“Why would you open someone’s brain up?” Lived experience insights inform a psilocybin-assisted psychotherapy treatment manual for body image disturbance

doi:10.21203/rs.3.rs-3189970/v1

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“Why would you open someone’s brain up?” Lived experience insights inform a psilocybin-assisted psychotherapy treatment manual for body image disturbance

https://doi.org/10.21203/rs.3.rs-3189970/v1

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Background:

Body Image Disturbance (BID) is the distorted experience of one’s body. BID presents a risk for the onset, maintenance and relapse of body dysmorphic disorder and eating disorders, including anorexia nervosa (AN). Current treatments tend to focus on the cognitive and behavioural aspects while overlooking the perceptual symptoms and BID frequently persists beyond physical recovery. Psilocybin-assisted psychotherapy (PAP) may bridge the gap in current BID treatments by addressing perceptual and affective symptoms. This study sought to inform the development of a PAP treatment manual for BID in AN, through a co-design process informed by individuals with lived/living experience of AN.

Methods:

A Lived Experience Panel (LEAP) comprising six adult women who had a lived or living experience of AN and associated BID were presented with the proposed treatment protocol, including therapeutic interventions, and invited to provide feedback. An experiential, relativist framework informed reflexive thematic analysis of the LEAP data.

Results:

Reflexive thematic analysis of the LEAP data identified three central themes: enduring uncertainty; managing internal experience, and ambivalence in recovery. The LEAP also proposed strategies to address the challenges they identified and enhance the treatment manual more broadly.

Conclusions:

The LEAP identified challenges associated with intolerance of uncertainty, harm avoidance, alexithymia, and interoceptive impairment. The LEAP provided feedback that directly informed adaptations to the PAP treatment manual, including graduated interventions, the inclusion of nominated supports, and comprehensive psychoeducation for participants and their supports. Accordingly, a PAP treatment manual to treat BID for individuals with AN has been developed through lived experience co-design.

Anorexia Nervosa

Body Image Disturbance

Psilocybin-assisted psychotherapy

Lived Experience Advisory Panel

Co-design

Lived experience

Thematic analysis

Body Image Disturbance (BID) describes a person’s distorted experience of their body. BID presents a risk for the onset, maintenance and relapse of body dysmorphic disorder (BDD) and eating disorders, including anorexia nervosa (AN). Current treatments tend to focus on the cognitive and behavioural aspects of BID while overlooking the perceptual symptoms, and BID frequently persists beyond physical recovery. Psilocybin-assisted psychotherapy (PAP) may bridge the gap in current BID treatments by addressing perceptual and affective symptoms. This study sought to inform the development of a PAP treatment manual for BID in AN, through a co-design process informed by individuals with lived/living experience of AN. A Lived Experience Panel (LEAP) comprising six adult women with lived or living experience of AN and associated BID were presented with the proposed treatment protocol. Reflexive thematic analysis of the LEAP data identified three central themes: enduring uncertainty; managing internal experience, and ambivalence in recovery. The LEAP provided feedback that directly informed adaptations to the PAP treatment manual, including graduated interventions, the inclusion of nominated Supports, and psychoeducation for participants and supports. Accordingly, a PAP treatment manual to treat BID for individuals with AN has been developed through lived experience co-design.

Body image is the subjective evaluation that individuals hold regarding their appearance (1, 2). Though it presents as a physical evaluation, body image comprises cognitive, affective, perceptual and behavioural components (1). An individual's body image evolves through a complex interplay of sociocultural, biological and psychological factors that are shaped over time through our interactions with the world (3). Indeed, “each person’s body image is as unique as a fingerprint” (3).While many people’s experience of their body fluctuates over a lifetime, for some,it is a pernicious relationship that causes severe psychological and emotional distress withserious physical consequences. The term body image disturbance (BID) clinically captures this occurrence. BID, or the disturbance in the way one’s body weight or shape are experienced (4), is a hallmark feature of eating disorders, including anorexia nervosa (AN), bulimia nervosa (BN), and binge eating disorder, as well as body dysmorphic disorder (BDD) (5-7). BID is thought to contribute to the onset and maintenance of an eating disorder (8-11) and presents a significant risk for relapse (12) (13).

While BID can inflict anguish on everyone, it shows up in perhaps the most dangerous way for

people with AN, an eating disorder characterised by extreme food restriction, significant weight loss, and an intense fear of gaining weight. Worldwide, AN has the highest mortality rate of any mental illness alongside substance use disorders (14) (15) and individuals with AN are five times more likely to die than an age-matched peer without an eating disorder (16), typically due to malnutrition or suicide.

It is generally acknowledged that we require more effective treatments for individuals with AN.

For example, Family-Based Treatment (FBT) (17), which is arguably the gold standard treatment that we currently have for paediatric AN, currently cites a 50% remission rate (18). Treatment options and outcomes for adults with AN are less effective. In their comparison of three leading empirically-based treatments for adult AN - Specialist Supportive Clinical Management (SSCM) (19) (20), the Maudsley Model Anorexia Nervosa Treatment for Adults (MANTRA) (21), and Enhanced Cognitive Behavioural Therapy (CBT-E) (13), Byrne et al. (22) found that half of the 120 participants attained their healthy weight, while less than a third achieved remission at the 12 month follow-up. Even when physical health is restored, deeply entrenched BID often persists, presenting a dogged threat of relapse (23).

The adverse effects of BID are pervasive. In addition to being highly correlated with eating disorders and BDD, BID is also associated with distressing emotional sequelae, including shame (24), anxiety, and disgust (25), other mental health concerns, such as depression (26) and social anxiety (27) and behaviour that risks physical health (28) (29). Yet despite these adverse outcomes, BID remains a difficult condition to ameliorate. Ziser et al. (30) noted that the evidence-base on the efficacy of BID interventions for individuals with AN is limited, and it remains uncertain the degree to which specific BID interventions contribute over and above standard eating disorder protocols (30).

Eating disorder treatments vary in the degree to which they target BID. The aforementioned FBT prioritises weight recovery and the re-establishment of age-appropriate independent eating and development, but does not directly address body image (31). Other paradigms, such as Cognitive Behavioural Therapy for Eating Disorders (CBT-E ) (13), focus on the cognitive-behavioural aspects of BID (e.g. psychoeducation, monitoring and behavioural interventions) with promising results (e.g. (32)). However, treatments such as CBT-E do not address perceptual symptoms and, given the multidimensional nature of BID (33), researchers have called for interventions that address the perceptual elements (34-36). Regardless of the approach, BID frequently persists beyond physical recovery (37-39).

Alleva and her team (1) examined specific body image change techniques in an effort to identify which strategies within broader treatments were effective and why in targeting BID. Their meta-analysis, which included studies with clinical and non-clinical populations, found that of 62 identified change mechanisms, only 12 were associated with significantly positive effects on body image. These techniques included cognitive-behavioural strategies such as monitoring and restructuring of cognitions, modifying negative body language, psychoeducation on the causes and consequences of poor body image, and guided imagery, exposure, and size estimation exercises (1). The authors noted that these stand-alone interventions had a paucity of impact on internalisation of beauty ideals and social comparisons, and that the intervention effects appeared to diminish over time, although no studies provided a follow-up beyond three months (1). It appears clear that we require treatments that target the multidimensional aspects of BID to attain comprehensive and enduring improvements.

Psychedelic medicines have been used in indigenous cultures around the world for millennia as sacred and healing substances but the translation of this knowledge into western society has been a disrupted process (40) (41). After a period of political and social exile, there has been a resurgence of clinical exploration into psychedelics, otherwise known as hallucinogens, such as such as psilocybin, d-lysergic acid diethylamide (LSD), dimethyltryptamine (DMT), 3,4-methylenedioxymethamphetamine (MDMA), and ketamine. A burgeoning body of research suggests rapid and sustained anxiolytic and antidepressant effects after minimal exposure to psychedelic substances (e.g. one to three dosages) for conditions such as major depressive disorder, e.g. (42) (43); end-of-life distress, e.g. (44); post-traumatic stress disorder, e.g. (45); obsessive compulsive disorder, e.g. (46); and substance use disorder, e.g. (47).

Research on treating eating disorders with psychedelic substances dates back to 1959, with a single case report indicating that a woman experienced “definitive recovery” from an unspecified substance, although specific details on how recovery was assessed were not provided (48). More recently, Lafrance et al. (49) conducted a qualitative study with 16 men and women in various stages of recovery from AN or BN, who had engaged in ayahuasca ceremonies. Eleven of the 16 participants described decreases in symptoms, including reductions in eating disorder cognitions and compassionate shifts in body perception, leading to partial or complete self-reported recovery (49).

Psilocybin (the hallucinogenic molecule in “magic mushrooms”) is widely regarded to have the lowest medical and psychiatric risk profile of the classic psychedelic drugs (50) (51) and there is rapidly increasing interest in psilocybin’s potential utility to treat AN. Currently, a number of Phase 2 trials are being conducted internationally (e.g. clinicaltrial.gov identifiers NCT04505189; NCT04661514; and anzctr.org.au identifier ACTRN12623000357651).

Psilocybin-assisted psychotherapy may be well suited to bridge the gap between current body image strategies, which typically target the cognitive and behavioural components of BID, while the perceptual aspects are rarely or inadequately addressed (52) (34). Psilocybin has been reported to facilitate an embodied experience (53). At a fundamental level, embodiment describes the experience of inhabiting one’s body in a way that allows attunement with the internal (physiological, emotional, and cognitive) aspects of self as they interact with the physical environment (American Psychological Association, 2015), although Cook-Cottone (54) extends and sharpens the concept of embodiment to include the interpersonal, social, cultural, and existential experience.

Some preliminary research provides accounts of how psilocybin may function at a perceptual level. For example, in a qualitative study of 13 adults who received psilocybin-assisted psychotherapy to treat clinical anxiety associated with advanced cancer, many participants reported profound somatic experiences of psilocybin working with their body or altering their embodied relationship with the illness, including enhanced interoception and bodily self-acceptance (53).

Although theoretical at this stage, it has been proposed that individuals with eating disorders and associated BID may be locked into distorted perceptions of their body due to predictive coding difficulties (55). This hypothesis suggests that those with BID are unable to update and integrate bottom-up, multisensory perceptual processing, in part due to over-prioritised and rigidly held higher-order body image beliefs (36) (55). Ledwos et al. (56) argue that classic psychedelics, in combination with psychotherapy, might allow more flexibility to top-down prior beliefs which will in turn permit increased perceptual input, thereby creating opportunities for body image “recalibration”.

Psilocybin might also go some way to address the characteristic emotional and experiential avoidance that individuals with BID engender as they seek to protect themselves from their internal harsh criticism, or the perceived judgement of others around their appearance (57). Indeed, several studies have documented that those who are recovered or in the process of recovering from AN experience significantly higher internal shame (derived from self-condemnation), body shame, and external shame (perceiving negative judgement from others) than healthy controls (58) (59).

Experiential avoidance has been strongly associated with AN (60-63), particularly when there is apprehension that the situation will elicit challenging emotions (63). This emotional avoidance appears to translate into interpersonal avoidance, as individuals both recovered and partially recovered from AN are reported to have smaller social networks and lower frequency of social contact (64), and greater social anhedonia - the decreased drive to experience pleasure from social contact (65). Experiential avoidance may be considered a key maintaining factor of AN and associated BID (21).

Psilocybin may directly address this maintaining factor, having been found to decrease emotional avoidance of challenging emotions and facilitate a greater level of experiential acceptance (66). Psilocybin may further diminish avoidance through its noted effect of fostering a sense of connectedness with self and others (66).

To our knowledge there is no research investigating psilocybin-psychotherapy as a potential treatment option specifically to address BID. The clinical application may have broad implications, as BID is a transdiagnostic symptom that impacts a spectrum of eating disorders, as well as BDD. Furthermore, as noted earlier, BID often persists after the physical symptoms of AN have remitted, leading to both ongoing dysfunction and a significant risk factor for relapse. Consequently, a specific treatment for BID might allow for more profound recovery.

The current study sought to inform the development of a PAP treatment manual for BID in AN through a co-design process informed by individuals with lived/living experience of AN. More specifically, the study aimed to explore what adult women with a lived or living history of AN and associated BID: 1) perceive as concerns or barriers to a PAP treatment for BID; 2) consider helpful or hindering regarding the proposed PAP body image interventions; and 3) view as requirements to address the concerns identified by the panel to develop a feasible, beneficial and safe treatment manual and broader protocol.

This study was granted ethics approval from Swinburne University Human Research Ethics Committee. All lived experience advisory panel (LEAP) members provided written informed consent for their data to be used for research, and were reimbursed for their time and expertise.

Design:

A vital objective of the current project was to ensure that the PAP for BID treatment manual and overarching protocol were informed by lived experience and developed through co-design. Co-design refers to the “design of an initiative that positions participants’ needs, expertise and knowledge at its centre” (67). Fundamental to co–design is the belief that, when done well, collaboratively sharing power and knowledge can lead to better outcomes for all parties, including improvements in project relevance, quality and feasibility at each stage of the research process (68).

The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF; (69), which aims to ensure transparency and consistency of patient and public involvement (PPI) in research, was employed to delineate the method used, and the results and conclusions drawn from the panel’s contributions to the project, as well as reflections on the LEAP process as a whole.

The co-design process comprised a two-pronged approach. In the first (preliminary) stage, a comprehensive review of existing body image interventions was undertaken by CF, a clinical psychologist, and appraised by the SR, a professor of neuropsychology and AP, a research psychologist/neuroscientist, to examine intervention efficacy. The summary of interventions was then evaluated by i) OS, a certified eating disorder recovery coach with a lived experience of AN, who considered feasibility and acceptability from a lived experience lens; and ii) AR, an experienced psychedelic psychotherapy clinician and researcher, who assessed the interventions and their theorised compatibility with the effects of psilocybin.

In the second stage, a Lived Experience Panel (LEAP) session was conducted with six adult women who had a lived or living experience of AN and associated BID. LEAP members were asked to prepare for the session by reading some background information that was sent to them, which included a brief overview of psilocybin-assisted psychotherapy, and questions that would be asked during the LEAP.

The LEAP session was a two-hour, online session, co-facilitated by the CF, AR, and OS. The LEAP was provided with a presentation on the proposed study protocol, including the participant demographic (adult women with a living experience of Anorexia Nervosa who are physically recovered and weight-restored but continue to experience significant BID symptoms); the process of PAP (preparation, dosing, and integration); and the proposed body image interventions. LEAP members were invited to ask questions, share their opinions, and provide feedback on the material that had been presented.

Three body image interventions (conceived for the preparation and integration stages of the treatment) were presented. The first was a body image assessment that drew upon the work of Cash (3), guiding participants to deconstruct the socio-cultural, interpersonal (including trauma), physiological and temperamental factors that have contributed to their body image narrative over time, with the intent of increasing flexibility within that narrative. The second was a body scan, modified for BID, designed to build tolerance of somatic sensation and introduce grounding strategies to support participants in this process, in preparation for the psilocybin sessions. The third proposed BID intervention was a therapeutic letter writing activity aimed to foster compassion and facilitate care-taking attitudes and behaviour.

Questions that focused on the psilocybin-assisted psychotherapy protocol included: “What are your thoughts regarding the physical experience of psilocybin?”; and “What are your thoughts regarding the safety of psilocybin?”. Questions about the proposed body image interventions included: “What might be challenging or a barrier to engagement (regarding the body image interventions)?”; and “What might be positive or helpful about these interventions?” (see supplementary materials for full details).

Participants were invited to contact the CF for a follow-up conversation, either online or via email, if they had further thoughts, allowing the participant an opportunity to engage individually and share sensitive feedback or insights if they wished. Following the LEAP session, members were sent a summary document which outlined pivotal themes and the implications for how their feedback would inform treatment manual development. The LEAP was invited to respond to this document if they wished to contribute further commentary, insights or questions. Finally, each component of the manual was reviewed and modified based on feedback from the OS to ensure that the final manual was grounded in lived experience.

Sample:

The LEAP members were recruited through a mailing list compiled for individuals who had previously expressed interest in participating in LEAPs. The panel comprised six women aged between 23 and 50 years (M = 33.24; SD = 11.91) with current or past AN. Half of the participants self-identified as both medically and psychologically recovered (e.g. no or little BID). Of the remaining three participants, two self-identified as physically recovered but with residual BID, and one participant self-identified as medically stable, but with enduring physical and psychological symptoms of AN.

Data Analysis:

An experiential, relativist framework informed a reflexive thematic analysis (70) (71) of the LEAP data. The authors were compelled to acknowledge their situated multiplicity of roles within this study as clinicians, researchers, facilitators of the LEAP and individuals holding their own lived experience. It was imperative to consider how these various perspectives were inextricably interwoven into the process of the content presented to the LEAP, the relationship between the panel members and panel facilitators, and follow-up comments or questions from the facilitators that inevitably directed subsequent discussion.

The LEAP data was analysed by engaging an inductive orientation, in accordance with the phases of thematic analysis outlined by (72). The LEAP session was transcribed and its content processed through a practice of recursive reading and reflection. Data was initially coded by CF at a semantic level (to provide a summary for the panel) before being recoded to capture latent content; AP and SR then reviewed this in a collaborative coding process. Coding was collated to assemble 22 themes which were then refined to three key themes through a process of establishing that each theme was both clearly defined, and responsive to the overarching research questions and objectives.

Using reflexive thematic analysis, the authors identified three central latent themes which are described here as: enduring uncertainty; managing internal experience, and ambivalence in recovery. The LEAP also proposed strategies to address the challenges they identified and enhance the treatment manual and protocol more broadly, and this is also outlined below.

Enduring Uncertainty

A dominant concern for the LEAP was the element of uncertainty inherent in undertaking psilocybin-assisted psychotherapy. As one LEAP member asked, “Why would you open someone’s brain up? Because for me, that just sounds really scary.”

The panel expressed anxiety about the lack of predictability around the content that might emerge in a psilocybin dosing session, and articulated a fear that whatever content emerged had the potential to cause harm for that individual by triggering or revealing other symptoms, conditions, or trauma:

... I think it needs to be made aware that … even though this is what you’re targeting, it has the potential to bring up other things … and I think that’s really important that people know that because it could be very off-putting and could really derail the whole process if it’s not known and if it comes up as a surprise and they’re not prepared for that - that might not go down well.

The panel drew clear links between the temperamental traits (such as harm avoidance, e.g. Kaye et al., 2009) and subsequent drive for certainty that typifies AN, and the lack of predictability and control in a psilocybin dosing experience.

I think what it boils down to … is eating disorders are characterised by such an intolerance for uncertainty and high levels of anxiety…

Managing internal experience:

A related issue - but one deserving its own attention - was apprehension about the potential internal experience, both interoceptive and affective.

LEAP members were wary of the proposed modified body scan. Several LEAP members drew upon previous treatment experiences, noting they had found the body scan evoked overwhelming sensory, affective and cognitive effects that exacerbated rather than relieved their BID.

I also found it (the body scan) overwhelming in the past and I felt like, yeah, it just kind of triggered it and then, like, I would often, like, stop it early as well, because, like, I wouldn’t be able to get through the whole thing.

Alongside the sensory experience, there was recurring perturbation amongst the panel about the possible intensity of emotional experience that might occur during the psilocybin dosing.

From my experience and the types of therapies that I’ve done … that level of distress that you experience even in therapy sometimes actually ends up fuelling the experience of an eating disorder way more and it becomes far more effective as an eating disorder than the actual treatment…

LEAP members noted that the threshold of emotional tolerance would vary between individual participants. They worried that, for some participants, the affective intensity might overpower their capacities and lead to a heightening of BID, or other aversive outcomes.

Other panellists noted a discomfort with taking a substance that inhibited their bodily and cognitive control, albeit temporarily:

I was severely ill for many years and wouldn't even take antidepressants or anxiety meds. To this day, I probably wouldn't sign up for something like this. I get drunk with half a glass of wine and hate that feeling …My body really reacts and I just don't like drugs that interfere with my thinking or feelings.

From a pragmatic perspective, panellists questioned the impact that an intensive (e.g. 6–8 hour) intervention like psilocybin dosing would have on routines that were considered vital for maintaining physical recovery from AN, such as dietary intake and movement.

...often just missing one meal could re trigger ED thoughts for me. Even being fully recovered for 15 years, if I miss a meal, like if I'm sick, my thoughts struggle…

Ambivalence in recovery

The panel explored the intrinsic ambivalence of seeking recovery from ego-syntonic symptomatology such as BID, and the subsequent implications for treatment engagement, discontinuation, and therapy outcomes.

In regards to barriers, for some people, if they … aren't ready for complete recovery, they simply might not want to let go of their negative body image, as it may be the one thing that will help them lose weight again if they so decide.

...there is that tug of war of wanting to be free but not wanting to be free of the disorder.

The panel highlighted the importance of the individual being in a stage of readiness to engage with treatment, and indicated that there were both psychological and physical considerations that were particularly pertinent to body image treatment:

I think it's really good that this is being offered once someone is a healthy weight, for I personally would have had different thoughts and feelings around my body at different phases of the disorder and recovery. And I think that body image work, for me, would have been most helpful once I returned to my natural weight, the weight that I had to learn to live with.

There was shared contemplation amongst the panel on the need to connect with a sense of purpose or personal values to overcome the anxiety of both the treatment process and the prospect of shedding BID. For example, one panel member, in hearing about the potential for psilocybin to facilitate a period of increased mental flexibility and creativity, responded:

That’s really nice and I think you need to explain that because that really … I won’t say it gets rid of the fears but you can kind of see beyond them. …. Can I challenge my fears enough to have something like that because that just sounds … oh my gosh, I want that (laughs).

LEAP members recalled their own experiences of treatment disengagement to underline the high treatment attrition rate for AN, in particular. Some members expressed doubt that an outpatient treatment could provide adequate support for participants after and between dosing sessions. They pointed to the difficulty accessing general practitioners, psychologists, and other health professionals, and queried whether the integration therapy sessions allocated in the protocol were sufficient to hold a participant who might have an intense experience. Panellists wondered whether this might diminish a participant’s capacity to persist with the treatment, and they worried about the psychiatric risk to a participant who might withdraw from the treatment protocol prematurely.

LEAP suggestions for manual improvement

From the panel session, the LEAP identified three key factors to address the concerns that had been raised, and to strengthen the treatment manual. These factors were: (i) graduated processes; (ii) comprehensive psychoeducation; and (iii) nominated support involvement (“Support”).

(i) Graduated processes:

To prepare a participant cohort characterised by intolerance of uncertainty for an unpredictable experience, the LEAP emphasised the value of providing participants with graduated exposure to the therapy interventions wherever possible. For example, several panel members advocated for a low-dose initiation to psilocybin to scaffold the experience, acknowledging that although this would not mimic or achieve the substance effects or therapeutic outcomes, it might reduce some of the unknown elements, thereby increasing participant confidence:

So … yes, you can have all this information but the actual experience of feeling … what’s it going to be like… which is why the lower dose might be nice - even if it doesn’t have the same therapeutic effect, just to experience what that’s like.

Similarly, panel members suggested that ensuring the body scan intervention was a stepped process could mitigate against participants being overwhelmed by their interoceptive, affective and cognitive experience.

Several panellists endorsed a proposed body image intervention for its potential to prime participants in revisiting historical events and memories, as they understood might occur during the psilocybin dosing. The panellists explained that the exercise (which guides participants to reflect upon their relationship with their body, dating back to early childhood, through the lens of sociocultural, interpersonal, trauma, physical characteristics, and personality traits) felt in some way like an inoculation to the uncertainty of whatever memories might emerge from the psilocybin.

“... one of the things I’ve been thinking about is that a lot of us will probably have … layers, so whatever kind of things it started as concerns for us have … you know, changed and developed over time but they still come back to that very … I suppose, infantile thinking that started it all … whatever this disturbance thing is. So I find that would be really interesting because it would help you break those layers down with a little bit of extra insight … into what might come up later on. And I think that might address some of the fears that we have”.

(ii) Comprehensive Psychoeducation

There was strong consensus within the LEAP that comprehensive psychoeducation would be vital to alleviate anxiety, particularly around issues such as medical and psychiatric risk. The panellists recommended that the nominated support person for the participant also receive comprehensive psychoeducation. The importance of having written materials for both the participant and their Support which allowed both parties to retrieve information as required, as well as the importance of being able to contact someone readily throughout the trial when there were questions or concerns, was also noted.

(iii) Support Involvement:

Including a participant-nominated support person in the treatment - including preparation and integration for the Support - is a key aspect of the protocol and treatment manual. There was a diverse reaction to this proposal. Some panel members reported that the Support inclusion made the psilocybin-assisted psychotherapy feel more possible for them to participate, remain engaged, and endure any challenges that might arise in the process. Other participants suggested that the inclusion criteria of engaging a Support person would deter them from considering the treatment:

I would not have liked any family or friends offering support, it feels too personal and vulnerable… personally I just like to do things on my own.

Through their prism of lived experience with AN and associated BID, the LEAP identified and articulated specific challenges and considerations when contemplating a PAP treatment that would be sensitive and responsive to this clinical cohort.

A key theme identified by the panel was that PAP, a treatment uniquely defined by the unpredictable experience it generates, presents a significant challenge to individuals with a history of AN and current BID. While facing novel or unknown situations may be widely considered an anxiety-provoking circumstance, it is perhaps particularly so for this cohort.

There is a growing body of research indicating that individuals with AN and BID have a greater degree of intolerance of uncertainty (IU) than individuals without these conditions (73–76). IU denotes the tendency to perceive ambiguous stimuli as potentially negative or threatening (77) (78) and to underestimate one’s capacity to cope with the perceived threat (79). IU prompts efforts to impose a sense of management and order through ritualistic behaviour, anxious rumination and obsessions, and other means of cognitive, behavioural, and affective avoidance (80) (81).

IU has been found to positively correlate with body dissatisfaction and a drive for thinness in individuals with AN (76). IU is also positively associated with harm avoidance (82), a trait that encompasses anxiety, cognitive inflexibility and inhibition (83). Harm avoidance is thought to exist premorbidly and has been found to persist beyond recovery from AN (84). So far, the few studies that have investigated IU in individuals recovered from AN (73, 85) have indicated mixed results as to whether IU decreases or persists, highlighting questions around the role IU plays in the aetiology of AN and at what stage of recovery (e.g. physical weight restoration, cessation of psychological symptoms) IU remits - if at all (74). However, given the proposed participant cohort will be partially recovered (that is, weight restored but with persistent symptoms of BID), it is conceivable that their perspective of a novel psilocybin experience will be influenced by IU - an over-estimation of the potential pitfalls of engaging in this treatment, an underestimation of their capacity to manage, and an instinct to avoid the experience.

IU may also play a role in the LEAP’s concern about the embodied experience of PAP, with the prediction that future participants might underestimate their coping capacity and apprehend being overwhelmed by the sensory and emotional experience of both the modified body scan, and the embodied psilocybin experience. IU has been positively associated with alexithymia, a difficulty identifying, distinguishing between, and expressing emotions and their felt sense (86). Levels of both IU and alexithymia have been found to be significantly greater in individuals with AN (87) (88) - including individuals who have recovered from AN (89) - than healthy controls. It seems reasonable to infer that individuals who have trouble understanding their emotional state may lack confidence in their ability to prepare for and manage emotions when they occur.

People with AN have been found to hold a range of negative beliefs about experiencing or expressing emotion (90) which might further contribute to a sense of mistrust when anticipating the experience of intense emotions. These beliefs may be underpinned by the self-reports that individuals with AN perceive themselves to have less access to helpful emotion regulation strategies, and therefore struggle modulating their emotion more than those without AN (90). Given these challenges, it is perhaps not surprising that individuals with AN have a tendency to avoid situations they predict will elicit their emotional response (91) (92).

The psilocybin experience and the modified body scan might both fall into the category of situations to be avoided due to the potential emotional consequence. Additionally, the panel’s unease for future participants regarding the projected embodied sensations may in part be explained by impaired interoception (93).

Interoception refers to the homeostatic bodily process of perceiving and regulating internal stimuli, such as hunger, satiety, pain, temperature, muscle tension and sensations such as itching, amongst other internal states (94). While interoceptive deficits are highly correlated across the diagnostic spectrum of eating disorders, they are most significantly associated with AN and BN (94), and interoceptive impairment appears to endure beyond recovery (90).

Phillipou et al. (93) explored the levels of interoceptive awareness in adult women at various stages of AN illness, as well as biological sisters of those with AN. Perhaps somewhat counter-intuitively, weight-restored individuals with AN and their sisters showed increased interoceptive awareness (and those with a current AN diagnosis - e.g. not weight restored showed a trend in this direction) compared to healthy controls, suggesting that increased sensitivity to body sensations might be a trait factor in AN (93). Furthermore, the study found that body trust (being able to experience one’s body as safe and trustworthy) was significantly lower in those with AN and first-degree relatives, relative to healthy controls (93). Taken together, these findings of altered interoceptive awareness might further explain the LEAP panel’s apprehension regarding the somatic aspects of the psilocybin and body scan for a cohort that are already acutely sensitive to physical sensations and lack trust in their body to safely contain the experience.

It should be acknowledged that some of the issues outlined here are not unique to AN and associated BID. For example, IU has been identified as a transdiagnostic construct that underpins a range of mental health conditions, including generalised anxiety disorder, social anxiety disorder, obsessive compulsive disorder, and major depressive disorder - all of which have been, or are in the process of being trialled with PAP, e.g. (42, 46, 95). However, AN and BID carry the additional challenge of being ego-syntonic conditions - that is, for an individual with AN and BID, their symptoms are in many ways cohesive with their needs and goals and as such, often feel protective. Accordingly, the ego-syntonic nature of these conditions contributes to low treatment engagement (96, 97). Adding complexity, there is overt sociocultural validation of the thin ideal (amid the clamour of messages regarding acceptable and privileged bodies) which cultivates and perpetuates BID, thereby undermining an individual’s effort to overcome these conditions.

Taken together, the factors of IU, harm avoidance, alexithymia, and interoceptive impairments, coupled with the ego-syntonic symptoms and cultural endorsement of BID cannot be ignored when considering a PAP treatment for this clinical presentation. It is perhaps slightly paradoxical that the PAP treatment itself is hypothesised to address some of these difficulties. However, the challenge remains: how to prepare a treatment intervention that supports the potential participant to overcome some of these obstacles? The LEAP provided insightful feedback that not only highlighted these concerns, but also identified some strategies to manage them. Their contribution has directly informed adaptations to the treatment manual. While the panel’s observations contributed to many aspects of the treatment manual, some key evolutions of the manual interventions and processes that align directly to the discussion in this paper are outlined below.

Graduated processes to reduce uncertainty

The treatment manual has been developed specifically to address IU through graduated interventions that aim to provide a sense of increased predictability and stepped exposure to the experience. A crucial example is that LEAP feedback led to the adaptation of the treatment protocol to include an additional, low-dose session (e.g. 3mg), designed to offer participants a comprehensive “dry run” of the psilocybin dosing experience. While it is acknowledged that a low dose will not replicate the perceptual experience of a high dose, it is anticipated that a low-dose session will provide contextual data about the dosing experience such as the physical environment and the process of the dosing session. A study by (98) indicated that even a low-dose of 1 to 3 mg might evoke a physiological and psychological response (such as elevated heart rate and physical and psychological “discomfort”), which could help participants prepare for the interoceptive experience, practice grounding strategies introduced in the treatment, and build rapport and trust with their psilocybin guides or co-therapists.

Another example of a graduated process in the manual was the evolution of the modified body scan. The body scan was originally developed as an individually titrated body scan within a trauma-informed framework, allowing for the understanding that a practice anchored in the body would quite likely provoke distress and discomfort for those with BID. The LEAP discussion around this technique led to further adaptations, including a technique of pendulation (Levine (99) which involves a process of oscillating between ranges of tolerance to modulate somatic and psychological experience.

Support Inclusion

While there were some conflicting views from the LEAP regarding the inclusion of a nominated support person in the protocol, many of the panel members highlighted the important role that Supports had played in their ability to engage in treatment, overcome treatment challenges, and consolidate therapeutic outcomes after treatment. Significantly, in terms of IU, panel members noted that having their Support included and informed in the process would increase their sense of trust in the process. Accordingly, the treatment protocol and manual has been expanded to include a preparatory session and two integration sessions specifically designed for Supports. These sessions aim to demystify the process, minimise systemic barriers, offer Supports strategies to assist their loved one with the recovery efforts, and augment the strengths of a trusted, nominated companion (ie. parent, partner, friend, relation, etc.).

Comprehensive psychoeducation and information:

The LEAP unanimously highlighted the importance of providing comprehensive psychoeducation and information around practical aspects (such as individual meal planning on dosing day, for example) to both the participant and their Support in as many accessible formats as possible, to enhance predictability, and a sense of preparedness and trust in the process. The treatment manual includes a psychoeducation/information session and a psychoeducation/information booklet specifically designed for participants, and another version specifically designed for Supports, as well as psychoeducation for care team members external to the study.

The LEAP were positive about contributing to the project, with some sharing that experience had been a “healing process” that allowed their voice to be heard, while others saw the panel as an opportunity to participate in a mutually reciprocal arrangement of developing and improving treatments.

Limitations

A significant limitation of this study was the lack of diversity within the LEAP. The intention was to seek review and feedback from adult females with a history of complete or partial recovery from AN and BID. However, the small panel lacked a diversity of cultural and gender representation which undoubtedly restricts the breadth and depth of discussion. For example, a more diverse and inclusive LEAP might have elicited commentary regarding how considerations such as race, social trauma, gender norms and variance, and spirituality might interact with the manual content and the protocol more broadly. This treatment manual - and future PAP interventions - will benefit greatly from a diverse range of voices and experiences offering critique, insights and feedback.

Another potential limitation was the fact that the panel were asked to provide feedback on the manual content directly to the manual authors, which may have influenced how panel members responded and the feedback they provided. Ensuring that LEAPs and other invitations for lived experience feedback are coordinated by impartial facilitators might foster more robust and open review. Additionally, the group context may have inhibited personal insights. Although the facilitators offered an opportunity for individual follow-up (and one participant did engage this way), participants did need to reach out independently which could have reduced the propensity for the LEAP members to take up this option.

As PAP has emerged through a rebirth of sorts in western society and may be approximating an “adolescence”, there has been exponential growth in research and treatment development for a myriad of mental (and physiological) health conditions. Embracing co-design and lived experience expertise provides an opportunity to ensure that this PAP treatment remains rooted in the embodied wisdom of those who have grappled with the challenges of BID; those who have sought, engaged, and withdrawn from treatments; those who have found freedom from their BID, and those who remain enmeshed for now.

In the current study, the LEAP generously harvested their own personal experiences to highlight some of the complexities of developing a PAP treatment for BID. These included the importance of supporting heightened anxiety when faced with uncertainty, difficult emotions, and somatic sensations, as well as acknowledging the challenging ambivalence of an ego-syntonic condition that is heavily validated by society at large. Their insights have enriched our work and we hope that this will translate to a treatment that is not only more attuned, sensitive and responsive to the complexities and nuances of BID, but also allows individuals to experience recovery - whatever that means to them - and embody a true sense of self.

Ethics approval and consent to participate

This study was approved by the Swinburne University Human Research Ethics Committee. All participants provided written informed consent.

Availability of data and materials

Data is available from the corresponding author upon reasonable request.

Competing interests

The authors report no competing interests in relation to this work.

Funding

This project was supported by the Australian Government National Leadership in Mental Health Program – National Eating Disorder Research Centre and NSW Health (Grant ID: P051002-4GOTT7NX). SR holds a Senior National Health and Medical Research Council (NHMRC) Fellowship (GNT1154651).

Authors' contributions

CF, OS, and AR co-facilitated the LEAP; CF analysed the data and wrote the first draft of the manuscript. All authors contributed to the final manuscript.

Acknowledgements

The authors would like to thank the LEAP members for their contributions to this study. The authors also would like to thank Jennifer Danby and Dr Margaret Ross, who provided wise counsel throughout the process. Finally, the authors also wish to acknowledge the Australian Eating Disorders Research and Translation Centre for their support via the IgnitED Grant - Australian Government National Leadership in Mental Health Program – National Eating Disorder Research Centre and NSW Health (Grant ID: P051002-4GOTT7NX)

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No competing interests reported.

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“Why would you open someone’s brain up?” Lived experience insights inform a psilocybin-assisted psychotherapy treatment manual for body image disturbance

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