Characteristics of chronic intestinal failure in the USA based on analysis of claims data.

BACKGROUND: This study investigated the prevalence, characteristics, and management of patients with chronic intestinal failure (CIF) in the United States in 2012-2020, based on parenteral support (PS) prescription claims and healthcare utilization. METHODS: Patients with CIF were identified from the Integrated DataVerse® claims database if they had at least two PS prescriptions within 6 months and a relevant diagnosis. Analysis included prevalence and characteristics of patients with CIF, their travel distance to receive PS prescriptions, and the distribution of PS providers and their prescribing history. RESULTS: Up to 24,048 patients with CIF were identified, equivalent to 75 patients per million. CIF affected people of all ages, being more prevalent in women than in men. Many providers signed PS orders for small patient groups over short time periods, whereas few providers signed PS orders for large patient groups long term, indicating a lack of centralization. The distribution of PS providers suggested a disparity in healthcare coverage in rural vs urban areas, leading to patients traveling considerable distances to receive PS prescriptions. This may be exacerbated by a decline of providers with expertise in CIF and nutrition. CONCLUSIONS: Healthcare disparities for patients with CIF have likely been obscured by the lack of CIF-specific diagnostic and procedure codes, obliging providers to code for their patients under other codes. Effective policy changes, including centralized care, revision of reimbursement models, and expansion of nutrition-focused education in addition to the newly introduced International Classification of Diseases codes, are needed to provide the best care for patients.

Disseminating Knowledge in Intestinal Failure: Initial Report of the Learn Intestinal Failure Tele-ECHO (LIFT-ECHO) Project.

BACKGROUND: Intestinal failure (IF) is defined as an ultrarare disease, with an estimated prevalence of ∼25,000 cases in the US. There is a suspicion of disparities in outcomes in IF care, likely related to widespread lack of expertise. The Extension for Community Healthcare Outcomes (ECHO) model originally described by Dr Sanjeev Arora has been used to disseminate knowledge and best practices in many chronic diseases to improve outcomes. We examined our initial experience with using the ECHO model to disseminate learning in IF. METHOD: This is a retrospective review of the launch, growth, and geographic reach of the Learn Intestinal Failure TeleECHO (LIFT-ECHO) program using prospectively collected data. RESULTS: The LIFT-ECHO program has achieved significant geographic reach and clinician engagement. The program has reached close to two-thirds of the states in the US and several countries outside. Clinician engagement in the learning program appears to be growing exponentially. CONCLUSION: It is feasible to use the ECHO model to disseminate knowledge in managing a rare disease like IF while maintaining fidelity to the proven model. Studies are underway to demonstrate direct benefit to patients.

The Oley Foundation and Consumer Support Groups.

Patients with intestinal failure (IF) often require home parenteral and/or enteral nutrition (HPEN). There are many complications associated with both IF and the use of HPEN, including infection and intolerance. Psychosocial effects, such as depression, isolation, fatigue, anxiety, financial stress, are also associated with IF and HPEN and can be difficult to address. Support groups offer patients and caregivers the opportunity to talk to and learn from others who have had similar experiences. The Oley Foundation, a nonprofit organization for HPEN consumers, caregivers, and clinicians, fulfills the role of a traditional support group while offering many other resources and programs.

Distinctive trajectory groups of mental health functioning among assertive community treatment clients: an application of growth mixture modelling analysis.

OBJECTIVE: Assertive community treatment (ACT) studies that have used conventional, statistical growth modelling methods have not examined different trajectories of outcomes or covariates that could influence different trajectories, even though heterogeneity in outcomes has been established in other research on severe mental illness. The purpose of our study was to examine the general trend in mental health functioning of ACT clients over a 2-year follow-up time period, to discover groups of ACT clients with distinctive longitudinal trajectories of mental health functioning, and to examine if some of the key sociodemographic and illness-related factors influence group membership. METHOD: A 2-year, prospective, within-subjects study of 216 ACT clients within southern Ontario, collected functional outcome data at baseline and 12 and 24 months using the Colorado Client Assessment Record. Baseline covariates included sex, primary diagnosis, number of comorbidities, hospitalization history, and duration of illness. Growth mixture modelling (GMM) was used to examine trajectories. RESULTS: Clinical staff assessments of ACT clients showed a statistically significant improvement in functioning and 84% achieved successful community tenure. GMM analysis identified 2 classes of ACT clients: class 1 (79.63% of clients) experienced lower and stable overall functioning, and class 2 (20.37%) showed a better baseline functioning score and improvement in the overall functioning over time. Class membership was predicted by the number of comorbidities and diagnosis. CONCLUSIONS: Our study suggests general stability in overall functioning for the sampled ACT clients over 2 years, but significant heterogeneity in trajectories of functioning.

Objectif : Les études sur le traitement communautaire dynamique (TCD) qui ont utilisé des méthodes de modèle de croissance statistiques traditionnelles n'ont pas examiné les différentes trajectoires des résultats ou covariantes qui pourraient influencer les différentes trajectoires, même si l'hétérogénéité des résultats a été établie dans d'autres recherches sur la maladie mentale grave. Le but de notre étude était d'examiner la tendance générale du fonctionnement de la santé mentale chez des clients de TCD sur une période de suivi de 2 ans, afin de découvrir des groupes de clients de TCD ayant des trajectoires longitudinales distinctes du fonctionnement de la santé mentale et d'examiner si certains des facteurs sociodémographiques clés et liés à la maladie influencent l'adhésion au groupe. Méthode : Une étude prospective sur 2 ans intra-sujets de 216 clients de TCD du sud de l'Ontario a recueilli des données de résultat fonctionnel au départ et à 12 et 24 mois, à l'aide du registre d'évaluation des clients du Colorado. Les covariantes de départ incluaient le sexe, le diagnostic primaire, le nombre de comorbidités, les antécédents d'hospitalisation, et la durée de la maladie. Le modèle de croissance à mélange de distributions (MCMD) a servi à examiner les trajectoires. Résultats : Les évaluations cliniques du personnel des clients de TCD ont indiqué une amélioration statistiquement significative du fonctionnement et 84 % ont atteint un statut d'occupation réussie dans la communauté. L'analyse du MCMD a identifié 2 classes de clients de TCD : la classe 1 (79,63 % des clients) a connu un fonctionnement général plus faible et stable, et la classe 2 (20,37 %) a obtenu un meilleur score de fonctionnement au départ et une amélioration du fonctionnement général avec le temps. L'adhésion à la classe était prédite par le nombre de comorbidités et le diagnostic. Conclusions : Notre étude suggère une stabilité générale du fonctionnement global pour les clients de TCD échantillonnés sur 2 ans, mais une hétérogénéité significative des trajectoires du fonctionnement.

Is telepsychiatry equivalent to face-to-face psychiatry? Results from a randomized controlled equivalence trial.

OBJECTIVE: The use of interactive videoconferencing to provide psychiatric services to geographically remote regions, often referred to as telepsychiatry, has gained wide acceptance. However, it is not known whether clinical outcomes of telepsychiatry are as good as those achieved through face-to-face contact. This study compared a variety of clinical outcomes after psychiatric consultation and, where needed, brief follow-up for outpatients referred to a psychiatric clinic in Canada who were randomly assigned to be examined face to face or by telepsychiatry. METHODS: A total of 495 patients in Ontario, Canada, referred by their family physician for psychiatric consultation were randomly assigned to be examined face to face (N=254) or by telepsychiatry (N=241). The treating psychiatrists had the option of providing monthly follow-up appointments for up to four months. The study tested the equivalence of the two forms of service delivery on a variety of outcome measures. RESULTS: Psychiatric consultation and follow-up delivered by telepsychiatry produced clinical outcomes that were equivalent to those achieved when the service was provided face to face. Patients in the two groups expressed similar levels of satisfaction with service. An analysis limited to the cost of providing the clinical service indicated that telepsychiatry was at least 10% less expensive per patient than service provided face to face. CONCLUSIONS: Psychiatric consultation and short-term follow-up can be as effective when delivered by telepsychiatry as when provided face to face. These findings do not necessarily mean that other types of mental health services, for example, various types of psychotherapy, are as effective when provided by telepsychiatry.

Integrating knowledge generation with knowledge diffusion and utilization: a case study analysis of the Consortium for Applied Research and Evaluation in Mental Health.

OBJECTIVE: Knowledge diffusion and utilization (KDU) have become a key focus in the health research community because of the limited success to date of research findings to inform health policies, programs and services. Yet, evidence indicates that successful KDU is often predicated on the early involvement of potential knowledge users in the conceptualization and conduct of the research and on the development of a "partnership culture". This study describes the integration of KDU theory with practice via a case study analysis of the Consortium for Applied Research and Evaluation in Mental Health (CAREMH). METHODS: This qualitative study, using a single-case design, included a number of data sources: proposals, meeting minutes, presentations, publications, reports and curricula vitae of CAREMH members. RESULTS: CAREMH has adopted the following operational strategies to increase KDU capacity: 1) viewing research as a means and not as an end; 2) bringing the university and researcher to the community; 3) using participatory research methods; 4) embracing transdisciplinary research and interactions; and 5) using connectors. Examples of the iterative process between researchers and potential knowledge users in their contribution to knowledge generation, diffusion and utilization are provided. CONCLUSIONS: This case study supports the importance of early and ongoing involvement of relevant potential knowledge users in research to enhance its utilization potential. It also highlights the need for re-thinking research funding approaches.

Caring for seriously mentally ill patients. Qualitative study of family physicians' experiences.

OBJECTIVE: To examine family physicians' experiences in caring for patients with serious mental illness and their expectations of a shared mental health care (SMHC) model. DESIGN: Qualitative method of in-depth interviews. SETTING: London, Ont. PARTICIPANTS: Purposive sample of 11 full-time family physicians providing ongoing care for patients with serious mental illness. METHOD: Eleven interviews were conducted to explore family physicians' experiences. All interviews were audiotaped and transcribed verbatim. Analysis was done using a constant comparative approach and was carried out concurrently rather than sequentially. Researchers read all interview transcripts independently before comparing and combining their analyses. Final analysis involved examining all interviews together to discover relationships between and among emerging themes. MAIN FINDINGS: Findings reflected three main themes: what family physicians perceive they bring to care of seriously mentally ill patients (i.e., whole-person approach to care); challenges family physicians face in participating in shared care of these patients (i.e., communication and access issues); and family physicians' expectations of a SMHC model (i.e., guidance and feedback). CONCLUSION: As seriously mentally ill patients are moved out of institutions, the need for an effective and efficient SMHC model becomes imperative. Our findings suggest that family physicians could be an important part of SMHC models but only if systemic barriers are removed and collaborative practice is encouraged.