PROMISE: Working with the CF community to understand emerging clinical and research needs for those treated with highly effective CFTR modulator therapy

Highly effective CFTR modulator drug therapy is increasingly available to those with cystic fibrosis. Multiple observational research studies are now being conducted to better understand the impacts of this important therapeutic milestone on long-term outcomes, patient care needs, and future research priorities. PROMISE is a large, multi-disciplinary academic study focused on the broad impacts of starting elexacaftor/tezacaftor/ivacaftor in the US population age 6 years and older. The many areas of investigation and rationale for each are discussed by organ systems, along with recognition of remaining important questions that will not be addressed by this study alone. Knowledge gained through this and multiple complementary studies around the world will help to understand important health outcomes, clinical care priorities, and research needs for a large majority of people treated with these or similarly effective medications targeting the primary cellular impairment in cystic fibrosis.     

An Investigation of Sexual and Relationship Adjustment During COVID-19

The COVID-19 pandemic and the mitigation measures put in place have resulted in universal disruption in the usual ways of life for individuals. The current study sought to investigate how aspects of sexual health (well-being and functioning) and relationship satisfaction changed or remained stable during the pandemic. During two separate time points (Time 1 including Time 1 and a retrospective baseline, Time 2), participants completed online measures of sexual well-being (sexual pleasure, partnered and solitary orgasm frequency, sexual distress), sexual functioning, and relationship satisfaction. Participants reported slight declines in sexual pleasure, frequency of orgasms with a partner, and frequency of solitary orgasms from pre-COVID-19 (retrospective baseline) to Time 1, with no significant differences in sexual distress and relationship satisfaction. For individuals with vulvas, sexual functioning improved from Time 1 to Time 2, whereas no significant differences in sexual functioning were observed for individuals with penises. Aspects of sexual health and relational satisfaction did not sufficiently change across time points to be considered meaningful health outcome changes. Given that minimal disruptions were noted in pre-COVID-19 to COVID-19 sexuality, these results highlight the potential resiliency of individuals’ sexuality when facing sudden changes in their daily lives. Implications of COVID-19’s effects on sexual well-being and relationship satisfaction research are broadly discussed.

     

Early childhood exposure to intimate partner violence and teen depression symptoms in the U.S.

Among the various negative outcomes of intimate partner violence (IPV) exposure to children, depression symptoms are worthy of attention given the effects on well-being and long-term achievement. This study examined the effects of early childhood exposure to IPV between ages 1 and 3 on depression symptoms at age 15 and investigated whether maternal physical punishment at age 5 and peer bullying victimisation at age 9 affected the association. Data came from five waves of the Fragile Families and Child Wellbeing Study. The study was based on 20 U.S. cities with populations of over 200,000 people. The most recent wave of data collection occurs during the period between 2014 and 2017. The final analytic sample was 1,690 children. Structural equation modeling was utilised to examine the effects of exposure to IPV on physical punishment, bullying victimisation, and depression symptoms. Early exposure to IPV was associated with experiencing physical punishment at Year 5, which subsequently increased peer bullying victimisation at Year 9 and then depression symptoms at Year 15. Early exposure to IPV had a direct effect on depression symptoms at Year 15. Early exposure to IPV also had indirect effects on Year 15 depression symptoms through its effects on physical punishment and bullying victimisation. The total standardised effect of early exposure on depression symptoms was 0.06. Consistent with trauma theory and the ecobiodevelopmental framework, the results indicate that exposure to IPV appeared to have a long-term effect on children, manifested in teen depression symptoms.