PHILADELPHIA, July 1, 2021 /PRNewswire/ — A brand new Health Union survey reveals the distinct distinction in expertise that folks with sickle cell illness usually face when interacting with their major healthcare professionals in comparison with emergency division employees, which may result in critical delays in wanted care and finally affect high quality of life. The inaugural Sickle Cell Illness In America survey illuminates the views and experiences of individuals dwelling with sickle cell illness.
These findings additionally help and gas content material and engagement for the latest launch of Sickle-Cell.com, Well being Union’s thirty first condition-specific on-line well being neighborhood.
Sickle cell illness is a bunch of inherited crimson blood cell issues. In line with the Facilities for Illness Management and Prevention, individuals with sickle cell illness have crimson blood cells which might be laborious, sticky and C-shaped – versus wholesome, spherical crimson blood cells.
Sickle cell illness is predominately managed by hematologists. The truth is, 92% of Sickle Cell Illness In America respondents mentioned they see a hematologist for his or her sickle cell illness, whereas eight in 10 respondents mentioned a hematologist is the first HCP managing their situation.
Fortuitously, respondents price their relationships with the healthcare professionals who primarily deal with and handle their situation overwhelmingly positively. That is the case throughout quite a lot of interpersonal and situation administration elements. Practically eight in 10 respondents mentioned their HCP is simple to speak to, listens to them and cares about them as an individual. And about three-fourths mentioned their HCP clearly explains remedy choices and supplies wonderful general care.
Nonetheless, survey findings present that sufferers’ experiences and relationships with emergency division employees may be much less constructive. As a result of irregular form of the blood cells of individuals with sickle cell illness, blood circulation can get clogged, which may result in an infection or a ache disaster that usually requires frequent visits to an emergency division. The truth is, 87% of respondents mentioned that they had visited an emergency division or pressing care middle throughout the earlier 12 months, with 1 / 4 visiting one in all these amenities not less than 5 occasions in that span.
Sadly, 65% of respondents who’ve visited an emergency division mentioned they really feel judged or stigmatized by the employees. That is in comparison with solely a 3rd who say they really feel judged or stigmatized by the HCPs they sometimes see for his or her sickle cell illness.
When requested about typical experiences with emergency division employees, numerous open-ended responses indicated employees usually hadn’t been well-versed in sickle cell illness, did not take them critically, gave them a tough time and handled them like drug seekers. One respondent recalled feeling judged throughout a hospitalization by a health care provider who “acknowledged I used to be drug in search of as a result of a sickle cell disaster may be managed with [an over-the-counter medication]. His assertion isn’t true!”
Because of these experiences, individuals with sickle cell illness may find yourself avoiding going to the emergency division, making entry to care more and more tough. The truth is, 24% of respondents mentioned they keep away from or hesitate visiting the emergency division as a result of value, however a bigger share – 43% – reported avoiding or hesitating going to an emergency division for concern of individuals judging them.
“Navigating the healthcare system can already be advanced, however present process such wildly completely different experiences could make entry to dependable, well timed, efficient care much more tough for individuals with sickle cell illness,” mentioned Olivier Chateau, Well being Union’s co-founder and CEO. “On-line well being communities, like Sickle-Cell.com, can go a good distance towards offering individuals dwelling with sickle cell illness the data, connection and help they want.”
The Sickle Cell Illness In America survey, which fielded from Oct. 19, 2020 to Feb. 26, 2021, included responses from 111 individuals dwelling with sickle cell illness. Extra survey outcomes could also be accessible upon request. Extra details about dwelling with sickle cell illness may be discovered on Sickle-Cell.com.
About Well being Union
Health Union, with the latest acquisition of WEGO Well being, maintains the biggest crew of specialists, affected person advocates and healthcare leaders devoted to social well being. The corporate encourages social interactions that evolve into invaluable on-line well being conversations, serving to individuals with power situations discover the data, connection, and validation they search. Well being Union creates condition-specific on-line communities – publishing unique, every day content material and constantly cultivating social dialog – to help, educate and join hundreds of thousands of individuals with difficult, power well being issues. The Well being Union household of manufacturers contains 34 online health communities, together with LungCancer.web, ParkinsonsDisease.web, MultipleSclerosis.web and Migraine.com.
SOURCE Well being Union