Contributions
Abstract: EP1195
Type: E-Poster Presentation
Session title: Quality of life, palliative care, ethics and health economics
Background
The patient is the main constant in the delivery of health care throughout the world, patient advocacy organizations play a critical role in increasing public awareness of a specific disease and in demanding improvement in approaches to treatment. Patients advocacy group also enables patients to make informed decisions about their disease and to be responsible members of the health care team. To do this, patients must be informed about their condition and their treatment options, and given the opportunity to express their understanding, values and beliefs. They must be given the time and encouragement to ask questions, raise concerns, and express their feelings about what is happening to them.
Aims
We aimed to raise the awareness of Immune thrombocytopenia being not uncommon disease anymore
Methods
we targeted ITP patients as well as their families, friends and normal populations through regular direct group meetings, webinars, telemedicine and Facebook page in order to increase the awareness of ITP, correct the wrong believes about the disease which may leads to wrong behaviors.
Results
Our patient advocacy group was initiated in 2017 by doing many patients regular meetings explaining disease in simple Arabic language in collaboration with different medical specialties like gynecology, nutrition and psychiatry teams, raising the awareness of the disease by celebrating the ITP awareness month in September each year with patients and their families, also we became part of ITP global group actively participating in their activities. We initiated Facebook campaign supported by Novartis pharama. Our campaign achieved in 4 months duration (from august 2020 to December 2020) 155.537 followers, with 673.157 post engagements, 78% of the followers were female (68% of them were between 25-45 years old), 126.031 were Egyptian followers but other followers were from middle east countries as Saudi Arabia, Libya, UAE, Kuwait, Algeria, Jordon and morocco. All information about ITP were discussed in native simple language especially the nature of ITP, clinical pictures, diagnosis, goals for treatment, models of treatment, potential difficulties in adherence to treatment and Plan how to overcome these difficulties Most interaction were noticed in posts about COVID19 and ITP especially vaccination issue. Regarding questions which were asked frequently; 'how to know that I have thrombocytopenia' 'what to do in pregnancy' and 'what are the symptoms of ITP'.
Conclusion
Patient–health professional relationships which are grounded in effective communication, trust, reciprocal information, mutual understanding and respect are a foundation, and even a prerequisite for effective and efficient care
Keyword(s): Immune thrombocytopenia (ITP), Patient
Abstract: EP1195
Type: E-Poster Presentation
Session title: Quality of life, palliative care, ethics and health economics
Background
The patient is the main constant in the delivery of health care throughout the world, patient advocacy organizations play a critical role in increasing public awareness of a specific disease and in demanding improvement in approaches to treatment. Patients advocacy group also enables patients to make informed decisions about their disease and to be responsible members of the health care team. To do this, patients must be informed about their condition and their treatment options, and given the opportunity to express their understanding, values and beliefs. They must be given the time and encouragement to ask questions, raise concerns, and express their feelings about what is happening to them.
Aims
We aimed to raise the awareness of Immune thrombocytopenia being not uncommon disease anymore
Methods
we targeted ITP patients as well as their families, friends and normal populations through regular direct group meetings, webinars, telemedicine and Facebook page in order to increase the awareness of ITP, correct the wrong believes about the disease which may leads to wrong behaviors.
Results
Our patient advocacy group was initiated in 2017 by doing many patients regular meetings explaining disease in simple Arabic language in collaboration with different medical specialties like gynecology, nutrition and psychiatry teams, raising the awareness of the disease by celebrating the ITP awareness month in September each year with patients and their families, also we became part of ITP global group actively participating in their activities. We initiated Facebook campaign supported by Novartis pharama. Our campaign achieved in 4 months duration (from august 2020 to December 2020) 155.537 followers, with 673.157 post engagements, 78% of the followers were female (68% of them were between 25-45 years old), 126.031 were Egyptian followers but other followers were from middle east countries as Saudi Arabia, Libya, UAE, Kuwait, Algeria, Jordon and morocco. All information about ITP were discussed in native simple language especially the nature of ITP, clinical pictures, diagnosis, goals for treatment, models of treatment, potential difficulties in adherence to treatment and Plan how to overcome these difficulties Most interaction were noticed in posts about COVID19 and ITP especially vaccination issue. Regarding questions which were asked frequently; 'how to know that I have thrombocytopenia' 'what to do in pregnancy' and 'what are the symptoms of ITP'.
Conclusion
Patient–health professional relationships which are grounded in effective communication, trust, reciprocal information, mutual understanding and respect are a foundation, and even a prerequisite for effective and efficient care
Keyword(s): Immune thrombocytopenia (ITP), Patient