Feasibility and Participants' Satisfaction

The Internet-based psychotherapeutic intervention Onco-STEP for adolescent and young adult (AYA)-aged survivors of pediatric cancer was developed, implemented, and participants' satisfaction was evaluated by use of questionnaires. The intervention consisted of two modules: “Looking Back,” aimed to reduce posttraumatic stress symptoms, and “Looking Ahead,” supported coping with cancer-related fears of relapse and progression. The writing program was fully completed by 20 participants (Mage=27.3±4.8 years at study; 70% female). The majority was satisfied and perceived the treatment components as helpful. Results demonstrate that an Internet-based psychotherapeutic intervention for AYA-aged survivors of pediatric cancer is feasible and accepted by the target population

a pilot study

Background Parents caring for a child with Cystic Fibrosis (CF) are at high risk for psychological distress and have limited access to psychological care. Therefore, a web-based psychological support program for severely distressed parents of children with CF (WEP-CARE) was developed and evaluated for its feasibility and efficacy. Methods A clinical expert panel developed WEP-CARE based on principles of cognitive-behavioral therapy. This web-based writing therapy comprises nine sessions, tailored for the specific needs of caregivers. The pilot study was conducted as a single-group intervention with pre-post-follow-up design. Out of 31 participants, 23 parents completed the intervention (21 female; mean age 37 years; SD = 6.2 years, range 25 – 48 years). Psychological symptoms and quality of life were assessed online by self-report measures at pre- and post-treatment and were followed up three months later. Results On average, the caregivers’ symptoms of anxiety decreased statistically significant and clinical relevant about five points from an elevated (M = 11.4; SD =2.6) to a normal level (M = 6.7; SD = 2.6; p < .001) between pre and post treatment. Fear of disease progression (p < .001) and symptoms of depression (p = .02) significantly decreased as well. Quality of life significantly improved (p = .01). The effects were maintained at the 3-months follow-up assessment. Conclusions WEP-CARE is feasible and promising regarding its efficacy to improve parental mental health and quality of life

Factors Associated with Immunization Opinion Leadership among Men Who Have Sex with Men in Los Angeles, California

We sought to identify the characteristics of men who have sex with men (MSM) who are opinion leaders on immunization issues and to identify potential opportunities to leverage their influence for vaccine promotion within MSM communities. Using venue-based sampling, we recruited and enrolled MSM living in Los Angeles (N = 520) from December 2016 to February 2017 and evaluated characteristic differences in sociodemographic characteristics, health behaviors, and technology use among those classified as opinion leaders versus those who were not. We also asked respondents about their past receipt of meningococcal serogroups A, C, W, and Y (MenACWY) and meningococcal B (MenB) vaccines, as well as their opinions on the importance of 13 additional vaccines. Multivariable results revealed that non-Hispanic black (aOR = 2.64; 95% CI: 1.17–5.95) and other race/ethnicity (aOR = 2.98; 95% CI: 1.41–6.29) respondents, as well as those with a history of an STI other than HIV (aOR = 1.95; 95% CI: 1.10–3.48), were more likely to be opinion leaders. MenACWY (aOR = 1.92; 95% CI: 1.13–3.25) and MenB (aOR = 3.09; 95% CI: 1.77–5.41) vaccine uptake, and perceived importance for these and seven additional vaccines, were also associated with being an opinion leader. The results suggest that the co-promotion of vaccination and other health promotion initiatives via opinion leaders could be a useful strategy for increasing vaccination among MSM

Fertility education for adolescent cancer patients: Gaps in current clinical practice in Europe

Objective: As adolescent cancer patients may suffer from infertility following treatment, fertility counselling is essential. Our aim was to explore the current situation in four European countries in terms of (I) education about the risk for infertility, (II) counselling on fertility preservation, (III) patients' knowledge on fertility, (IV) sufficiency of information and (V) uptake of cryopreservation. Methods: In total, 113 patients (13–20 years) at 11 study centres completed a self-report questionnaire three and six months after cancer diagnosis. Multivariate logistic regression was used to estimate odds ratios (OR) with 95% confidence intervals (CI). Results: As many as 80.2% of participants reported having received education about the risk for infertility prior to treatment, 73.2% recalled counselling on fertility preservation. Only 52.3% stated they felt sufficiently informed to make a decision. Inability to recall counselling on fertility preservation (OR = 0.03, CI: 0.00–0.47) and female gender (OR = 0.11, CI: 0.03–0.48) was associated with lower use of cryopreservation, whereas older age was associated with higher use. Conclusion: Fertility counselling was available to a relatively high proportion of patients, and it did influence the utilisation of cryopreservation. However, many patients did not feel sufficiently informed. Further improvement is needed to enable adolescent cancer patients to make an informed decision on fertility preservation

Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries

Background Individuals with chronic diseases and parent caregivers are at increased risk for symptoms of depression and anxiety. Prevalence of psychological symptoms was evaluated in adolescents and adults with cystic fibrosis (CF) and parent caregivers across nine countries. Methods Patients with CF, ages 12 years and older, and caregivers of children with CF, birth to18 years of age, completed measures of depression and anxiety across 154 CF centres in Europe and the USA. Psychological symptoms were compared across countries using χ2. Logistic regression examined extent of comorbid symptoms, predictors of depression and anxiety, and concordance between parent and adolescent symptomatology. Results Psychological symptoms were reported by 6088 patients with CF and 4102 parents. Elevated symptoms of depression were found in 10% of adolescents, 19% of adults, 37% of mothers and 31% of fathers. Elevations in anxiety were found in 22% of adolescents, 32% of adults, 48% of mothers and 36% of fathers. Overall, elevations were 2–3 times those of community samples. Participants reporting elevated anxiety were more likely to report depression (ORs: adolescents=14.97, adults=13.64, mothers=15.52, fathers=9.20). Significant differences in reports of depression and anxiety were found by patient age and parent respondent. Concordance between 1122 parent–teen dyads indicated that adolescents whose parents reported depression were more likely to be elevated on depression (OR=2.32). Similarly, adolescents whose parents reported anxiety were more likely to score in the elevated range on the anxiety measure (OR=2.22). Conclusions Symptoms of depression and anxiety were elevated in both patients with CF and parents across several European countries and the USA. Annual screening of psychological symptoms is recommended for both patients and parents

Research in progress: put the orphanage out of business

Paediatric interstitial lung disease (ILD) is rare and diverse, meaning no single centre will see sufficient children to perform the studies needed to make progress. This EU FP-7 grant will standardise the evaluation of these rare conditions by establishing pan-European multidisciplinary expert panels and establish consensus on treatment protocols and standard operating procedures across Europe. We will work with patient groups to determine optimal treatment end-points and biomarkers. A biobank will be established as a Europe-wide resource for mechanistic studies. Ultimately we aim to do the first randomised controlled trial of a pharmacological treatment in paediatric ILD