Program evaluation of hemophilia society activities

Recruiting

Conditions: Hereditary factor IX deficiency, (2) ICD-10 Condition: D66||Hereditary factor VIII deficiency,

Registration Number: CTRI/2022/10/046558

Brief Summary: Hemophilia is an X-linked bleeding disorder, caused by an inherited deficiency of clotting factor VIII (hemophilia A) or factor IX (hemophilia B) which leads to spontaneous and posttraumatic bleeds. At present Indian hemophilia (Bleeding disorder) registry has close to 20,000 hemophilia patients all over the country, though we expect the number to swell near 85,000â€“1,00,000. People with hemophilia (PwH) and their families have diverse requirements and are best served by a multidisciplinary team of healthcare experts delivering coordinated, comprehensive care. Patient support programs are designed and implemented to provide personalized assistance and tailored interventions to improve patient health outcomes.

The purpose of the study is to:

Â·       Exploring the lived experiences of a PwH

Â·       Assessing the impact of the hemophilia society in the day-to-day life of a PwH

Â·       To assess the positive impact made by the hemophilia society in a PwH

Â·       Exploring the nature of participation of stakeholders in the facilitation of the activities of the hemophilia society

**Methods:** A multi method qualitative approach using in-depth interviews, focus group discussion and appreciative inquiry ,photo voice method(Photovoice is a qualitative, participatory, action-oriented data collection method whereby study participants use cameras to record their real-life experiences) will be conducted. The interview will be audio recorded with prior consent from the participant.

Detailed Description: Not available

Recruitment & Eligibility

Status: Open to Recruitment

Sex: All

Target Recruitment: 297

Inclusion Criteria

Persons with hemophilia, care givers (Mother, Fathers and close relatives) those associated for more than 2 years with the society, executive members of the chapters with >2 Years of experience as office bearer.

Exclusion Criteria

Females who are diagnosed with hemophilia, PwH who are not a member of a chapter, parents who are not living with PwH, non-residents of India.

Study & Design

Study Type: Observational

Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
The proposed study aims at exploring the day to day life and the impact of hemophiliacs being a part of the hemophilia society	16 months

Secondary Outcome Measures

Name	Time	Method
The evidence of the positive impacts made on the life of PwH and their family by the hemophilia society	12 months

Trial Locations

Locations (1): Manipal hemophilia society
🇮🇳
Udupi, KARNATAKA, India
Manipal hemophilia society
🇮🇳Udupi, KARNATAKA, India
Dr Sreejith G
Principal investigator
9980959353
g.sreejith@manipal.edu