The impact of home therapy interventions on treatment adherence and patient independence in haemophilia management in Assam, India

Dutta, Anupam; Ngongpa, Ajun; Gogoi, Papari

The impact of home therapy interventions on treatment adherence and patient independence in haemophilia management in Assam, India

The Journal of Haemophilia Practice

Volume 12 (2025): Issue 1 (January 2025)

By:

Anupam Dutta

, Ajun Ngongpa

and Papari Gogoi

Open Access

|Jul 2025

Figures & Tables

Structured delivery of services and support for patients with haemophiliaOutline of the four key components of the structured program designed to help patients overcome treatment barriers: onboarding, counselling, home therapy, and awareness training. These services were provided through coordinated in-clinic support and home visits by nurses with doctor oversight, ensuring patient education, self-infusion training, regular monitoring, and improved adherence to prophylactic treatment.

Baseline challenges and difficulties reported by study participants

Patient outcomes following regular nursing support services

Progressive shift towards self-infusion following nursing support and patient support program (n=29)

Baseline demographics of study participants (n=29)

	NUMBER (N)	PERCENTAGE (%)
Age group
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%
Education level
Pre-School	11	38%
Primary	8	28%
Secondary	2	7%
Higher Secondary	7	24%
Graduate	1	3%
Haemophilia severity
Mild	5	17%
Moderate	7	24%
Severe	17	59%
Treatment regimen
On-demand	13	44%
Prophylaxis	16	56%

Structured Training Plan

	COMPONENT	DETAILS
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 monthly reinforcement sessions for 6 months
5	Training duration	Each session lasts 45–60 minutes (can be extended as per individual participant's pace and understanding).
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	Understanding haemophilia: What is haemophilia, types, inheritance, complications Importance of prophylaxis: Preventive approach vs. on-demand treatment Reconstitution of factor: Step-by-step mixing of clotting factor vials Infusion technique: Hand hygiene, venipuncture, using vein-locators, sharps disposal Storage and transport: Factor storage temperature, cold chain maintenance during travel Infusion log maintenance: Recording date, dose, time, site, and any adverse reactions Emergency preparedness: What to do during bleeding, who to call, and when to seek hospital care
8	Training tools	Mannequins and vein-locator devices for practical demonstration Videos in local language on infusion and dosing Printed handbooks on self-care routines Infusion kits provided for home use
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

SECTION A: ADHERENCE TO THERAPY (To be completed by patient/caregiver)

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

SECTION B: PATIENT SATISFACTION (5-point Likert scale: 1 = Very dissatisfied, 5 = Very satisfied)

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)

OUTCOME MEASURE	BASELINE MEAN ± SD	FOLLOW-UP MEAN ± SD	MEAN DIFFERENCE	P-VALUE
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

DOI: https://doi.org/10.2478/jhp-2025-0010 | Journal eISSN: 2055-3390

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Language: English

Page range: 71 - 81

Published on: Jul 21, 2025

Published by: Haemnet Ltd

In partnership with: Paradigm Publishing Services

Publication frequency: 1 times per year

Keywords:

Related subjects:

Basic medical science,

Basic medical science, other,

Clinical medicine,

Clinical medicine, other,

Pharmacy,

Pharmacology

© 2025 Anupam Dutta, Ajun Ngongpa, Papari Gogoi, published by Haemnet Ltd
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.

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The impact of home therapy interventions on treatment adherence and patient independence in haemophilia management in Assam, India

Figures & Tables

Figure 1.

Figure 2.

Figure 3:

Figure 4.

Baseline demographics of study participants (n=29)

Structured Training Plan

Questionnaire to assess adherence to therapy and patient satisfaction

Results of joint health, functional status and quality of life of participants following home therapy intervention (n=29)

Paradigm

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