We ran an anonymized COVID survey amongst the patient leaders of our members to map the effect of the COVID pandemic so far. We received 24 responses from our 33 member associations, which might reflect unbiased data. The responses suggest that the main concern PH patients have is the financial impact of the pandemic, however, we received quite high ratings for medication and medical check-up difficulties. We learn from the PH reference center survey that most of the follow-ups were conducted in a virtual way and only in 3% of the cases there was no follow-up, but this is the field which needs further investigation.
Surprisingly, the lack of COVID vaccine concerns the least of our respondents, still representing 58 out of 100 points.
The other set of questions focused on the hurdles patient leaders are facing when running the local PH associations. The biggest challenge is unquestionable the financial difficulties: this point received an average of 71 of 100 points highly outnumbering the second one, which is lack of resources to provide psycho-social support (52 of 100).
We also received free-text responses as part of the survey: the main concerns were the lockdowns and the effects social distancing brought in. At the same time an interesting opinion popped-up: one of the respondents mentioned the ignorance of people (to the measures) and the irresponsible behavior.
iThe survey was disseminated through our internal mailing list which – in case most of the associations – consist of more than one people per association.