Children and young people's experiences of living with rare diseases: An integrative review.

PROBLEM: Rare diseases are any disease affecting fewer than five people in 10,000. More than 8000 rare diseases and 50-75% of all rare diseases affect children. The purpose of this review was to critically appraise and synthesize existing literature relating to the impact of rare diseases on children's day-to-day lives. ELIGIBILITY CRITERIA: An integrative literature review was conducted using the CINAHL Plus, PsycINFO, and PubMed databases. Studies were included if they were a primary source was published between the years 2005 and 2019 and written in the English language. SAMPLE: Eight primary sources met the inclusion criteria. RESULTS: Seven main themes emerged from the review as follows: (i) the experience of stigmatisations, (ii) self-consciousness, (iii) restrictions in independent living, (iv) developing resilience/coping strategies, (v) psychological and emotional impact, (vi) social impact vs social connectedness and (vii) transition challenges. CONCLUSIONS: The experience of having a rare illness differed across different age groups. Children (typically aged 3-10) with rare diseases generally view themselves and their lives the same way like their healthy peers. They were more likely to report being adaptive and resilient than those aged 12 or older. Young people reported being different compared to young children, and they faced numerous challenges related to their illness. IMPLICATIONS FOR PRACTICE: To provide the best possible level of care for children and families with rare disorders, health services must be informed and equipped to provide the necessary supports specific to the unique needs of children and young people living with rare diseases.

ADHD in Adults: A Systematic Review and Meta-Analysis of Prevalence Studies in Outpatient Psychiatric Clinics.

OBJECTIVE: Systematic review and meta-analysis to estimate the pooled prevalence of ADHD in adult attendees of outpatient mental health clinics and to investigate factors influencing prevalence rates. METHODS: The following were extracted: demographics, design of the study (screening only or two-phase), scales/criteria for diagnosis of ADHD, number of ADHD, and non-ADHD participants. RESULTS: The pooled prevalence of ADHD from screening studies (n = 9) was 26.7%, (95% CI [17.2-37.4]), ADHD = 1727, No ADHD = 3,578. From studies employing a two-stage design (n = 5), prevalence was 14.61%, CI [10.39-19.41], ADHD = 561, No ADHD = 3,578. Age and gender did not have any significant effect on the estimated prevalence. By contrast exclusion of psychotic disorders lowers prevalence. The screening scale used also influence prevalence rates. CONCLUSION: Meta-analysis shows high rates of adult ADHD among psychiatric outpatient clinics. Applying DSM-5 criteria increased prevalence rates. More methodologically robust studies, using two-stage design, need to be conducted to help assist in service planning.