and analysed in the research with three themes relating to clinician-patient communication: (i) active vs passive patients (ii) health literacy (iii) external factors, one theme relating to gene therapy perspectives on benefit-risk and one theme on the scar of the blood infection scandal.
Conclusion
There remains scepticism about gene therapy across all research participant groups which suggests that uptake is likely to be relatively slow with divergence anticipated between haemophilia A and B. Treatment decision-making and risk-benefit discussions are complex and multi-faceted issues which in haemophilia are heavily influenced by the infected blood scandal. Clinicians frame treatment decision-making which necessitates the requirement for risk-benefit training and high-quality tailored patient gene therapy information materials.
| Original language | English |
|---|---|
| Journal | The Journal of Haemophilia Practice |
| Volume | 11 |
| Issue number | 1 |
| DOIs | |
| Publication status | Published - 10 Apr 2024 |
