Impact of COVID19 pandemic on patients with rare diseases in Spain, with a special focus on inherited metabolic diseases

Introduction The Covid-19 pandemic soon became an international health emergency raising concern about its impact not only on physical health but also on quality of life and mental health. Rare diseases are chronically debilitating conditions with challenging patient care needs. We aimed to assess the quality of life and mental health of patients with rare diseases in Spain, with a special focus on inherited metabolic disorders (IMD). Methods A prospective case-control study was designed, comparing 459 patients suffering from a rare disease (including 53 patients with IMD) and 446 healthy controls. Quality of life (QoL) and mental health were assessed using validated scales according to age: KINDL-R and the Pediatric Symptom Checklist (PSC) for children and the WhoQoL-Bref questionnaire, GAD and PHQ-9 in adults. Results First, children and adults (but not adolescents) with IMD showed greater psychological effects than controls (p = 0.022, p = 0.026 respectively). Second, when comparing QoL, only adult patients with IMD showed worse score than controls (66/100 vs 74,6/100 respectively, p = 0.017). Finally, IMD had better quality of life than other rare neurological and genetic diseases (p = 0.008) or other rare diseases (p < 0.001 respectively) but similar alteration of the mental status. Conclusions Our data show that the pandemic had a negative impact on mental health that is more evident in the group of patients with IMD. Young age would behave as a protective factor on the perception of QoL. Furthermore, patients with IMD show a better QoL than other rare diseases.

Impact of COVID19 pandemic on patients with rare diseases in Spain, with a special focus on inherited metabolic diseases.

Introduction: The Covid-19 pandemic soon became an international health emergency raising concern about its impact not only on physical health but also on quality of life and mental health. Rare diseases are chronically debilitating conditions with challenging patient care needs. We aimed to assess the quality of life and mental health of patients with rare diseases in Spain, with a special focus on inherited metabolic disorders (IMD). Methods: A prospective case-control study was designed, comparing 459 patients suffering from a rare disease (including 53 patients with IMD) and 446 healthy controls. Quality of life (QoL) and mental health were assessed using validated scales according to age: KINDL-R and the Pediatric Symptom Checklist (PSC) for children and the WhoQoL-Bref questionnaire, GAD and PHQ-9 in adults. Results: First, children and adults (but not adolescents) with IMD showed greater psychological effects than controls (p = 0.022, p = 0.026 respectively). Second, when comparing QoL, only adult patients with IMD showed worse score than controls (66/100 vs 74,6/100 respectively, p = 0.017). Finally, IMD had better quality of life than other rare neurological and genetic diseases (p = 0.008) or other rare diseases (p < 0.001 respectively) but similar alteration of the mental status. Conclusions: Our data show that the pandemic had a negative impact on mental health that is more evident in the group of patients with IMD. Young age would behave as a protective factor on the perception of QoL. Furthermore, patients with IMD show a better QoL than other rare diseases.

Social, Academic, and Health Status Impact of Long COVID on Children and Young People: An Observational, Descriptive, and Longitudinal Cohort Study.

There is a lack of evidence of the health impacts due to long COVID among children and young people (CYP). The objective of this study is to determine the main clinical characteristics of long COVID in CYP and to investigate the academic, social, and health status impacts of long COVID in this population. An observational, descriptive, and longitudinal study on CYP who presented COVID-19 symptoms for more than twelve weeks after SARS-CoV-2 infection was performed between December 2020 and May 2021. Fifty CYP were included, with a median age of 14.1 years, 33 (66%) were female, and 17 (34%) had a relative diagnosed with long COVID. Since the initial infection and up to the first visit, CYP had persisting symptoms for a median of 4.1 months, and for 18 (36%) CYP these symptoms persisted for more than 6 months. Fatigue (100%), neurocognitive disorders (74%), muscular weakness (74%), and headache (72%) were the most reported symptoms. A total of 9 (18%) CYP could not attend school, 17 (34%) had a reduced schedule, 33 (66%) showed a decreased school performance, and 68% had stopped extracurricular activities. This preliminary study shows the impact that long COVID has on the health, academic, and social life of CYP.

Maternal mental health and breastfeeding amidst the Covid-19 pandemic: cross-sectional study in Catalonia (Spain).

BACKGROUND: Covid-19 pandemic became an unexpected stressor for the entire population and, particularly, for pregnant women and lactating mothers. The alarming infectious risk together with the lockdown period could affect the emotional state of mothers-to-be, as well as breastfeeding rates, mother-baby bonding, or neonatal weight gain. The aim of this study is to describe the impact of this world health emergency in mother-baby pairs right after the first wave of Sars-Cov-2 pandemic (from March to May 2020). STUDY DESIGN: A prospective observational study was carried out in mother-child dyads from those women who gave birth between June and August 2020 in a tertiary hospital. 91 mother-baby pairs were initially enrolled and 56 of them completed the follow-up. The study design had two separate steps: i) Step one: A clinical interview plus three psychometric tests (EPDS: Edinburgh Postnatal Depression Scale, PBQ: Postpartum Bonding Questionnaire and STAI-S: State-Trait Anxiety Inventory); ii) Step two: mother-child dyads were followed using a round of three brief telephone interviews (conducted at the newborn's 7, 14 and 28 days of age) to accurately depict the newborn's outcome in the neonatal period. RESULTS: In terms of maternal mental health, 25% of the sample screens positively in the EPDS, requiring further evaluation to rule out depressive symptoms. STAI-state and PBQ detect no abnormalities in either anxiety levels or mother-child bonding in our sample, as 100% of the mothers score below the cut-off points in each test (34 and 26 respectively). When comparing feeding practices (breast/bottle feeding) in 2020 to those practices during pre-pandemic years (2017-2019), a significant increase in breastfeeding was found in pandemic times. All newborns in the sample showed an adequate weight gain during their first month of life. CONCLUSION: Women and newborns in our sample did not experience an increase in adverse outcomes in the neonatal period in terms of maternal mental health, breastfeeding rates, bonding and further neonatal development.

Maternal Mental Health and Breastfeeding amidst the Covid-19 Pandemic: outcomes in a Catalan cohort (preprint)

Background: Covid-19 pandemic became an unexpected stressor for the entire population and, particularly, for pregnant women and lactating mothers. The alarming infectious risk together with the lockdown period could affect the emotional state of mothers-to-be, as well as breastfeeding rates, mother-baby bonding, or neonatal weight gain. The aim of this study is to describe the impact of this world health emergency in mother-baby pairs right after the first wave of Sars-Cov-2 pandemic (from March to May 2020). Study design: a prospective observational study was carried out in mother-child dyads from those women who gave birth between June and August 2020 in a tertiary hospital. 91 mother-baby pairs were initially enrolled and 56 of them completed the follow-up. The study design had two separate steps: i) Step one: A clinical interview plus three psychometric tests (EPDS: Edinburgh Postnatal Depression Scale, PBQ: Postpartum Bonding Questionnaire and STAI-S: State-Trait Anxiety Inventory);ii) Step two: mother-child dyads were followed using a round of three brief telephone interviews (conducted at the newborn’s 7, 14 and 28 days of age) to accurately depict the newborn’s outcome in the neonatal period. Results: : In terms of maternal mental health, 25% of the sample screens positively in the EPDS, requiring further evaluation to rule out depressive symptoms. STAI-state and PBQ detect no abnormalities in either anxiety levels or mother-child bonding in our sample, as 100% of the mothers score below the cut-off points in each test (34 and 26 respectively). When comparing feeding practices (breast/bottle feeding) in 2020 to those practices during pre-pandemic years (2017-2019), a significant increase in breastfeeding was found in pandemic times. All newborns in the sample showed an adequate weight gain during their first month of life. Conclusion: Women and newborns in our sample did not experience an increase in adverse outcomes in the neonatal period in terms of maternal mental health, breastfeeding rates, bonding and further neonatal development.

Association of serum interleukin-6 and C-reactive protein with depressive and adjustment disorders in COVID-19 inpatients.

BACKGROUND: Immune mechanisms are part of the pathophysiology of mental disorders, although their role remains controversial. In depressive disorders a chronic low-grade inflammatory process is observed, with higher interleukin-6 (IL-6) values. Furthermore, in SARS-CoV2 infection, which is closely related to depressive disorders, there is a proinflammatory cascade of cytokines that causes systemic inflammation. METHODS: The present study evaluates the relationship between IL-6 and C-reactive protein (CRP) serum levels and the presence of depressive and adjustment disorders in a sample of 1851 patients admitted to hospital for SARS-CoV2 infection from March to November 2020. Concentrations of IL-6 and CRP were determined within the first 72 â€‹h at admission and compared among groups of patients according to previous history and current presence of depression or adjustment disorders. RESULTS: IL-6 serum levels were significantly higher in the group of patients with depression and adjustment disorders compared to patients without such disorders (114.25 â€‹pg/mL (SD, 225.44) vs. 86.41 (SD, 202.97)), even after adjusting for several confounders. Similar results were obtained for CRP (103.94 â€‹mg/L (SD, 91.16) vs. 90.14 (SD, 85.73)). The absolute levels of IL-6 and CRP were higher than those of previous depression studies, and differences were only found for the subgroup of De Novo depressive or adjustment disorders. CONCLUSIONS: Serum concentrations of IL-6 and CRP are higher in COVID-19 patients with De Novo but not persistent depressive or adjustment disorders. Clinical features such as fatigue, asthenia, anhedonia, or anxiety can be the basis for this finding.

Mental disorders, psychopharmacological treatments, and mortality in 2150 COVID-19 Spanish inpatients.

OBJECTIVE: To determine how mental disorders and psychopharmacological treatments before and during COVID-19 hospital admissions are related to mortality. METHODS: Subjects included in the study were all adult patients with a diagnosis of COVID-19, confirmed clinically and by PCR, who were admitted to a tertiary university hospital in Badalona (Spain) between March 1 and November 17, 2020. Data were extracted anonymously from computerized clinical records. RESULTS: 2,150 subjects were included, 57% males, mean age 61 years. History of mental disorders was registered in 957 (45%). Throughout admission, de novo diagnosis of mood or anxiety, stress, or adjustment disorder was made in 12% of patients without previous history. Delirium was diagnosed in 10% of cases. 1011 patients (47%) received a psychotropic prescription during admission (36% benzodiazepines, 22% antidepressants, and 21% antipsychotics). Mortality rate was 17%. Delirium during admission and history of mood disorder were independently associated with higher mortality risk (hazard ratios, 1.39 and 1.52 respectively), while previous year's treatments with anxiolytics/hypnotics and antidepressants were independently associated with lower mortality risk (hazard ratios, 0.47 and 0.43, respectively). CONCLUSION: Mental symptoms are very common in patients hospitalized for COVID-19 infection. Detecting, diagnosing, and treating them is key to determining the prognosis of the disease and functional recovery.