The impact of the COVID-19 pandemic on the emotional well-being and home treatment of Belgian patients with cystic fibrosis, including transplanted patients and paediatric patients

J Cyst Fibros. 2020 Nov;19(6):880-887. doi: 10.1016/j.jcf.2020.07.022. Epub 2020 Jul 31.


Background: Little is known about the impact of COVID-19 on patients with cystic fibrosis (CF), despite being considered a high-risk group. This study explored the early impact of COVID-19 on the emotional well-being of patients and self-reported changes in their home therapy since the start of the pandemic.

Methods: Adult patients with CF, lung-transplanted (LTX) CF patients and parents of children with CF completed an online questionnaire, securely linked to their medical files. The questionnaire covered the emotional impact of the pandemic, changes in CF and LTX treatment, changes in health-protecting behaviours and CF-related concerns, and their perception of their COVID-19 status.

Results: The response rate was 63% (80 CF, 66 LTX and 73 parents). A wide range of illness severity was included. None of the respondents had contracted COVID-19 and all strictly followed the social distancing rules. There was evident psychological impact, with many reporting increased stress, fear and worry about CF and the future. Changes in treatment were positive, including more physiotherapy for adults and better-quality nebulizing. Changes in routine were reported, such as different treatment timing. Adult patients and parents had cancelled their CF appointments more often since the start of the pandemic.

Conclusions: The initial psychological impact of COVID-19 was evident. The impact on home treatment was reassuringly small. Psychological care is needed for patients suffering prolonged psychological impact, and CF teams need to contextualize the information that patients and parents receive from the media and support them to balance the perceived risk with true risk.

Keywords: COVID-19; Cystic fibrosis; Home treatment; Lung transplantation; Psychological impact.

MeSH terms

  • Adult
  • Belgium / epidemiology
  • COVID-19* / epidemiology
  • COVID-19* / prevention & control
  • COVID-19* / psychology
  • Child
  • Communicable Disease Control / methods*
  • Cystic Fibrosis* / epidemiology
  • Cystic Fibrosis* / psychology
  • Cystic Fibrosis* / surgery
  • Female
  • Home Care Services* / organization & administration
  • Home Care Services* / trends
  • Humans
  • Lung Transplantation / statistics & numerical data
  • Male
  • Mental Health
  • Parents / psychology*
  • Physical Distancing
  • Psychological Distress*
  • Risk Assessment
  • SARS-CoV-2
  • Social Isolation / psychology*