The impact of home therapy interventions on treatment adherence and patient independence in haemophilia management in Assam, India
Anupam Dutta
Orcid-Profil, Ajun Ngongpa
Orcid-Profil und Papari Gogoi
Orcid-Profil 
Artikel-Kategorie: Clinical Practice
Online veröffentlicht: 21. Juli 2025
Seitenbereich: 71 - 81
DOI: https://doi.org/10.2478/jhp-2025-0010
Schlüsselwörter
© 2025 Anupam Dutta et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Figure 1.
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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 |