Perceptions of Deep Brain Stimulation for Adolescents with Obsessive-Compulsive Disorder

Abstract

Objective:

The present study aims to understand perceptions of deep brain stimulation (DBS) for severe obsessive-compulsive disorder (OCD) in adolescents among two groups: parents of children with a history of OCD and adults with a history of OCD.

Methods:

Two hundred sixty participants completed a questionnaire exploring their treatment history, relevant symptom severity, DBS knowledge, and DBS attitudes using an acceptability scale and a series of statements indicating levels of willingness or reluctance to consider DBS for adolescents with severe OCD or severe epilepsy.

Results:

Overall, participants found DBS to be fairly acceptable for adolescents with severe OCD, with 63% reporting at least 7/10 on a 0–10 acceptability Likert scale. Respondents were more willing to consider DBS for epilepsy than for OCD. Several factors were associated with greater willingness to consider DBS for OCD, including familiarity with DBS, the presence of suicidal thoughts, assurances of daily functioning improvements, and assurances of substantial symptom reduction. Concerns about safety, personality changes, and long-term effects on the body were associated with greatest reluctance to consider DBS for OCD.

Conclusions:

Our findings support the importance of increasing parents' familiarity with DBS, monitoring factors participants identified as most important to their DBS perceptions in future DBS research, and communicating benefits and risks clearly. We also highlight the need for further research on perceptions of DBS for severe and refractory OCD in adolescents.

Introduction

Obsessive-compulsive disorder (OCD) is a neuropsychiatric condition that affects 1%–3% of adults, adolescents, and children (Ruscio et al. 2010; Lawrence et al. 2015; Barzilay et al. 2019). OCD can be disabling, and 65% of cases involve severe impairment (Ruscio et al. 2010). Childhood and adolescent onset of OCD is common, with onset before adulthood reported by more than 50% of cases (Dell'Osso et al. 2016).

Although approximately half of pediatric patients achieve remission from first-line treatments such as cognitive behavioral therapy (CBT) and serotonin reuptake inhibitor medications (McGuire et al. 2015; Ost et al. 2016), a significant number of youth do not experience sufficient improvement. Treatment augmentation approaches for youth with OCD, such as intensive CBT, alternative psychotherapies, and medications, are understudied and often used on a trial and error basis. Without timely and successful treatment, OCD can become a chronic condition that severely impacts long-term quality of life for children and adolescents and interferes with aspects of functioning in the social, occupational, and personal realms, and untreated OCD often worsens over time (Fineberg et al. 2019). Therefore, there is an urgent need for additional interventions for children and adolescents with severe and treatment-refractory OCD.

Deep brain stimulation (DBS) has shown promise in treating a variety of neurological disorders, including Parkinson's disease, dystonia, and epilepsy (Lee et al. 2019), and preliminary research on DBS for psychiatric conditions is being conducted as well (e.g., major depressive disorder; Kisely et al. 2018). The U.S. Food and Drug Administration (FDA) has issued a humanitarian device exemption for off-label DBS among adults with refractory OCD. Studies among adult patients with refractory OCD are promising: a meta-analysis of 31 studies indicated that 60% of severe, treatment-refractory adult OCD cases responded to DBS (Alonso et al. 2015). A recent review also identified potential DBS treatment strategies that may enhance outcomes for adults with OCD, including optimized target selection and integration with post-surgery CBT (Guzick et al. 2020). Although the FDA humanitarian device exemption for DBS is currently restricted to adults, there is interest in the potential utility of DBS for the treatment of severe and refractory OCD in adolescents. Indeed, research on the use of DBS in pediatric samples is already underway, with positive results for the treatment of pediatric dystonia and Tourette's syndrome (Cif and Coubes 2017; Coulombe et al. 2018).

When considering the use of DBS for adolescent OCD, it is vital to examine ethical concerns that may arise, both due to the nature of the treatment and the age group in question. Issues of autonomy and consent, beneficence and non-malfeasance (i.e., the balance of safety issues and benefits of the treatment), and justice in distribution of the treatment are particular bioethical concerns to consider for DBS. Autonomy and consent are especially relevant in the case of DBS use for adolescents since minors do not have legal authority to consent and often lack the necessary decision-making capacity to consent to complex medical treatments for themselves in a bioethical framework (Schermer 2011). Because of the nascent state of this literature, the long-term impacts of DBS on the developing brain are also unclear, which complicates evaluations of risk and benefit that are vital when considering any treatment, especially an experimental one (Smeets et al. 2018; Muñoz et al. 2020). Parents' perceptions of DBS for adolescents are particularly relevant because parents tend to initiate the process of seeking treatment and have the primary responsibility for their adolescent's medical decisions. Understanding parental perceptions of DBS and factors associated with their attitudes will allow providers to offer the most salient information to parents who may consider the use of DBS for their adolescent.

Despite the importance of understanding parents' perceptions, however, few previous studies have investigated parents' views on DBS or other forms of neuromodulation in children or adolescents. Wagner et al. (2018) surveyed 227 parents and non-parents' opinions on pediatric transcranial direct current stimulation (tDCS). tDCS is a noninvasive intervention that uses electrical currents to directly stimulate specific areas of the brain (Kuo et al. 2017). A 58% majority in Wagner et al. were willing to use tDCS to enhance their hypothetical child's mood if it was below average, and participants were more likely to support free use of tDCS to enhance a below-average mood than to enhance other traits (such as empathy or motivation). Respondents were less willing to support enhancing traits deemed fundamental to their child's authentic self (e.g., 39% were willing to enhance math ability and 31% were willing to enhance mood, vs. only 5% willing to enhance empathy) and indicated a slight concern about unnatural enhancement of capabilities. Although it is not clear whether these findings would extend to other forms of neuromodulation, it is possible that parents could have similar concerns about DBS if it is perceived as changing fundamental aspects of personality or self. Participants' willingness to use tDCS increased with higher levels of impairment in their hypothetical child, and a slight majority said that they would use tDCS only if it increased their child's well-being. If these views also exist in parents considering DBS for OCD, the possibility of relief from severe OCD symptoms might likewise lead parents to perceive DBS treatment more positively. Respondents also expressed concern about the safety of tDCS. Notably, respondents who were parents expressed lower willingness to treat below-average capabilities in their hypothetical children than non-parent respondents, and parent respondents reported more concern about unnatural enhancement. This finding highlights the advantage of surveying parents when considering the implications of parental attitudes toward new treatments for adolescents.

A recent examination of 279 parents' perceptions of DBS for adolescents with one of five treatment-resistant neurological or psychological conditions (OCD, epilepsy, autism spectrum disorder, Rett syndrome, and Tourette syndrome) indicated that on average, parents found DBS for their hypothetical adolescent child with OCD to be reasonably acceptable (mean of 7.4 on a 0–10 scale) if the treatment outcome would improve “a little” or “greatly” (Storch et al. 2020). Parental attitudes toward DBS for OCD were positively associated with their comfort using antidepressant treatment for psychiatric/neurological symptoms but was not associated with comfort regarding other forms of treatment. Interestingly, the relative acceptability of DBS was lower for OCD than for the other disorders examined. In general, parents reported higher willingness to try DBS if they felt confident that it would improve their adolescent child's condition to a greater degree, if they could include their child in the decision-making process, and if they were previously familiar with DBS. Predictably, respondents' willingness to consider DBS decreased if they had concerns about the safety of the procedure.

Although these studies provide some indications of parents' attitudes toward neuromodulation, there is a need to further investigate specific factors affecting parents' perceptions of DBS for OCD in adolescents. Additionally, a notable limitation of both previous studies is that participants did not necessarily have personal experience with the disorder in question, such as having OCD themselves or being the parent of a child with OCD. In addition to evaluating perspectives of parents of children with OCD, the perspectives of adult patients with OCD could also be valuable in discussions about DBS for OCD in adolescents. Studies on psychological treatments that include patient input can provide useful perspectives on research questions, particularly for research into acceptability of the treatment and providing feedback about which angles to explore (Holmes et al. 2018). Patient and professionals' research priorities can also differ; in one study, clinicians favored research into the efficacy of psychotherapy and optimizing existing therapies, whereas patients were more concerned with the root causes of OCD, the course of the illness, and pharmacological approaches in addition to improving psychotherapy (Kuhne et al. 2019). When considering areas for further investigation concerning DBS treatment for OCD in adolescents, the perspectives of adults who have OCD themselves could provide valuable insights.

The present study aims to investigate current attitudes toward DBS for severe refractory adolescent OCD among (1) parents of children (of any current age) with a history of OCD and (2) adults with a history of OCD. We have three aims: (1) to assess perceptions of the acceptability of DBS for adolescents with severe treatment-refractory OCD; (2) to assess perceptions of DBS acceptability for adolescents with epilepsy to compare with perceptions of DBS for adolescents with OCD (this will allow us to use perceptions of DBS for epilepsy as a benchmark against which to measure perceptions of DBS for OCD) to shed light on whether lived experience of the disorder is associated with perceptions; (3) to understand what factors influence acceptability, willingness to consider DBS treatment, and reluctance to consider DBS treatment; and (4) to identify if respondent characteristics (such as OCD severity or personal OCD experience) are associated with acceptability ratings of DBS for OCD. We hypothesized that familiarity with DBS, a personal history of OCD, and OCD symptom severity of either personal OCD or the participant's child's OCD would be positively associated with increased willingness to consider DBS for the treatment of severe refractory OCD in adolescents. By exploring these questions, our goals were to (1) contribute to a greater understanding of whether family and patient stakeholders view DBS as an acceptable treatment for adolescents with severe refractory OCD and (2) illuminate factors affecting DBS perceptions that medical professionals should address when considering providing DBS as a treatment option for adolescent OCD.

Methods

Recruitment and procedure

This study was approved by the Baylor College of Medicine Institutional Review Board. We recruited participants at the 2019 International OCD Foundation (IOCDF) conference, through the IOCDF newsletter, via clinicians who specialize in OCD, and through various internet-based advertisements (including Facebook OCD groups, Twitter, advocacy websites, and online support groups). Participants were eligible for the present study if they were (1) 18 years of age or older, (2) fluent in English, and (3) had a self-reported OCD diagnosis or were the parent of a child (of any age) who had ever had OCD. All levels of participant OCD severity and treatment response status (i.e., responder, nonresponder) were accepted.

Responses were collected anonymously, either via printed packets of the survey battery or via an online Qualtrics survey link. Data were collected between July 2019 and February 2020 and included a total of 260 participants: 106 participants had a history of OCD, 123 were parents of a someone with OCD per parents' report, and 31 respondents fit both categories. The sample was majority female (90%) and White (90%), and 66% had a bachelor's degree or higher. See Table 1 for a summary of demographics.

Table 1.

Demographics

Gender, n (%)
Male	24 (9)
Female	233 (90)
Transgender male	2 (1)
Genderqueer	1 (<1)
Age, years
Range	18–65
M (SD)	38.6 (11.6)
Race, n (%)
White	233 (90)
Black or African American	6 (2.5)
Asian	12 (5)
Other	7 (3)
Missing	2 (1)
Hispanic/Latino/a, n (%)	12 (5)
Education, n (%)
Enrolled in high school	2 (1)
High school diploma/GED	13 (5)
Technical/vocational training	11 (4)
Associate's degree	12 (5)
Bachelor's degree	93 (36)
Postgraduate degree	79 (30)
Other	3 (1)
History of OCD (past or present), n (%; categories mutually exclusive)
Has a history OCD	106 (41)
Has a child with a history OCD	123 (47)
Has a history of OCD and a child with a history of OCD	31 (12)

GED, General Education Development; OCD, obsessive-compulsive disorder.

Survey

The survey was designed by the authors and was completed in ∼20 minutes.

Participant demographics and background

The first part of the survey covered inclusion criteria, participant demographics, attitudes toward various potential OCD treatments (including both comfort and satisfaction with medications, psychotherapy, electroconvulsive therapy [ECT], transcranial magnetic stimulation [TMS], alternative medicine, self-help, and residential care/hospitalization), participant's relevant psychiatric history, and existing knowledge of DBS (i.e., whether the participant had heard of DBS before) and familiarity with DBS (self-reported). After indicating whether they had heard of DBS and whether they had any familiarity with DBS, participants were provided with a description of DBS, which included what DBS is used for, the surgical procedure involved, a brief explanation of how the technology works to stimulate the brain and improve symptoms, the known risks, and a statement explaining that DBS has not yet been extensively tested in minors. Participants were not provided with a chance to ask questions about DBS or request more information about the treatment.

Child OCD treatment history

Parents who reported having a child of any age with OCD provided information about their child's treatment history (receipt of antidepressants, psychotherapy, alternative medicine, ECT, TMS, self-help, and residential/hospitalization) and their satisfaction with these treatments.

DBS acceptability

A DBS acceptability measure was included in the survey for both OCD in adolescents and epilepsy in adolescents. The DBS acceptability measure for both diagnoses was based on a survey from a previous DBS perceptions study (Storch et al. 2020) that also assessed parental attitudes toward DBS for adolescents with OCD and epilepsy, among other disorders. Our acceptability measure included an identical definition of DBS and identical short descriptions of an adolescent with severe treatment-resistant OCD and an adolescent with severe epilepsy. Following each description was a question assessing the participant's attitude toward the use of DBS to treat the disorder if the participant were the parent of an adolescent child like the one in the description, using an 11-point Likert scale that ranged from 0 (Totally unacceptable) to 10 (Totally acceptable).

DBS willingness and reluctance items

A series of statements assessing the respondent's willingness or reluctance to consider DBS for their child if their child had OCD was also provided; items were rated on a 0–4 Likert scale with the following response options: “Strongly disagree,” “Disagree,” “Neither agree nor disagree,” “Agree,” and “Strongly agree.” These willingness/reluctance statements included factors that would lead to willingness to consider DBS, as well as reservations about DBS. Fourteen items assessed perceptions of DBS for OCD, and five items assessed perceptions of DBS for epilepsy and mirrored the first five addressing OCD. The five epilepsy willingness/reluctance statements were identical to those examined in our previous study (Storch et al. 2020) for consistency, as were five of the OCD willingness/reluctance items; the rest of the OCD items were new for the present study. The order of the epilepsy and OCD cases was randomized.

Respondent OCD severity

Individuals who endorsed a personal history of OCD reported the severity of their OCD symptoms using section B of the Florida Obsessive-Compulsive Inventory (FOCI; Storch et al. 2007), both in the past 30 days and at their highest ever symptom level. The FOCI is a self-report measure designed to evaluate OCD symptoms (section A) and symptom severity (section B). Section B includes five questions concerning the severity of symptoms rated from 0 (None) to 4 (Extreme). The FOCI has shown good internal consistency (α = 0.89) and strong convergent validity with the gold-standard interviewer-administered Yale–Brown Obsessive-Compulsive Scale (Storch et al. 2007). Internal consistency in this sample was excellent (α = 93).

Child OCD severity

Parents who reported having a child of any age with OCD reported basic demographics for their child, then past 30-day and worst ever OCD symptom severity using section B of the Children's Florida Obsessive-Compulsive Inventory (C-FOCI), which is the child version of the FOCI (questions closely follow the FOCI format) and was adapted to a parent proxy report format (Storch et al. 2009). The C-FOCI has shown strong convergent and divergent validity as well as treatment sensitivity (Storch et al. 2009). Internal consistency in this sample was good (α = 88).

Respondent OCD history and DBS acceptability for own OCD

Participants who endorsed a personal history of OCD were asked to specify when their OCD began and for how many years they had experienced OCD. They then rated the acceptability of using DBS to treat their own OCD symptoms from 0 (Totally unacceptable) to 10 (Totally acceptable) and to report their general thoughts about using DBS for their own OCD.

Analytic plan

All participants who completed the study survey were included in the present data set. Some missing data were observed in the survey; ∼24% of the OCD DBS acceptability, willingness, and reluctance ratings were missing, and 29% of the epilepsy ratings were missing. Thirty-nine percent of participants eligible to complete the self-report FOCI did not complete it, as well as 27% of the C-FOCI data. Little's test for missing completely at random (MCAR) was nonsignificant [χ² (169) = 193.01, p = 0.10], suggesting that data were “MCAR” (Little and Rubin 2002). To account for missing data in all below analyses, multiple imputation with five imputed data sets was used, with reported coefficients and significance values pooled across the five data sets. Analyses including the C-FOCI and FOCI only included participants who indicated that they had a child with OCD or had OCD themselves, respectively. Descriptive analyses were presented based on complete information. All analyses were conducted with SPSS version 25.

First, DBS acceptability ratings were compared between OCD and epilepsy using a series of within-subjects t-tests comparing ratings on the overall 0–10 acceptability item, as well as all five willingness/reluctance items that were rated for both epilepsy and DBS. Next, descriptive information about acceptability of DBS was presented, including the mean and range of the acceptability items for OCD and epilepsy, as well as the frequencies of responses to each DBS willingness/reluctance item.

An exploratory factor analysis using a promax (oblique) rotation was then conducted to evaluate latent constructs within the items for the OCD DBS considerations items, with item retention criteria including (1) cross-loadings below 0.2 and (2) factor loading greater than 0.3 (Tabachnick and Fidell 2007). Subscales were derived using items that were identified in each factor and were used to evaluate variables associated with DBS perceptions. This study focused on factors associated with perceptions of DBS for OCD, and thus, this factor analysis was only conducted with OCD-specific items to generate subscales with which subsequent analyses would occur.

The next series of analyses evaluated factors associated with OCD DBS perceptions. First, correlations were conducted between DBS perceptions and OCD severity/treatment history ratings. These variables included the overall acceptability ratings and the factor analytically derived subscales as described above, OCD severity ratings and scales, including current and worst ever OCD severity (self- and/or parent-report ratings as applicable), self-reported comfort with different treatment modalities, and self-reported satisfaction with previous treatment modalities. Next, a series of independent samples t-tests was conducted to evaluate whether DBS perceptions varied based on self-reported knowledge of DBS. Participants rated whether they (1) had not heard of DBS, (2) had heard of DBS but were not familiar with it, or (3) were familiar with DBS. Two t-tests were performed, first comparing those who had versus those who had not heard of DBS, and second comparing those who rated themselves as familiar with those who had not. A t-test also compared DBS perceptions among those who had a bachelor's or postdoctorate degree with those who had less formal education. Finally, an analysis of variance (ANOVA) was conducted comparing DBS perception ratings among participants with a history of OCD, participants who had a child of any age with a history of OCD, or both.

Results

DBS acceptability in OCD versus epilepsy

Participants reported greater overall acceptability of DBS for epilepsy relative to OCD [M (SD)_epilepsy = 7.67 (2.05) and M (SD)_OCD = 6.69 (2.30), d = 0.49, p < 0.001]. They reported more willingness to try DBS if they could be assured of seizure reduction relative to OCD symptom reduction, either when asked about symptoms reducing “at least a little” (d = 0.29, p < 0.001) or “greatly” (d = 0.24, p < 0.001). Participants also reported greater safety concerns when prompted to think about OCD (d = −0.21, p = 0.021). See Table 2 for a summary of differences between DBS perceptions for epilepsy versus OCD, using the five epilepsy acceptability items that were consistent with our previous study (Storch et al. 2020).

Table 2.

Acceptability of Deep Brain Stimulation in Obsessive-Compulsive Disorder Versus Epilepsy

	OCD	Epilepsy	d	p
	M (SD)	M (SD)	d	p
I would be reluctant to consider DBS for my child's [OCD symptoms/seizures] because of possible safety concerns about the procedure^a	2.48 (1.05)	2.24 (1.10)	−0.21	0.021
If I were assured that my child's [OCD symptoms/seizures] would reduce at least a little, I would consider DBS^a	2.32 (1.02)	2.62 (0.86)	0.29	<0.001
If I were assured that my child's [OCD symptoms/seizures] would reduce greatly, I would consider DBS^a	3.23 (0.84)	3.42 (0.73)	0.24	<0.001
My willingness to consider DBS would be greater if my child had the capacity to make this decision for him/herself^a	2.85 (0.93)	2.85 (0.91)	0.006	0.94
I would continue using noninvasive treatments (e.g., therapy, medication) that my child was not responding well to, rather than use DBS^a	1.69 (0.91)	1.56 (0.89)	0.14	0.073

These items were preceded with the following prompt: “Please indicate how much you agree or disagree with the following statements, if you were the parent of a child with [OCD/epilepsy].” Possible responses included “Strongly disagree” (0), “Disagree” (1), “Neither agree nor disagree” (2), “Agree” (3), or “Strongly agree” (4).

DBS, deep brain stimulation; OCD, obsessive-compulsive disorder.

Acceptability of DBS for adolescent OCD

Analysis of the pattern of responses to the item inquiring about the overall perceived acceptability of DBS for severe, treatment-refractory adolescent OCD indicated a modal response of 8/10, with 63% rating the acceptability as at least 7/10. Fifteen percent of the sample rated the acceptability as “4” or lower, however, indicating that they felt it was at least somewhat unacceptable (i.e., more unacceptable than neutral). See Table 3 for a summary.

Table 3.

Frequencies of Acceptability Ratings of Deep Brain Stimulation for Severe, Refractory Adolescent Obsessive-Compulsive Disorder (n = 199)

	Endorsement frequency (%)
0—Totally unacceptable	7 (3.5)
1	4 (2.0)
2	7 (3.5)
3	7 (3.5)
4	5 (2.5)
5—Neutral	19 (9.5)
6	24 (12.1)
7	41 (20.6)
8	44 (22.1)
9	16 (8.0)
10—Totally acceptable	25 (12.6)

Exploratory factor analysis of DBS considerations

An exploratory factor analysis evaluated the structure of items assessing DBS considerations for adolescents with OCD. A two-factor solution retaining 11 of the original 14 items was generated, as 3 items were eliminated for having high cross-loading (less than 0.2 difference across factors) or having low loadings on either fact (below 0.3). Upon inspection of the remaining items, the first factor appeared to comprise items that inquired about considerations that would lead a respondent to be more willing to try DBS (e.g., “If I were assured that my child's [OCD symptoms/seizures] would reduce at least a little, I would consider DBS”), and the second factor included items that assessed reservations about DBS (e.g., “I would be reluctant to consider DBS for my child's OCD symptoms because of possible safety concerns about the procedure”). Items that comprised each factor were summed to generate “DBS Willingness” (5 items) and “DBS Reluctance” (6 items) scales and were used in the following analyses evaluating factors associated with perceptions of DBS for OCD. Each scale showed acceptable reliability, α = 0.79 and 0.76, respectively. (Please see the Supplementary Data S1 and Supplementary Table S1 for more details on the factor analysis and items included in the final scales.)

An item-level analysis of the ratings to the DBS willingness and reluctance items indicated that the following factors would lead to greatest willingness of DBS for OCD: if their child had suicidal ideation (83% agree or strongly agree), if they were assured their child's daily functioning would improve (77%), and if their symptoms would reduce greatly (67%). Most highly endorsed reservations included the potential detriment to their developing brain (86% agree or strongly agree), personality or functioning (70%), long-term effects to the body (60%), or potential safety concerns (59%). See Supplementary Table S2 for a summary.

Factors associated with DBS acceptability, willingness, and reluctance

Here, we define DBS acceptability as the rating on the single 11-point Likert item (0 = Totally unacceptable to 10 = Totally acceptable); DBS willingness as the sum of the five DBS willingness items; and DBS reluctance as the sum of the six DBS reluctance items. DBS acceptability and willingness were positively and significantly associated with comfort with antidepressants/psychoactive treatment, satisfaction with antidepressants/psychoactive treatment, comfort with TMS, comfort with residential/hospitalization treatment, and comfort with ECT. DBS reluctance was significantly and positively associated with comfort with psychotherapy, and significantly and negatively related to comfort with alternative medicine, self-help, and ECT. DBS acceptability variables were not significantly associated with the FOCI or C-FOCI. See Table 4 for a summary of correlation coefficients.

Table 4.

Correlations Between DBS Acceptability, Willingness to Try DBS, and DBS Reluctance with OCD Severity and Comfort with Other Treatments

	DBS acceptability	DBS willingness	DBS reluctance	C-FOCI-current	C-FOCI-worst ever	FOCI-current	FOCI-worst ever
OCD severity and DBS perceptions
DBS acceptability	—	0.61^***	−0.44^***	−0.11	−0.02	0.12	0.04
DBS willingness	0.61^***	—	−0.27^***	−0.10	−0.04	0.09	0.04
DBS reluctance	−0.44^***	−0.27^***	—	0.05	0.09	−0.07	0.01
	Antidepressants/psychoactive medication	Psychotherapy (e.g., CBT)	Alternative medicine (e.g., diets, herbs)	Electroconvulsive therapy	Transcranial magnetic stimulation	Self-help	Residential/hospitalization
Comfort with other treatments
DBS acceptability	0.27^***	0.04	−0.08	0.29^***	0.38^***	0.02	0.23^***
DBS willingness	0.18^**	<0.01	−0.12	0.18^**	0.28^***	−0.05	0.22^**
DBS reluctance	0.02	0.13^*	−0.26^***	−0.26^***	0.12	−0.13^*	0.02
Satisfaction with other treatments
DBS acceptability	0.20^*	0.069	−0.005	0.039	−0.016	−0.056	0.11
DBS willingness	0.16^*	0.078	−0.002	0.056	−0.041	−0.045	0.11
DBS reluctance	−0.095	−0.031	0.037	−0.039	0.019	0.041	−0.027

p < 0.05; ^** p < 0.01; ^*** p < 0.001.

CBT, cognitive behavioral therapy; C-FOCI, Children's Florida Obsessive-Compulsive Inventory; DBS, deep brain stimulation; FOCI, Florida Obsessive-Compulsive Inventory; OCD, obsessive-compulsive disorder.

Results suggested no significant differences between those who had and had not heard of DBS in terms of DBS acceptability [M (SD)₁ = 6.91 (2.34) and M (SD)₂ = 6.44 (2.24), t (258) = 1.51, d = 0.31, p = 0.13], DBS willingness [M (SD)₁ = 14.39 (3.19) and M (SD)₂ = 13.96 (3.10), t (258) = 1.08, d = 0.24, p = 0.28], and DBS reluctance [M (SD)₁ = 14.42 (3.77) and M (SD)₂ = 14.97 (3.42), t (258) = −1.10, d = −0.28, p = 0.27]. Significant differences were noted between those who rated themselves as familiar with DBS and those who did not (i.e., had heard of it but were unfamiliar or had not heard of it). Those who were familiar endorsed significantly less DBS reluctance [M (SD)₁ = 12.69 (4.65) and M (SD)₂ = 14.90 (3.42), t (258) = 2.79, d = 1.10, p = 0.006] and trended toward more DBS willingness with a medium–large effect size [M (SD)₁ = 15.36 (3.21) and M (SD)₂ = 14.06 (3.13), t (258) = −1.96, d = −0.73, p = 0.050]. No differences were noted in DBS acceptability between individuals who were and were not familiar with DBS [M (SD)₁ = 7.34 (2.62) and M (SD)₂ = 6.62 (2.26), t (258) = −1.47, d = −0.46, p = 14]. See Table 5 for a summary of DBS familiarity.

Table 5.

Deep Brain Stimulation Familiarity, n (%)

Never heard of DBS	122 (47)
Heard of DBS but unfamiliar	112 (43)
Familiar with DBS	26 (10)

DBS, deep brain stimulation.

Participants with a bachelor's or postgraduate degree rated DBS as significantly more acceptable than participants without a postsecondary degree [M (SD)₁ = 6.94 (2.13) and M (SD)₂ = 6.22 (2.56), t (258) = −2.22, d = −0.47, p = 0.027]. No significant differences were noted between those with and without a post-secondary degree for DBS willingness [M (SD)₁ = 14.46 (2.63) and M (SD)₂ = 13.65 (3.94), t (258) = −1.78, d = −0.44, p = 0.078] or DBS reluctance [M (SD)₁ = 14.62 (3.69) and M (SD)₂ = 14.78 (3.48), t (258) = 0.30, d = 0.078, p = 0.76].

The ANOVA evaluating DBS perceptions based on participant OCD history (had personal history of OCD, a child of any age with a history of OCD, or both) indicated that OCD status was not significantly related to DBS acceptability [F (2, 257) = 0.357, η_p ² = 0.0028, p = 0.70], DBS willingness [F (2, 257) = 0.180, η_p ² = 0.0014, p = 0.84], or DBS reluctance [F (2, 257) = 0.451, η_p ² = 0.0034, p = 0.64]. Accordingly, none of the individual group comparisons were significant.

Discussion

The present study examined attitudes toward DBS treatment for adolescents with severe refractory OCD among 260 participants belonging to two groups with lived experience of OCD: parents of children (of any age) with a history of OCD and adults with a history of OCD. Participants completed a questionnaire that explored their treatment history, relevant symptom severity, knowledge of DBS, and attitudes toward DBS using an acceptability scale and a selection of statements indicating levels of willingness or reluctance to consider DBS for adolescents with OCD and epilepsy. Participants demonstrated relatively positive perceptions of DBS for the treatment of severe OCD in adolescents overall, with 63% reporting at least 7/10 on an 11-point Likert scale of acceptability from “Totally unacceptable” to “Totally acceptable,” although 15% reported that they do not find DBS acceptable for OCD in adolescents to any degree.

Overall, participants found DBS to be a more acceptable as a treatment approach for epilepsy than for OCD in adolescents on the 11-point acceptability scale. On the items regarding symptom reduction (“If I were assured that my child's [OCD symptoms/seizures] would reduce greatly, I would consider DBS” and “If I were assured that my child's [OCD symptoms/seizures] would reduce at least a little, I would consider DBS”), participants also reported a higher inclination to consider DBS if they were assured of epilepsy symptom reduction relative to if they were assured of OCD symptom reduction; and when prompted to think about OCD before rating concerns about safety, participants reported greater disinclination to consider DBS than when they were prompted to think about the same concern regarding the epilepsy case. This finding is consistent with a previous study that examined 279 parents' perceptions of DBS for adolescents with five neurological disorders, including OCD and epilepsy (Storch et al. 2020), indicating that higher acceptability of DBS for epilepsy relative to OCD is not a function of familiarity with OCD (Table 5).

The reason for these perceptions regarding DBS for OCD treatment is unclear. It may be that participants view epilepsy as a purely medical disorder that should be treated through a medical model, while OCD might appear to be a disorder that is more psychological in nature and less amenable to DBS treatment. Participants may also see epilepsy as more severe than OCD. Alternatively, familiarity with non-DBS interventions for OCD may foster greater determination to persevere with familiar or nonsurgical treatments.

Participants' acceptability ratings for DBS for OCD found in the current sample [M (SD)_OCD = 6.69 (2.30)] were similar to those in Storch et al.'s (2020) study [M (SD)_OCD = 7.35 (3.32)]. The parents in this previous study did not necessarily have any personal experience of OCD (or the other four disorders assessed); thus, personal experience with OCD does not appear to substantially impact overall willingness to consider DBS given the vignette presented. OCD status (i.e., whether participants had a history of OCD themselves versus whether they had a child with OCD versus whether they fit both categories) also did not appear to be associated with DBS perceptions within the current sample.

Several factors were associated with greater willingness to consider DBS for OCD, including the presence of suicidal thoughts in the adolescent, assurances of improvements in daily functioning, and assurances of great symptom reduction. Concerns about safety, personality changes, and long-term effects on the body were associated with greater reluctance to consider DBS for OCD. The identification of these factors as particularly relevant to perceptions of DBS indicates that these variables should be monitored in potential clinical trials of DBS for adolescents—particularly variables that have the potential to be overlooked or that may be difficult to capture, such as personality changes or impact on development. Such factors are consistent with primary ethical issues around DBS that have been identified in the previous literature, such as concerns about side effects and weighing risks and benefits, especially in children where long-term effects and complications are unknown (Clausen 2010) (Table 5).

Notably, OCD symptom severity did not appear to be associated with DBS perceptions within the current sample, which was contrary to our expectations. Other unidentified considerations may be driving participants' views toward DBS; further research is needed to distinguish other factors that strongly affect willingness to consider DBS, and qualitative research may be helpful to uncover influential factors we have not considered.

Perceptions of DBS were associated with attitudes toward other types of treatment. Comfort with other medical treatments for OCD (including medication, transcranial magnet stimulation, and ECT) and residential care were significantly associated with participants' willingness to consider DBS and whether they found DBS to be an acceptable treatment; the findings on medication's association with DBS acceptability are also consistent with Storch et al.'s (2020) study. Lower comfort with alternative medicine, self-help, and ECT was significantly associated with greater reluctance to consider DBS. Interestingly, greater comfort with psychotherapy was associated with greater DBS reluctance as well; this finding may be due to the current sample populations' specific knowledge of OCD and the effectiveness of psychotherapy for this disorder (namely gold-standard CBT with exposure and response prevention), which has particularly good treatment outcomes even relative to therapy for other disorders (Carpenter et al. 2018). Satisfaction with past antidepressant treatment was significantly associated with greater DBS acceptability ratings and willingness to consider DBS, but satisfaction with other treatments was not associated with DBS perceptions.

Participants who rated themselves as having familiarity with DBS demonstrated increased willingness and significantly decreased reluctance to consider DBS, although knowledge of DBS (i.e., whether or not the participant had heard of DBS before) was not associated with higher ratings on the acceptability scale; this result is in contrast with Storch et al.'s (2020) study, which found an association between increased knowledge of DBS and acceptability in addition to the association between increased familiarity with DBS and acceptability. Again, this difference in findings may arise from the present sample's increased familiarity with OCD and OCD treatments in general, although more research is needed to elucidate possible reasons for this discrepancy. Those with a bachelor's degree or higher rated DBS as more acceptable in our sample, although formal education level did not seem to be related to how participants responded to the factors in the statements concerning willingness/reluctance to consider DBS.

There are several limitations to the current study. Our sample is largely homogeneous and almost entirely female and White, with a majority having a bachelor's degree or higher. These demographics are not representative of the entire population of adults with OCD or of parents who have a child with OCD; however, it may be closer to an accurate representation of the people who currently have access to specialty OCD treatment and resources. Parents of adolescents with OCD and adults with OCD who do not engage with OCD organizations or communities were not represented in the present sample, which limits interpretations of the results.

The participants in this study may also be more familiar with DBS than the general population since many of them were recruited from the 2019 IOCDF conference, which presented informational sessions on DBS for OCD. Similarly, participants in this study were recruited from sources where people very familiar with OCD would congregate (e.g., the IOCDF conference and website, the Peace of Mind Foundation website), making the results not necessarily generalizable to parents who have children with OCD but are not as engaged in the OCD community. Also, since the participants' familiarity with DBS was self-reported (i.e., participants' level of knowledge about DBS was not independently assessessed or measured), we cannot make any inferences regarding the nature of their understanding of DBS. Participants were also not provided with information about alternative treatments, as they likely would be in a real-world clinical setting, and their existing knowledge of alternative treatments was not measured.

Future research should explore the attitudes of a more diverse sample, both in terms of demographics and knowledge of DBS and OCD. The current sample included parents of children with a spectrum of OCD severity levels. Continued research into the attitudes of parents who have children with severe refractory OCD is therefore also needed, as their attitudes and experiences are vital for making decisions regarding DBS for adolescent OCD; in the current study, the subset of parents who had children with severe OCD was relatively small, and thus, attitudes specific to these participants could not be identified. The current study also included parents who had children with OCD regardless of the current age of the child (i.e., we did not restrict to parents of children who are currently adolescents). Further research could explore the perspectives of those parents specifically. It is also crucial that research be conducted examining the attitudes and experiences of adolescents with severe refractory OCD, so that their unique perspectives are valued and their role in medical decision-making is respected.

As noted above, several factors that we thought would be associated with DBS perceptions were not, such as OCD symptom severity and knowledge of DBS, which points to the need for further investigation into the factors contributing to DBS perceptions among parents of adolescents with severe OCD. We also highlight the need for further research to identify what factors are the strongest predictors of attitudes toward DBS for adolescent OCD, given the modest associations between overall willingness and other variables assessed in the current study. Since this field of research is in the very early stage, qualitative studies may be particularly valuable.

Conclusions

Participants in this study found DBS to be fairly acceptable for adolescents with severe and refractory OCD. Our findings highlight the importance of greater familiarity with DBS, the presence of suicidal thoughts in the adolescent, assurances of improvements in functioning, and extent of symptom reduction as factors associated with parental willingness to consider DBS for the treatment of severe refractory OCD in adolescents. Concerns about safety, personality changes, and long-term effects on the body were associated with the greatest reluctance to consider DBS for OCD. Future research should continue to explore which factors may be most relevant and important for parents and adolescents in decisions about treatment for severe refractory OCD. Understanding the unique perspectives of these individuals will be increasingly important as DBS moves closer to becoming an available treatment option for adolescents with severe refractory OCD.

Clinical Significance

Understanding the perspectives of parents, who are crucial medical decision-makers for their children, is important when considering whether DBS is a viable potential treatment for adolescents with severe and refractory OCD. The results of this study provide further indication that overall, parents do find DBS to be a fairly acceptable treatment option for severe treatment-resistent OCD symptoms in adolescents. Several factors were particularly associated with positive or negative perceptions of DBS for OCD; these include the presence of suicidal thoughts in the child, improvement in daily functioning, extent of symptom reduction, and concerns about safety, personality changes, and the long-term effects of DBS on the developing brain. These findings underscore the need to carefully monitor all these factors in any future pilot work on DBS for OCD. Our results also support the importance of increasing parents' familiarity with DBS and communicating the benefits and risks clearly.

Footnotes

Acknowledgments

We thank the study participants for their time, as well as the International OCD Foundation for administratively supporting this study. The contributions of Laura Torgerson, the Peace of Mind Foundation, and staff of the International OCD Foundation are gratefully acknowledged.

Disclaimer

The views expressed are those of the authors alone and do not necessarily reflect views of the National Institutes of Health (NIH), McLean OCD Institute Houston, or Baylor College of Medicine.

Disclosures

Dr. Storch receives research support from the NIH, International OCD Foundation, Greater Houston Community Foundation, Texas Higher Education Coordinating Board, and the Misophonia Research Fund. He has received royalties from Elsevier Publications, Springer Publications, American Psychological Association, Wiley, Inc., and Lawrence Erlbaum. Dr. Storch is on the Speaker's Bureau and Scientific Advisory Board for the International OCD Foundation. Dr. Schneider received grant funding from the Texas Higher Education Coordinating Board, the American Red Cross, and the Misophonia Research Fund. Dr. Sheth is a consultant for Boston Scientific, Medtronic, Koh Young, Theracle, and Zimmer. All other authors report no financial disclosures. We report no other potential conflicts of interest.

Supplementary Material

Supplementary Data

Supplementary Table S1

Supplementary Table S2

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