Personal Recovery Among People at Risk for Developing Serious Mental Health Problems: A Qualitative Systematic Review.

OBJECTIVE: Personal recovery refers to a person's pursuit of a full, meaningful life despite the potentially debilitating impact of a mental illness. An evidence base describing personal recovery among people at risk for developing a mental illness is lacking, limiting the potential for mental health services to support personal recovery. To address this gap, the authors synthesized the extant research describing personal recovery among people at risk for developing a mental illness. METHODS: A systematic search of several literature databases (MEDLINE, Embase, APA PsycInfo, Web of Science Core Collection, and Cochrane Library) was conducted to retrieve qualitative and case studies and first-person accounts. The Joanna Briggs Institute guidelines for systematic reviews were followed. Included studies reported on participants at variable risk for developing a schizophrenia spectrum, bipolar, major depressive, or borderline personality disorder. Articles were retrieved through a librarian-assisted search and through use of additional strategies (e.g., expert consultation). Abstracts were screened by the research team, and themes were developed by using thematic synthesis. RESULTS: The 36 included articles were synthesized, and six themes were generated: difficulties and challenges; establishing an understanding of, and finding ways to cope with, one's mental health challenges; reestablishing a sense of agency and personhood; receiving support from people and services, as well as restoring relationships; reestablishing hope, meaning, and purpose; and overcoming stigma and destigmatizing mental illness in others. CONCLUSIONS: These findings provide a conceptual foundation that can guide future research on personal recovery and clinical interventions that foster it among people at risk for mental illness.

Development of the Strengths, Skills, and Goals Matrix: a tool for facilitating strengths-based adolescent and young adult engagement in research.

BACKGROUND: The involvement of adolescents and young adults (AYAs) with lived experience of health and mental health conditions as partners in research is increasing given the prominence of participatory approaches to research, including patient-oriented research (POR). Much of the relevant research is conducted by graduate students. While guiding AYA engagement frameworks and models exist, the processes of partnering with AYAs in patient-oriented graduate-level research projects have not been well established. Co-developed tools and practices are required to support strengths-based, developmentally appropriate AYA-graduate student partnerships. OBJECTIVES: The objectives of this commentary are: (1) to share the processes of partnership between a graduate student and five Young Adult Research Partners (YARP), (2) to describe the co-design and implementation of the Strengths, Skills, and Goals Matrix (SSGM), a tool for facilitating strengths-based AYA engagement in research, and (3) to outline considerations for applying this tool across a variety of research contexts with patient partners. MAIN BODY: Within the YARP-graduate student partnership, the SSGM offered extensive benefits, including tangible skill development, peer mentorship, and rapport building among all members. This tool offers strategies for strengths-based engagement practices which emphasize AYAs' preferences and goals throughout POR projects. Practical recommendations and considerations for applying the SSGM within graduate-level research and beyond are described, including the importance of connecting AYAs' current (and desired) skills to specific tasks within the research project and resulting outputs. CONCLUSIONS: The SSGM has possible relevance in a variety of settings given its broadly applicable structure. Future research could explore the adaptation, application, and evaluation of the SSGM across research contexts to determine its feasibility and ease of implementation. PATIENT OR PUBLIC CONTRIBUTION: This article was conceived of and co-authored by five young adult research partners. The YARP co-designed the SSGM presented in this article, the figures, and substantially contributed to the preparation of the article.

The involvement of adolescents and young adults (AYAs) with lived experience of health and mental health conditions as partners in research is becoming more common in student research projects. Though guidelines for engaging AYAs as partners in research exist, the steps for developing meaningful AYA-student partnerships are not clearly defined. These partnerships require tools and practices that are co-developed by AYAs and students to be successful. In this commentary, we share the details of a partnership between a graduate student and five AYA research partners. Next, we describe how we developed the Strengths, Skills, and Goals Matrix (SSGM), a tool for supporting AYA engagement in research which emphasizes the capabilities and goals of each AYA partner. Finally, we outline suggestions for patient partners and research teams interested in using this tool in different settings. Within our research partnership, the SSGM helped all members build relationships, develop skills, and share their skills with one another. The SSGM focuses on the strengths of each person and allows patient partners to determine their own goals for engaging in research. Future research should explore how the SSGM works for different types of research teams or projects.

Transition readiness of youth with co-occurring chronic health and mental health conditions: A mixed methods study.

BACKGROUND: A large proportion of youth with chronic conditions have mental health comorbidities. However, the effect of these comorbidities on paediatric-adult transition readiness, and the relevance of widely used tools for measuring transition readiness, are unknown. OBJECTIVE: The objectives of this study were to describe and explore the transition readiness of youth with co-occurring chronic health and mental health conditions using a combination of quantitative data obtained from participants completing the Transition Readiness Assessment Questionnaire (TRAQ) and qualitative data. DESIGN AND PARTICIPANTS: A three-phase sequential explanatory mixed methods design was employed, with the qualitative strand taking priority. First, the TRAQ scores (range 1-5) of youth with co-occurring conditions (n = 61) enroled in a multisite randomized controlled trial were measured, followed by qualitative interviews with a sample of youth (n = 9) to explain the quantitative results. Results from both strands were then integrated, yielding comprehensive insights. RESULTS: Median TRAQ scores ranged from 2.86 on the appointment keeping subscale to 5.00 on the talking with providers subscale. The qualitative results uncovered the complexities faced by this group concerning the impact of a mental health comorbidity on transition readiness and self-management skills across TRAQ domains. The integrated findings identified a diverse and highly individualized set of strengths and challenges amongst this group that did not align with overarching patterns as measured by the TRAQ. CONCLUSIONS: This mixed methods study generated novel understandings about how youth with co-occurring conditions develop competencies related to self-care, self-advocacy and self-management in preparation for paediatric-adult service transitions. Results demonstrated the assessment of transition readiness using a generic scale does not address the nuanced and complex needs of youth with co-occurring chronic health and mental health conditions. Our findings suggest tailoring transition readiness practices for this group based on youths' own goals, symptoms, coping mechanisms and resources. PATIENT OR PUBLIC INVOLVEMENT: This study was conducted in collaboration with five young adult research partners (YARP) with lived experience transitioning from paediatric to adult health/mental health services. The YARP's contributions across study phases ensured the perspectives of young people were centred throughout data collection, analysis, interpretation and presentation of findings. All five YARP co-authored this manuscript.

"They go hand in hand": a patient-oriented, qualitative descriptive study on the interconnectedness between chronic health and mental health conditions in transition-age youth.

BACKGROUND: Transition-age youth (TAY) with chronic health conditions frequently experience co-occurring mental health conditions. However, little is known about the perspectives of TAY with co-occurring diagnoses preparing to exit pediatric health and mental health services. Research is needed to understand the impact of a mental health condition on transition readiness and self-management in TAY with chronic health conditions. METHODS: TAY (aged 16-20 years) with co-occurring chronic health and mental health conditions were recruited in Alberta, Canada. Nine semi-structured individual interviews were completed by phone or videoconference, and transcribed verbatim. Guided by qualitative description, we analyzed the data using thematic analysis in partnership with five young adults with lived experience in the health/mental health systems. RESULTS: Participants shared their experiences living with simultaneous physical and mental health concerns and preparing for transition to adult care. Our analysis revealed three overarching themes: 1) "they're intertwined": connections between chronic health and mental health conditions in TAY, 2) impact of mental health on transition readiness and self-management, and 3) recommendations for service provision from the perspectives of TAY. CONCLUSIONS: Our findings highlighted the myriad ways in which physical and mental health are connected as TAY prepare for service transitions using specific examples and powerful metaphors. TAY endorsed the importance of providers discussing these connections in routine clinical care. Future research should involve co-designing and evaluating educational material addressing this topic with diverse TAY, caregivers, and service providers.

Validation of the Transition Readiness Assessment Questionnaire (TRAQ) 5.0 for use among youth in mental health services.

BACKGROUND: Among youth with psychiatric disorders, the transition from child to adult mental health services is a period of vulnerability to discontinuous care and service disengagement. Regular assessment of transition readiness has been identified as a core component of transition planning, contributing to successful care transitions. The Transition Readiness Assessment Questionnaire (TRAQ) 5.0 is a 20-item questionnaire that measures transition readiness in youth preparing to transition to adult care. Although the TRAQ has been validated and used across many health settings, it has not been validated in youth with primarily mental health concerns. The objective of this study was to validate the TRAQ for use among youth accessing mental health services. METHODS: This study used the Longitudinal Youth in Transition Study baseline cohort, which consists of 237 clinically referred youth (aged 16-18 years) receiving outpatient mental health treatment. Psychometric evaluation of the TRAQ 5.0 included confirmatory factor analysis (CFA), assessment of internal consistency, testing convergent validity using the Dimensions of Emerging Adulthood (IDEAS) and Difficulty in Emotional Regulation (DERS) scales, criterion validity using a question on whether the participant had talked about transition with their clinician and known-group testing based on age. RESULTS: The CFA indicated adequate fit of the five-factor TRAQ structure. The overall scale (=.86) and three of the subscales demonstrated adequate internal consistency. As hypothesized, overall TRAQ scores were higher for youth who had discussed transition and those aged 18. Small correlations were found between the overall TRAQ score and measures of developmental maturity (IDEAS) and emotional awareness (DERS); however, certain subscales did not demonstrate correlation with these constructs. CONCLUSIONS: The TRAQ 5.0 appears to be valid tool to assess the transition readiness of youth in outpatient mental health services. Additional work needs determine whether findings are similar among specific mental health conditions, including substance use disorders and psychotic disorders.

Association between transition readiness and mental health comorbidity in youth with chronic health conditions.

PURPOSE: Between 33 and 59% of youth with chronic health conditions experience mental health conditions. Transition readiness, or the acquisition of knowledge and self-management skills, facilitates successful transition to adult care. Transition readiness among youth with co-occurring chronic health and mental health conditions has not been explored. DESIGN AND METHODS: This study used a sample of 201 patients (aged 16-21) with chronic conditions. All patients completed the Transition Readiness Assessment Questionniare (TRAQ) and were grouped into Cohort A: chronic health conditions only (n = 140), and Cohort B: co-occurring chronic health and mental health conditions (n = 61). A quantile regression at the 50th percentile was conducted to examine associations between TRAQ score and mental health comorbidity, age, gender and immigration status. RESULTS: The median TRAQ score for Cohort A was 3.87 (IQR 0.84) versus 4.00 (IQR 0.87) for Cohort B. Our analysis revealed that having a mental health comorbidity (b = 0.402, p = 0.034), being older in age (b = 0.540, p = 0.004) and being female (b = 0.388, p = 0.001) were associated with higher overall TRAQ score. CONCLUSIONS: The presence of a mental health comorbidity was associated with greater transition readiness as measured by the TRAQ in our sample. Future research should explore why youth with co-occurring chronic health and mental health conditions exhibit greater transition readiness. PRACTICE IMPLICATIONS: Youth with co-occurring chronic health and mental health conditions may develop transition readiness as a result of coping with mental health challenges. Practitioners could invite them to reflect on how their physical and mental health are related and affect their level of preparedness for adult care.

Community based Primary Care for Adolescents and Young Adults Transitioning From Pediatric Specialty Care: Results from a Scoping Review.

BACKGROUND: Ongoing primary care during adolescence is recommended by best practice guidelines for adolescents and young adults (AYAs; ages 12-25) with chronic conditions. A synthesis of the evidence on the roles of Primary Care Physicians (PCPs) and benefits of primary care is needed to support existing guidelines. METHODS: We used Arksey and O'Malley's scoping review framework, and searched databases (MEDLINE, EMBASE, PsychINFO, CINAHL) for studies that (i) were published in English between 2004 and 2019, (ii) focused on AYAs with a chronic condition(s) who had received specialist pediatric services, and (iii) included relevant findings about PCPs. An extraction tool was developed to organize data items across studies (eg, study design, participant demographics, outcomes). RESULTS: Findings from 58 studies were synthesized; 29 (50%) studies focused exclusively on AYAs with chronic health conditions (eg, diabetes, cancer), while 19 (33%) focused exclusively on AYAs with mental health conditions. Roles of PCPs included managing medications, "non-complex" mental health conditions, referrals, and care coordination, etc. Frequency of PCP involvement varied by AYAs; however, female, non-Black, and older AYAs, and those with severe/complex conditions appeared more likely to visit a PCP. Positive outcomes were reported for shared-care models targeting various conditions (eg, cancer, concussion, mental health). CONCLUSION: Our findings drew attention to the importance of effective collaboration among multi-disciplinary specialists, PCPs, and AYAs for overcoming multiple barriers to optimal transitional care. Highlighting the need for further study of the implementation of shared care models to design strategies for care delivery during transitions to adult care.

Pragmatism as a paradigm for patient-oriented research.

BACKGROUND: Mixed methods research studies continue to pervade the field of health care, where pragmatism as a research paradigm and patient-oriented research (POR) as an engagement strategy are combined to strengthen the process and outcomes of the research. Pragmatists use the most appropriate research methods to address issues at hand, where complex social problems need multipronged approaches. As an emerging healthcare research strategy, POR actively engages individuals with lived experience across all stages of the research process. While POR continues to garner attention within mixed-methods research designs, there is a paucity of literature that considers POR in relation to pragmatism. OBJECTIVE: As POR grows in popularity within the field of health care, there is a need to explore the theoretical and epistemological alignment with pragmatism and the implications to research. METHODS: To address this need, we provide a critical review of the literature to examine the synergies between POR and pragmatism, and argue for the adoption of pragmatism as a paradigm for conducting POR. MAIN RESULTS: This article begins with a discussion of the philosophical underpinnings informing the pragmatic paradigm. It then identifies key alignments between POR and pragmatism across three intersecting concepts: democratic values, collaborative approaches to problem-solving and the pursuit of social justice. DISCUSSION AND CONCLUSIONS: Reflecting on our experiences engaging with patient partners in a mixed-methods POR study titled READY2Exit, we illustrate the relevance of pragmatism to POR by applying these concepts to practice. Implications and considerations for conducting POR within the pragmatic paradigm are also described. PATIENT OR PUBLIC CONTRIBUTION: This paper provides a critical review of the literature and did not directly involve patients or the public. The authors reflected on their experiences collaborating with five young adult patient partners in the READY2Exit study (case exemplar described in this article) to demonstrate the relevance of the pragmatic paradigm to POR. We acknowledge and thank the young adult patient partners for their contributions to the research, for encouraging us to think critically about patient engagement in research, and for sharing their experiences.

Recommendations for youth engagement in Canadian mental health research in the context of COVID-19.

The COVID-19 pandemic has resulted in reduced access to in-person mental health services, and a shift to virtual platforms. Youth may be uniquely impacted by physical distancing requirements during the pandemic, including limited socialization opportunities, closures of educational institutions, a lack of meaningful extracurricular activities and adverse implications on key developmental milestones. Due to the potential impact of COVID-19 on youth well-being, the need to rapidly transform services to be accessible, and the potential risks associated with this rapid transformation, it is imperative that youth continue to be engaged in research and service development. Young people's perspectives, strengths and skills need to be considered to effectively adapt the delivery of mental health services. Continuing to center youth engagement in mental health research throughout the pandemic can ensure research questions, programs, and services align with the needs and preferences of youth. In this commentary, we pose three recommendations for conducting youth-engaged mental health research during the pandemic, including adapting youth engagement strategies when rapid decisions must be made, the use of tools for virtual engagement, and suggestions for evaluating youth engagement practices. These strategies and principles may be applicable to other scenarios where rapid research or system transformation would benefit from youth engagement, such as time-limited child research by trainees (e.g., dissertations) or natural disasters.

La pandémie de la COVID-19 a entraîné un accès réduit aux services de santé mentale en personne, et une transition aux plateformes virtuelles. Les jeunes peuvent être particulièrement touchés par les consignes de distanciation physique durant la pandémie, notamment par les occasions limitées de socialisation, la fermeture des institutions éducatives, le manque d'activités parascolaires et les implications néfastes sur les principales étapes du développement. Étant donné l'impact potentiel de la COVID-19 sur le bien-être des jeunes, le besoin de transformer rapidement les services pour les rendre accessibles, et les risques potentiels associés à cette transformation rapide, il est impératif que les jeunes continuent de participer à la recherche et au développement des services. Les perspectives, les forces et les talents des jeunes gens doivent être pris en considération afin d'adapter efficacement la prestation des services de santé mentale. Continuer d'axer la participation des jeunes dans la recherche en santé mentale durant la pandémie peut faire en sorte que les questions, les programmes et les services de la recherche correspondent aux besoins et aux préférences des jeunes. Dans le présent commentaire, nous énonçons trois recommandations pour mener une recherche en santé mentale avec la participation des jeunes durant la pandémie, notamment adapter les stratégies de participation des jeunes lorsqu'il faut prendre des décisions rapidement, l'utilisation des outils de participation virtuelle, et des suggestions pour évaluer les pratiques de participation des jeunes. Ces stratégies et principes peuvent s'appliquer à d'autres scénarios quand la recherche rapide ou la transformation du système bénéficierait de la participation des jeunes, comme la recherche sur les enfants en temps limité par les stagiaires (p. ex., dissertation) ou des catastrophes naturelles.

Primary care during the transition to adult care for adolescents involved with pediatric specialty services: a scoping review protocol.

BACKGROUND: Of the 15-20% of youth in North America affected by a chronic health condition (e.g., type 1 diabetes, cystic fibrosis) and/or mental health or neurodevelopmental disorder (e.g., depression, eating disorder, Attention Deficit-Hyperactivity Disorder), many often require lifelong specialist healthcare services. Ongoing primary care during childhood and into young adulthood is recommended by best practice guidelines. To date, it is largely unknown if, how, and when primary care physicians (PCPs; such as family physicians) collaborate with specialists as AYAs leave pediatric-oriented services. The proposed scoping review will synthesize the available literature on the roles of PCPs for AYAs with chronic conditions leaving pediatric specialty care and identify potential benefits and challenges of maintaining PCP involvement during transition. METHODS: Arksey and O'Malley's original scoping review framework will be utilized with guidance from Levac and colleagues and the Joanna Briggs Institute. A search of databases including MEDLINE (OVID), EMBASE, PsycINFO, and CINAHL will be conducted following the development of a strategic search strategy. Eligible studies will (i) be published in English from January 2004 onwards, (ii) focus on AYAs (ages 12-25) with a chronic condition(s) who have received specialist services during childhood, and (iii) include relevant findings about the roles of PCPs during transition to adult services. A data extraction tool will be developed and piloted on a subset of studies. Both quantitative and qualitative data will be synthesized. DISCUSSION: Key themes about the roles of PCPs for AYAs involved with specialist services will be identified through this review. Findings will inform the development and evaluation of a primary-care based intervention to improve transition care for AYAs with chronic conditions.

Strategies for improving primary care for adolescents and young adults transitioning from pediatric services: perspectives of Canadian primary health care professionals.

BACKGROUND: Family physicians and other members of the primary health care (PHC) team may be ideally positioned to provide transition care to adolescents and young adults (AYAs; aged 12-25 years) exiting pediatric specialty services. Potential solutions to well-known challenges associated with integrating PHC and specialty care need to be explored. OBJECTIVE: To identify strategies to transition care by PHC professionals for AYAs with chronic conditions transitioning from pediatric to adult-oriented care. METHODS: Participants were recruited from six Primary Care Networks in Calgary, Alberta. A total of 18 semi-structured individual interviews were completed, and transcribed verbatim. Data were analyzed using a qualitative description approach, involving thematic analysis. RESULTS: Participants offered a range of strategies for supporting AYAs with chronic conditions. Our analysis resulted in three overarching themes: (i) educating AYAs, families, and providers about the critical role of primary care; (ii) adapting existing primary care supports for AYAs and (iii) designing new tools or primary care practices for transition care. CONCLUSIONS: Ongoing and continuous primary care is important for AYAs involved with specialty pediatric services. Participants highlighted a need to educate AYAs, families and providers about the critical role of PHC. Solutions to improve collaboration between PHC and pediatric specialist providers would benefit from additional perspectives from providers, AYAs and families. These findings will inform the development of a primary care-based intervention to improve transitional care.

Transitions to Postsecondary Education in Young Adults with Hemoglobinopathies: Perceptions of Patients and Staff.

The transition from high school to postsecondary education can be challenging for adolescents and young adults (AYAs) with chronic health conditions. AYAs with hemoglobinopathies, including sickle cell disease, are a particularly vulnerable group whose academic performance is impacted by unpredictable disease symptoms. AYA with hemoglobinopathies may require academic accommodations to promote postsecondary success; however, accessing appropriate supports can be complicated. METHODS: Given these complexities, a multidisciplinary team in a pediatric outpatient clinic designed and implemented a standardized intervention to support AYA with hemoglobinopathies in navigating the transition to postsecondary education. A quality improvement (QI) project was initiated to support the referral of all eligible patients with hemoglobinopathies to postsecondary accessibility offices. This article will describe the development of the intervention and present key findings from qualitative interviews with patients (ages 18-19) and postsecondary accessibility office staff about the implemented resources as an initial step of an ongoing QI project. We used thematic analysis to identify themes across interviews with both groups of stakeholders. RESULTS: Key themes across both groups of interviews highlighted the benefits of the intervention, including (1) knowledge of available services, (2) registering early with appropriate documentation, and (3) self-advocacy. CONCLUSIONS: The preliminary qualitative findings validate the importance of embedding discussions about the transition to postsecondary education into routine clinic appointments for AYA with chronic health conditions. Clinical implications of this ongoing QI project for health care providers working with AYA with chronic health conditions will be shared.

Health care stakeholder perspectives regarding the role of a patient navigator during transition to adult care.

BACKGROUND: Transition to adult care represents a vulnerable period for young people with special health care needs as they navigate multiple life transitions and developmental issues. Patient navigators are a promising intervention designed to facilitate the transfer from pediatric to adult care. However, consistent definitions, key tasks, roles and responsibilities are lacking in guiding the scope of practice and the implementation of patient navigators. METHODS: Fundamental qualitative description was utilized in this study to identify perceptions from health care providers about implementing a patient navigator service for young people with special health care needs in transition to adult care. A purposive sample of health care providers with a variety of backgrounds within pediatric and adult systems in Alberta, Canada were recruited. Semi-structured interviews with participants were analyzed using thematic analysis to inductively identify perceptions regarding the role of patient navigators. RESULTS: A total of 43 health care providers highlighted the need for a patient navigator service to encompass 4 key stages for young people with special health care needs transitioning from pediatric to adult services: (1) identification of young people with special health care needs and families requiring support, (2) preparation for transfer, (3) health system navigation and, (4) post-transfer support. CONCLUSIONS: The results of this qualitative study provide guidance for the development of patient navigator interventions for young people with special health care needs, as well as provide support for current transition services offered across Canada.

Impact of a transition program with navigator on loss to follow-up, medication adherence, and appointment attendance in hemoglobinopathies.

BACKGROUND: Transition from pediatric to adult care is a period of high risk for loss to follow-up, morbidity, and mortality in adolescents and young adults (AYA) with hemoglobinopathies. The purpose of this study was to determine whether a transition program with transition navigator (TN) reduced loss to follow-up and hospitalizations and improved medication adherence and appointment attendance compared with an unstructured transfer. PROCEDURE: A retrospective observational study compared all AYA with hemoglobinopathies who turned 18 one year prior to (n = 51) and one year after (n = 61) the initiation of the transition program. Data from one year prior to last pediatric appointment and one year following first adult appointment were collected from each patient. RESULTS: The transition program with TN reduced loss to follow-up from 29% to 7% (P = 0.034). A greater proportion of patients in the transition cohort maintained or improved adherence to hydroxyurea or iron chelation to ≥4 days/week; exposure to the program was independently associated with such improvement (P = 0.047). A trend toward improvement or maintenance of ≥90% attendance to appointments was observed (P = 0.096). Frequency of hospitalization was not significantly different between the two cohorts (P = 0.985). CONCLUSIONS: A transition program with TN significantly reduced loss to follow-up, and significantly improved and maintained fair to good medication adherence. Further analysis of economic benefit and patient satisfaction will be conducted.

Family-based treatment with transition age youth with anorexia nervosa: a qualitative summary of application in clinical practice.

BACKGROUND: Family based treatment (FBT) has been empirically investigated in adolescents between the ages of 12 and 19 years of age. Although parental control over eating symptoms and the weight gain process are temporary and necessary due to serious medical complications, FBT may be developmentally inappropriate when working with older adolescents. To date, there are no studies identifying how the principles of this model are used differentially across different stages of adolescence. This study aimed to identify how clinicians informed by FBT employ this model with transition age youth (TAY) (16-21) with an eating disorder. METHODS: Using content analysis, seven individual interviews and six focus groups were conducted with 34 clinicians from specialized Eating Disorder Treatment programs across Ontario, Canada. RESULTS: Participants consistently reported modifying FBT to increase its developmental appropriateness with TAY in the following ways: working more collaboratively with the patient, increasing individual time spent with the patient prior to the family meeting, providing greater opportunities for the individual to practice eating without parental support and introducing relapse prevention in the latter phase of the treatment. CONCLUSIONS: In all adaptations of the model, participants in focus groups and individual interviews cited the age of the individual with the eating disorder, their level of autonomy and independence in all areas of their lives, and their pending transfer of care from paediatric to adult eating disorder programs as main factors that influenced the modification of FBT with TAY. While adaptations were made across all three phases of FBT, adherence to the model progressively declined over the course of treatment with adaptations increasing significantly in the later phases. Future research is needed to evaluate the effectiveness of an adapted version of FBT with TAY.

Chorda tympani nerve function in children: relationship to otitis media and body mass index.

OBJECTIVE/HYPOTHESIS: A relationship between acute otitis media and elevated body mass index has recently been reported. Intriguingly, it was postulated that this relationship may result from altered chorda tympani nerve function impacting taste sensation and eating habits. We sought to test this directly by measuring chorda tympani nerve function in children with and without a previous history of acute otitis media and to determine the relationship to body mass index. STUDY DESIGN: Retrospective cohort study. METHODS: Institutional research ethics board approval was obtained. Study participants included 142 children (5-18 years of age) who were recruited from an otolaryngology outpatient clinic at a tertiary academic pediatric hospital between May and August 2009. Children were excluded if they were not able to communicate effectively, younger than age 5, or had developmental disabilities. Body mass index was calculated and the history of previous otologic disease carefully elicited from the caregivers. Electrogustometric threshold, a validated measure of chorda tympani function, was obtained bilaterally in each child. Children were divided into cohorts based on the number of acute otitis media episodes, and electrogustometry thresholds were compared between cohorts. RESULTS: Electrogustometric thresholds were successfully obtained in all children. There was no significant relationship between chorda tympani nerve function and history of acute otitis media. Similarly, there was no significant association between the history of otitis media and body mass index. CONCLUSION: This study did not demonstrate any effect of previous acute otitis media history on chorda tympani nerve function. Furthermore, it did not demonstrate a relationship between acute otitis media and elevated body mass index. This is counter-evidence to the previous hypothesis that increasing acute otitis media is responsible for increasing childhood obesity through alteration in chorda tympani nerve function.

Electrogustometric assessment of taste after otologic surgery in children.

OBJECTIVES/HYPOTHESIS: Long term taste dysfunction after otologic surgery has never been characterized in children. The aim of this study is to determine the rates of gustatory dysfunction in normal and postotologic surgery in children. STUDY DESIGN: Cross-sectional study. METHODS: One hundred sixty children visiting a tertiary pediatric otolaryngology clinic, 4 to 18 years of age, were recruited. Surgical groups included patients who had undergone tympanoplasty, combined approach mastoidectomy, modified radical mastoidectomy, and unilateral and bilateral cochlear implantation. They were then tested using a Rion TR-06 electrogustometer (Sensonics, Inc., Haddon Heights, NJ) using a standardized protocol to assess chorda tympani nerve function. An abnormal gustometry result was defined as any recording of > or =16 dB or a difference of 6 dB between ears. RESULTS: The control group had a 9% (5/61) abnormal electrogustometric threshold rate. Rates of dysfunction after surgery were: tympanoplasty (27%, 4/15), combined approach mastoidectomy (30%, 11/29), modified radical mastoidectomy (50%, 4/8). Unilateral cochlear implantation yielded a 26% (7/27) per ear risk of dysfunction, whereas bilateral cochlear implantation had a 5% (2/40) per ear risk. CONCLUSIONS: There is a 9% baseline level of electrogustometric abnormality in the pediatric population, which suggests a subclinical level of gustatory dysfunction. Normal electrogustometry was found in 50% of children after modified radical mastoidectomy, suggesting a degree of neural regenerative capacity. Finally, cochlear implantation, using newer surgical techniques (in the bilateral cochlear implant group) has a low risk for causing gustatory dysfunction, reducing concerns over the safety profile of bilateral cochlear implantation.