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

Abstract

Highlights COVID-19 had an impact on the emotional well-being of patients and parents of children with CF. Many patients report more sadness, discouragement, feelings of helplessness, greater criticism of others, perceptions of deterioration of the situation and difficulty with adhering to their routine. Symptoms of posttraumatic stress were elevated, which is worrying, especially if this psychological impact is sustained. Psychological follow-up is necessary to prevent the development of post-traumatic stress disorders. Adult patients with mild CF disease report more worries and stress compared to those with more severe disease. Contingency measures, family responsibilities, fear or deterioration and/or fear of losing control, may explain this unanticipated result. Further research is warranted. Many patients and parents of children with CF report positive changes in home treatment, including ‘eating extra and healthier’, ‘improvement in the quality of nebulizing’ and ‘better physiotherapy’. The challenge for both patients, parents and CF teams, is how to maintain these positive changes over time and promote permanence in resilience. It is important to contextualize the information patients and parents receive about COVID-19 from the media and to support them in balancing perceived risk and true risk. There is a crucial role for multidisciplinary teams, which can pro-actively connect with, inform and support the patients and parents.

Psychological distress in adults with and without cystic fibrosis during the COVID-19 lockdown

“…Evidence in support of our results comes from a recently published Belgian paper showing that the impact of the pandemic on the emotional wellbeing is not higher in pwCFs than in the general population [21] . Among 80 adults, more than 30% reported more sadness and negative thoughts about the future and more than 40% experienced increased levels of stress compared to the pre-epidemic period.…”

Primary care during the COVID-19 pandemic – observations and challenges identified through a survey and interviews with community paediatricians: the calm before the storm

“…Following the interviews, it seems most likely that reported cancellations are often children with chronic conditions who missed scheduled follow-up appointments. This finding is concordant with observations from previous epidemics and other settings, and a need to prepare for a higher number of follow-up visits as compensation has been stated [9,14]. Video consultations for patients with chronic conditions have been shown to be feasible across a range of settings [6,18].…”

“…These may be a good option for a group of patients reluctant to have face-to-face visits. Interruptions in regular therapies, like speech and language therapy or physiotherapy, have been highlighted as a problem across a range of countries [5,9,11].…”

Psychological Interventions during COVID Pandemic: Telehealth for Individuals with CF and Caregivers

“…Psychological symptoms in pwCF have been associated with worse adherence, more frequent hospitalizations, and earlier mortality [15,16]. Havermans et al (2020) characterized pwCF as atrisk for psychological symptomatology, reporting feelings of sadness, helplessness and difficulties adhering to prescribed treatments. Increased stress, negative thoughts, and trouble sleeping were also reported, combined with a sense of fear and worry.…”

“…Increased stress, negative thoughts, and trouble sleeping were also reported, combined with a sense of fear and worry. Parents of children with CF reported high levels of anxiety and disturbances in sleep [17,18].…”