A systematic review published in The Journal of Child Psychology and Psychiatry found that consumers with attention-deficit/hyperactivity disorder (ADHD) have substantial unmet needs both inside and outside the health care system.
Investigators from Deakin University in Australia searched publication databases from December 2011 to December 2021 for studies about ADHD consumers. A total of 23 studies were included. For this review, a consumer was defined as a person with lived experience.
All studies were of high quality and were conducted in Europe (52.2%), the United States (17.4%), Asia (17.4%), Australia (8.7%), and Canada (4.3%).
Most studies (52.2%) found that ADHD care should extend beyond medication. This is because medication does not eliminate symptoms of ADHD and many patients were interested in additional therapeutic options for symptoms that remained after treatment. One study reported that medications for ADHD were helpful in youth but did not help with the challenges of adulthood.
In 17 studies, most participants (73.9%) expressed a need for additional education about ADHD that was focused on improving health literacy not only for consumers but also for health professionals, teachers, and the general population. Caregivers and adult patients thought that clinicians did not take enough time during consultations to explain ADHD and treatments. In addition, caregivers thought they could benefit from parenting guidelines and training to better support their child with ADHD.
In general, both young patients with ADHD and caregivers reported that ADHD is associated with low self-esteem, embarrassment, self-loathing, and shame. Some caregivers in Europe felt their child’s clinician was blaming them for their child’s symptoms.
A total of 6 studies focused on unmet needs at school. Young adults with ADHD and caregivers thought school staff and teachers should have a greater understanding of ADHD, in which additional training or guidelines for teachers could help improve interactions with their students with ADHD. In addition, consumers thought that smaller class sizes, additional time to complete tasks, less homework assignments, and more time at school set aside to release energy could help improve the schooling experience for children with ADHD.
In 14 studies, most participants (60.9%) reported a problem with accessing care. Some reported that obtaining an ADHD diagnosis for their child was a long, drawn-out process due to long waiting periods, the need to visit multiple doctors, misdiagnosis, a general problem with finding a clinician who would listen, and a lack of affordable services. In the US, caregivers most commonly reported difficulties accessing medication.
“Peer-reviewed research has scarcely examined the unmet needs of ADHD consumers over the past 10 years. Findings suggest that ADHD consumers still have substantial needs that are yet to be addressed. These needs may be addressed by improving access to and quality of multimodal care provision, incorporating recovery principles into care provision, fostering ADHD health literacy, and increasing consumer participation in research, service development and ADHD-related training/education,” concluded the review authors.
Bisset M, Brown LE, Bhide S, et al. Practitioner review – understanding the unmet needs of consumers with attention-deficit/hyperactivity disorder – a systematic review and recommendations. J Child Psychol Psychiatry. Published online January 18, 2023. doi:10.1111/jcpp.13752