“Don’t talk to me like I am an illness”: exploring patients’ needs using the communication passport in an eating disorder service

Anorexia nervosa (AN) is a complex illness characterised by profound socio-emotional and interpersonal difficulties [34]. Individuals with AN often exhibit attentional bias towards negative social signals [6, 11], struggle to accurately interpret the intentions and emotions of others [26], and encounter difficulties in expressing and articulating their own emotions [36]. Additionally, they may face challenges in cognitive perspective-taking or theory of mind [32]. Research suggests that social phobia and anxiety are common precursors to the development of eating disorders (EDs) and can increase vulnerability [8]. These social challenges persist into the acute phase of the illness [38] and may endure throughout the recovery process [25].

Autism, a neurodevelopmental condition characterised by challenges in social communication, sensory sensitivities, and repetitive behaviours and interests [3], often coexists with AN [37]. Autistic people often struggle with difficulties in various social aspects, including eye contact and facial information processing [28], joint attention [7], and social information processing [1]. Recent research highlights the overlap between autism and AN, leading to poorer psychological outcomes, social and flexibility problems, and worse treatment response in individuals with both conditions [14, 16, 20, 24, 29, 37].

Recent qualitative studies have shed light on the specific challenges encountered in providing support for individuals with co-occurring AN and autism within clinical settings, particularly due to their social communication difficulties. Kinnaird and colleagues [15] interviewed clinicians to explore their experiences working with individuals who have both AN and autism. The findings highlighted that communication problems made establishing therapeutic rapport more difficult, and clinicians had to adjust their communication styles to accommodate the unique needs of each patient. Similarly, another study reviewed case notes on patients with AN and autistic traits, alongside minutes from case study discussions [18]. This study identified communication difficulties as one of the key challenges faced by clinicians when treating individuals with AN and autism, with severity ranging from mild difficulties in articulating thoughts to selective mutism. Overall, the social communicative and emotional profile of autistic individuals may hinder traditional therapeutic approaches that heavily rely on verbal articulation of thoughts and emotions. Hence, there is a need for resources to further understand and support the communication difficulties of autistic individuals in ED treatments.

Implemented at the South London and Maudsley (SLaM) Inpatient ED service in 2018, PEACE (Pathway for Eating disorders and Autism developed from Clinical Experience; peacepathway.org) is a treatment framework designed to address the unique challenges faced by autistic individuals with ED, and is the first systemic approach to tailor standard ED treatment for autistic individuals [33]. As part of the PEACE pathway implementation, comprehensive training was provided for clinicians at the ED service on autism awareness and personalized therapy adaptations [27]. Additionally, resources and workshops were developed to support patients’ sensory sensitivities [17, 31] and communication challenges. As part of the PEACE pathway implementation, a communication passport was introduced, in line with recommendations from the National Autistic Society (NAS) advocating for the use of health passports to facilitate communication between autistic individuals and healthcare professionals [23]. This communication passport was developed based on the NAS’s “My Health Passport” resource [22], originally designed to assist autistic individuals in communicating their needs to healthcare professionals. It was adapted to better suit the setting of an ED service: Questions were condensed to one page in order to streamline the incorporation of the passport as part of the admission process, and questions related to pain and needle injections were replaced with general prompts about dislikes and struggles, and what the care team could do to help. Previous studies have discussed the merits of health passports in supporting communication between patients with developmental disabilities and healthcare providers. These passports varied from simple one-page documents designed for individuals with learning disabilities [5] to more comprehensive documents containing medical history, intended for use in emergency departments [13]. However, no study has yet explored the use of communication passport in an ED service context, particularly among patients reporting autistic characteristics.

The aim of the current study was to explore ED patients’ needs through the use of a brief, one-page communication passport at the SLaM National ED Service. Through explorative qualitative analysis of patient responses, the study aimed at elucidating communication preferences, challenges, dislikes, and support needs among individuals with and without autistic traits.

Patient demographics and baseline characteristics are outlined in Table 1. The majority of the sample (84.2%) were diagnosed with AN restrictive subtype. Among the participants, 36.8% scored above the cut-off of 6 on the AQ-10 and were classified as HAT patients, with 55.3% classified as LAT patients. The majority of patients (76.3%) displayed severe impairment in work and social functioning, as assessed by the WSAS (scoring above the threshold of 20).

The examination of the entries in the communication passport revealed a range of valuable patient insights, summarised in Table 2. These included their communication preferences, sensory difficulties and needs, special interests and personal strengths, important messages about personal values intended for the care team, struggles and dislikes, and different kinds of support required. We discuss each aspect individually in the following sections, providing a more comprehensive understanding.

This study explored patients’ needs as documented in their communication passports at a specialised inpatient eating disorders service. Overall, the communication passport provided valuable insights into patients’ communication preferences, sensory sensitivities, challenges, and support needed, which would have been otherwise difficult and time-consuming to compile. Furthermore, patients used the passports to share information about their strengths, personal identity, and life beyond the hospital. Through these empowering narratives, the communication passport provides opportunities to discuss personal goals and motivations for recovery during therapy sessions, fostering a deeper understanding between patients and the care team. The insights from the communication passport can also support clinicians’ decision-making in choosing appropriate therapeutic approaches, group activities, and communication strategies tailored to each patient’s needs: for example, adaptations such as providing more frequent sessions and short breaks would allow for more information processing time for patients struggling, and environmental adaptations such as low lighting in the therapy room could benefit patients who report sensitivity to bright light on their passport. This personalised approach has clinical implications for enhancing the overall patient experience and fosters a sense of respect and inclusivity. It also helps to build trust and rapport, leading to better therapeutic relationships.

It is important to note that while patients with both high and low levels of autistic traits reported similar support needs, only those with high autistic traits highlighted difficulties with changes and information overload, expressing a need for information to be repeated multiple times. This is consistent with existing literature, such as the study by Mackie and Fan [19], which suggests that autistic individuals often struggle with information processing due to cognitive and social barriers. This struggle can create communication barriers for autistic individuals within healthcare settings, limiting their access to necessary care [30]. Furthermore, Kinnaird et al. [15] have emphasised the need for healthcare providers to recognise and adapt to the communication styles of autistic patients. The communication preferences identified in this study could serve as key areas for enhancing communication training for healthcare professionals. Additionally, a significant portion of our patient cohort (76.3%), regardless of their autistic status, were assessed using the WSAS to have severe difficulties in social and work areas. This highlights the prevalent social challenges faced by ED patients and the need to improve support in this area.

Overall, providing patients with a communication passport empowers them to actively participate in their care by expressing their communication preferences, needs, and identity. As can be seen from the responses in this study, the passport can serve as a tool for self-expression, enabling patients to assert their rights to accessible and respectful communication. This fosters a sense of agency and autonomy, which is core to recovery from eating disorder [9, 10].