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5 Reasons Why Parents of Children with ADHD Need to Become Proactive, Well-Informed Advocates

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Most chil­dren with ADHD receive their care from com­mu­ni­ty-based pedi­a­tri­cians, so it is espe­cial­ly impor­tant for that care to be con­sis­tent with best-prac­tice guide­lines.

Unfor­tu­nate­ly, all too often it is not.

The guidelines

Here is a brief sum­ma­ry of some key ADHD guide­lines pub­lished by the Amer­i­can Acad­e­my of Pedi­atrics in 2000 (and updat­ed in 2011).

  • 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.
  • 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 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.
  • 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.
  • 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.
  • When pre­scrib­ing med­ica­tion, clin­i­cians should titrate dos­es of ADHD med­ica­tion to achieve the max­i­mum ben­e­fit with min­i­mum side effects.
  • It is impor­tant for med­ica­tion effi­ca­cy to be sys­tem­at­i­cal­ly mon­i­tored at reg­u­lar inter­vals so that adjust­ments can be made when indi­cat­ed

How well are these guidelines being followed?

The best data on this ques­tion comes from the study Vari­abil­i­ty in ADHD care in com­mu­ni­ty-based pedi­atric prac­tices, pub­lished online recent­ly in the jour­nal Pedi­atrics. 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. What did they find? In essence, they found 5 strong rea­sons why par­ents of chil­dren with ADHD need to become proac­tive & well-informed advo­cates of their care:

  1.  For around 30% of chil­dren diag­nosed with ADHD, the evi­dence that DSM cri­te­ria were met was miss­ing.
  2.  ADHD rat­ing scales were col­lect­ed from par­ents and teach­ers for only 56% of youth with an ADHD diag­no­sis.
  3.  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.
  4.  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.
  5.  With respect to mon­i­tor­ing treat­ment response over time, 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.

Although the data does not come from a nation­al­ly rep­re­sen­ta­tive sam­ple, results are dis­cour­ag­ing in that guide­lines from the Amer­i­can Acad­e­my of Pedi­atrics on the eval­u­a­tion and treat­ment of ADHD were fre­quent­ly not fol­lowed. The find­ings indi­cate that many chil­dren are diag­nosed with ADHD in the absence of clear­ly meet­ing DSM diag­nos­tic cri­te­ria and that behav­ioral treat­ment is rarely rec­om­mend­ed.

Why does this matter?

Although pedi­a­tri­cians are fre­quent­ly ini­ti­at­ing med­ica­tion treat­ment, gath­er­ing data ear­ly in treat­ment to deter­mine the child’s response is often neglect­ed, and sys­tem­at­i­cal­ly mon­i­tor­ing treat­ment response over time is rare. 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.

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.

All par­ents should become proac­tive and well-informed advo­cates of their chil­dren, part­ner­ing with their health care providers and allied pro­fes­sion­als to ensure the prop­er diag­no­sis, treat­ment and mon­i­tor­ing for each indi­vid­ual child.

Dr. David Rabin­er is a child clin­i­cal psy­chol­o­gist, Direc­tor of Under­grad­u­ate Stud­ies in the Depart­ment of Psy­chol­o­gy and Neu­ro­science at Duke Uni­ver­si­ty, and founder of the Atten­tion Research Update. Alvaro Fer­nan­dez, named a Young Glob­al Leader by the World Eco­nom­ic Forum, is the co-author of The Sharp­Brains Guide to Brain Fit­ness: How to Opti­mize Brain Health and Per­for­mance at Any Age. Child-Brain

–> They have part­nered to offer the upcom­ing online course How to Nav­i­gate Con­ven­tion­al and Com­ple­men­tary ADHD Treat­ments for Healthy Brain Devel­op­ment. (May 2015; reg­is­tra­tion open)

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Categories: Attention and ADD/ADHD, Cognitive Neuroscience, Health & Wellness

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