We hear a fair bit about the length of time it can take to access eating disorder treatment. Delays are particularly distressing as the evidence points to better outcomes for those who receive timely care for their eating disorders (e.g. Treasure & Russell, 2011). We know about some of the potential barriers to care for eating disorders, including the lack of specialized services, the stereotypes and stigma that can impede formal and informal help-seeking, and the financial costs of seeking care not always covered by insurance. However, we know less about when people with eating disorders disclose their struggles, who they disclose to, and how this impacts their path to care.
When I was searching for articles related to treatment access for eating disorders, I came across a preliminary study published in 2012 by Gilbert and colleagues investigating disclosure of eating disorders and subsequent pathways to care. Because it is a brief report, I was curious to see whether others had taken the work in the “future directions” the authors suggest. However, I could find very few studies that cited this one, which is interesting to me. I think this kind of issue doesn’t get nearly enough air-time in the eating disorder literature.
It’s incredibly important to consider who people are talking about their distress to for a number of reasons. Firstly, this can help us figure out who needs training in directing people to appropriate supports, in how to respond, and in recognizing eating disorders beyond stereotypical presentations. It can also help us better understand people’s trajectories to care, which could ostensibly help us to make the process more effective and efficient. In any case, I thought the article was worth comment, and so here we are.
Gilbert et al. (2012) gathered a sample of 71 women from 2 UK eating disorder services. The women ranged quite widely in age, from 15 years 8 months to 62 years 2 months (average 28 years, 9 months). Range of time from disclosure to participation in the study was also very wide: from 1 month before the study to 24 years, 2 months before the study (average 6 years, 2 months). Accordingly, some participants could be considered recovered while others were pre-treatment or engaged in treatment. The authors do comment on this as a limitation of the study, but it is worth a mention here before I outline some of their findings.
They used several structured interviews and questionnaires to find out when and to whom participants had disclosed, as well as their level of eating disorder symptomatology at the time of the study. This is another important limitation, as they did not have an assessment of eating disorder severity at time of disclosure, which would be an incredibly interesting study, in my opinion. The interviews & questionnaires were:
- A demographic questionnaire, including questions about when participants developed their disorder, when they shared their concerns with someone else, when they talked about it with a general practitioner, and when they accessed specialized care for their eating disorder
- An adapted version of the Eating Disorder Disclosure Interview (from the Session Evaluation Questionnaire) which they call the DEQ; this questionnaire was to determine how participants felt about their disclosures
- The Eating Disorder Examination Questionnaire (EDE-Q) to assess eating disorder symptomatology
On average, participants scored below clinical range on the EDE-Q. However, this does not mean each participant scored below clinical range; as the authors note, this is likely because of the wide variation of eating disorder recovery stage amongst participants. They report on the specifics of symptoms, which illustrate this; for example, at the time of assessment, over half of the sample reported bingeing and a third reported purging.
The authors report on the delays between participants noting disordered eating, their disclosures and access to services. They divide this in terms of whether they volunteered these disclosures or whether the disclosures were solicited.
- 30 participants volunteered their disclosures, while 41 were asked
- The mean age at first disclosure for those who voluntarily disclosed was 24.9, on average 24.7 months after they developed concerns about their symptoms
- These individuals received specialized care 35 months, on average, after they first disclosed.
- The mean age at first disclosure for those whose disclosures were solicited was 21.1, on average 3.44 months after they developed concerns about their symptoms
- These individuals received specialized care 19.4 months, on average, after they first disclosed.
This difference in time from noting symptoms to disclosure is striking. There was a significant difference between those who voluntarily disclosed and those who did not for concern to disclosure (those who voluntarily disclosed took much longer to do so than those who did not) but not between first disclosure to access to specialized services.
Many participants in both groups first disclosed to partners and friends (21.2% of those who voluntarily disclosed and 22.7% of those who did not). Significantly, 15.2% of those who voluntarily disclosed first disclosed to a medical professional, versus only 6.1% of those whose disclosures were solicited.
Unexpectedly, the authors report, older participants actually received specialized care more quickly than younger participants. They suggest 2 possible explanations:
- That older participants chose “proactive confidants,” i.e., those who could act on the disclosures (like a doctor)
- That older participants may have been in more severe distress at the time of the disclosure
I find the first explanation more plausible given that they authors did not gather information about the level of symptomatology at disclosure. Further, they do not provide information about whether there is a difference between length of time from concern to disclosure divided by age; they divide this data instead by volunteered vs. other-initiated and the way it is aggregated doesn’t allow for the division per age. They do note that those whose disclosures were solicited were younger across the pathway to care, so this could help to support their claim, as those with “other-initiated” disclosures received care more quickly. So, while the second observation may well be a factor, I’m unconvinced by the data they present in this respect.
Another interesting finding is that it took participants a fair amount of time from disclosing to a general practitioner to accessing eating disorder specialized services: on average 12 months for those who voluntarily disclosed and 17.3 months for those whose disclosures were solicited. The data appears to show a wide variation in length of time from GP’s office to specialized care, as well- for some, this stretch of time is much higher.
You might be wondering whether participants regarded solicited disclosures unfavorably: according to the authors, there were no significant differences in terms of outlook on the disclosure experience between voluntary and non-voluntary disclosures. Essentially, this suggests that participants in this study, at least, were not necessarily offended by being asked about their disorders.
So What Does it Mean?
As Gilbert et al. point out, the literature suggests that there is a delay of up to 4 years for receiving eating disorder care. While they found an average length of 3 years and 3 months from disclosure to specialized care, this is still quite a significant delay. There is general consensus that the sooner care is received, the better. So, what might we do to better serve those with eating disorders?
This study reveals some interesting things about the process from realizing there is an issue to actually getting help. I thought it was quite intriguing that there were no significant differences in perceptions of initiating the disclosure process versus being asked about it; I would have anticipated that those who were asked would have described the experience much more negatively.
As always, I’d love to know more: more about the reasons why it took so long to move from disclosure to care seeking, more about the experiences of being in that in-between place, and more about the experiences of those who the disclosures were directed at. The authors provide some preliminary observations about what might be done to facilitate the process. For example, they suggest that in light of findings such as how disclosures to family members were common but not tied to quicker access to care, interventions might be developed that could assist family and friends in better supporting those who disclose to them.
I also think that training and resources for general practitioners cannot be stressed firmly enough- so many doctors know little to nothing about eating disorders and the best way to treat them; I’ve heard too many horror stories of people being brushed off as if nothing was wrong in their GP’s office. Generally, this feeds into the potential for someone to feel that they “aren’t sick enough” to get specialized care. Say it with me: if you are having distress around food and/or your body and it is impacting your life, you deserve to get help that is specialized and supportive.
I’d like to see more research like this and extending on the findings, really delving deep into what I know can be an incredibly challenging time for all involved. Dare I say… some qualitative work? For me, it’s all well and good to know that things are a challenge or take a long time, but I want to know more about what that is like for people, what they might suggest as helpful for facilitating a more supportive experience, and how we might move forward.
Gilbert, N., Arcelus, J., Cashmore, R., Thompson, B., Langham, C., & Meyer, C. (2012). Should I Ask About Eating? Patients’ Disclosure of Eating Disorder Symptoms and Help-seeking Behaviour European Eating Disorders Review, 20 (1), 80-85 DOI: 10.1002/erv.1143