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Discouraging new findings about pediatric care for children with ADHD: Often, best-practice guidelines are not followed

Most chil­dren with ADHD receive their care from com­mu­ni­ty-based pedi­a­tri­cians. Giv­en the large num­ber of school-age chil­dren who require eval­u­a­tion and treat­ment ser­vices for ADHD, and the adverse impact that poor qual­i­ty care can have on children’s devel­op­ment, it is impor­tant for chil­dren to rou­tine­ly receive care in the com­mu­ni­ty that is con­sis­tent with best-prac­tice guide­lines.

The Amer­i­can Acad­e­my of Pedi­atrics has clear­ly rec­og­nized this and pub­lished guide­lines for the eval­u­a­tion of ADHD back in 2000; this was fol­lowed by a set of treat­ment guide­lines in 2001 (pre­sent­ed here). Based on data col­lect­ed since then, these guide­lines were mod­i­fied in 2011 (com­plete text here).

Below is a brief sum­ma­ry of the key ele­ments from these guide­lines.

Evaluation Recommendations for school-age children

- Youth ages 4 through 18 years who present to their pri­ma­ry care clin­i­cian with aca­d­e­m­ic or behav­ioral prob­lems and symp­toms of inat­ten­tion, hyper­ac­tiv­i­ty, or impul­siv­i­ty should be eval­u­at­ed for ADHD.

- Diag­nos­ing ADHD requires deter­min­ing that DSM cri­te­ria for the dis­or­der have been met. Mak­ing this deter­mi­na­tion requires infor­ma­tion to be obtained from par­ents or guardians, teach­ers, and oth­ers. Clin­i­cians should rule out any alter­na­tive cause of the child’s ADHD symp­toms.

- ADHD eval­u­a­tions should include assess­ment for oth­er con­di­tions that may co-occur with ADHD, includ­ing emo­tion­al or behav­ioral (eg, anx­i­ety, depres­sive, oppo­si­tion­al defi­ant, and con­duct dis­or­ders), devel­op­men­tal (eg, learn­ing and lan­guage dis­or­ders or oth­er neu­rode­vel­op­men­tal dis­or­ders), and phys­i­cal (eg, tics, sleep apnea) con­di­tions.

Treatment recommendations for school-age children

- Treat­ment and man­age­ment of ADHD should reflect that it is a chron­ic con­di­tion and may impact children’s devel­op­ment and func­tion­ing over many years. Par­ents need to be sup­port­ed in con­sis­tent­ly imple­ment­ing treat­ments for their child over an extend­ed peri­od.

Spe­cif­ic treat­ment rec­om­men­da­tions vary by the age of the child.

- For chil­dren ages 4–5, evi­dence-based par­ent- and/or teacher-admin­is­tered behav­ior ther­a­py should be the first line of treat­ment. Stim­u­lant med­ica­tion may be pre­scribed if improve­ment is not sig­nif­i­cant and there remain mod­er­ate-to-severe dis­tur­bances in the child’s func­tion.

- For 6–11 year old chil­dren, FDA-approved med­ica­tions for ADHD and/or evi­dence-based par­ent- and/or teacher-admin­is­tered behav­ior ther­a­py are the front line treat­ments for ADHD; ide­al­ly, these treat­ments would be com­bined. The school set­ting is an essen­tial con­text for any treat­ment plan.

- For ado­les­cents, FDA-approved med­ica­tions should be pre­scribed with the adolescent’s assent. Behav­ior ther­a­py may also be pre­scribed and will ide­al­ly be com­bined with med­ica­tion.

Note that for all ages, fam­i­ly pref­er­ence is an essen­tial ele­ment in deter­min­ing the treat­ment plan. For old­er chil­dren and ado­les­cents, their pref­er­ence should also be tak­en into account.

- When pre­scrib­ing med­ica­tion, clin­i­cians should titrate dos­es of ADHD med­ica­tion to achieve the max­i­mum ben­e­fit with min­i­mum side effects. Clin­i­cians should inform par­ents and chil­dren that chang­ing med­ica­tion dose and/or med­ica­tion may be nec­es­sary to deter­mine the opti­mal medication/dose and that this can require sev­er­al months. — It is impor­tant for med­ica­tion effi­ca­cy to sys­tem­at­i­cal­ly mon­i­tored at reg­u­lar inter­vals so that adjust­ments can be made when indi­cat­ed.

How well are these recommendations being followed?

The best data on this ques­tion comes from this study pub­lished in Pedi­atrics: Vari­abil­i­ty in ADHD care in com­mu­ni­ty-based pedi­atric prac­tices. The authors recruit­ed 184 pedi­a­tri­cians across 50 pedi­atric prac­tices in Cen­tral and North­ern Ohio for a study focused on improv­ing com­mu­ni­ty-based care for chil­dren with ADHD. For each pedi­a­tri­cian, 10 charts for patients with an ADHD diag­no­sis code were ran­dom­ly select­ed so that the assess­ment and treat­ment pro­ce­dures received by those patients could be reviewed.

For each chart reviewed, the researchers doc­u­ment­ed the fol­low­ing:

1. Pres­ence of par­ent and teacher rat­ings of ADHD symp­toms dur­ing the assess­ment.
2. Doc­u­men­ta­tion that the child met DSM cri­te­ria for ADHD.
3. Doc­u­men­ta­tion of whether ADHD med­ica­tion was pre­scribed.
4. Doc­u­men­ta­tion that behav­ior ther­a­py was sug­gest­ed.
5. Date of ini­tial ADHD med­ica­tion pre­scrip­tion.
6. Dates of ADHD-relat­ed treat­ment vis­its or oth­er con­tacts, e.g., phone, email.
7. Dates of col­lec­tion for par­ent and teacher ADHD rat­ing scales.

Results

- Evi­dence that DSM cri­te­ria for ADHD were met was doc­u­ment­ed in approx­i­mate­ly 70% of patients’ charts. Thus, for near­ly one-third of chil­dren diag­nosed with ADHD, evi­dence that DSM cri­te­ria were met was miss­ing.

- ADHD rat­ing scales were col­lect­ed from par­ents and teach­ers for rough­ly 56% of youth with an ADHD diag­no­sis. Pre­sum­ably, pedi­a­tri­cians would have obtained infor­ma­tion about ADHD symp­toms from par­ents via oth­er means, i.e., clin­i­cal inter­view. For teach­ers, how­ev­er, the absence of rat­ing scales in over 40% of the cas­es sug­gests obtain­ing infor­ma­tion direct­ly from teach­ers is fre­quent­ly not done, as speak­ing with teach­ers on the phone is unlike­ly to have occurred.

- Pedi­a­tri­cians pre­scribed ADHD med­ica­tion to rough­ly 93% of youth diag­nosed with ADHD. Doc­u­men­ta­tion that behav­ioral treat­ment was rec­om­mend­ed, how­ev­er, was present in only 13% of the charts.

- Fol­low-up con­tact (vis­it, phone call, or email with­in 30 days of pre­scrib­ing med­ica­tion was doc­u­ment­ed in few­er than 50% of 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 1st month.

- For youth on med­ica­tion for at least one year, an aver­age of 5.7 con­tacts occurred dur­ing the year; the major­i­ty of these were office vis­its, some were phone calls, and email was vir­tu­al­ly nev­er used. Con­tacts declined dur­ing the 2nd and 3rd year of treat­ment.

- With respect to mon­i­tor­ing treat­ment response with stan­dard­ized rat­ings, this rarely occurred. Only 11% of charts had any evi­dence of par­ent rat­ings to mon­i­tor treat­ment response and less than 8% had teacher rat­ings with­in the 1st year of treat­ment. In addi­tion, the aver­age time between ini­ti­at­ing med­ica­tion treat­ment and col­lect­ing par­ent or teacher rat­ings was quite long — 396 days for par­ents and 362 days for teach­ers.

Summary and Implications

Results from this study are unfor­tu­nate­ly clear and dis­cour­ag­ing in that guide­lines from the Amer­i­can Acad­e­my of Pedi­atrics on the eval­u­a­tion and treat­ment of ADHD are fre­quent­ly not fol­lowed. The data indi­cate that many chil­dren are diag­nosed with ADHD in the absence of clear­ly meet­ing DSM diag­nos­tic cri­te­ria and that behav­ioral treat­ment is rarely rec­om­mend­ed.

Although pedi­a­tri­cians are fre­quent­ly ini­ti­at­ing med­ica­tion treat­ment — which has a strong evi­dence base — gath­er­ing data ear­ly in treat­ment to deter­mine the child’s response is often neglect­ed and sys­tem­at­i­cal­ly mon­i­tor­ing treat­ment response over time hard­ly ever occurs. As a result, many chil­dren are like­ly to be deriv­ing sig­nif­i­cant­ly less ben­e­fit from such treat­ment than they would if the guide­lines were rou­tine­ly fol­lowed. This is because care­ful mon­i­tor­ing often reveals the need to adjust a child’s dose, and some­times med­ica­tion, to main­tain opti­mal ben­e­fits.

Although I don’t like to be pes­simistic, it is worth not­ing that these find­ings may under­es­ti­mate the degree to which AAP eval­u­a­tion and treat­ment guide­lines are fail­ing to be fol­lowed. Thus, this study pro­vid­ed no data on whether pedi­a­tri­cians’ eval­u­a­tions includ­ed the assess­ment of oth­er con­di­tions that often co-occur with ADHD so that a com­pre­hen­sive treat­ment plan could be devel­oped. Giv­en that such co-occur­ring prob­lems are unlike­ly to be addressed by ADHD med­ica­tion alone, and that behav­ioral or oth­er psy­choso­cial treat­ments were so infre­quent­ly rec­om­mend­ed, it seems like­ly that co-occur­ring prob­lems were often not addressed. In the rel­a­tive­ly small per­cent­age of chil­dren for whom refer­rals for such treat­ment was made, no infor­ma­tion on the qual­i­ty of such treat­ment was avail­able.

I think it is impor­tant not to inter­pret these find­ings as an oppor­tu­ni­ty to blame pedi­a­tri­cians for pro­vid­ing poor qual­i­ty care to many chil­dren with ADHD. Cer­tain­ly, the data indi­cate that there is ample room for improve­ment in terms of pedi­a­tri­cians fol­low­ing the AAP guide­lines more con­sis­tent­ly. How­ev­er, pedi­a­tri­cians often have dozens (or in some cas­es, hun­dreds) of youth with ADHD in their prac­tice and pro­vid­ing sys­tem­at­ic fol­low up care and treat­ment mon­i­tor­ing in the con­text of a busy com­mu­ni­ty-based prac­tice can be extra­or­di­nar­i­ly dif­fi­cult. Even when rat­ing scales are pro­vid­ed to par­ents and teach­ers so that a child’s treat­ment can be mon­i­tored, they are often not returned in a time­ly man­ner. Thus, the behav­ior of par­ents and teach­ers can under­mine a physician’s efforts to pro­vide care con­sis­tent with AAP guide­lines despite his or her best efforts.

One thing that can and should facil­i­tate physi­cians obtain­ing the infor­ma­tion they need for both ini­tial assess­ments and ongo­ing treat­ment mon­i­tor­ing is use of the inter­net. There are now sev­er­al sites that enable par­ent and teacher behav­ior rat­ing forms to be com­plet­ed online and trans­mit­ted secure­ly to physi­cians involved in a child’s care. I have been con­sult­ing with one such com­pa­ny that offers this ser­vice for the past year, and am per­plexed that more pro­fes­sion­als are not tak­ing advan­tage of this type of ser­vice.

There are lim­its, of course, in what can be con­clud­ed from this study. In par­tic­u­lar, all pedi­a­tri­cians were recruit­ed from a spe­cif­ic geo­graph­ic area, and gen­er­al­iza­tions to the care pro­vid­ed in oth­er regions can’t be made with cer­tain­ty.

The authors, who are involved in efforts to help pedi­a­tri­cians deliv­er high­er qual­i­ty ADHD care, con­clude by not­ing that “Although guide­lines are an impor­tant first step, addi­tion­al efforts, like­ly ini­ti­at­ed or incen­tivized out­side the prac­tice, are required to improve the qual­i­ty of care deliv­ered in pedi­atric set­tings. Such efforts may take the form of qual­i­ty improve­ment, clin­i­cal deci­sion sup­port tools, using pay-for-per­for­mance incentives,and/or part­ner­ing with men­tal health pro­fes­sion­als.”

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 online course How to Nav­i­gate Con­ven­tion­al and Com­ple­men­tary ADHD Treat­ments for Healthy Brain Devel­op­ment.

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