Exploring the use of individualised patient-reported outcome measures in eating disorders: Validation of the Psychological Outcome Profiles.

RATIONALE: Psychotherapies for eating disorders (EDs) are routinely assessed using standardised patient-reported outcome measures (PROMs). PROMs have been criticised for their lack of patient centeredness and clinical utility. The Psychological Outcome Profiles (PSYCHLOPS) is an individualised PROM that allows patients to specify their own outcomes. AIMS: (1) To validate the use of the PSYCHLOPS in ED treatment, and (2) to identify patient concerns beyond those measured by common ED PROMs. METHODS: Two hundred and seventy-eight emerging adult patients, presenting with a first-episode ED (aged 16-25, illness duration <3 years) completed the PSYCHLOPS and two standardised ED PROMs (the EatingDisorder Examination Questionnaire [EDE-Q] and the Clinical Impairment Assessment Questionnaire [CIA]) at four time points across 12 months. Psychometrics of the PSYCHLOPS were assessed quantitatively against the EDE-Q and CIA. Content analysis assessed unique patient concerns identified by PSYCHLOPS. RESULTS: The PSYCHLOPS had adequate to good psychometric properties. A total of 53.3% of participants reported a concern not addressed by the EDE-Q or the CIA, the most common being depression/anxiety, academic problems, treatment concerns and disturbed sleep. DISCUSSION: PROMs can be complemented by the PSYCHLOPS to identify problems specific to an individual's context. As ED patients are typically ambivalent about change, understanding their concerns is vital in building motivation for change.

Assessing the impact of First Episode Rapid Early Intervention for Eating Disorders on duration of untreated eating disorder: A multi-centre quasi-experimental study.

BACKGROUND: Duration of untreated eating disorder (DUED), that is, the time between illness onset and start of first evidence-based treatment, is a key outcome for early intervention. Internationally, reported DUED ranges from 2.5 to 6 years for different eating disorders (EDs). To shorten DUED, we developed FREED (First Episode Rapid Early Intervention for EDs), a service model and care pathway for emerging adults with EDs. Here, we assess the impact of FREED on DUED in a multi-centre study using a quasi-experimental design. METHODS: Two hundred and seventy-eight patients aged 16-25, with first episode illness of less than 3 years duration, were recruited from specialist ED services and offered treatment via FREED. These were compared to 224 patients, of similar age and illness duration, seen previously in participating services (treatment as usual [TAU]) on DUED, waiting times and treatment uptake. RESULTS: FREED patients had significantly shorter DUED and waiting times than TAU patients. On average, DUED was reduced by ∼4 months when systemic delays were minimal. Furthermore, 97.8% of FREED patients took up treatment, versus 75.4% of TAU. DISCUSSION: Findings indicate that FREED significantly improves access to treatment for emerging adults with first episode ED. FREED may reduce distress, prevent deterioration and facilitate recovery.

The First Episode Rapid Early Intervention for Eating Disorders - Upscaled study: Clinical outcomes.

BACKGROUND: First Episode Rapid Early Intervention for Eating Disorders (FREED) is a service model and care pathway for emerging adults aged 16 to 25-years with a recent onset eating disorder (ED) of <3 years. A previous single-site study suggests that FREED significantly improves clinical outcomes compared to treatment-as-usual (TAU). The present study (FREED-Up) assessed the scalability of FREED. A multi-centre quasi-experimental pre-post design was used, comparing patient outcomes before and after implementation of FREED in participating services. METHODS: FREED patients (n = 278) were consecutive, prospectively ascertained referrals to four specialist ED services in England, assessed at four time points over 12 months on ED symptoms, mood, service utilization and cost. FREED patients were compared to a TAU cohort (n = 224) of similar patients, identified retrospectively from electronic patient records in participating services. All were emerging adults aged 16-25 experiencing a first episode ED of <3 years duration. RESULTS: Overall, FREED patients made significant and rapid clinical improvements over time. 53.2% of FREED patients with anorexia nervosa reached a healthy weight at the 12-month timepoint, compared to only 17.9% of TAU patients (X2 [1, N = 107] = 10.46, p < .001). Significantly fewer FREED patients required intensive (i.e., in-patient or day-patient) treatment (6.6%) compared to TAU patients (12.4%) across the follow-up period (X2 [1, N = 40] = 4.36, p = .037). This contributed to a trend in cost savings in FREED compared to TAU (-£4472, p = .06, CI -£9168, £233). DISCUSSION: FREED is robust and scalable and is associated with substantial improvements in clinical outcomes, reduction in inpatient or day-patient admissions, and cost-savings.

"I'm truly free from my eating disorder": Emerging adults' experiences of FREED, an early intervention service model and care pathway for eating disorders.

BACKGROUND: Eating disorders (EDs) typically start during adolescence or emerging adulthood, periods of intense biopsychosocial development. FREED (First Episode Rapid Early Intervention for EDs) is a service model and care pathway providing rapid access to developmentally-informed care for emerging adults with EDs. FREED is associated with reduced duration of untreated eating disorder and improved clinical outcomes, but patients' experiences of treatment have yet to be assessed. OBJECTIVE: This study aimed to assess emerging adults' experiences of receiving treatment through FREED. METHOD: This study triangulated qualitative data on participants' experiences of FREED treatment from questionnaires and semi-structured interviews. Participants were 106 emerging adults (aged 16-25; illness duration < 3 yrs) (questionnaire only = 92; interview only = 6; both = 8). Data were analysed thematically. RESULTS: Most participants reported psychological and behavioural changes over the course of treatment (e.g. reduction in symptoms; increased acceptance and understanding of difficulties). Participants identified five beneficial characteristics of FREED treatment: i) rapid access to treatment; ii) knowledgeable and concerned clinicians; iii) focusing on life beyond the eating disorder; iv) building a support network; v) becoming your own therapist. CONCLUSION: This study provides further supports for the implementation of early intervention and developmentally-informed care for EDs. Future service model development should include efforts to increase early help-seeking.

Assessing implementation fidelity in the First Episode Rapid Early Intervention for Eating Disorders service model.

BACKGROUND: The First Episode Rapid Early Intervention for Eating Disorders (FREED) service model is associated with significant reductions in wait times and improved clinical outcomes for emerging adults with recent-onset eating disorders. An understanding of how FREED is implemented is a necessary precondition to enable an attribution of these findings to key components of the model, namely the wait-time targets and care package. AIMS: This study evaluated fidelity to the FREED service model during the multicentre FREED-Up study. METHOD: Participants were 259 emerging adults (aged 16-25 years) with an eating disorder of <3 years duration, offered treatment through the FREED care pathway. Patient journey records documented patient care from screening to end of treatment. Adherence to wait-time targets (engagement call within 48 h, assessment within 2 weeks, treatment within 4 weeks) and care package, and differences in adherence across diagnosis and treatment group were examined. RESULTS: There were significant increases (16-40%) in adherence to the wait-time targets following the introduction of FREED, irrespective of diagnosis. Receiving FREED under optimal conditions also increased adherence to the targets. Care package use differed by component and diagnosis. The most used care package activities were psychoeducation and dietary change. Attention to transitions was less well used. CONCLUSIONS: This study provides an indication of adherence levels to key components of the FREED model. These adherence rates can tentatively be considered as clinically meaningful thresholds. Results highlight aspects of the model and its implementation that warrant future examination.

Henoch-Schönlein purpura: recurrence and chronicity.

OBJECTIVES: To describe a group of patients treated at our service for Henoch-Schönlein purpura, with emphasis on recurrent and chronic cases, and to compare clinical and demographic characteristics of patients with monocyclic and recurrent disease. METHODS: Data on 67 patients who had been treated since disease onset were analyzed. Twelve patients were excluded because they failed to return for follow-up consultations after less than 3 months, leaving a total of 55 children in the study sample. Recurrence was defined as the presence of a fresh episode after a period of at least 3 months without symptoms, and cases were defined as chronic when cutaneous, abdominal and renal manifestations persisted for a period of 12 months or more. RESULTS: Recurrence was observed in 8/55 patients (14.4%) and four cases were chronic (7.2%). In 29/55 patients (52.7%), infection was identified as the trigger factor. A monocyclic clinical course was observed in 43 patients (26 of whom were girls, with a mean age of 5.4 years). Gastrointestinal and renal involvement was observed in 55.8 and 20.9% of patients, respectively. Among the 12 patients with recurrent or chronic Henoch-Schönlein purpura, three had arthritis, four exhibited signs and symptoms of abdominal involvement and seven of kidney disease: microscopic hematuria in five, macroscopic hematuria in one and hematuria with proteinuria in one other. Late onset was the only variable related to recurrence (p < 0.05). CONCLUSIONS: As is observed in medical literature, monocyclic cases are more common among children with early onset disease. Patients with Henoch-Schönlein purpura should be followed over the long term, since recurrent and chronic cases account for more than 20% of the total.

Research on teacher education programs: logic model approach.

Teacher education programs in the United States face increasing pressure to demonstrate their effectiveness through pupils' learning gains in classrooms where program graduates teach. The link between teacher candidates' learning in teacher education programs and pupils' learning in K-12 classrooms implicit in the policy discourse suggests a one-to-one correspondence. However, the logical steps leading from what teacher candidates have learned in their programs to what they are doing in classrooms that may contribute to their pupils' learning are anything but straightforward. In this paper, we argue that the logic model approach from scholarship on evaluation can enhance research on teacher education by making explicit the logical links between program processes and intended outcomes. We demonstrate the usefulness of the logic model approach through our own work on designing a longitudinal study that focuses on examining the process and impact of an undergraduate mathematics and science teacher education program.

Enovelamento do fio guia em cateter central de inserção periférica (PICC): rara complicação / Knoted guidewire in peripherally inserted central catheters (PICC): a rare complication / Enredado del alambre guía en el catéter central de la inserción periférica (PICC): complicación infrecuente

Objetivo: Relatar a experiência vivenciada por uma equipe multiprofissional referente ao gerenciamento de um evento adverso após a passagem de cateter central de inserção periférica (PICC) por retenção do fio guia metálico. Método: Relato de experiência ocorrida em hospital geral no município de Guarulhos, São Paulo, em novembro de 2015. Resultado: Descreve-se o caso de lactente de um ano de idade, hemofílico e neuropata, que, após a passagem de PICC 3F no antebraço sem incidentes, teve seu fio guia retido, impossibilitando sua retirada. A radioscopia revelou enovelamento do fio guia, com necessidade de remoção cirúrgica. Conclusão: O procedimento cirúrgico foi realizado com sucesso. Não houve perda sanguínea de monta no campo operatório. A criança se recuperou bem, sem consequências detectáveis pela intercorrência. Notificou-se o fabricante sobre o evento ocorrido. Este caso serviu como um aprendizado para a equipe multiprofissional.

Objective: To report the experience of a multiprofessional team on the management of an adverse event after the insertion of a peripherally inserted central catheter (PICC) because of the retention of the metallic guidewire. Method: An experience report concerning an occurrence at a general hospital in the city of Guarulhos, São Paulo, Brazil, in November 2015. Results: Description of the case of a 1-year-old infant, with hemophilia and neuropathy, who had its guidewire held after the insertion of a PICC 3F in the forearm without incidents, which made its removal impossible. Radioscopy revealed that the guidewire was curled up and had to be surgically removed. Conclusion: The surgical procedure was successful. There was no blood loss in the operating field. The infant recovered well, without any consequences detected because of the complication. The manufacturer was notified of the event. This case served as a learning experience for the multiprofessional team.

Objetivo: Reportar la experiencia pasada por un equipo multiprofesional en referencia al manejo de un evento adverso luego del paso del catéter central de la inserción periférica (PICC) por retención del alambre metálico. Método: Relato de una experiencia sucedida en un hospital general del municipio de Guarulhos (San Pablo, Brasil), en noviembre de 2015. Resultado: Se describe el caso de un lactante de un año, hemofílico y portador de neuropatía, lo cual, luego del paso de un PICC 3F por su antebrazo sin incidencias, sufrió una retención del alambre, que imposibilitaba retirarlo. La radioscopia mostró un enredado del alambre guía, que debió retirarse por vía quirúrgica. Conclusión: El procedimiento quirúrgico se llevó a cabo con éxito. No hubo pérdida sanguínea relevante en el acto quirúrgico. El niño se recuperó bien, sin consecuencias detectables que fueron motivadas por el evento. Se notificó al fabricante sobre el inconveniente acaecido. Este caso sirve como un aprendizaje para el equipo multiprofesional.

Síndrome DRESS e lúpus eritematoso sistêmico juvenil em menina de dois anos de idade / DRESS syndrome and juvenile systemic lupus erythematosus in a two year old girl

A síndrome DRESS (drug rash with eosinophilia andsystemic symptoms - erupção à droga com eosinofilia e sintomas sistêmicos) é uma reação adversa a medicamentos com características sistêmicas, que inclui, principalmente, erupção cutânea grave, febre, linfadenopatia, hepatite e anormalidades hematológicas (hipereosinofilia e linfocitose atípica). A taxa de mortalidade é de aproximadamente 10 por cento. É rara na faixa etária pediátrica, com poucos casos descritos. Por causa da raridade desta reação e da dificuldade e importância de seu reconhecimento, relata-se o caso de uma menina de dois anos de idade com DRESS associado a lúpus eritematoso sistêmico juvenil (LESj).

DRESS syndrome (drug rash with eosinophilia and systemic symptoms) consists in an adverse reaction to some drugs characterized by systemic features such as severe cutaneous eruption, fever, lymphadenopathy, hepatitis and hematological abnormalities (hypereosinophilia and atypical lymphocytosis). Mortality rate accounts to 10 percent. The low prevalence in children and small number of published cases, increase the difficulty and importance of a prompt diagnosis of this syndrome in pediatric patients. This is a report of one case of DRESS in association with juvenile systemic lupus erithematosus in a two year old girl.

Henoch-Schõnlein purpura: recurrence and chronicity

OBJETIVOS: Descrever um grupo de pacientes com púrpura de Henoch-Schõnlein seguido em nosso serviço, com ênfase nos casos recorrentes e crônicos, e comparar pacientes com doença monocíclica ou recorrente segundo características clínicas e demográficas. MÉTODOS: Foram avaliados dados de 67 pacientes atendidos desde o início da doença. Doze pacientes foram excluídos, pois abandonaram o seguimento antes de 3 meses de acompanhamento, sendo incluídas 55 crianças no estudo. Recorrência foi definida pela presença de novo quadro após um período de 3 meses sem sintomas, e cronicidade como persistência de manifestações cutâneas, abdominais e renais por um período ≥ 12 meses. RESULTADOS: Foi observada recorrência em 8/55 pacientes (14,4 por cento) e cronicidade em quatro (7,2 por cento). Em 29/55 pacientes (52,7 por cento), foi constatada infecção como fator desencadeante. Curso monocíclico esteve presente em 43 pacientes (26 meninas, média de idade de 5,4 anos). Acometimento gastrointestinal e renal foi observado em 55,8 e 20,9 por cento dos pacientes, respectivamente. Dentre os 12 pacientes com púrpura de Henoch-Schõnlein recorrente ou crônica, três apresentaram artrite, quatro tiveram sinais e sintomas de comprometimento abdominal e sete de doença renal: hematúria microscópica em cinco, hematúria macroscópica em um e hematúria com proteinúria em um paciente. Idade de início tardia foi a única variável relacionada com a presença de recorrência (p < 0,05). CONCLUSÕES: Como observado na literatura médica, o curso monocíclico é mais freqüente nas crianças com início da doença em idade mais precoce. Pacientes com púrpura de Henoch-Schõnlein devem ser seguidos a longo prazo, uma vez que recorrências e/ou cronicidade são observadas em mais de 20 por cento dos casos.

OBJECTIVES: To describe a group of patients treated at our service for Henoch-Schõnlein purpura, with emphasis on recurrent and chronic cases, and to compare clinical and demographic characteristics of patients with monocyclic and recurrent disease. METHODS: Data on 67 patients who had been treated since disease onset were analyzed. Twelve patients were excluded because they failed to return for follow-up consultations after less than 3 months, leaving a total of 55 children in the study sample. Recurrence was defined as the presence of a fresh episode after a period of at least 3 months without symptoms, and cases were defined as chronic when cutaneous, abdominal and renal manifestations persisted for a period of 12 months or more. RESULTS: Recurrence was observed in 8/55 patients (14.4 percent) and four cases were chronic (7.2 percent). In 29/55 patients (52.7 percent), infection was identified as the trigger factor. A monocyclic clinical course was observed in 43 patients (26 of whom were girls, with a mean age of 5.4 years). Gastrointestinal and renal involvement was observed in 55.8 and 20.9 percent of patients, respectively. Among the 12 patients with recurrent or chronic Henoch-Schõnlein purpura, three had arthritis, four exhibited signs and symptoms of abdominal involvement and seven of kidney disease: microscopic hematuria in five, macroscopic hematuria in one and hematuria with proteinuria in one other. Late onset was the only variable related to recurrence (p < 0.05). CONCLUSIONS: As is observed in medical literature, monocyclic cases are more common among children with early onset disease. Patients with Henoch-Schõnlein purpura should be followed over the long term, since recurrent and chronic cases account for more than 20 percent of the total.

Estudo retrospectivo das manifestações clínicas e laboratoriais de 104 pacientes com lúpus eritematoso sistêmico (LES), em Belém, PA, Brasil (1990-1999) / Retrospective analysis of clinical and laboratorial aspects of 104 systemic lupus erythematosus (SLE) patientes in Belém, PA, Brasil (1990-1999)

Objetivo: realizar uma análise retrospectiva das manifestações clínicas e laboratoriais encontradas em 104 pacientes com diagnóstico de lúpus eritematoso sistêmico (LES), atendidos em um consultório médico na cidade de Belém, Pará, no período de 1990 a 1999. Métodos: a revisão dos prontuários médicos foi realizada através do protocolo usado pelo Estudo Latino Americano de Lúpus Eritematoso Sistêmico (ELALES), modificado para esta região, havendo 104 pacientes compatíveis para análise. Os dados analisados têm-se: manifestações clínicas e laboratoriais, sexo, cor, idade de início da doença, tempo de evolução, manifestações clínicas iniciais, evolutivas, e alterações laboratoriais. Foi utilizado no cálculo das freqüências de alterações laboratoriais o número total de pacientes testados, com sua análise estatística para comparação com a literatura. Resultados: dos 104 pacientes identificados, 91,35 por cento foram do sexo feminino, com predominância (53,85 por cento) da raça branca. Para idade de início dos sintomas houve maior ocorrência na faixa de 26-30 anos (25,96 por cento), permanecendo esta a faixa de maior ocorrência para a idade na última consulta registrada em prontuário (24,04 por cento). A manifestação clínica inicial e evolutiva de maior destaque foi artrite/artralgia em 77,88 por cento e 78,85 por cento, respectivamente. A fotossensibilidade apresentou baixa prevalência (34,62 por cento) com relação à literatura, representando uma observação paradoxal, uma vez que, nas regiões de clima equatorial, há maior exposição aos raios ultravioleta. Laboratorialmente, obteve-se positividade de FAN em 83,84 por cento dos pacientes. Conclusão: essa pesquisa propicia uma visão parcial das caracterísitcas do LES na cidade de Belém, PA, Brasil, sendo que um estudo prospectivo será de grande valor para identificar fatores que colaborem para a características clínicas típicas da região, proporcionando melhor atenção diagnóstica e terapêutica.