Unmet care needs of children with ADHD

Abstract

Background Non-compliance to, or drop-out from treatment for childhood ADHD, result in suboptimal outcome. Non-compliance and drop-out may be due to mismatches between patients' care needs and treatments provided. This study investigated unmet care needs in ADHD patients. Unmet needs were assessed in two different treatment settings (general outpatient setting versus youth-ACT). Youth-ACT treatment is an intensive outreach-oriented treatment for patients with severe psychiatric and psychosocial problems. Comparison of a general outpatient sample with a youth-ACT sample enabled us to assess the influence of severity of psychiatric and psychosocial problems on perceived care needs. Methods Self-reported unmet care needs were assessed among 105 ADHD patients between 6 and 17 years of age in a general outpatient (n = 52) and a youth-ACT setting (n = 53). Results ADHD patients most frequently reported unmet needs regarding mental health problems, information on diagnosis/treatment, and future prospects. Outpatients differed from youth-ACT patients with respect to 30% of the unmet care needs that were investigated. Outpatients perceived more unmet needs regarding information on diagnosis/treatment (p = 0.014). Youth-ACT patients perceived more unmet needs concerning medication side effects (p = 0.038), quality and/or quantity of food (p = 0.016), self-care abilities (p = 0.016), regular/suitable school or other daytime activities (p = 0.013), making and/or keeping friends (p = 0.049), and future prospects (p = 0.045). Conclusions Focusing treatment of ADHD patients on unmet needs may reduce non-compliance and drop-out. In clinical practice, systematic assessment of unmet care needs in all ADHD patients may be warranted, e.g. using the CANSAS questionnaire during the screening/ intake phase.

What if children with psychiatric problems disagree with their clinicians on the need for care? Factors explaining discordance and clinical directions

“…It is possible that young patients who break rules are less aware of their problems, or do not see the need for change [ 54 ]. Any negative experiences with adults [ 55 ]—who make and enforce rules—may also negatively affect their motivation for collaborating with treatment intended to resolve problems [ 56 ].…”

Practitioner Review: It's time to bridge the gap – understanding the unmet needs of consumers with attention‐deficit/hyperactivity disorder – a systematic review and recommendations

“…A brief comparison of findings between studies scoring above/below 90% (10 studies vs. 13 studies) revealed no notable differences between groups. Sikirica et al, 2015;Simons et al, 2016;Sollie & Larsson, 2016;Vijverberg, Ferdinand, Beekman, & Van Meijel, 2020). Participants reported that medication reduces but does not eliminate ADHD symptoms (Sikirica et al, 2015;Simons et al, 2016;Sollie & Larsson, 2016) and wanted professionals to consider additional therapeutic options (Coletti et al, 2012;McIntyre & Hennessy, 2012).…”

“…Need: Improved access to clinical services, support and financial assistance. Though some ADHD consumers in Hong Kong reported no challenges accessing health services (Cheung et al, 2015), consumers from 14 studies (60.9%) reported gaps relating to accessing appropriate clinical services, support and financial assistance (Cheung et al, 2015;Fridman et al, 2017;Ho, Chien, & Wang, 2011;Hossainzadeh Maleki et al, 2018;McIntyre & Hennessy, 2012;Nasol et al, 2019;Pahlavanzadeh et al, 2018;Reale et al, 2015;Rezel-Potts et al, 2021;Sikirica et al, 2015;Simons et al, 2016;Spencer et al, 2021;Swift et al, 2013;Vijverberg et al, 2020). Caregivers reported challenges obtaining an ADHD diagnosis due to long waiting periods and drawn out diagnostic processes, visiting multiple doctors, problems with misdiagnosis, insufficient resources and difficulty finding professionals that would listen (McIntyre & Hennessy, 2012;Rezel-Potts et al, 2021;Sikirica et al, 2015;Simons et al, 2016).…”

What if children with psychiatric problems disagree with their clinicians on the need for care? Factors explaining discordance and clinical directions.

“…It is possible that young patients who break rules are less aware of their problems, or do not see the need for change [51]. Any negative experiences with adults [52] -who make and enforce rules -may also negatively affect their motivation for collaborating with treatment intended to resolve problems. [53].…”