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Objective: To describe the poorly understood burden of pulmonary exacerbations experienced by primary caregivers of children (aged 2-17 years) with cystic fibrosis (CF), who frequently require prolonged hospitalizations for treatment of pulmonary exacerbations with intravenous (IV) antibiotics., Study Design: In this prospective observational study, 88 caregivers in Germany, Ireland, the United Kingdom, and the US completed a survey during pulmonary exacerbation-related hospitalizations (T1) and after return to a "well state" of health (T2). The impact of pulmonary exacerbations on caregiver-reported productivity, mental/physical health, and social/family/emotional functioning was quantified., Results: Primary caregivers of children with CF reported significantly increased burden during pulmonary exacerbations, as measured by the 12-item Short-Form Health Survey mental health component and the Work Productivity and Activity Impairment: Specific Health Problem absenteeism, presenteeism, work productivity loss, and activity impairment component scores. Compared to the "well state," during pulmonary exacerbations-related hospitalization caregivers reported lower physical health scores on the Child Health Questionnaire-Parent Form 28. Quality-of-life scores on the Caregiver Quality of Life Cystic Fibrosis scale and total support score on the Multidimensional Scale of Perceived Social Support did not differ significantly between T1 and T2. More caregivers reported a negative impact on family/social/emotional functioning during pulmonary exacerbations than during the "well state.", Conclusions: Pulmonary exacerbations necessitating hospitalization impose a significant burden on primary caregivers of children with CF. Preventing pulmonary exacerbations may substantially reduce this burden., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Objective: To assess the reliability and validity of six patient-reported outcomes (PRO) instruments for evaluating health-related quality of life in adults with mild-severe hemophilia B and caregivers of children with hemophilia B, including affected women/girls., Methods: Adults with hemophilia B and caregivers completed separate online surveys containing several PRO instruments, which were administered to adult participants only (EQ-5D-5L, Brief Pain Inventory v2 Short Form, Hemophilia Activities List, and International Physical Activities Questionnaire), both adults and caregivers (Patient Health Questionnaire [PHQ-9]), or caregivers only (Generalized Anxiety Disorder 7-Item [GAD-7] scale). Construct validity and item-total correlation were assessed using Pearson product-moment correlation, internal consistency was assessed using Cronbach's alpha coefficient, and known-group validity was assessed by comparisons to self-reported characteristics based on the Kruskal-Wallis test., Results: Patient-reported outcomes instruments generally showed satisfactory reliability for adults (n = 299) and caregivers (n = 150). In adults, PRO instruments generally showed high construct validity. Most PRO instruments showed expected significant differences among known groups for adults and caregivers. PHQ-9 and GAD-7 did not show significant differences among caregiver age groups., Conclusions: Patient-reported outcomes instruments administered in B-HERO-S demonstrated reliability and validity in the broader population of adults with hemophilia B and caregivers when including all severities and genders., (© 2018 The Authors. European Journal of Haematology Published by John Wiley & Sons Ltd.)

Background: Attention-deficit/hyperactivity disorder (ADHD) is a neurodevelopmental disorder that affects the lives of patients and their families. The Caregiver Perspective on Paediatric ADHD (CAPPA) survey was conducted to evaluate the burden associated with ADHD in Europe and to identify unmet needs. Here, we describe sociodemographic and clinical characteristics, treatment use and impact of ADHD., Methods: The cross-sectional web-based CAPPA survey was fielded in 10 European countries among caregivers of children/adolescents (aged 6-17 years) with ADHD who were currently receiving or had received pharmacotherapy in the previous 6 months., Results: Data on 3688 completed CAPPA surveys were evaluated. Children/adolescents were diagnosed with ADHD at a mean age of 6.9 years; 80% were male. Most children/adolescents (56%) had undergone behavioural therapy. Overall, 78% of children/adolescents currently received ADHD pharmacotherapy; high rates of atypical antipsychotic use were reported in some countries. Overall, 23% of children/adolescents had repeated a school year and 4% had been expelled recently. Most caregivers (68-88%) reported difficulty with schoolwork, social interactions/activities and family relationships, even when the child/adolescent was receiving ADHD medication. Almost one third (31%) of caregivers felt the need to change employment status despite their child/adolescent receiving ADHD medication in 53% of these cases., Limitations: Information was reported by caregivers recruited through market research panels; reporting, recall and selection biases may be present., Conclusion: Variation across Europe was observed in characteristics of caregivers and children/adolescents with ADHD, and treatment use. Even with medication, ADHD compromised or negatively impacted caregivers' work and children/adolescents' schoolwork, their social interactions and family relationships., (Copyright © 2016. Published by Elsevier B.V.)

The caregiver perspective on pediatric attention-deficit/hyperactivity disorder (ADHD) study (CAPPA) was a web-based, cross-sectional survey of caregivers of children and adolescents (6-17 years of age) with ADHD and was conducted in 10 European countries. CAPPA included caregiver assessments of global medication satisfaction, global symptom control, and satisfaction with ADHD medication attributes. Overall, 2,326 caregiver responses indicated that their child or adolescent was currently receiving ADHD medication and completed the "off medication" assessment required for inclusion in the present analyses. Responses to the single-item global medication satisfaction question indicated that 88% were satisfied (moderately satisfied to very satisfied) with current medication and 18% were "very satisfied" on the single-item question. Responses to the single-item global symptom control question indicated that 47% and 19% of caregivers considered their child or adolescent's symptoms to be "controlled" or "very well controlled", respectively. Significant variations in response to the questions of medication satisfaction and symptom control were observed between countries. The correlation between the global medication satisfaction and global symptom control questions was 0.677 (P<0.001). Global medication satisfaction was significantly correlated (P<0.001) with all assessed medication attributes, with the highest correlations observed for symptom control (r=0.601) and effect duration (r=0.449). Correlations of medication attributes with global symptom control were generally lower than with global medication satisfaction but were all statistically significant (P<0.001). CAPPA medication satisfaction and symptom control were also significantly correlated (P<0.001) with symptom control as based on the ADHD-Rating Scale-IV symptom score and the number of bad days per month when on medication. In conclusion, caregiver responses in this European sample suggest that current treatment could potentially be improved. The observed correlations of global medication satisfaction with global symptom control and other CAPPA assessments, including medication attributes, provide support for the inter-connectivity of the medication satisfaction and symptom control. [ABSTRACT FROM AUTHOR]

Background: Burden on caregivers of children/adolescents with attention-deficit/hyperactivity disorder (ADHD) is multidimensional, but incompletely understood. Objective: To analyze caregiver burden across the concepts of work, social/family life, and parental worry/stress, in relation to selected contributing factors. Methods: The online Caregiver Perspective on Pediatric ADHD survey was fielded in ten European countries. Analysis included children/adolescents (6-17 years) who were receiving/had received ADHD pharmacotherapy in the previous 6 months. Caregivers recorded their child's/adolescent's symptoms "on"/"off" medication (ie, when the caregiver reported that the child/adolescent forgot/chose not to take medication, before the onset of medication effect, or medication worn off). Effects of ADHD severity, comorbidities, and medication adherence on each burden outcome were assessed (multiple regression models). Results: In total, 2,326 caregivers were included (children/adolescents' mean age: 11.5 years, 80% male). Caregivers reported missed/altered work, avoiding social activity, increased parental worry/stress, and strain on family life, despite using ADHD pharmacotherapy. Child/adolescent comorbidities and ADHD severity were significantly related to all burden concepts measured; the strongest comorbidity associations were with altered work (odds ratios [ORs] =1.68 [95% confidence interval {CI} 1.33, 2.12], 1.87 [1.37, 2.54], 3.47 [2.51, 4.78] for 1, 2, 3+ comorbidities, respectively) and planning the day around the child/adolescent (OR =1.42 [95% CI 1.17, 1.72], 1.73 [1.33, 2.15], 2.65 [1.99, 3.53]); the strongest severity associations were: quitting a job (OR =1.41 [95% CI 1.26, 1.59]) and planning a day around the child/adolescent (OR =1.26 [95% CI 1.20, 1.32]). Increased medication adherence was most associated with reducing the caregiver burden for altered work (OR =0.57 [95% CI 0.45, 0.72]), worrying about how they are being perceived as a parent (OR =0.68 [0.56, 0.83]), and avoiding social activity (OR =0.56 [0.45, 0.68]), but not family or stress burden. Conclusion: Burdens related to work, social activity, family life, and parental worry/stress were experienced by the caregivers of children/adolescents with ADHD, despite using ADHD pharmacotherapy. Better understanding of clinical/treatment characteristics most associated with the components of caregiver burden may help improve ADHD management and may ease caregiver burden. [ABSTRACT FROM AUTHOR]