Survey: 40% who discontinue ADHD medication treatment concerned about loss of self

For many indi­vid­u­als with ADHD the symp­toms and prob­lems asso­ci­at­ed with the dis­or­der per­sist into young adult­hood and beyond. In cas­es where an ongo­ing pos­i­tive response to med­ica­tion occurs, and where there are no sig­nif­i­cant adverse side effects, treat­ment that per­sists across many years of devel­op­ment could thus be helpful.

How­ev­er, such ongo­ing treat­ment with med­ica­tion is the excep­tion rather than the rule. In fact, among those indi­vid­u­als with ADHD who start on med­ica­tion, esti­mates from a rep­re­sen­ta­tive com­mu­ni­ty sam­ple sug­gest that the aver­age dura­tion of treat­ment is less than 3 years. This may be one rea­son why doc­u­ment­ing long term ben­e­fits of med­ica­tion treat­ment has been difficult.

It is not uncom­mon for ado­les­cents to protest the use of ADHD med­ica­tions and to express a desire to stop tak­ing it. An ado­les­cent may feel he/she no longer needs to use med­ica­tion and that it is no longer help­ful. He or she may also have con­cerns about what it means to use med­ica­tion to help man­age their behav­ior and feel that it changes them in ways they do not want to be changed. Because ado­les­cents and young adults have far greater influ­ence over treat­ment deci­sions than chil­dren, their beliefs about med­ica­tion treat­ment are like­ly to be an extreme­ly impor­tant fac­tor in their will­ing­ness to con­tin­ue this treat­ment. Thus, although such beliefs may play an impor­tant role in treat­ment adher­ence, research on this issue is limited.

A study pub­lished recent­ly online in the Jour­nal of Atten­tion Dis­or­ders pro­vides a care­ful look at this issue among col­lege stu­dents with ADHD [Pil­low et al., (2012). Beliefs regard­ing stim­u­lant med­ica­tion treat­ment effects among col­lege stu­dents with a his­to­ry of past or cur­rent usage. Jour­nal of Atten­tion Dis­or­ders. DOI:10.1177/1087054712459744]. The authors were inter­est­ed in exam­in­ing whether beliefs about med­ica­tion treat­ment were relat­ed to whether stu­dents who had used med­ica­tion pre­vi­ous­ly con­tin­ued to use it in college.

Par­tic­i­pants were 193 stu­dents (60% men) who self-report­ed receiv­ing a diag­no­sis of ADHD and a his­to­ry of using stim­u­lant med­ica­tion. These stu­dents com­plet­ed a 50-item sur­vey to learn about their beliefs about stim­u­lant med­ica­tion treat­ment in 4 dif­fer­ent domains:

1. Improved atten­tion and aca­d­e­mics — Items on this scale assessed the extent to which stu­dents believed that med­ica­tion helped with man­ag­ing atten­tion dif­fi­cul­ties and improv­ing their aca­d­e­m­ic per­for­mance, e.g., improv­ing grades, help­ing them stay on task, and help­ing them keep school-relat­ed pri­or­i­ties balanced.

2. Loss of authen­tic self — This scale assessed stu­dents’ belief that using stim­u­lant med­ica­tion changed them in some essen­tial way, i.e., that it pre­vent­ed them from being their true selves. The types of changes asked about includ­ed “mak­ing me less expres­sive in artis­tic pur­suits”, “tak­ing away impor­tant parts of who I am”, “decreas­ing my abil­i­ty to laugh and joke around with oth­ers”, and “keep­ing me from being suc­cess­ful at things oth­er than academics”.

3. Social self-enhance­ment — This scale mea­sured the extent to which stu­dents believed that med­ica­tion enhanced their social func­tion­ing, e.g., “helps me get along with oth­ers”, “allows my true per­son­al­i­ty to shine”, “enables me to get oth­ers to see me as I see myself”. Thus, it was a counter to the idea that med­ica­tion result­ed in the loss of some essen­tial aspect of self.

4. Com­mon side effects — Items on this scales eval­u­at­ed stu­dents expe­ri­ence of side effects asso­ci­at­ed with stim­u­lant med­ica­tion, e.g., “decreased my abil­i­ty to get a good night of sleep”, “caused me to lose my appetite”, “makes me more impulsive”.

Par­tic­i­pants were also asked about their gen­er­al atti­tudes towards using stim­u­lant medication.

Results

As not­ed above, the researchers were par­tic­u­lar­ly inter­est­ed in how med­ica­tion-relat­ed beliefs dif­fered between col­lege stu­dents tak­ing ADHD med­ica­tion and those who had cho­sen to stop using it. Com­pared to those tak­ing med­ica­tion, those who dis­con­tin­ued use…

- were less like­ly to believe that med­ica­tion improved their atten­tion and aca­d­e­m­ic per­for­mance; How­ev­er, the major­i­ty still believe it was helpful.

- were more like­ly to believe that it result­ed in a loss of their authen­tic self; When this occurred, it was eval­u­at­ed very negatively.

- were less like­ly to believe that it result­ed in any social self-enhancement;

- had less favor­able gen­er­al atti­tudes over­all towards the use of stim­u­lant medication.

In con­trast to the dif­fer­ences found on these scales, cur­rent med­ica­tion users and non-users did not dif­fer in their reports of com­mon side effects.

Sum­ma­ry and Implications

Results of this inter­est­ing study pro­vides use­ful infor­ma­tion con­cern­ing the deci­sions ado­les­cents and young adults make about whether to con­tin­ue using stim­u­lant med­ica­tion to treat their ADHD.

An espe­cial­ly inter­est­ing find­ing was that near­ly 40% of stu­dents who dis­con­tin­ued med­ica­tion report­ed con­cerns that using med­ica­tion com­pro­mised their true self in some essen­tial way. Such con­cerns are like­ly to be an impor­tant rea­son why many ado­les­cents and young adults elect to stop tak­ing their med­ica­tion, even when they per­ceive it is help­ing with atten­tion and aca­d­e­m­ic performance.

Do physi­cians address such con­cerns with the indi­vid­u­als they treat? I am not aware of any data on this issue but would be sur­prised if this was reg­u­lar­ly addressed. One impli­ca­tion is that clin­i­cians should rec­og­nize that ado­les­cents may har­bor such con­cerns, and pro­vide an oppor­tu­ni­ty to explore and dis­cuss these issues. Pro­vid­ing a forum for ado­les­cents to voice such con­cerns could be help­ful in mit­i­gat­ing them, thus reduc­ing the like­li­hood that med­ica­tion would be dis­con­tin­ued pre­ma­ture­ly. Par­ents should also be atten­tive to the pos­si­bil­i­ty that their child has such con­cerns and could also be extreme­ly help­ful to their child in think­ing about such issues.

The con­cerns that many stu­dents expressed about med­ica­tion sup­press­ing a val­ued aspect of their self also high­lights the impor­tance of study­ing this issue more care­ful­ly. It would be easy to dis­miss these con­cerns as erro­neous accounts of how med­ica­tion actu­al­ly affect­ed them, but the fact that many stu­dents felt this to be the case is impor­tant. It would be help­ful to learn what con­tributes to such beliefs and how to best address them when they arise. It would also be inter­est­ing to study whether such con­cerns emerge even ear­li­er in devel­op­ment as there is no basis for assum­ing that younger chil­dren would not har­bor sim­i­lar feeling.

Final­ly, it is impor­tant that these find­ings not be used as evi­dence against the appro­pri­ate use of med­ica­tion. Although some may argue that med­ica­tion treat­ment should not be used if it leads many to believe that an essen­tial aspect of them­selves is being lost, an equiv­a­lent num­ber of par­tic­i­pants believed that med­ica­tion enhanced their social func­tion­ing and enabled their true per­son­al­i­ty to come through. Thus, the find­ings high­light the impor­tance of under­stand­ing the beliefs that each indi­vid­ual holds about med­ica­tion treat­ment, as these will vary con­sid­er­ably and can play an impor­tant role in their will­ing­ness to continue.

– 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 Atten­tion Research Update, an online newslet­ter that helps par­ents, pro­fes­sion­als, and edu­ca­tors keep up with the lat­est research on ADHD, and teach­es the online course  How to Nav­i­gate Con­ven­tion­al and Com­ple­men­tary ADHD Treat­ments for Healthy Brain Devel­op­ment.

Pre­vi­ous arti­cles by Dr. Rabin­er:

• Study: Promis­ing New Neu­rocog­ni­tive Inter­ven­tion for Preschool­ers with ADHD (TEAMS)
• Study: Fam­i­lies’ Per­spec­tives on ADHD and its Treatment
• Self-Reg­u­la­tion and Barkley’s The­ory of ADHD