Author
Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 1/2022.
Together with the research panel (JamesLindCare), we conducted a survey on the quality of life of Alpha-1 patients during the pandemic. Thirty-four patients participated in 2021/2022; 21 completed the survey in full and are subsequently counted as 100 percent. Although this data can only provide a small insight into the experiences of people with lung diseases, specifically Alpha-1 patients, it nevertheless reflects the trends of nationwide surveys on quality of life during pandemics (see the survey by the Robert Koch Institute).
The results are as follows:
Our daily lives were significantly impacted by the Covid-19 pandemic, even after we had fully vaccinated. Alpha-1 patients are familiar with this, as many withdrew from public life, behaved cautiously, and protected themselves as best as possible.
The results in detail for the predominantly 41-60 year old (67 %) and predominantly male participants (62 %):
- With the exception of three individuals, all were diagnosed with alpha-1 antitrypsin deficiency (86 %)
- 100 of the respondents had been vaccinated at least twice.
- In the first year of the pandemic, the health status of 43 % remained unchanged, in 10 % it deteriorated significantly, in 33 % it deteriorated somewhat, and in 14 % it even improved slightly.
- 43 patients with % reported having no exacerbation in the past year: five had impaired lung function, seven had increasing shortness of breath, and five also had increased coughing/mucus production (multiple responses were possible here).
- More than half of the lung patients were afraid of contracting the disease (57 %), 38 % were worried that the lung disease would worsen.
- Last year, 95 people with type 1 diabetes visited their family doctor for various reasons, but only 81 visited their pulmonologist (who underwent, among other things, a lung function test). 24 people with type 1 diabetes received hospital treatment.
- 29 people with % visited their family doctor more often than before the pandemic, 10 people with % visited less often.
- 19 people with type 1 T3 visited their pulmonologist more often than before the pandemic, 14 people with type 1 T3 visited less often.
- 52 people with type 1 diabetes felt protected by the vaccination and dared to go out in public again, 14 people with type 1 diabetes were unsure and 33 people with type 1 diabetes felt unprotected.
- 71 % were afraid of further mutations of the coronavirus.
- 57 % attended all appointments at the hospital, 24 % avoided hospital visits despite acute problems, and 19 % only postponed scheduled appointments.
- 19 % say they have fears about the future
Similar results and additional information on therapy adherence were obtained from a survey conducted by the company Grifols among AlphaCare patients, which will be published shortly in the journal Pneumologie.
Thank you for your participation, which made it possible to present these interesting figures. We also encourage you to continue participating in surveys relevant to Alpha, which we will feature on our homepage banners. Thank you again for your future cooperation!
