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.
The Study
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.
Reference
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
Really interesting article, thanks for sharing! I’d be interested in seeing how disclosure experiences differ based on eating disorder symptomatology. I’d imagine it might be different for restrictive/low-weight EDs vs. BED, for example. As you mentioned, some qualitative work in this area could be very useful.
Thanks for commenting, Kathleen. I think that it would be incredibly fascinating and helpful to know differences based on symptomatology- I suspect that stigma would have a role to play here; I’ve read a few studies suggesting that bulimia and binge eating disorder in particular may be highly stigmatized to the extent that stigma prevents help seeking (like this one by Hepworth & Paxton: http://onlinelibrary.wiley.com/doi/10.1002/eat.20402/abstract. Maybe I should write a post about that one… And yes to qualitative work. So many projects to do, so little time!
Oh, you are singing my song here–earlier diagnosis and true screening from physicians. I have zero studies to support this, but I theorize the work so many people are doing in confronting stigma and publicly disclosing their own EDs–especially those in strong recovery–will move the needle on length of time from symptom onset to both self-disclosure and other-initiated disclosure.
Thanks for the comment! You might be right about the confronting stigma leading to increased awareness and disclosure, as long as it is done judiciously (I’m sure that’s what you mean but just wanting to emphasize). Story sharing, done well and in a non-comparative way, could well make the difference. I think it’s especially important to hear stories from diverse people who’ve experienced eating disorders to combat some of the deeply ingrained myths about who gets/doesn’t get eating disorders! I think where I worry about the public disclosures is when it’s done in a way that suggests that all EDs are alike or that there is only one version of “sick enough” to disclose and get treatment.
Yes–there needs to be balance as well between personal stories and what the science says. I am all for working aggressively to bring a greater variety of voices into this conversation.
Thanks for your article. The conclusions drawn from the 2012 UK are taken from a very small sample of 71 sufferers of EDs. therefore I would respectfully advise caution before we read too much into these conclusions.
Your article also states that the people concerned were being treated by Eating Disorders Services. In the Uk we have extremely strict diagnostic criteria for EDs which in turns limits ones access to treatment. For example if you have anorexia then you have weigh below a certain BMI in order to even get on lengthy waiting lists. These qualifying weights are arbitrary and vary between local areas. Some National Service Service (NHS) Eating Disorders services will not treat anyone with anorexia until they reach a BMI of 14.5!!! Therefore in order to gain access to treatment a sufferer has to actually lose weight. This is the ultimate contradiction in UK provision of treatment for EDs. This process actually exacerbates the ED and makes it harder to treat.
I am a fully recovered anorexic and I had the misfortune to be treated by the NHS for many years. I am also a qualified counsellor and social worker with over 25 years experience and I have actually devised my own treatment program which is radically different to anything being tried at present. My group is called the United Kingdom Eating Disorders Project. You may find us on LinkedIn and we hope to secure funding and start our project in Northumberland as soon as we are able.
What we need is qualitative research conducted over time where respondents are not reduced to numbers and percentages but we actually start to compile empirical data that is based on actual experiences rather than simple responses to questions.
In the UK we urgently need early intervention and the appropriate treatment of EDs if we are to arrest the proliferation of the disorders.
The NHS here has never practiced any form of long term planning. We have short term funding which creates short term planning. This actually costs more money in the long term and the human costs are incalculable.
My project will provide community based treatment at a fraction of current costs. Current rates of relapse in the UK after discharge from treatment are around 80%.
A patient is seen as being recovered from anorexia when they reach a notional target weight of around BMI 20. Therefore we treat the disorder in the UK primarily as a physical illness and almost entirely ignore the fact that anorexia is a mental illness.
I am very passionate about the way we treat all EDs and something has to be done because current approaches simply do not work for the majority of sufferers.
Hopefully my project will get the chance to show a new way forward in treating anorexia and all eating disorders.
Thanks for commenting, Mark. Yes, the authors describe this as a preliminary study due to the small sample size, indicating that in order to generalize we would need to undertake more research in the area. I absolutely agree that more research in the area is needed; it is important to understand the barriers people face in terms of getting treatment. I think the points you raise about BMI criteria and access to treatment likely make it much more difficult to get treatment indeed. However, that wasn’t the focus of their article- the authors were exploring time between disclosure and treatment access. Where the stringent weight criteria would become extremely problematic, I would think, would be in terms of a) making people feel that they “aren’t sick enough” to get treatment (which could feed into the decision to disclose/not disclose; as I mentioned and the authors also note, stereotypes and stigma might impact this decision and weight would definitely be a factor here I imagine- we don’t get nearly enough stories about diverse people of all kinds with eating disorders and so often people don’t see themselves in representations) and b) making people feel that the work is done once weight is restored, whereas many will require much more than that in terms of treating other things like anxiety, etc. or may have had an eating disorder that did not cause them to fall below the BMI you mention as signalling recovery in some treatment centres (many, likely- and cross-nationally).
You bring up a good point in that here we’re talking about access to treatment, but there is not much mention of what that treatment is and whether it is helpful to people. The authors did not note specific treatment type, because that was not the focus of the article. However, I do agree that it is important to think not just about when and whether people are accessing specialized care but what kind of specialized care and how that fits for them. That could be the topic of another study (and as I’m sure you know many studies do take on the issue of treatment appropriateness).
Your study sounds very interesting; I find it intriguing that your first critique is of the article’s small sample size but you will be doing qualitative research. Are you aiming for a large sample size there? I ask because historically qualitative work has aimed not to generalize but to get at that deeper “more than numbers” richness of experience to deepen understanding that you mention. You wrote: “What we need is qualitative research conducted over time where respondents are not reduced to numbers and percentages but we actually start to compile empirical data that is based on actual experiences rather than simple responses to questions.”- I absolutely agree; as I mentioned in the post, I was continually wondering about participants’ experiences of disclosing and accessing treatment were. Your study sounds quite different from this article’s focus; I think there is a place for both and many more from both qualitative and quantitative perspectives to deepen our understanding of eating disorder experiences from distress to recovery and beyond.