Patient perspectives on premature termination of eating disorder treatment: a systematic review and qualitative synthesis

Abstract

Background High rates of premature treatment termination are a well-reported issue in eating disorder treatment, and present a significant barrier for treatment effectiveness and longer term health outcomes of patients with eating disorders. Understanding patient perspectives on this phenomenon is essential in improving treatment completion rates and informing research and intervention development. The aim of this review is to synthesise qualitative literature on patient perspectives of premature termination of eating disorder treatment and to summarise the key issues leading to discontinuation of treatment. Methods A systematic review of 1222 articles was conducted to identify studies using qualitative methods to investigate patient experiences of prematurely terminating eating disorder treatment. Ten articles were included in the review, with thematic synthesis used to analyse the primary research and develop overarching analytical themes. Results Conflict around enmeshment of eating disorder with identity, and lack of support with reconstructing a sense of self without the eating disorder; challenges of managing pressures of social and clinical relationships while feeling unheard and misunderstood by both; expectations and disappointments around treatment; and dissatisfaction with progress were key themes behind premature termination of treatment. Conclusions The findings of this review demonstrate the key issues influencing the decision to end treatment early, highlighting the contribution of individual, environmental, and service-level factors. Implications of these factors are discussed and suggestions raised for future research and service development.

Autopsy of a failed trial part 1: A qualitative investigation of clinician's views on and experiences of the implementation of the DAISIES trial in UK‐based intensive eating disorder services

“…This is consistent with previous literature suggesting patient treatment preference as a key recruitment barrier in randomised controlled trials (RCT; Donovan et al., 2014 ; Elliott et al., 2017 ; McDermott et al., 2021 ). Additionally, AN populations are noted to be challenging to recruit and retain in RCTs due in part to high ambivalence and low treatment acceptability (Halmi, 2008 ; Halmi et al., 2005 ; Vinchenzo et al., 2022 ; Watson & Bulik, 2013 ). A potential solution may be to better accommodate patient preferences in the conduct of trials, either during the recruitment ‘pitch’ (Mills et al., 2011 ) or in research design (Loeb et al., 2020 ).…”

Discordant conceptualisations of eating disorder recovery and their influence on the construct of terminality

“…However, treatment response and sustainability of improvements can be difficult to evaluate comprehensively, particularly due to the exclusion of underrepresented ED populations captured in demographic data [82]. Among individuals who access treatment, many discharge early (patient-initiated discharge) for reasons including dissatisfaction with services [83], low perceived efficacy [84], mistrust, therapeutic rupture [85], misalignment with treatment procedures or focus [86], time on waitlists, financial limitations, inadequate insurance coverage [87], or family responsibilities [88,89], or are discharged early from treatment by providers (clinician-initiated discharge) [90,91]. These differences in the reasons for premature ending of treatment may or may not be captured in data collection.…”