Electroconvulsive therapy in adolescents with mood disorder: patients’ and parents’ attitudes

Psychiatry Research 104 Ž2001. 183᎐190

Electroconvulsive therapy in adolescents with mood disorder: patients’ and parents’ attitudes Olivier Taieb a , Martine F. Flament b, Maurice Corcos c , Philippe Jeammet c , Michel Basquin a , Philippe Mazet a , David Cohena,U a

Department of Child and Adolescent Psychopathology, Groupe Hospitalier Pitie-Salpetriere, ´ ´ ` 43-87 Boule¨ ard de l’Hopital, ˆ 75013 Paris, France b Centre National de la Recherche Scientifique UMR 7593, Groupe Hospitalier Pitie-Salpetriere, ´ ´ ` 43-87 Boule¨ ard de l’Hopital, 75013 Paris, France ˆ c Department of Adolescent Psychiatry, Institut Mutualiste Monsouris, 42 Boule¨ ard Jourdan 75014, Paris, France Received 28 December 2000; received in revised form 12 June 2001; accepted 7 August 2001

Abstract The aim of the study was to assess retrospectively patients’ and parents’ experiences and attitudes towards the use of electroconvulsive therapy ŽECT. in adolescence. The experiences of subjects Ž n s 10. who were administered ECT in adolescence for a severe mood disorder and their parents Ž n s 18. were assessed using a semi-structured interview after a mean of 4.5 years Žrange, 19 months to 9 years.. Their attitudes were mostly positive and ECT was considered a helpful treatment. Concerns were frequently expressed, probably because ECT was not fully understood by the patients and their families. Most complaints were of transitory memory impairment. The parents were satisfied with the consent procedure, while all but one patient did not remember the consent procedure. We concluded that, despite negative views about ECT in public opinion, adolescent recipients and their parents shared overall positive attitudes towards the use of ECT in this age range. 䊚 2001 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Electroconvulsive therapy; Adolescence; Attitude towards treatment

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Corresponding author. E-mail address: [email protected] ŽD. Cohen..

0165-1781r01r$ - see front matter 䊚 2001 Elsevier Science Ireland Ltd. All rights reserved. PII: S 0 1 6 5 - 1 7 8 1 Ž 0 1 . 0 0 2 9 9 - 2

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1. Introduction Despite the occasional use of electroconvulsive therapy ŽECT. in adolescent psychiatric practice, few studies have been conducted to assess its efficacy and safety for individuals aged 13᎐19 years ŽRey and Walter, 1997.. Indications, technical characteristics, side effects and outcome are still uncertain. Several case reports showed that ECT can be a safe and effective treatment for adolescents with intractable mood disorder, in particular when patients exhibit catatonic or psychotic symptoms ŽSchneekloth et al., 1993; Kutcher and Robertson, 1995; Moise and Petrides, 1996; Ghaziuddin et al., 1996; Cohen et al., 1997; Walter and Rey, 1997; Strober et al., 1998.. However, some authors ŽBaker, 1995a,b. have raised ethical concerns and alleged unknown cognitive secondary effects to ban ECT in adolescents. This negative point of view towards the use of ECT in this age group is also codified in State legislation ŽFink and Coffey, 1998.. Legislation in California Ž1974., Tennessee Ž1976., Colorado Ž1977. and more recently Texas Ž1993. prohibits the use of ECT in minors under 12, 14, 16 and 18 years of age, respectively. However, the American Psychiatric Association ŽAPA. did not consider age as a contraindication ŽAmerican Psychiatric Association, 2001.. In France, the use of ECT in teens is not codified, and guidelines are very similar to those formulated by the APA ŽAgence Nationale d’Accreditation et d’Evaluation en Sante, ´ ´ 1998.. Although the question is still controversial, a Medline search revealed only one study in the adolescent psychiatric literature regarding patients’ experiences and attitudes towards ECT at this age ŽWalter et al., 1999a.. In that study, adolescents’ opinions about ECT were generally positive; most of the subjects considered ECT a legitimate treatment and would have ECT again if necessary; memory impairment was the most frequent secondary effect reported. However, more data are needed, as the sample was small and the survey only administrated by telephone. The same group assessed the experience, knowledge and attitudes of parents of adolescents who were treated with ECT ŽWalter et al., 1999b..

Overall, their opinions about ECT were favorable. The vast majority of parents would make a decision for their child to have the treatment again if necessary. The aim of the present study was to assess retrospectively, several years after treatment, the opinions of subjects who had received ECT for a severe mood disorder during adolescence and the opinion of their parents regarding their experience of ECT and subsequent feelings on the use of this treatment.

2. Methods 2.1. Subjects We searched, from chart review and staff report, for all adolescents who had been treated with ECT for a mood disorder before 19 years of age in three adolescent psychiatry departments and two adult psychiatry departments, all located in the Paris area. During a 10-year period from 1987 to 1996, 20 adolescent inpatients were found to meet those criteria and were searched for in a follow-up investigation. Among them, one had died from suicide, one could not be traced and six declined to participate in the study. The remaining 12 subjects were approached to evaluate their current clinical and cognitive status, and to assess their experiences and attitudes towards ECT. One subject was too ill at the time of the study to complete the full evaluation and one was not judged to be able to because of mental retardation ŽIQ s 65. due to neonatal anoxia. Thus, 10 patients Ž6 women and 4 men. could be included in the current study, after written informed consent was obtained. Details on the clinical description of the study group at both index episode and follow-up are available in Taieb et al. Žin press.. At the time of the index episode, patients’ mean age was 17.6 years Žrange, 15᎐19 years.. Bilateral ECT was performed in all cases for a severe Žall Clinical Global Impression severity scores were s 7. mood disorder refractory to pharmacotherapy. DSM-III-R diagnoses were: major depressive episode with psychotic features

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ŽPF. Ž n s 5.; manic episode with PF Ž n s 3.; mixed episode with PF Ž n s 2.. All patients showed clinical improvement after ECT. There were no differences concerning ECT procedure and efficacy among subjects interviewed and those who were not. Follow-up interviews were conducted between January and June 1998. Patients’ mean age at interview was 22.6 years Žrange, 17᎐27 years.. Mean time from the index episode was 4.5 years Žrange, 2᎐9 years.. During this period, six patients relapsed at least once and three received a second course of ECT. At follow-up, all subjects were assessed using the Mini International Neuropsychiatric Interview ŽMINI., a structured diagnostic interview developed by Lecrubier and Sheehan, which has shown good concurrent validity with the Composite International Diagnostic Interview ŽCIDI. ŽLecrubier et al., 1997.. All subjects met DSM-IV criteria for bipolar disorder, but none had a current affective episode at the time of interview. Patients’ parents were asked to participate in the study with the assent of their child. Two parents Žfrom two different families. refused to participate. One was not found. Finally, 18 were evaluated. 2.2. Inter¨ iew Patients were given the semi-structured interview on experiences and attitudes toward ECT designed by Freeman and Kendell Ž1980. and translated into French by three of us ŽOT, DC, MF.. An adapted version of the interview Žwording modified accordingly and unrelevant questions omitted. was also given to each parent. In the Freeman and Kendell interview, each participant is first asked to talk spontaneously about hisrher views and experience of ECT. Then, hershe is asked specific questions regarding hisrher experiences and possible concerns about ECT, the effectiveness of ECT, the understanding of the treatment, and the consent procedure. At last, hershe is asked to respond to a number of statements by agreeing, disagreeing, or saying ‘don’t know’. During the same interview, patients were also fully assessed for current diagnostic, clinical, so-

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cial and academic status and were compared with matched patients never treated with ECT on a battery of cognitive tests assessing anterograde memory abilities and verbal learning. This has been reported in another article ŽCohen et al., 2000..

3. Results 3.1. Spontaneous comments Three patients stated that they had not participated in the decision to use ECT. Only one remembered that he discussed the treatment decision with the doctor and his parents. Many patients spontaneously evoked persisting worries about ECT Ži.e. brain damage following ECT, personality changes and consequences of electrical stimulation and of seizures.. Half of the subjects talked about their poor understanding of ECT’s mechanisms. One patient added that ECT should not be used, because its mechanism of action remains unknown. Five patients spontaneously emphasized that ECT was a helpful treatment, sometimes faster than drugs. One patient was sorry that ECT, in her case, was proposed and used only after 6 months of severe depression. Regarding possible ECT side effects, memory impairment was the only one spontaneously evoked by three patients. One of them still complained of memory gaps about her childhood. Another one wondered whether ECT was responsible for the school problems that she had during the year following ECT. Most parents explained how difficult it had been to give consent for the application of ECT in their own child. What made the consent somewhat easier to give were: the severity of the disease; the lack of response to drugs; the duration of illness; and trust in doctors. Six parents talked about a family history of ECT treatment. A father reported on his own experience of ECT: he had been given ECT for depression at the age of his son and had no bad memory of this treatment procedure. Thirteen parents spontaneously described their fears about ECT, notably regarding the use of electricity, possible brain damage

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and the consequences of seizures. The efficacy of ECT had reassured them. A mother said that ECT had been life saving for her daughter. Concerning possible secondary effects, six of the parents spontaneously reported memory impairment and post-ECT confusion. 3.2. Questionnaire 3.2.1. Experiences and concerns about ECT Table 1 shows the main answers of patients and parents. Concerning the treatment itself, anesthetic injections were the only part which was judged unpleasant by a majority of patients Ž60%.. ECT was a frightening treatment for both patients and parents, who had similar worries. The major common fears concerned the use of electricity, the induction of seizures and possible brain damage from treatment. However, if ECT were to appear necessary in the future, 60% of patients and 83% of parents said that they would receive ECT Žor accept ECT for a child. again. 3.2.2. Secondary effects of ECT All patients and parents reported memory impairment when specifically asked ŽTable 2.. Generally, these complaints were temporary, as only one patient agreed with the statement that ‘her memory had never returned to normal after ECT’. Of note, she was the most recently treated, ECT having ended 19 months prior to the interview. She and another patient not reporting current memory impairment believed that ECT caused a permanent change to memory. 3.2.3. Understanding of the treatment and consent procedure Eighty-nine percent of parents felt they had received adequate explanations of ECT before consent was requested. However, half of the patients did not remember whether explanations had been given. Most of them Ž80%. said that more explanations should be provided before treatment. Concerning the understanding of the treatment, only one patient and one parent responded they had a full understanding of what the treatment involved. They knew about the anesthetic, the position of electrodes, and the

induction of an epileptic fit with electricity. The majority of patients and parents had either a vague Ž80 and 50%, respectively. Žeg. ‘ECT gives a jolt’. or a false Ž10 and 44%, respectively. understanding of the treatment Žeg. ‘the two parts of the brain are put back in phase’; ‘the efficiency depends on falling asleep’.. Finally, patients and parents were asked whether or not they could have refused ECT if they had wanted to. Responses were different from parents ᎏ 89% answering yes ᎏ and patients ᎏ 80% answering don’t know. 3.2.4. Opinions on the efficacy of ECT All patients and parents regarded ECT as a very helpful treatment ŽTable 3.. Of note, all patients and parents disagreed with the statement: ‘ECT is dangerous and should not be used’, including the patients saying ECT should not be used during spontaneous comments, or reporting residual memory problems.

4. Discussion The present study is one of the first to focus on patients’ and parents’ attitudes and experiences towards ECT in adolescence. Most patients and their parents had positive views regarding ECT. In particular, all patients and parents disagreed with the statement: ‘ECT is dangerous and should not be used’ and all emphasized the effectiveness of the treatment. However, concerns about ECT were often expressed and ECT remained a frightening treatment to have for most patients. All patients complained of memory impairment when asked, including one patient still reporting subjective memory impairment. Of note, this patient was the most recently treated and she did not exhibit objective memory impairment on cognitive testing ŽCohen et al., 2000.. Parents’ attitudes and experiences were positive and similar to those of their children. Parents’ involvement in the procedure seemed to have been important, most of them being satisfied with the explanations given before treatment, unlike their children. These results should be tempered by the limita-

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Table 1 ECT in adolescents: patients’ and parents’ experiences and concerns Patients’ experience of various parts of the treatment Ž n s 10. Ž%.

Premedication Waiting for treatment ECT staff Anesthetic injections Falling asleep Waking up

Pleasant

Unpleasant

Neutral

Don’t know

0 0 60 0 10 0

0 30 0 60 20 20

0 20 30 20 60 20

100 50 10 20 10 60

Do you remember how you felt before the first treatment? Patients Ž n s 10.% Very anxious and frightened Slightly anxious and frightened No particular feelings Pleased treatment starting Can’t remember

Parents Ž n s 18.%

60 0 10 0 30

83 17 0 0 0

How frightening or upsetting was ECT compared with what you expected? Patients Ž n s 10.% More About the same Less Don’t know

Parents Ž n s 18.%

10 40 30 20

11 78 11 0

Responses to statements about experience of ECT Patients Ž n s 10.% I was so upset by the treatment that I’d be reluctant to accept it again If necessary, I’d readily Žlet my child. have the treatment again More explanations should be given about ECT ECT is a frightening treatment to have

Parents Ž n s 18.%

Agree 50

Disagree Don’t know Agree 30 20 11

Disagree Don’t know 66 23

60

30

10

83

6

11

80

20

0

17

56

27

90

10

0

94

6

0

Concerns about ECT Patients Ž n s 10.% About being made unconscious That electricity was used in the treatment About having a fit or a turn Of possible brain damage as a result of the treatment

Not at all 50 20 10 20

tions of the study: Ži. Given the very low frequency of ECT use in adolescents ŽThompson and Blaine, 1987; Walter and Rey, 1997; Duffett

Parents Ž n s 18.% A little 30 50 60 70

A lot 20 30 30 10

Not at all 61 44 22 11

A little 28 28 39 67

A lot 11 28 39 22

et al., 1999., the study sample was certainly small. Žii. In all patients included, ECT was efficient. It is likely that treatment effectiveness and positive

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188 Table 2 Reported secondary effects of ECT Worst side effect

Memory impairment Confusion No side effect

Patients Ž n s 10.%

Parents Ž n s 18.%

60 20 20

66 17 17

Patients Ž n s 10.% 70 30 20 10 10

Parents Ž n s 18.% 66 34 5 30 11

Estimate of severity Memory impairment Confusion Headache

Mild Severe Mild Severe Mild Severe

Opinions on memory impairment Patients Ž n s 10.% Memory has never returned to normal after ECT Memory now is better than it has ever been ECT is helpful, but the side effects are severe ECT has no effect on memory at all ECT causes permanent changes to memory

Agree 10 0 20 0 20

Disagree 90 40 80 90 80

Parents Ž n s 18.% Don’t know 0 60 0 10 0

Agree 0 0 0 6 6

Disagree 66 61 100 72 72

Don’t know 34 39 0 22 22

Table 3 How helpful was ECT in adolescents according to patients and parents? How much did ECT help you Žyour child.?

A lot A little No change Has the effect lasted? Permanently 1 year or more - 12 months

Patients Ž n s 10.%

Parents Ž n s 18.%

100 0 0

100 0 0

40 50 10

56 28 16

Opinions on the efficacy of ECT Patients Ž n s 10.% ECT is a helpful procedure ECT works only for a short while ECT gets you better quicker than drugs ECT is dangerous and should not be used ECT is given to too many people ECT is often given to people who do not need it

Agree 100 0 60 0 10 0

Disagree 0 100 0 100 70 70

Parents Ž n s 18.% Don’t know 0 0 40 0 20 30

Agree 100 6 72 0 0 0

Disagree 0 94 6 100 72 66

Don’t know 0 0 22 0 28 34

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views on the treatment are linked, as has been suggested in reports on adult groups of patients ŽFreeman and Kendell, 1980; Weiner et al., 1987; Calev et al., 1991.. Patients’ attitudes might have been less positive had they not responded to ECT. Žiii. The delay between ECT and interviewing may have resulted in patients and their parents forgetting information. However, our results confirm the studies of Walter et al. Ž1999a,b. reporting overall positive views in adolescents treated with ECT, and in their families. We found several studies conducted on the same topic in adult samples ŽFreeman and Kendell, 1980; Baxter et al., 1986; Weiner et al., 1987; Benbow, 1988; Calev et al., 1991; Szuba et al., 1991; Fox, 1993; Pettinati et al., 1994.. In our adolescent patients and their parents, fear was markedly more common than in ECT-treated adult samples. For example, only 39% of patients in Freeman and Kendell’s series Ž1980. and 29% of patients from Benbow’s series Ž1988. found that ECT was a frightening treatment. In another study, 98% of adult patients said they would agree to be given ECT should they become depressed again ŽPettinati et al. 1994.. Regarding the understanding of the treatment, our results appear to be very similar to those reported in adult groups wi.e. only 15% had a full understanding of the ECT procedure in Freeman and Kendell’s series Ž1980.x. A surprising finding is the fact that parents were unable to describe what the treatment involved, even though they found the explanations given prior to treatment to be satisfactory and felt free to give their consent for ECT in their child. This point highlights how difficult it is to obtain a true and free informed consent, when regarding severe psychiatric disorders. It is, therefore, not surprising that most parents expressed spontaneously how difficult it was for them to give the consent and which were the factors that made the consent easier. These included the severity of the condition, the failure of drug treatment, the duration of the illness, and the trust in doctors. No spontaneous comment was made on the explanations given prior to treatment.

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Finally, our findings call for several comments: Ži. Studies on attitudes towards specific treatments should allow spontaneous comments, as it may help to receive unexpected opinions. Žii. Every effort should be made to obtain a truly informed consent. Repeated information should be given to patients when recovering. Žiii. Psychiatrists should pay particular attention to concerns about the ECT procedure, as these may not be expressed spontaneously.

5. Conclusion Experiences and attitudes of patients treated with ECT during adolescence were generally positive and similar to their parents’ opinions. All patients and parents acknowledged the efficacy of ECT, whereas memory impairment was the worst secondary effect cited. These attitudes contrast with public opinion towards ECT in young people, which tends to be more negative. Contrary to adult patients, adolescents treated successfully with ECT still view the treatment as a frightening procedure. References Agence Nationale d’Accreditation et d’Evaluation en Sante, ´ ´ 1998. Indications et modalites ´ de l’electroconvulsivotherapie. ANAES, Paris. ´ American Psychiatric Association, 2001. The Practice of Electroconvulsive Therapy: Recommendations for Treatment, Training, and Privileging. Author, Washington, DC. Baker, T., 1995a. ECT and young minds. Lancet 345, 65. Baker, T., 1995b. The minor issue of electroconvulsive therapy. Nature Medicine 1, 199᎐200. Baxter, L.R., Roy-Byrne, P., Liston, E.H., Fairbanks, L., 1986. The experience of ECT in the 1980s. Convulsive Therapy 2, 179᎐189. Benbow, S.M., 1988. Patients’ views on ECT on completion of a course of treatment. Convulsive Therapy 4, 146᎐152. Calev, A., Kochav-Lev, E., Tubi, N., Nigal, D., Chazan, S., Shapira, B., Lerer, B., 1991. Change in attitude toward ECT: effects of treatment, time since treatment and severity of depression. Convulsive Therapy 7, 184᎐189. Cohen, D., Paillere-Martinot, M.L., Basquin, M., 1997. Use of ` electroconvulsive therapy in adolescents. Convulsive Therapy 13, 25᎐31. Cohen, D., Taieb, O., Flament, M., Benoit, N., Chevret, S., Corcos, M., Fossati, P., Allilaire, J.F., Jeammet, P., Basquin,

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