Aim: Approximately 10% of all COVID-19 cases experience persistent symptoms after the acute infection phase, a condition known as long COVID or post-acute sequelae of COVID-19. Approved prevention and treatment options for long COVID are currently lacking. Given the heterogeneous nature of long COVID, a personalized medicine approach is essential for effective disease management. This study aimed to describe trends in pharmacotherapy from pre-COVID to post-COVID phases to gain insights into COVID-19 treatment strategies and assess whether pre-COVID pharmacotherapy can predict long COVID symptoms as a health status indicator. Methods: In the Precision Medicine for more Oxygen (P4O2) – COVID-19 study, 95 long COVID patients were comprehensively evaluated through post-COVID outpatient clinics and study visits. The study focused on descriptive analysis of the pharmacotherapy patterns across different phases: pre-COVID-19, acute COVID, and post-COVID. Furthermore, associations between pre-COVID medication and long COVID outcomes were analyzed with regression analyses. Results: We observed peaks in the use of certain medications during the acute infection phase, including corticosteroids and antithrombotic agents, with a decrease in the use of renin-angiotensin inhibitors. Consistent high use of alimentary tract medications was noted across all phases. Notably, pre-COVID respiratory medications were associated with fatigue symptoms, while antiinfectives and cardiovascular drugs were linked to fewer persisting long COVID symptom categories. Conclusion: Our findings provide longitudinal descriptive pharmacotherapy insights and suggest that medication history can be a valuable health status indicator in characterizing patients for personalized disease management strategies, addressing the heterogeneous nature of long COVID.

Background: People with CF (pwCF) frequently have gastrointestinal symptoms (GI), including abdominal pain and irregular bowel movements. These are often embarrassing, difficult to report, and frequently missed. Thus, a GI Symptom Tracker was created and validated in the US and translated and validated in Dutch. This questionnaire consists of four subscales: Eating Challenges, Stools, Adherence Challenges and Abdominal Symptoms. Aim of this study was to investigate the relationship between GI symptoms, anxiety/depression and health-related quality of life (HRQoL) in Dutch pwCF. Methods: In this prospective, cross-sectional single-center pilot study, pwCF completed the Dutch GI Symptom Tracker, GAD-7 (anxiety), PHQ-9 (depression), and CFQ-R (HRQoL) from Sept 2021-June 2022. Regression analyses were used to analyze the univariable associations between GI symptoms, anxiety/depression and HRQoL. Results: 51 pwCF were enrolled consecutively ( n= 41 adults, 66% female, mean age (y) [range]= 32.7 [19-71] & n=10 adolescents, 70% female, mean age (y) [range]= 14.2 [12-17]). Elevated levels of anxiety (scores ≥10 on GAD-7) were found in 17% of adults and 0% of adolescents. Elevated depression scores ( ≥10 on PHQ-9) were found in 9% of adults and 20% of adolescents. GI scales ‘Eating Challenges’ and ‘Stools’ were significantly, positively associated with elevated symptoms of anxiety and depression. Most GI scales were associated with lower HRQoL. Conclusion: This is the first study investigating the link between GI symptoms assessed by the Dutch GI Symptom Tracker and anxiety/depression and HRQoL in Dutch pwCF. More GI symptoms were associated with higher anxiety and depression scores and worse health-related quality of life. Additional research is needed to better understand how mental and physical health are linked in CF.

Background: Sickle cell disease (SCD) is characterized by vaso-occlusive crises (VOCs), that impair the health-related quality of life (HRQoL). The aim of this study is to evaluate the impact of hospitalization for VOCs on HRQoL in children with SCD over time. Methods: In this longitudinal cohort study, children aged 8-18 years diagnosed with SCD at the Amsterdam UMC were included between 2012 and 2021. HRQoL was annually measured as part of standard care using the Pediatric Quality of Life Inventory. The impact of hospitalization for VOC on HRQoL was evaluated using linear mixed models 3, 6, 9 and 12 months after hospitalization. The effect of frequency of hospitalization for VOC on HRQoL was evaluated over the last 12 months. Results: In total , 94 children with SCD were included with a median age of 11.8 years (IQR 9-14). Thirty-seven patients (39%) had been hospitalized for a VOC. Hospitalization for VOC led to a decrease of 3.2-4.8 points in total HRQoL compared to patients without hospitalization, most pronounced 3 months after hospitalization. Recurrent admission for VOC in the last 12 months was associated with a decrease of 2.3 points in total HRQoL (p=0.04). The most affected subscale was physical functioning. Conclusion: The adverse effects of hospitalization for VOC in children with SCD persist up to 12 months after hospitalization. After hospitalization for VOC, extra attention and support for its negative impact on HRQoL are recommended. This study also underlines the importance of systematically measuring HRQoL allowing clinicians to intervene accordingly.

Background. The COVID-19 pandemic has spread across the world, leading to government measures associated with a negative impact on mental health. The aim of this study was to evaluate the impact of COVID-19 on depression, anxiety and resilience in Dutch people with cystic fibrosis (PwCF) or primary ciliary dyskinesia (PwPCD) and their caregivers during the pandemic. Methods. Adolescents (12-17 years), adults and caregivers of children (0-17 years) with CF or PCD completed questionnaires on depression (PHQ-9), anxiety (GAD-7) and resilience (BRS) between September 2020 and February 2021. The psychosocial impact of COVID-19 was measured by the Exposure and Family Impact Survey (CEFIS) Part 2. Mixed model analyses compared PHQ-9 and GAD-7 results to participants’ pre-pandemic scores. Results. 110 participants (10 PwCF, 31 PwPCD, 52 CF caregivers, 17 PCD caregivers) completed questionnaires during the pandemic. Pre-pandemic outcomes were available for 87 participants. The prevalence of symptoms of depression and anxiety (PHQ-9 or GAD-7 scores ≥5) in PwCF and PwPCD and their caregivers before and during the pandemic was high, with an increase in depression in PwCF (2.75; 95%-CI: 0.82 to 4.68) and increase in anxiety in CF caregivers (1.03; 0.09 to 1.96) during the pandemic. Resilience was within the normal range for all groups, CEFIS scores corresponded to a low to normal impact. Conclusion. PwCF and PwPCD and their caregivers were at high risk of increased depression and anxiety symptoms both before and during the pandemic, which emphasizes the importance of mental health screening and psychological care in CF and PCD.