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Studies reinforce the critical importance of ADHD treatment monitoring

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As the new school year approach­es, let me high­light the essen­tial val­ue of ADHD treat­ment mon­i­tor­ing. Even when a child’s treat­ment has been going well, response to treat­ment can change over time. This is true for med­ica­tion treat­ment, or any oth­er treat­ment a child is receiv­ing. By reg­u­lar­ly mon­i­tor­ing how a child is doing at school, par­ents and pro­fes­sion­als are alert­ed ear­ly on to when mod­i­fi­ca­tions and adjust­ments to a child’s treat­ment is need­ed. This can pre­vent sub­stan­tial time from going by when a child is strug­gling more than may be nec­es­sary.

When a child is diag­nosed with ADHD, par­ents con­front the dif­fi­cult deci­sion about which treatment(s) to pur­sue to best help their child suc­ceed. While decid­ing on an ini­tial treat­ment plan is cer­tain­ly impor­tant, equal­ly impor­tant is estab­lish­ing a plan to mon­i­tor how well that treat­ment is work­ing on a sus­tained basis, regard­less of what spe­cif­ic treatment(s) is being used. This is because children’s response to ADHD treat­ment often changes over time and a strong ini­tial treat­ment response – be that med­ica­tion treat­ment, behav­ior ther­a­py, dietary treat­ment, etc., — pro­vides no assur­ance that impor­tant treat­ment ben­e­fits will per­sist.

Core ADHD symp­toms of inat­ten­tion and hyper­ac­tiv­i­ty-impul­siv­i­ty that are well-con­trolled at one time may sub­se­quent­ly reemerge and cre­ate dif­fi­cul­ties. A child’s suc­cess with school work, meet­ing behav­ioral expec­ta­tions at school, and get­ting along with peers can also ebb and flow. For this rea­son, ADHD treat­ment guide­lines from the Amer­i­can Acad­e­my of Pedi­atrics and the Amer­i­can Acad­e­my of Child and Ado­les­cent Psy­chi­a­try high­light the neces­si­ty of sus­tained, sys­tem­at­ic treat­ment mon­i­tor­ing. This is essen­tial for learn­ing whether an ini­tial treat­ment reg­i­men is hav­ing the intend­ed ben­e­fits and, if so, whether those ben­e­fits are per­sist­ing. If that is not the case, one wants to be alert­ed as soon as pos­si­ble so that appro­pri­ate treat­ment adjust­ments and mod­i­fi­ca­tions can be made. Hav­ing a strong mon­i­tor­ing plan in place is thus an inte­gral com­po­nent of high qual­i­ty ADHD treat­ment.

Evidence for the importance of treatment monitoring

The val­ue of care­ful treat­ment mon­i­tor­ing was high­light­ed in results from the Mul­ti­modal Treat­ment Study of AD/HD. (i.e. the MTA study), the largest ADHD treat­ment study ever con­duct­ed. In this study, near­ly 600 7–10 year old chil­dren with the com­bined type of ADHD were ran­dom­ly assigned to one of four treat­ment con­di­tions: med­ica­tion treat­ment, behav­ior ther­a­py, com­bined treat­ment (med­ica­tion + behav­ior ther­a­py), or com­mu­ni­ty care, i.e., treat­ment in the com­mu­ni­ty. Chil­dren assigned to the first three groups received their treat­ment through the study. Those assigned to the com­mu­ni­ty care group received what­ev­er treat­ment their par­ents chose to pur­sue in the com­mu­ni­ty; near­ly two-thirds of the time this includ­ed med­ica­tion treat­ment.

Med­ica­tion treat­ment in the MTA Study began with a rig­or­ous titra­tion tri­al in which three dif­fer­ent dos­es of an ini­tial stim­u­lant med­ica­tion were tried. Feed­back on children’s behav­ior and school per­for­mance was obtained from par­ents and teach­ers and this infor­ma­tion was used to deter­mine the opti­mal start­ing dose. If no dose of the ini­tial med­ica­tion was suf­fi­cient­ly effec­tive, or if it pro­duced adverse effects, a dif­fer­ent med­ica­tion was tried. The goal of this pro­ce­dure – which is far more exten­sive than what typ­i­cal­ly occurs – was to iden­ti­fy the most effec­tive med­ica­tion and dose to begin each child’s treat­ment.

After treat­ment began its ongo­ing effec­tive­ness of treat­ment was mon­i­tored via month­ly fol­low-up vis­its and phone con­tact with teach­ers. The pur­pose was to learn how well children’s ADHD symp­toms were being con­trolled over time and how well they con­tin­ued to func­tion in behav­ioral, aca­d­e­m­ic and social domains. Although one might assume that the care­ful pro­ce­dure used to iden­ti­fy the opti­mal start­ing med­ica­tion and dose for each child would obvi­ate the need for treat­ment adjust­ments, this did not turn out to be the case.

Three months into the 13-month main­te­nance peri­od, 56% of chil­dren had already had their med­ica­tion or dosage changed. The aver­age time to the first dose change was 4–5 months. Across the entire main­te­nance peri­od, the aver­age num­ber of changes required for each child was just over 2, but some chil­dren required as many as 10 med­ica­tion adjust­ments. Of the total med­ica­tion changes made, 62% involved increas­ing the dosage of the cur­rent med­ica­tion, 31% involved decreas­ing the dosage and only 7% involved chang­ing med­ica­tions entire­ly. Only 17% con­tin­ued on the same med­ica­tion and dosage through­out the entire 13-month main­te­nance peri­od. The remain­ing chil­dren all expe­ri­enced at least one change in drug or dosage dur­ing this peri­od.

In con­trast to the month­ly mon­i­tor­ing that chil­dren treat­ed in the study received, those treat­ed in the com­mu­ni­ty (again maybe a descrip­tor) aver­aged just 2 fol­low-up vis­its and it is unlike­ly that direct feed­back from teach­ers was obtained. Thus, their providers had far less infor­ma­tion on how well they were doing and their med­ica­tion regime was less like­ly to be adjust­ed in response to feed­back from par­ents and teach­ers. Although it can­not be con­clud­ed with cer­tain­ty, it is like­ly that this helps explain why chil­dren who received med­ica­tion treat­ment through the study were sig­nif­i­cant­ly more like­ly to have their core ADHD symp­toms nor­mal­ized than chil­dren treat­ed in the com­mu­ni­ty.

Although these results per­tain to med­ica­tion treat­ment, the need for care­ful ongo­ing mon­i­tor­ing is applies to what­ev­er treatment(s) a child is receiv­ing. Regard­less of treat­ment, it is essen­tial to know how well core ADHD symp­toms are being man­aged and how the child is per­form­ing in impor­tant domains. When this infor­ma­tion is not obtained on a reg­u­lar basis, it is not pos­si­ble to know when mod­i­fi­ca­tions to the cur­rent treat­ment regime are indi­cat­ed.

The absence of treatment monitoring in community settings

Despite the demon­strat­ed val­ue of treat­ment mon­i­tor­ing, and the impor­tance that treat­ment guide­lines from the Amer­i­can Acad­e­my of Pedi­atrics and the Amer­i­can Acad­e­my of Child and Ado­les­cent Psy­chi­a­try place on sys­tem­at­ic mon­i­tor­ing, it appears that this is infre­quent­ly part of children’s treat­ment. As not­ed above, chil­dren assigned to com­mu­ni­ty care in the MTA study had only 2 fol­low-up vis­its on aver­age over 13 months com­pared to month­ly fol­low-ups for study-treat­ed chil­dren. And, a recent­ly pub­lished study involv­ing over 180 pedi­a­tri­cians across 50 pedi­atric prac­tices report­ed the fol­low­ing:

Fol­low-up con­tact (vis­it, phone call, or email) with­in 30 days of pre­scrib­ing med­ica­tion was doc­u­ment­ed in few­er than 50% of children’s charts. Thus, for over half of youth pre­scribed med­ica­tion, there is no indi­ca­tion that any infor­ma­tion on the child’s response to med­ica­tion was obtained dur­ing the first month mak­ing one ques­tion how providers would know whether the treat­ment they pre­scribed was work­ing.

Col­lect­ing any sys­tem­at­ic behav­ior rat­ings from par­ents and/or teach­ers – even a sin­gle time — was evi­dent for only about 10% of chil­dren. And, the aver­age amount of time between ini­ti­at­ing treat­ment and col­lect­ing any such rat­ings was rough­ly one year. Because of this, it is like­ly that many chil­dren were main­tained on a treat­ment pro­gram that was far from opti­mal.

Although these data was not derived from a nation­al­ly rep­re­sen­ta­tive sam­ple of pedi­a­tri­cians, and does not speak to what may be typ­i­cal for oth­er types of health pro­fes­sion­als, e.g., psy­chi­a­trists, psy­chol­o­gists, they clear­ly high­lights sig­nif­i­cant lim­i­ta­tions in the treat­ment that many chil­dren with ADHD receive.

What can parents do?

Par­ents who rec­og­nize the impor­tance of treat­ment mon­i­tor­ing can speak with their child’s health care provider to make sure that a treat­ment mon­i­tor­ing plan is in place for their child. Although the effec­tive­ness of ADHD treat­ment can be mon­i­tored in var­i­ous ways, one rea­son­able approach would be to obtain month­ly feed­back from teach­ers on the inten­si­ty of core ADHD symp­toms, and how well the child is doing over­all in their aca­d­e­m­ic, social, and behav­ioral func­tion­ing. Teacher rat­ings would be sup­ple­ment­ed by rat­ings from par­ents based on their obser­va­tions of their child at home. When med­ica­tion is part of a child’s treat­ment, mon­i­tor­ing for emer­gent side effects would also be rec­om­mend­ed.

A num­ber of behav­ior rat­ing scales are avail­able for this pur­pose and dif­fer­ent pro­fes­sion­als will pre­fer dif­fer­ent scales. Although get­ting this infor­ma­tion to providers on a month­ly basis is not with­out chal­lenges, there are now web-based sys­tems that can great­ly facil­i­tate the acqui­si­tion and trans­mis­sion of this infor­ma­tion to pro­fes­sion­als. The util­i­ty of web-based sys­tems is espe­cial­ly appar­ent when chil­dren have mul­ti­ple teach­ers from whom infor­ma­tion is request­ed. By exam­in­ing this infor­ma­tion each month, your child’s health care provider will have a clear sense of whether treat­ment is work­ing as intend­ed, i.e., rat­ings of core ADHD symp­toms are low and the child’s over­all func­tion­ing behav­ioral, aca­d­e­m­ic and social domains is rat­ed pos­i­tive­ly.

When teacher and/or par­ent rat­ings reflect impor­tant dif­fi­cul­ties, deci­sions about pos­si­ble changes/adjustments to the cur­rent treat­ment plan can be made in con­sul­ta­tion with par­ents. With­out such infor­ma­tion, mak­ing a well-informed deci­sion about the ade­qua­cy of a child’s cur­rent treat­ment is not pos­si­ble.

Ide­al­ly, your child’s provider will already have a sys­tem­at­ic approach for ADHD treat­ment mon­i­tor­ing in his or her prac­tice that he/she can imple­ment with your child. If not, work­ing with the provider to devel­op such a plan — and then con­sis­tent­ly imple­ment­ing it — is one of the most impor­tant things par­ents can do to help pro­mote their child’s suc­cess.

You can also access a pen­cil-and-paper treat­ment mon­i­tor­ing sys­tem that I devel­oped that can be down­load for free here, and also learn more by tak­ing this online course on How to Nav­i­gate Con­ven­tion­al and Com­ple­men­tary ADHD Treat­ments for Healthy Brain Devel­op­ment.

Rabiner_David– Dr. David Rabin­er is a child clin­i­cal psy­chol­o­gist and Direc­tor of Under­grad­u­ate Stud­ies in the Depart­ment of Psy­chol­ogy and Neu­ro­science at Duke Uni­ver­sity. He pub­lishes the Atten­tion Research Update, an online newslet­ter that helps par­ents, pro­fes­sion­als, and edu­ca­tors keep up with the lat­est research on ADHD, and helped pre­pare the self-paced, online course How to Nav­i­gate Con­ven­tion­al and Com­ple­men­tary ADHD Treat­ments for Healthy Brain Devel­op­ment.

References

  • Amer­i­can Acad­e­my of Pedi­atrics. ADHD: Clin­i­cal prac­tice guide­line for the diag­no­sis, eval­u­a­tion, and treat­ment of Atten­tion Deficit/Hyperactivity Dis­or­der in chil­dren and Ado­les­cents. (2011). Pedi­atrics, 128, 1007–1022.
  • Amer­i­can Acad­e­my of Child and Ado­les­cent Psy­chi­a­try. Prac­tice Para­me­ter for the Assess­ment and Treat­ment of Chil­dren and Ado­les­cents with Atten­tion-Deficit/ Hyper­ac­tiv­i­ty Dis­or­der. (2007). Jour­nal of the Amer­i­can Acad­e­my of Child and Ado­les­cent Psy­chi­a­try, 46, 894–921.
  • MTA Coop­er­a­tive Group (1999). A 14-month ran­dom­ized clin­i­cal tri­al of treat­ment strate­gies for atten­tion deficit/hyperactivity dis­or­der. Archives of Gen­er­al Psy­chi­a­try, 56, 1073–1086.
  • Epstein, J.N., et al., (2014). Vari­abil­i­ty in ADHD care in com­mu­ni­ty-based pedi­atrics. Pedi­atrics, 134, 1136–1143.

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