The impact of home therapy interventions on treatment adherence and patient independence in haemophilia management in Assam, India
Anupam Dutta
Orcid profile, Ajun Ngongpa
Orcid profile and Papari Gogoi
Orcid profile 
Article Category: Clinical Practice
Published Online: Jul 21, 2025
Page range: 71 - 81
DOI: https://doi.org/10.2478/jhp-2025-0010
Keywords
© 2025 Anupam Dutta et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
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Figure 4.
Baseline demographics of study participants (n=29)
| 2–6 years | 3 | 11% |
| 7–11 years | 3 | 10% |
| 12–16 years | 5 | 17% |
| 16–20 years | 4 | 14% |
| 21 years & above | 14 | 48% |
| Pre-School | 11 | 38% |
| Primary | 8 | 28% |
| Secondary | 2 | 7% |
| Higher Secondary | 7 | 24% |
| Graduate | 1 | 3% |
| Mild | 5 | 17% |
| Moderate | 7 | 24% |
| Severe | 17 | 59% |
| On-demand | 13 | 44% |
| Prophylaxis | 16 | 56% |
Structured Training Plan
| 1 | Objective | To equip patients and caregivers with the skills and confidence to safely perform self-infusion and manage haemophilia at home |
| 2 | Target audience | People with haemophilia A or B (age ≥2 years) and their caregivers (if applicable) |
| 3 | Trainers | Trained haemophilia nurses and educators under supervision of the treating physician |
| 4 | Training timeline | Initial onboarding (Week 1), followed by |
| 5 | Training duration | Each session lasts |
| 6 | Mode of delivery |
In-person group workshops (monthly at the treatment centre) One-on-one bedside or home-based training during nurse visits Digital resources (videos, pamphlets, visual aids in English and Assamese) |
| 7 | Standard training content |
|
| 8 | Training tools |
Printed |
| 9 | Assessment methods |
Practical demonstration by patient/caregiver- Q&A checklist on dosing, preparation, and complication recognition Periodic nurse evaluation during follow-up home visits |
| 10 | Standardisation protocol |
All trainers (Nurses) follow a common SOP Patient handouts and videos used uniformly across all sessions |
| 11 | Documentation | Training logs, session attendance, and competency checklists maintained by nurses and submitted monthly. |
| 12 | Challenges addressed |
Fear of venipuncture: Overcome with repeated mannequin practice Literacy issues: Resolve via pictorial instructions and caregiver involvement Remote access: Home visits to ensure no patient is left unsupported |
Questionnaire to assess adherence to therapy and patient satisfaction
| 1. How many doses of factor therapy were you prescribed per week? |
| □1 □2 □3 □Other:_____________________________________ |
| 2. In the past month, how many times did you miss a scheduled dose? |
| □0 □1–2 □3–5 □>5 |
| 3. If you missed doses, what were the reasons? (Tick all that apply) |
| □Forgot |
| □Factor not available |
| □Travel issues |
| □Felt well |
| □Fear or difficulty with infusion |
| □Other:_____________________________________ |
| 4. Who usually administers the infusion at home? |
| □Self □Parent/Caregiver □Nurse □Go to hospital |
| 5. Do you follow the prescribed dosing schedule regularly? |
| □Always □Often □Sometimes □Rarely □Never |
| 6. How satisfied are you with the self-infusion training you received? |
| □1 □2 □3 □4 □5 |
| 7. How helpful were the nurse visits to your home? |
| □1 □2 □3 □4 □5 |
| 8. How confident do you feel in managing your condition at home? |
| □1 □2 □3 □4 □5 |
| 9. Do you feel you have adequate knowledge about your treatment? |
| □1 □2 □3 □4 □5 |
| 10. Overall, how satisfied are you with the home therapy support provided? |
| □1 □2 □3 □4 □5 |
Results of joint health, functional status and quality of life of participants following home therapy intervention (n=29)
| Annual Bleed Rate (ABR) | 11.31 ± 5.90 | 6.86 ± 6.71 | 4.45 | < 0.00001 |
| Haemophilia Joint Health Score (HJHS) | 12.83 ± 6.60 | 10.48 ± 8.36 | 2.34 | 0.0016 |
| FISH (Functional Independence Score in Haemophilia) | 14.97 ± 4.49 | 13.76 ± 5.35 | 1.21 | 0.0021 |
| EQ-5D-5L (Quality of life) | 9.24 ± 2.28 | 8.17 ± 3.24 | 1.07 | 0.0039 |