Training group for parents of patients with pediatric avoidant/restricted food intake disorder sensory-based avoidance: feasibility and acceptability

doi:10.21203/rs.3.rs-4719121/v1

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Training group for parents of patients with pediatric avoidant/restricted food intake disorder sensory-based avoidance: feasibility and acceptability

https://doi.org/10.21203/rs.3.rs-4719121/v1

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Background

We aimed to assess the feasibility, acceptability, treatment satisfaction and preliminary efficacy of a training group for parents of patients with avoidant/restrictive food intake disorder (ARFID). The objective of our group is to enable families to co-construct knowledge and strategies that will empower them to improve children's flexibility, dietary intake and eating in social situations.

Method

The parents of 18 children (aged 5–14 years) with ARFID with sensory-based avoidance participated in a 2-day session of the training group. Feasibility and acceptability were assessed by calculating enrollment, attendance and attrition. Therapeutic alliance and perception of care benefit were assessed by the Helping Alliance Questionnaire-11 (HAQ-11S) and the Consumer Satisfaction Questionnaire (CSQ-8), and efficacy was assessed by the Clinical Global Impression Severity (CGI-S) and Improvement (CGI-I) questionnaires administered pre- and posttreatment.

Results

Of the 26 eligible families, 18 (69%) participated in the training group. Of the 18 participating families, all except for 2 (11%) completed all sessions. Both parents were invited to participate, but we observed little involvement from fathers (83% mothers attending sessions alone). Parents rated the treatment as highly satisfactory, with significant increases from the pre- to posttreatment HAQ-11S and CSQ-8 questionnaires (p < .001). Significantly decreased CGI severity scores were observed (p < .003). Qualitative evaluation suggested improved symptom understanding, increased parental empowerment and decreased isolation.

Discussion

The findings of this study provide preliminary evidence that short parent-based group treatment for ARFID patients is associated with high levels of engagement and satisfaction, decreased isolation, enhanced parental competence and increased child flexibility. Many patients with ARFID are not able to access appropriate care, and enhancing parents’ functions in daily life may improve patients’ long-term trajectories.

ARFID

parent training group

eating disorders

ARFID is a DSM-5 diagnostic construct defined by the restriction of adequate nutritional intake leading to (a) significant weight loss or failure to achieve expected growth; (b) significant nutritional deficiency; (c) dependence on enteral feeding or oral nutritional supplements; and/or (d) marked interference with psychosocial functioning (1). Weight criteria are not essential, and many patients may experience nutritional deficiencies and interference with psychosocial functioning without associated weight loss, leading to complex and challenging diagnoses. Three clinical presentations, namely, sensory-based avoidance, fear of aversive consequences, and lack of interest in eating, which are the primary drivers of food avoidance, have been defined (2). ARFID differs from anorexia nervosa (8). It predominantly affects boys and frequently co-occurs with other psychiatric and neurodevelopmental conditions, such as anxiety disorders, autism spectrum disorders (ASD) or attention deficit hyperactivity disorder (ADHD) (3–6), and is also associated with frequent functional gastrointestinal symptoms (4, 7). This complexity in the diagnostic definition delays the diagnosis and impacts the development of adapted and validated interventions in routine care (2, 9).

The prevalence of ARFID is elevated and varies across studies in nonclinical samples, reaching 15% in children (3), with a significant burden and negative impact on quality of life (10). Parents of children with ARFID also perceive poor understanding and support (11), justifying the development and diffusion of novel specific multidisciplinary validated interventions targeting patients and families (2, 9, 12). For children and adolescents with ARFID, when hospitalization is not needed, individual interventions or family-based approaches have demonstrated their feasibility and effectiveness (9, 13). Cognitive‒behavioral therapy protocols have been developed for exposure-based approaches to target the three drivers of ARFID, which are currently described as candidate mechanisms (i.e., sensory sensitivity, lack of interest/low appetite, fear of aversive consequences), ranging from 8 to 30 sessions (14–16). Family-based treatment approaches designed to empower caregivers, reduce familial guilt and support recovery at home have been adapted to address the needs of patients with different ARFID presentations, ranging up to a maximum of 22 sessions over 6 months (17). Adapted parent-based treatments for ARFID that focus on family accommodations aimed at increasing food-related flexibility and decreasing food-related stress have been developed in 7- to 12-session programs with high parental adhesion and preliminary clinical improvement (18, 19). Access to these new care strategies remains limited for families due to geographical, financial, or time constraints; shorter protocols of brief parental training are being developed based on 4-hour virtual training sessions aimed at coaching caregivers in implementing at-home behavioral feeding interventions (12, 20). Other studies have also suggested the benefits of peer support through patient organizations to improve parents' understanding (11).

By combining modified evidence-based approaches, we developed a parent training group that was delivered on a two-day program (total of 12 hours) by a multidisciplinary team (including psychologists, nurse practitioners, dieticians, speech language therapists and psychiatrists) to facilitate access to care for a larger number of families and to provide validated tools to help their children progress with eating. Thus, we aimed to assess the feasibility, acceptability and preliminary clinical efficacy of a two-day training group for parents of patients with ARFID.

Participants

Children who met the DSM-5 criteria for ARFID with sensory-based avoidance according to the Eating Disturbances in Youth-Questionnaire (EDY-Q) (21) and their parent(s) were included after a two-day hospital assessment (psychiatric, nutritional, psychologic and oral-motor assessment) from September 2022 to December 2023. Nonfrench speakers were excluded and referred to individual education sessions, and patients with phagophobia or emetophobia were excluded and referred to individual CBT sessions.

Study design

At the end of the initial day-hospital assessment, parents of patients diagnosed with ARFID were offered a one-hour systematic individualized training session, and they were invited to be placed on a waiting list to participate in the parent training group. Some patients benefit from individual psychological follow-up and/or orofacial function reeducation outside the hospital. These individual reeducations did not represent exclusion criteria for inclusion in the group. Before the start of the group, a questionnaire collecting expectations was sent to the families. Therapeutic alliance and perception of care benefit were also assessed by the Helping Alliance Questionnaire-11 (HAQ-11S) and the Consumer Satisfaction Questionnaire (CSQ-8)(22). The HAQ-11S is a self-questionnaire of 11 items measuring the strength of the collaboration between the participant and the healthcare team. The CSQ-8 is a self-satisfaction questionnaire, defined here as a concept tending to assess whether the needs of the consumer of a service are being met. In medical terms, patient satisfaction is an internationally recognized measure for the evaluation of the perception of quality of care; this dimension can influence the adherence and acceptability of care. All of these questionnaires were collected at the beginning of the first group day. The parent education group was conducted over two days, three weeks apart, to allow for the implementation of strategies at home. Following the last two-day sessions, parents completed an open-ended satisfaction evaluation questionnaire, and therapeutic alliance and participant satisfaction were reassessed using the HAQ-11S and CSQ-8 questionnaires. Feasibility was quantified via attendance at group sessions and retention rates between day 1 and day 2, and we set a benchmark of ≥ 75% completion of sessions. Acceptability was assessed by comparing therapeutic alliance and perception of care benefits questionnaires (HAQ-11S and CSQ-8) before and after group attendance. Feasibility and acceptability were analyzed by comparing frequencies and descriptive statistics. For acceptability with the open-ended satisfaction evaluation questionnaire, we used the rapid analysis method to provide immediate feedback to inform changes to the intervention (16). We generated overall themes from each participant’s open-ended satisfaction evaluation questionnaire and integrated themes across questionnaires to identify commonly occurring subthemes.

The severity of illness and treatment response were assessed using the Clinical Global Impression (CGI) scale, a clinician-rated instrument that provides a global assessment of a patient's functioning and symptom severity (23). The CGI was rated at the patient’s first admission, before group onset and two to three months after group admission by trained clinicians. Patients were rated on the CGI-S (severity) and CGI-I (improvement) subscales, with scores ranging from 1 to 7.

Statistical analyses

Student's t tests were performed for paired samples before and after the group, and ANOVA was performed to compare the CGI-S scores at admission, before and two to three months after the group. Analyses and graphic representations were performed with RStudio version 2023.12.1 + 402.

Intervention

The parent training group program (Fig. 1) consisted of 2 days of sessions for a total of 12 hours. The objective of our group is to enable families to co-construct knowledge and strategies that will empower them to face their child’s difficulties. The main treatment aim is to improve children's flexibility to improve dietary intake (maintaining healthy weight, correcting any nutritional deficiencies, eating foods from each basic food group) and to help them feel more comfortable eating in social situations. We implemented a methodical construction of the content of our group to promote its reproducibility: forming a multidisciplinary team (including psychologists, nurse practitioners, dieticians, speech language therapists and psychiatrists), defining precise and measurable objectives, and planning a detailed program of sessions and self-help tools for families. This methodical approach easily allows for the reproducibility of this mode of care. We constructed a format over two days to promote the availability and commitment of families to the entire program. A three-week interval between the two therapeutic education days was chosen to allow parents to implement at home the techniques proposed during the first day and to allow for feedback and adjustments during the second day.

Combining modified evidence-based approaches, we developed our program on 3 main axes: 1) education on the mechanism of disease and dietary knowledge, 2) strategies to develop and maintain motivation, and 3) change acceptance and food diversification. We aim to teach parents how to support their child in facing eating difficulties by improving parental knowledge and modifying their own behaviors to enhance their child’s ability to eat.

Parent education on ARFID: We first aim to develop families’ knowledge about ARFID (etiology, symptoms, comorbidities) to help relieve their sense of guilt and empower them to address their child's difficulties and reduce conflict and stress related to mealtimes. This exercise is conducted initially in pairs and then as a whole group discussion about their child's difficulties and the strategies already implemented to identify specificities and similarities in their child's characteristics, thus coconstructing definitions together to understand the condition and provide effective support. Education on dietary knowledge: We reinforce families' knowledge about dietary needs, both to identify nutritional safety needs, correct misconceptions about food, and implement appropriate strategies for enriching or supplementing the diet. Developing parents' dietary knowledge and sharing this knowledge with the child helps foster their understanding and allows them to develop their autonomy regarding food.

The development and maintenance of motivation in both the child and the parents are key aspects of the intervention. Parents are encouraged to use brainstorming strategies to enhance their children's motivation. Based on their proposition, we present motivational models to enrich their own strategies. The reward system with a point chart is explained to parents, including setting goals and rewards to build extrinsic motivation. Enhancing a child's knowledge about nutrition is also a key factor in developing intrinsic motivation. A similar brainstorming exercise is also proposed to identify strategies to prevent stress and conflict in food situations and ensure long-term support to maintain parental motivation and engagement.

Change acceptance

Developing a child's flexibility will help reduce rigidity regarding food. We work with families to create situations of novel experiences with slight variations to build successful approaches. This does not involve directly introducing a new food but rather allowing greater flexibility in mealtime behaviors (changing utensils, containers, plate presentation, or seating arrangements), which will then help reduce rigidity when facing new foods. We then propose diversification strategies using widely utilized methods such as "the path to the mouth" for progressive exposure to nonpreferred food, chaining or food pairing, food handling, and food description with neutral words. The initial step of change acceptance is a necessary prerequisite for implementing food diversification strategies and progressive oral sensory habituation.

Of the 26 eligible families, 18 (69%) participated in the trial. Of the 18 participating families, we noticed a strong commitment, with a drop-out rate of 11% between the two sessions. Both parents were invited to participate, but we observed lower involvement from fathers, with a majority of mothers attending sessions alone (83%).

We included the parents of 18 ARFID patients with a mean age of 11 years [5.12, 14.73] (n = 17 with sensory sensitivity impairment, n = 1 with lack of interest in food; n = 0 with fear of aversive consequences of food intake). The ARFID patients included in the group were mostly girls (60%), with a mean BMI percentile = 16 (± 8.5 SD), a mean age at first symptoms = 2.5 (± 2.3 SD) and a mean age at diagnosis = 8.3 (± 2.7 SD). Associated psychiatric comorbidities were found: n = 4 ASD (22%) and n = 3 anxiety disorders (17%). At inclusion, 10 patients benefited from outpatient individual follow-up for ARFID (n = 4 CBT, n = 3 speech-language pathologists, n = 3 both).

At first admission, the patients exhibited markedly severe illness, with a mean CGI-S score of 5.56 (± 0.91). Two months after admission, the CGI-S score significantly improved, with a mean reduction of 4.39 (± 1.24 SD). ANOVA was performed to compare the mean CGI-S scores at admission, before admission and two months after admission, with a significant effect (F value = 6.682, p < 0.003). Post hoc analyses using Tukey's honest significant difference (HSD) test indicated that CGI-S scores at two months after admission differed significantly from those at admission (p_adj=0.003) and before admission (p_adj=0.02), but no significant differences were found between CGI-S scores at admission and before admission (Fig. 2.a). At the evaluation before the group intervention, patients already showed a slight improvement in their symptoms from the initial admission (CGI-I = 3.44 (± 0.62)). Two months after the group intervention, patients showed greater improvement (CGI-I = 2.61 (± 0.77), p = 0.001).

The assessment of collaboration between the participants and the professionals (HAQ-11S) revealed a significant improvement (t test=-4.28, p < .001) before (mean = 35.83 ± 4.27 SD) and after (mean = 41.17, ± 3.11 SD) the intervention (Fig. 2.b). The satisfaction questionnaire (CSQ-8) also showed a significant improvement (t test=-4.65, p < .001) before (mean = 24.83 ± 3.91 SD) and after (mean = 29.72 ± 2.14 SD) the intervention (Fig. 2.c).

Our qualitative evaluation questionnaire identified seven main satisfaction themes after the two training group sessions: understanding of symptoms, improvement in letting go, sense of parental competence, enhancement of communication with the child and surroundings, reduction in feelings of guilt, renewal and maintenance of motivation, and decrease in isolation.

These preliminary findings and initial sessions allowed us to validate the feasibility of our protocol with good acceptability (69% of participants from eligible families) and helped to better identify the needs of families to improve care strategies for children with ARFID.

As many patients with ARFID are not able to access any care or appropriate care, there is a need to design and evaluate different novel strategies (2). For a long time, there was a lack of evidence-based recommendations regarding treatment for people with ARFID (24), but it is slowly changing (25). We observe a growing body of literature on the development of group care strategies for families of patients with ARFID (12, 18, 19) and high parental engagement in response to the need to address the limited supply of individual care and the need for validated strategies. We thus provide arguments for a two-day training group for parents of patients with ARFID delivered by a multidisciplinary team (including psychologists, nurse practitioners, dieticians, speech language therapists and psychiatrists).

In our population, we observed a long duration of untreated disease in patients with ARFID, with a mean age at diagnosis = 8.3 years (± 2.7 SD) and a mean age at first symptoms = 2.5 years (± 2.3 SD). Delays in diagnosis and treatment impact prognosis (26) and can lead to inappropriate parenting strategies, and increased parental pressure has been reported to increase food aversion (27, 28). Our parental group training aims to improve parents' knowledge and help them develop novel strategies at home to increase food intake, reducing coercive parenting.

The intervention was associated with high levels of parental satisfaction with the quantitative and qualitative parent feedback measures. We found improved collaboration between parents and professionals on the HAQ-11S questionnaire and improved satisfaction on the CSQ-8 questionnaire (p < .001). Qualitative data suggest decreased parental isolation and an enhanced sense of parental competence. Better collaboration with professionals to develop parental executive functions could help to renew and sustain motivation.

A slight improvement in patients’ symptoms (CGI-I) was reported after the first admission and diagnosis assessment, even before group intervention, suggesting benefits from initial individual therapy after appropriate diagnosis. We also found a significant decrease in clinical severity (CGI-S) after group intervention. ARFIDs are typically reported to have rigidity in childhood (18, 29) and lack consistent motivation to engage in treatment (18). Our program aims to increase acceptance of change to increase food-related flexibility, and qualitative data suggest improved communication with children and enhanced diversification strategies. Further evaluation of our program on the long-term clinical benefits of ARFID symptoms is needed to validate parents' education group strategies for ARFID but could represent additional care strategies and help to increase parental empowerment to decrease conflict and stress related to mealtime.

Several limitations can be acknowledged: some patients benefited from individual therapy that we did not control, but group training of parents to strengthen individual treatment strategies may remain a useful complement to general improvement at home. A more specific evaluation of the symptoms of ARFID over time is also required to assess the benefit for patients over an extended period.

Our findings provide preliminary evidence for the feasibility and acceptability of a parent-based training group for pediatric ARFID, decreasing isolation, enhancing parental competence, and slightly improving patients’ symptoms. Further studies with larger sample sizes in randomized controlled trials to assess the efficacy of these treatments in enhancing food-related flexibility and ARFID symptoms are needed to develop evidence-based treatments for patients and families.

Availability of data and material

Deidentified individual participant data (including data dictionaries) will be made available, in addition to study protocols, the statistical analysis plan, and the informed consent forms. The data will be made available upon publication to researchers who provide a methodologically sound proposal for use in accordance with the agreements of the ethics committee. Proposals should be submitted to [email protected]

Human Ethics and Consent to Participate

The study was carried out in accordance with the principles of the Declaration of Helsinki. Participants’ data were studied in accordance with French regulations (MR-004), following approval by the local Robert Debré Hospital Ethics Committee (ref: CEER 2022-610ter, IRB 00006477), and all participants provided informed consent.

Funding

No funding

Acknowledgement

The completion of this work was made possible with the contributions of the Fondation Sandrine Castellotti and the Fondation de l’Avenir.

Conflict of interest

The authors declare no conflicts of interest.

Authors' contributions

LC, CP, SH, MH, FC, and AA contributed to the study conception and design and the analytical plan. LC, CP, SH, MH, FC, RD, YE, CS, and AA drafted the manuscript. LC, CP, SH, MH, FC, CS, and AA contributed to the data acquisition. All authors have read and approved the final version of the manuscript.

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Table 1. Characteristics of the ARFID patients

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You are reading this latest preprint version

Training group for parents of patients with pediatric avoidant/restricted food intake disorder sensory-based avoidance: feasibility and acceptability

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Abstract

Background

Method

Results

Discussion

Figures

INTRODUCTION

METHODS

Participants

Study design

Statistical analyses

Intervention

RESULTS

DISCUSSION

CONCLUSION

Declarations

References

Table 1

Additional Declarations

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