The Caregiver Perspective on Paediatric ADHD (CAPPA) survey: Understanding sociodemographic and clinical characteristics, treatment use and impact of ADHD in Europe.

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.

The patient's perspective on the symptom and everyday life impact of AL amyloidosis.

INTRODUCTION: This study aimed to understand the symptomatic impact of amyloid light-chain (AL) amyloidosis from the patient's perspective. METHODS: Four data sources were included: a literature review, review of online patient blogs, expert clinician interviews and patient interviews. Patients were recruited through the Amyloidosis Foundation and physician referral. Phone interviews were conducted and included open-ended concept elicitation questions. Thematic analysis was performed to identify symptoms and impacts. Descriptive statistics were used to characterize the sample. A conceptual model was developed depicting the impact of disease and treatment. RESULTS: Two hundred seventy abstracts were identified; 10 articles were deemed relevant. No qualitative studies were identified, and only three studies included patient-reported measures. Ten patients completed interviews (mean age 61 [±8]; 7 male). Over 25 signs/symptoms were identified, including fatigue, weakness, dyspnea, neuropathy, edema, dizziness/lightheadedness, anorexia, diarrhea and constipation. Impacts included reduced physical and social functioning, and emotional impacts, including frustration, anxiety and depression. Findings from the blogs and expert interviews were consistent with patient reports. CONCLUSION: Symptoms can vary widely, but a core set of symptoms were common across patients. The conceptual model derived from this study can be used to ensure a patient-centered approach to drug development.

Unmet needs associated with attention-deficit/hyperactivity disorder in eight European countries as reported by caregivers and adolescents: results from qualitative research.

INTRODUCTION: Attention-deficit/hyperactivity disorder (ADHD) is a neurobehavioral disorder characterized by inattention, impulsivity, and hyperactivity, the levels of which are inappropriately high for an individual's developmental age. OBJECTIVE: The objective of this study was to explore the unmet needs of children/adolescents with ADHD and their caregivers in eight European countries. METHODS: Semi-structured interviews with 38 caregivers of children/adolescents (aged 6-17 years) with ADHD and no or less serious comorbidities and 28 adolescents (aged 13-17 years) with ADHD and no or less serious comorbidities were conducted, audio-recorded, transcribed into English, and coded for analysis. RESULTS: Caregivers reported their own ADHD-related issues, including making personal accommodations, such as limiting activities and spending extra time/effort caring for their child/adolescent, social impacts, and strained relationships. Medication was generally considered helpful; however, most children experience core ADHD symptoms while on medication (reported by 88 % of caregivers and 100 % of adolescents). Adolescents often reported schoolwork difficulties (96 %) and peer issues (75 %), while caregivers reported school issues (84 %) and peer difficulties (79 %). Caregivers reported minimal ADHD education and community support. Caregivers (29 %) and adolescents (54 %) desired medication that better controlled symptoms but had concerns about being oversubdued. Caregivers reported concerns about adverse effects (21 %). CONCLUSIONS: European caregivers of children/adolescents with ADHD identified multiple unmet needs, which persist despite treatment. Adolescents noted impacts on school and social interactions consistent with caregivers. Future research is needed to quantify the study findings, and, ultimately, ease the impact of ADHD on patients and their caregivers.