This qualitative research explored facilitators and barriers to access to treatment in patients with EDs in Chile. Interviewing three different groups allowed us to identify factors that affect access to care. Furthermore, it was possible to establish that each group tended to mention more barriers and facilitators specific to their own perspective or field, which was also reported in the study by Kästner et al. [26]. For example, patients mostly described ego-syntonic behaviors as barriers, while health professionals emphasized the lack of knowledge or expertise. Meanwhile, the most important facilitators for families were the recognition of EDs and their own involvement in the treatment of their relatives.
Interestingly, each of the five main barriers found in this study represents a different category or intersection of the model proposed in the analysis, reinforcing the idea that the problem must be addressed from different angles. With regards to the five main facilitators, four emphasize the role of families. In EDs, family members play an essential role in the recovery of patients, an aspect that has been emphasized in other qualitative studies [33–35].
The barriers and facilitators found in the analysis are relatively similar to those found in other studies, such as the systematic review by Ali et al [36] and the Scoping review by Nicula et al [8]. The geographic barrier, which did not appear in these but was found in our study, was addressed in three studies from Australia and New Zealand [37–39]. Another barrier found in this study was the existence of a longstanding ED (45% of the interviews). Some data suggest that a prolonged clinical course of the ED may be a consequence of late treatment initiation (40). However, to our knowledge, this is the first study that also considers it as a barrier. A longstanding ED may delay the start of treatment and perpetuate the illness, as the difficulty of seeking help is accentuated due to the ego-syntonic nature of symptoms.
Only one patient interviewed did not refer to her mother as an important figure in the therapeutic process. She was the sample's oldest patient, and instead, she referred to her husband. This is in accordance with data from the international literature, where fathers are less involved than mothers in treatment [35, 41, 42].
The average DUED estimated in our study was 7.6 years (median 5.8 years), representing, to our knowledge, the longest time published in the literature on ED. The clinical characteristics of the sample could partially explain this finding since this study included patients with different types of EDs. Most publications have been done in patients with AN. A recent systematic review found that the DUED for AN was 2.5 years, while for BN it was 4.4 years, and for binge-eating disorder 5.6 years [7].
After the studies by Kästner and McNicholas [32, 43], this is the third qualitative publication that explores barriers to treatment for patients with EDs from the perspective of patients, family members, and health professionals. To our knowledge, this is the first study done in a developing country. This may contribute to filling an important gap in the literature since all the studies published to date have been conducted in countries with greater resources.
Limitations
Most of the study limitations are due to the small sample size. Although there was theoretical saturation, three variables could not be explored exhaustively (migrant status, indigenous people, and male gender). Patient gender may be important, as men with EDs are often less recognized, less treated, and more stigmatized [44]. Primary healthcare professionals were not included. Moreover, the health professionals included in the study were mainly ED specialists working in a private clinic, which is uncommon for the Chilean healthcare system. Although few professionals from the public healthcare system were interviewed, the inclusion of specialists mostly from the private system represents the existing gap between the public and private healthcare systems in Chile.
Even though this study includes patients and families from various regions of Chile, it fails to represent the whole country. There is a bias in the patients’ sample, as they were receiving treatment. The literature shows that patients with EDs, particularly young people, often do not seek treatment and that this “untreated” group may manifest other barriers [38, 45]. Second, the sample lacked participants from more extreme regions of the country (such as the Extreme North and Patagonia), which could have further enriched the analysis. Last, there is a significant overrepresentation of patients with private health insurance (68% in the sample versus 16.9% according to official data [46]). Although the high cost of treatment was one of the most relevant barriers in the analysis, the referral processes and the lack of specialists would have had a greater weight if a representative sample of the Chilean public health insurance system had been included.
Public health implications
Society is relatively poorly educated about EDs, and public education programs are warranted. There is also a lack of education among health professionals in recognizing symptoms and risk factors of ED that delay diagnosis. Interventions at both levels may be a cornerstone for a public health intervention.
Early treatment in EDs is important, considering the early onset age and the neurobiological consequences over time [47]. Some population-level interventions have shown promising results. In England, FREED (First Episode Rapid Early Intervention) is an evidence-based early intervention model for EDs focused on people aged 16 to 25. It has successfully reduced waiting lists, DUED, and clinical outcomes [48, 49]. It has been implemented in 80% of NHS services for adults [50]. FREED has been modified for use in Australia, where Australian Medicare funds treatment up to 40 therapy sessions and 20 dietitian appointments per year, but with a focus on severe ED [51]. In contrast, a German program that sought to reduce the DUED of EDs with a systemic public health intervention, including school activities, failed to show statistical significance, probably due to methodological issues [52].
Cost-effectiveness in developing interventions to prevent and treat EDs has been described when public health systems are involved. An example of this is the English FREED model for intensive treatment of EDs where 4.472 pounds were saved per patient [48]. In Germany, savings of 2 to 4 euros were estimated per euro invested in AN, and 4 euros saved per euro invested in BN [53]. It must be emphasized that in both countries, the public health system is superior to Chile's.
Future research
We suggest conducting more studies on access to treatment for patients with EDs in developing countries. In the long run, low visibility affects the development of public health policies, the physical and mental health of patients, and the perpetuation of stigma.
Moreover, it would be useful to encourage epidemiological studies on EDs in Latin America to favor the visibility of the problem and decision-making. Likewise, it would be worthwhile to inquire more into patients' experiences within the public system, male patients’ experiences, and stratifying by sexual orientation and ethnic groups.
Previously, we acknowledged that this study didn’t include individuals with EDs who have not accessed specialist care. However, this would be a key point for future studies regarding access to treatment in developing countries like Chile. Furthermore, individuals diagnosed with an ED in primary care who never entered specialist treatment could be a key target group for understanding barriers and developing public policies.