Abstract 477P
Background
Issues: Social stigma, Fatigue, sexual dysfunction, Sleeplessness, depression commonly seen in hemophilia patients . Palliative inaccessible in rural/tribal areas. Hence our NGO took initiatives to help alleviate suffering of patients since October 2018. Objective: n=32. Of these statistically over 90% express sexual-dysfunction, 60% experience loneliness; 70% suffer social neglect/humiliation, 85% had depression. Importance of spirituality/religion in coping with terminal-illness is increasingly recognized Hence Our NGO-nurses involved community-leaders to make more women involved in our spiritual healing sessions.
Methods
We surveyed 32 subjects through QOL-questionnaires. After 8 weeks therapy with psychosocial support. Counseling & palliative care with anti-depressants/pain-killers/nutrition, QOL improved to statistically significant level. Requirement of palliative care evaluated by Palliative Care Problem Severity Scale (PCPSS). Traditional faith-healers involved for more psychological impact on patients community. Community leaders involved to reduce social stigma/discrimination among community.
Results
Currently 165 specialist palliative care beds required for our Rural/tribal population of 16,00,000. But only 40 available. 90% expressed that religious/community support/faith was most important factor that helped them to cope with Hemophilia. higher scores of QOL (ANOVA p < 0.001) correlated with pain and discomfort. Our NGO-initiative suggests that over 70% patients will need well trained specialist for home-based-care.
Conclusions
Life-span/QOL of hemophilia patients depends on social acceptance & appropriate-palliative-care. NGO-nurses should be trained in Palliative-care-services. Field of Spiritual/psycho-social/community support is fertile ground for further investigations. We need focused platform like ESMO-meetings to discuss our project ideas/concerns/difficulties with senior researchers.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
The author.
Funding
Has not received any funding.
Disclosure
The author has declared no conflicts of interest.