Development of a clinical pathway for screening and integrated care of eating disorders in a rural substance use treatment setting.
Eating and Substance Use Disorders frequently co-occur in clinical samples. This comorbidity presents a particular challenge due to increased medical complications, higher relapse rates, psychiatric comorbidity and poorer overall outcomes for both disorders, and are associated with specific medical and psychiatric difficulties that contributes to complexity in diagnosis and treatment. However, patients with co-occurring substance use and eating disorders do not widely receive structured standardised assessment or treatment for eating disorders in addiction treatment programmes. Focus groups were conducted to seek Drug and Alcohol Service staff perspectives on their knowledge and their perception of screening and care planning for this Eating Disorder when it presents to a rural community health setting. To analyse the focus group data the authors utilized thematic analysis and three major themes emerged as follows: beliefs abut clients (stereotypical views, complexity of comorbidity, understanding of self (lack of knowledge/skills, professional role) and organisational barriers and enablers. Whilst identifying a significant number of clinician and organisational barriers to providing screening and treatment of Eating Disorders in a Drug and Alcohol setting, the focus group discussion also highlighted a number of potential enablers. Most notably clinicians identified a willingness to provide screening and care planning if they were provided with knowledge of clinical pathways and access to screening tools. A consensus conferencing approach facilitated construction of a clinical care pathway and is envisaged to enable the service to provide assessment and treatment planning for clients with comorbid eating disorder which was previously absent.
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Eating and Substance Use Disorders frequently co-occur in clinical samples, and are associated with specific medical and psychiatric difficulties that present challenges for diagnosis and treatment (S. M. Gordon et al., 2008; Gregorowski, Seedat, & Jordaan, 2013; Carlos M. Grilo, Sinha, & O’Malley, 2002). The seriousness and prevalence of these conditions is often underestimated. Anorexia Nervosa has a higher mortality rate than any other psychiatric conditions and a suicide rate higher than Major Depression (Baker & Velleman, 2007). Women with Substance Use Disorder are as likely to have a co-existing Eating Disorder as any other psychiatric disorder (Baker & Velleman, 2007; Carlos M Grilo, Levy, Becker, Edell, & McGlashan, 1995). It is widely accepted that the covert nature and social stigma of eating disorders results in individuals presenting for treatment of associated concerns rather than directly for Eating Disorder treatment. Early intervention is strongly linked to a more favourable outcome. Furthermore, a study of retention in treatment of drug addicted women identified that sucessful outcomes are associated to completion of programs and presence of eating disorder was a significant covariable in determining retention in treatment and relapse or success (Bonfa et al., 2008). Therefore, comprehensive screening and assessment of both disorders is recommended for positive treatment outcomes (Gregorowski, et al., 2013; Carlos M Grilo, et al., 1995).
The NSW Service Plan for People with Eating Disorders (2013-2018) (Health, 2013) requires that every health service is a point of entry for people with or at risk of an eating disorder and that each service has the capacity and capability to providing screening, assessment, early intervention, referral pathways and shared care throughout their treatment and recovery. The plan recognises the significant impact of eating disorders on both the individual and society in terms of morbidity (Mitchison, Hay, Mond, & Slewa-Younan, 2013) and economic cost (de Oliveira, Colton, Cheng, Olmsted, & Kurdyak, 2017; Harries, 2012).
Eating disorders frequently co-occur with substance use disorders and other mental health diagnoses such as anxiety disorders and depression (Hay et al., 2014). Prevalence rates of Alcohol Use Disorders have been reported to be 30-50% in women with Bulimia Nervosa (Dansky, Brewerton, & Kilpatrick, 2000). Co-morbidity with substance use disorders represents a particular challenge for a number of reasons including increased medical complications, higher relapse rates, psychiatric comorbidity and poorer overall outcomes for both disorders (Gregorowski, et al., 2013). Furthermore, it has been well-established that substance use patients with comorbid eating disorder often exhibit more severe eating disorder symptoms (S. M. Gordon, et al., 2008; Gregorowski, et al., 2013) and other mental health disorders (Herzog, Nussbaum, & Marmor, 1996) that increase the complexity of care as well as the resources needed to provide adequate treatment.
It is well documented that health professional’s attitudes directly impact upon the quality and provision of care provided to patients/clients with Eating Disorders (McNicholas, O’Connor, O’Hara, & McNamara, 2016; Seah, Tham, Kamaruzaman, & Yobas, 2017a, 2017b). A systematic review of the literature on the knowledge, attitudes and challenges of healthcare professionals managing people with eating disorders and identified common findings of knowledge gaps, low levels of confidence in capability to manage eating disorder patients and a tendency for the majority of healthcare professionals to view patients with eating disorder in a negative manner (Seah, et al., 2017a).
Evidence regarding the management of comorbidity highlights the need for services to identify comorbidity and provide integrated care for these clients (NSW Ministry of health, 2015). Research indicates that patients with co-occurring substance use and eating disorders do not receive structured standardised assessment or treatment for eating disorders in addiction treatment programmes (S. M. Gordon, et al., 2008; Susan Merle Gordon et al., 2008). The lack of implementation in substance use treatment settings calls for the need to identify barriers to screening and integrated care for this client group. The aim of the current study is to explore the barriers for screening and integrated care of comorbid substance use and eating disorder clients in a rural community Drug and Alcohol Service.
The study was comprised of two stages. Stage one involved conducting focus groups with clinicians to explore the barriers and enablers of screening and integrated care of comorbid substance use and eating disorder clients in a rural community Drug and Alcohol Service. Stage two involved the development of a clinical pathway derived from the themes identified from the focus groups and utilised a consensus conference approach.
Two rural drug and alcohol service sites in NSW, Australia, were included in the study. Both are public health community based services serving a total population of 78,539 (ABS 2016 census) and are located on the Mid North Coast of NSW. The two Drug and Alcohol Services provide outpatient drug and alcohol treatment service including withdrawal management, counselling, opioid substitution maintenance, magistrates early referral into treatment (MERIT), hospital consultation liaison, and drugs in pregnancy services.
All clinical staff in the relevant services were invited to attend one of two focus groups. The project and its aim was announced at a number of staff forums and a formal invitation to participate was sent via email. Staff members were provided with a written participant information sheet and consent form to sign prior to the focus group. Focus group were cofacilitated by the researchers JE and KH who were both clinicians employed in the same service that the focus groups were conducted in. The focus groups were conducted within the respective Drug and Alcohol Service settings and were approximately 2 hours in duration. Each focus group started with an overview of the project and the scope of the consent. Group One consisted of 10 participants, 9 female and 1 male. A mix of disciplines were represented in Group 1 including Registered Nurses, Clinical Nurse Specialists, Clinical Nurse Consultants, Welfare Officer, and Social Worker. Group Two consisted of 6 participants. All participants in Group Two were female nurses. Clinician’s experience working within a drug and alcohol setting ranged from 1yr to 38yrs.
The consensus development conference method (Halcomb, Davidson, & Hardaker, 2008) was utilised to develop a clinical care pathway. This approach involves a formal conference process with a panel of stakeholders to debate the topic area and synthesise ideas and develop a consensus for a clinical care pathway (Halcomb, et al., 2008). Conference participants included both NSW health personnel responsible for developing and implementing guidelines and clinicians who would apply these guidelines. Consumer representation was also included in the conference to ensure acceptability and appropriateness of the recommendations to the client group. The conference was facilitated by researchers JE and KH and participants included the Drug and Alcohol District Manager, Drug and Alcohol social worker, Eating Disorders Coordinator, eating disorder consumer representative, Drug and Alcohol Service consumer representative.
Data Collection : stage 1
Atkins’ Theoretical Domains Framework informed the development of the focus group questions. The Theoretical Domains Framework provides a theory informed approach to determine factors that influence health professionals behaviours in relation to implementing evidence based practice. The framework encompasses a number of domains that guide the development and implementation of strategies to promote behaviour change (Atkins et al., 2017).
The following questions were used to guide the focus group discussion :
1) What springs to mind when you think of eating disorders?
2) What about Eating Disorders in the Drug and Alcohol setting
3) What do you perceive your role is in responding to Eating Disorders?
4) What do you perceive are the barriers to identifying eating disorders and providing treatment to these clients?
5) How does the organisation or system influence your response to Eating Disorders?
6) If responding to eating disorders was to become core business in the Drug and Alcohol Service, what things would enable you to respond?
The two focus groups were conducted by JE and KH and were audio recorded, professionally transcribed and verified by the first two authors (JE, KH). Field notes were completed by JE and KH following each of the focus groups
Data Collection : Stage 2
Researchers recorded the ideas generated from the discussion.
To analyse the focus group data the authors utilized thematic analysis as outlined by Braun and Clarke (Braun & Clarke, 2006) to code, deconstruct, and synthesize the data into themes. The authors independently reviewed full transcripts of the focus groups. The approach establishes a degree of internal reliability to the interpretation of meaning within the data. The researchers then conducted a review of the themes against the coded extracts to ensure the themes generated reflected the overarching content. Ongoing deconstruction and thematic reconstruction of grouped codes further defined specific constructs for each theme. Unique characteristics were further developed from each theme. Synthesis of the final report is illustrated using participant quotes which represent the emergent themes.
Ethics approval was obtained from the relevant Human Research Ethics Committee. Accordingly, signed consent was obtained from all study participants prior to each focus group. All data was de-identified to maintain confidentiality and was securely stored as per local protocols (NCNSW HREC No: LNR165).
Stage 1 Findings
Thematic analysis of the focus group data yielded an overarching theme helplessness. A common thread of helplessness was prominent throughout clinician’s discourse across
three primary themes: (i) Beliefs about Client (ii) Understanding of self (iii) Organisational barriers and enablers.
(i) Beliefs about client
Unsurprisingly, focus group discussion centered on the client. In the context of barriers and challenges to treatment, it was identified that the nature of the client themselves was a barrier. Within this theme, three clear subthemes emerged that collectively shed light on the nature of the client as a barrier to the screening and treatment of eating disorders in drug and alcohol services. The subthemes were: stereotyical view of clients with eating disorders, comorbidity of the client, and client expectations of drug and alcohol treatment.
Stereotypical view of clients with eating disorders
Clinician’s tended to conceptualise clients with eating disorders as experiencing a more severe illness process and that due to this the required treatment exceeded drug and alcohol service capability.
“I see these people as fading away, sitting there with sunken eyes, and the…tubes in there…and just slipping off into death” (F1, P5)
There was a pervasive belief that clients with eating disorders were just too hard to treat, or in some cases impossible to treat.
“They’re entrenched in that behaviour”(F1, P7)
This perception of the eating disorder as an exceptionally difficult condition with poor prognosis left clinicians feeling overwhelmed and serves as a rationale to avoid intiating treatment for eating disorders.
Comorbidity of the client
The clinicians identified co-morbidity as increasing the complexity of the client. The existence of a mental illness was a factor that increased the challenge of providing drug and alcohol treatment.
Clinicians perceived eating disorders as equivalent in nature to a chronic mental illness and expressed feelings of being overwhelmed with providing treatment to these clients. It was perceived that the prescence of an eating disorder changed the ability to utilise standard drug and alcohol treatment practices.
“Actually I see it in the same category of schizophrenia…. so if someone was sending me a client who had schizophrenia to manage their drug and alcohol problem, I’ll be going oh man, that’s big, I’m not sure how I’m going to manage that one”
Furthermore, clinicians raised concerns about the physical morbidity that may occur secondary to the eating disorder eg malnutrition and electrolyte imbalances, and the implications this may have on the ability to provide drug and alcohol treatment. Although some clinicians recognised that the eating disorder and substance use issue should be managed simultaneously, it was clear that there was much uncertainty about how and when this was to occur. To some extent, the presence of co-morbidity was identified as a factor that essentially limited the effectiveness of drug and alcohol interventions.
Client expectations of drug and alcohol treatment
Clinicians perceived clients as being resistant to interventions focused on their eating disorder when presenting with a substance use concern. The resistance was perceived as a barrier in identifying the presence of an eating disorder and was attributed to the urgency of client’s perceived needs.
“if you’ve got someone coming in for assessment that’s unwell, hanging out, they are not going to be one bit interested”
The resistance was also attributed to the clients desire to ‘hide’ their eating disorder, for example:
“so they don’t tell you because they’re just going to hear the same old thing that their mother or their sisters been telling them”
(Focus group 2)
Additionally, clinicians attributed the hidden nature of eating disorders as being driven by shame and stigma but also as a protective measure by the client to enable the continuation of their eating disorder behaviours which were perceived to be serving a purpose eg a coping mechanism.
“there’s a reason why they’re doing it and its maybe protecting it a little bit as well”
(Focus Group 2)
It is important to note that clinician’s perceptions of client’s expectations were based on assumptions rather than informed interactions with the client and seemed to contribute to clinician’s avoidance in exploring the possibility of an existing eating disorder, fearing that doing so would be too confrontational and interfere with rapport.
Understanding of Self
This theme reflects how clinician’s viewed their experience in responding to eating disorders. Broadly, the subthemes found were: lack of knowledge and skills; helplessness; and professional role issues.
Lack of Knowledge and skills
The notion of ‘lack of knowledge’was prominent. Participants overtly expressed a lack of knowledge and understanding about eating disorders.
This lack of knowledge was evident in the confusion clinicians expressed about how to define an eating disorder as opposed to irregular patterns of eating as a symptom of substance use. There was uncertainty about the difference between ‘eating disorders’ and ‘disordered eating’. This issue of ‘definition’ was identified as a barrier that left the clinician not knowing how to proceed in treatment, with some clinicians prefering to treat all clients with generic healthy eating education. Clinicians also had a very narrow view of eating disorders eg anorexia or obesity and relied on their ability to identify an eating disorder by visual observation of the client’s physique. There was confusion regarding the range of conditions that qualify as ‘eating disorders’ and how to assess for the presence of eating disorders, as one clinician stated:
“…..teasing it out seems like a nightmare to me really. That’s probably why we just don’t”
(Focus Group 1)
Participants expressed a lack of clinical experience with eating disorders and a resultant low confidence in their ability to provide assessment and interventions to clients with eating disorders:
“I don’t have a mental health background and limited experience, so I would feel sort of woefully inexperienced to sort of explore that”
(Focus group 1)
The complex nature of ‘eating disorders’ as a category of illness emerged.
Professional Role Issues
Clinicians also discussed the perception of their roles in treating clients with eating disorders. There was evidence that clinicians didn’t accept this as a part of their role, one clinician stated:
“we can tease out whether it’s a disorder or not. But it’s not my job. So they will come to that point and then I will discharge and refer them on”
Additionally, clinicians identified a clear perception that due to the complexity of these conditions the skills required to address the problem required a ‘Specialist’ response and was outside the scope of practice of generalist Drug and Alcohol clinicians. These assertions regularly flowed into discussion about a lack of referral options or specialist services. Recognition of this leads to the final theme of Organization.
Organizational Barriers and Enablers
The theme of organization as a barrier was identified in the focus group discussions. It was somewhat dependent on the view that eating disordered clients had to be referred somewhere else. The belief that eating disordered clients could not be treated by the focus group members was based on the client and clinician factors outlined earlier and was further compounded by perceived organisational barriers. However, despite these barriers, clinicians were able to identify factors that may enable improvements in the screening and treatment of eating disorders in a substance use treatment setting.
Clinicians belived that adding another dimension to assess or treat eating disorders would contribute to a further workload on an already perceived very high level of workload. Clinicians identified a lack of time availability to complete core duties and felt that additional assessments would only contribute to the burden, the following clinician stated:
“So we’re definitely not going to have capacity to deal with the people who have eating disorders”
(Focus group 1)
The perception that screening or treatment of eating disorders would not be considered by the organisation to be ‘core business’ of drug and alcohol service also added to concern about limited resources and the perceived requirement to allocate these limited resources to the primary target of drug and alcohol concerns, one clinician said:
“I think we’ve been told its not our core business..’….. ‘its not our core business, we are stretched enough as it is managing substance use issues”
(Focus group 1)
Clinicians identified the lack of any internal processes within the drug and alcohol service to facilitate screening or treatment for eating disorders. Specifically, they identified a lack of education, screening tools and referral pathways as significant barriers to screening and treatment. Again leaving clinicians feeling helpless and overwhelmed as to how to manage clients with eating disorders, as on person said: “we can identify, but then if we’ve got nothing to offer them, what’s the point?” (Focus group 2).
The discussion regarding organization as a barrier also revealed some blurring between the concepts of screening versus treatment. Questions regarding screening for eating disorders were part of the semi structured question set posed to the group and it became clear that participants were not familiar with screening tools or processes. “We don’t specifically screen for the possibility of eating disorder” (Focus group 1)
Whilst identifying a significant number of clinician and organisational barriers to providing screening and treatment of Eating Disorders in a Drug and Alcohol setting, the focus group discussion also highlighted a number of potential enablers to facilitate this process. Most notably clinicians identified a willingness to consider engaging in screening for these concerns if they were provided with organisational support in the form of education, knowledge of clinical and referral pathways and access to screening tools.
“If we knew a clear pathway for treatment for our clients we’d be more comfortable screening, because then we would know what we could do to help them”
(Focus group 1)
Stage 2 Findings Consensus meeting
The authors devised a clinical pathway informed by the Stage 1 findings and Ministry of Health policy on comorbidity and international literature. This proposed clinical pathway was presented to a consensus meeting to enable consumer focussed feedback and expert consultation. The significant items captured in this discussion focussed on the need for screening to be simple and client and clinicial freidnly. Additionally, it was identified that it was critical to screen for medical risk / review at the earliest possible stage of contact with the client and throughout assessment and treatment planning .The final clinical pathway was reflective of consensus meeting discussion and can be found in Table 1, entitled .
This study identified a number of clinician, client and organisational issues impacting on the ability of Drug and Alcohol service clinicians to implement screening and treatment of eating Disorders within a community setting. Broadly, clinicians identified a lack of knowledge, low self-efficacy and limited organisational resources to support the identification and management of what is perceived as a complex and difficult patient group requiring highly specialised and resource intensive care. This client group were considered difficult to manage due to both the psychopathology inherent in eating disorders, the complexities in identifying and treating these clients and the complex interaction of this in a system perceived as having limited staff training, competency and system resources to adequately address the issue.
The findings in this study are similar to those of (Reid, Williams, & Burr, 2010) in their qualititaive study of healthcare professional’s perspectives of eating disorder patients and services. Both studies identified that clinicians find eating disorder patients difficult and often felt helpless to meet their complex needs. Additionally, it was identified that clinicians perceive the difficulty in managing eating disorders results from the complex interaction between patient characteristics, staff training and competence, and organisational resources. A systematic review of the literature (Seah, et al., 2017a) revealed that knowledge of eating disorders and their treatment was low amongst health professionals across a variety of studies and this was reflected in professionals reporting a lack of confidence in responding to this client group. This lack of confidence was explored further in a study (Warren, Schafer, Crowley, & Olivardia, 2012) which identified feelings of helplessness and emotional distress in health care professionals diagnosis and management of clients with Eating Disorders. This sense of helplessness was a consistent theme in the current study and appeared to impact on Drug and Alcohol clinician’s responses to screening and care co-ordinating treatment for eating disorders for clients receiving treatment in a Drug and Alcohol setting.
A coinciding factor contributing to lack of confidence in responding to eating disorders was the confusion surrounding what defines an eating disorder versus disordered eating, especially in the context of comorbid substance use and its associated sequelae. The difficulty of clarifying diagnostics and treating comorbid mental health and substance use disorders is well documented in research literature (NSW Ministry of Health, 2015;Baker & Velleman, 2007). The clinicians perceptions of a high presence of disordered eating in the presence of substance use disorder is mirrored in (Carlos M. Grilo, et al., 2002) review of the literature research that cites EDNOS (but not AN or BN) was significantly more common in people with substance use disorder than without substance use disorder. This finding, also supported by the current study, suggests it is important for clinicians to consider and screen for sub-threshold levels of eating disorder as well as more severe forms, especially as earlier intervention may reduce development of disorder and is strongly linked to more favourable outcomes. Interestingly, the current study identified that clinician’s willingness to discuss subthreshold eating behaviours and feel confident to utilise basic restorative eating interventions as part of usual care in Drug and Alcohol service was high for this subgroup but dropped markedly as severity of eating disorder increased.
The current study identified that despite significant barriers perceived in their current practice responses to Eating Disorder presentations clinician’s did express a willingness to adopt this practice as part of their role if they were provided with adequate training, access to screening tools and a clear clinical pathway which embedded screening and treatment of eating disorders as a key function of service provision in a Drug and Alcohol Service. Consequently it was identified that the development of a clinical pathway was warranted in an effort to enhance the willingness of clinicians, to embed screening and responding to eating disorders as core business of a Drug and Alcohol Service and to improve knowledge and resources which will contribute to increased confidence for clinicians in managing this complex client group.
Relevance to Clinical Practice
Clinician’s identified the need for both a screening tool and a clinical pathway, including the knowledge of treatment services / capacity for consulting with specialist services to assist in identifying and determine a care pathway. The clinical pathway was developed using the consensus conference method. Table 1.
It was envisaged that all clients presenting to Drug and Alcohol Service would received screening for eating concerns. Given the potential for comorbid medical concerns for both substance use and eating disorders the presence of a brief ‘medical screen’ on initial contact with the service was considered critical to ensure the need for medical review was identified early and attended to in a timely manner. Medical screen questions were incorporated at Intake and embedded throughout the assessment process with referral to GP or ED activated for any positive screens.
During initial Drug and Alcohol assessment all clients would also be screened using the SCOFF questionnaire (Morgan, Reid, & Lacey, 1999) and review on the medical screen. The SCOFF questionnaire is a simple screening tool asking five simple questions with endorsement of two items raising suspicion that an eating disorder might be present and identifying the need for further assessment. The SCOFF questionnaire and medical screen would assist clinicinas to determine acuity and a pathway of care for medical reviw or further assessment to determine the presence of Eating disorder or substhreshold eating concerns. In addition to ED / GP involvement other support services including dietetics or specialist psychology in addition to tertiary consultation via the MNCLHD Eating Disorder Co-Ordinator would be utilised as required.
Congruent with the study findings that Drug and Alcohol clinicians were willing and knowledgable to providing a healthy eating intervention for subthreshold presentations, a negative SCOFF and medical screen would result in a client receiving usual care. This would encompass a Drug and Alcohol intervention in combination with healthy eating intervention with additional referrals to dieticians and other health promoting lifestyle programs within the health service area as required.
The proposed clinical pathway utilises already existing clinical systems to facilitate and improve patient care for clients with Eating Disorder. Furthermore it ensures compliance with the NSW Service Plan for People with Eating Disorders that requires every health service is a point of entry for people at risk of an eating disorder. Congruent with previous research findings it is envisaged that screening and managing both disorders would increase treatment retention and positive treatment outcomes for clients (Bonfa, et al., 2008; Elmquist, Shorey, Anderson, & Stuart, 2015; Elmquist, Shorey, Anderson, Temple, & Stuart, 2016). To enhance implementation and ensure sustainability an mplementation plan will be developed in the future and is envisaged to be a continuous process incorporating Eating Disorder champions, pathway review, embedding screening into routine drug and alcohol clinical practice and plans for inclusion in staff orientation and procedure manuals.
The current study was conducted in a rural outpatient drug and alcohol setting with a relatively small sample of clinicians. The transferability of the findings and the applicability of the proposed clinical pathway to metropolitan areas, who have access to a wider range of services is unknown.
The study achieved its aim to examine barriers and enablers and to develop a clinical pathway for integrated care of substance use and eating disorder. Stage 1 identified the enablers and barriers. Stage 2 gave rigour to the construction of the pathway and enabled the service to provide assessment and treatment for clients with comorbid eating disorder which was previously absent. The implementation of this pathway is envisaged to improve patient outcomes for both disorders and increase retention in Drug and Alcohol treatment. Future research could identify prevalence of eating disorders in a rural outpatient drug and alcohol service.
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