AN ASSESSMENT OF KNOWLEDGE AND ATTITUDES OF GENETIC COUNSELING SERVICES IN U.S. HTCs

Hemophilia is a hereditary bleeding disorder which requires lifelong specialized care. A network of Hemophilia Treatment Centers (HTCs) exists to meet the medical needs of patients affected by hemophilia. Genetic counseling services are an integral part of the HTC model of care; however, many HTCs do not have genetic counselors on staff. As a result, the duty to provide these services must fall to other healthcare providers within the HTC. To assess the knowledge and attitudes of these providers we developed a 49 question survey that was distributed electronically to hematologists and nurses at U.S. HTCs. The survey consisted of a three sections: demographic information, knowledge of hemophilia genetics, and attitudes towards genetic services. A total of 111 complete responses were received and analyzed. The average knowledge score among all participants was 74.8% with a total of 81 participants receiving a passing score of 70% or above. Thirty participants scored below 70% in the knowledge section. In general, attitude scores were high indicating that the majority of hematologists and nurses in HTCs feel confident in their ability to provide genetic counseling services. Over 90% of participants reported that they have some form of access to genetic counseling services at their center. Hematologists and nurses practicing in U.S. HTCs demonstrate sufficient knowledge of the genetics of hemophilia, and they generally feel confident in their ability to provide genetic counseling services to their patients. While their knowledge is sufficient, the average knowledge score was lower than 75%. Certain questions covering new genetic technologies and testing practices were more commonly missed than questions asking about more basic aspects of hemophilia genetics, such as inheritance and carrier testing. Finally, many clinics report having access to a counselor, but it is oftentimes a hematologist or nurse who is providing genetic counseling services to patients. Given the inconsistency in knowledge among providers coupled with the high confidence in one’s ability to counsel patients, it leaves room to question whether information about the genetics of hemophilia is being communicated to patients in the most appropriate and accurate manner.

Polypharmacy and specific comorbidities in university primary care settings.

AIMS Polypharmacy is associated with adverse events and multimorbidity, but data are limited on its association with specific comorbidities in primary care settings. We measured the prevalence of polypharmacy and inappropriate prescribing, and assessed the association of polypharmacy with specific comorbidities. METHODS We did a cross-sectional analysis of 1002 patients aged 50-80years followed in Swiss university primary care settings. We defined polypharmacy as ≥5 long-term prescribed drugs and multimorbidity as ≥2 comorbidities. We used logistic mixed-effects regression to assess the association of polypharmacy with the number of comorbidities, multimorbidity, specific sets of comorbidities, potentially inappropriate prescribing (PIP) and potential prescribing omission (PPO). We used multilevel mixed-effects Poisson regression to assess the association of the number of drugs with the same parameters. RESULTS Patients (mean age 63.5years, 67.5% ≥2 comorbidities, 37.0% ≥5 drugs) had a mean of 3.9 (range 0-17) drugs. Age, BMI, multimorbidity, hypertension, diabetes mellitus, chronic kidney disease, and cardiovascular diseases were independently associated with polypharmacy. The association was particularly strong for hypertension (OR 8.49, 95%CI 5.25-13.73), multimorbidity (OR 6.14, 95%CI 4.16-9.08), and oldest age (75-80years: OR 4.73, 95%CI 2.46-9.10 vs.50-54years). The prevalence of PPO was 32.2% and PIP was more frequent among participants with polypharmacy (9.3% vs. 3.2%, p<0.006). CONCLUSIONS Polypharmacy is common in university primary care settings, is strongly associated with hypertension, diabetes mellitus, chronic kidney disease and cardiovascular diseases, and increases potentially inappropriate prescribing. Multimorbid patients should be included in further trials for developing adapted guidelines and avoiding inappropriate prescribing.

Mejora del autocuidado de pacientes diabéticos en zonas rurales de Panamá a través de tecnologías tic

Durante años, los países de América Latina y en especial Panamá han sufrido grandes cambios sociales, demográficos y epidemiológicos que han provocado un crecimiento de la incidencia y prevalencia de varias enfermedades crónicas no transmisibles como: las cardiopatías, el cáncer y la diabetes. Actualmente, la suma de estas afecciones causa la mayoría de las muertes y discapacidades en la región. Las necesidades de salud varían de un país a otro, inclusive en el interior de un mismo país o de una misma región debido a factores demográficos, socioculturales, económicos y políticos propios de la región, lo cual favorece la desigualdad en el acceso a los servicios de salud. Este hecho pone de manifiesto un aspecto importante de esta tesis de doctorado, que es facilitar el autocuidado de los pacientes diabéticos en tres zonas rurales de Panamá, contribuyendo de esta manera a la planeación e implantación de nuevos servicios TIC en salud para los pacientes diabéticos de tres zonas rurales de Panamá. El objetivo principal de esta tesis doctoral es desarrollar una contextualización del paciente diabético en zonas rurales de Panamá y modelar su autocuidado mediante el uso de las TIC. A través del modelo se busca mejorar la calidad de vida de los pacientes y propiciar estados de equidad en salud. Se continúa con la implementación del modelo en tres zonas rurales diferentes de Panamá. Se concluye con una fase de validación en la que se demuestra que el enfermo de diabetes aumenta la conciencia de la importancia de su tratamiento mejorando su estado de salud y su calidad de vida. La demostración clínica de este resultado está fuera del ámbito de la tesis doctoral. Abstract Through the years, countries of Latin America, Panama in particular have endured great social, demographic and epidemiologic changes, which in turn caused an increase in the occurrence and prevalence of chronic non transmissible diseases, such as: cardiopathy, cancer and diabetes. The sum of these afflictions causes most of the deaths and disabilities in the region nowadays. The healthcare needs vary from one country to another, furthermore the healthcare needs are different from one rural area to another in a given country or region, due demographic, sociocultural, economic and political factors, this favors the inequality in access to health care services. This facts shows one important aspect of this Ph. D. thesis, which is to facilitate the self-care of diabetic patients in three rural areas of Panama, contributing to the planning and implementation of new ICT services in healthcare for diabetic patients in rural areas of Panama. The primary goal of this Ph.D thesis is to develop a contextualization of the diabetic patient in country side of Panama and to model its self-care by means of the use of the ICT. Through model one looks for to improve the quality of life of the patients and to cause states of fairness in health. It continues with the implementation of ICT through a conceptualized model in three different rural areas of Panama. It concludes with a validation phase which shows how the awareness of the diabetes patient increases, about the importance of his/her treatment for the improvement of health and quality of life. The clinic demonstration of this result is not part of this thesis.

Educação Alimentar e Nutricional na Atenção Primária à Saúde na perspectiva do profissional não nutricionista

Introdução: O Direito Humano a Alimentação Adequada (DHAA), na perspectiva da Segurança Alimentar e Nutricional (SAN), destacou-se devido à compreensão dos determinantes para a Promoção da Saúde (PS). A Educação Alimentar e Nutricional (EAN) é uma ferramenta capaz de promover a reflexão dos cidadãos sobre como realizar esse direito. No Brasil, o quadro de insegurança alimentar entre crianças e adolescentes torna os profissionais de saúde da Atenção Primária à Saúde (APS) atores promissores para a reversão desse quadro, já que esses trabalham com os principais influenciadores desse público: a família. Objetivo: Analisar a atuação de profissionais de saúde não nutricionistas coordenadores de grupos educativos com conteúdo de alimentação e nutrição, desenvolvidos na APS do município de São Paulo. Métodos: Estudo qualitativo, com aplicação de entrevistas semiestruturadas e análise por meio do Discurso do Sujeito Coletivo. Foram levantados os dados a respeito da formação desses profissionais e identificadas suas percepções sobre seus papéis nos grupos que coordenam e a importância atribuída a eles. Resultados: A profissão dos 21 entrevistados reflete a atual configuração da Estratégia Saúde da Família. Há predominância de profissionais do sexo feminino com pós-graduação em temas de saúde coletiva. Foram identificadas 13 Ideias Centrais dividas em 2 Eixos Temáticos. Levantaram-se percepções contrárias e outras a favor aos referenciais teóricos trabalhados. Como favoráveis, identificou-se a valorização dos grupos como espaços de participação, troca de experiências e criação de vínculo entre seus membros, sendo o coordenador do grupo responsável pela condução desses. A importância na atuação interprofissional para o atendimento integral à saúde e atualização entre os profissionais também foi destacada. Já as desfavoráveis trouxeram a desvalorização das atividades em grupo, ou a atribuição de sua importância como forma de acesso a serviços, medicamentos ou informação, a identificação dos coordenadores como responsáveis por mudanças de comportamentos nos participantes, modelos a serem seguidos, e sendo considerados detentores do conhecimento, o que parece sobrecarregá-los, desmotivá-los e frustrá-los. Assim, alguns buscam seu reconhecimento trazendo atividades que agradam os usuários, independentemente da constatação das necessidades do território. Conclusões: A percepção dos profissionais parece refletir a forma em que atuam, evidenciando um momento heterogêneo sobre as formas de se abordar os aspectos relacionados à alimentação, além do despreparo para a coordenação de grupos. Dessa forma, recomenda-se a aproximação entre os campos da saúde e da educação, visando práticas mais significativas e libertadoras, bem como a reflexão sobre a formação desses profissionais, já que suas atuações parecem refletir a educação na qual foram moldados. Os princípios da PS, do DHAA, da SAN, da EAN e das características essenciais a um coordenador de grupos, devem ser trabalhados com esses atores, e, para tanto, como produto dessa pesquisa, sugeriu-se um curso de atualização.

A educação interprofissional e o Pró PET-Saúde USP-Capital 2012/2014: a percepção de tutores, preceptores e estudantes

Nos últimos trinta anos, pesquisadores da área da saúde tem dado especial atenção ao tema da educação interprofissional (EIP), por esta estar relacionada com uma maior satisfação dos usuários e a oferta de uma assistência em saúde mais resolutiva e satisfatória. A necessidade de adotarmos a EIP como uma ferramenta para a formação de profissionais da saúde surge a partir do momento que percebemos que nosso sistema de saúde presta cuidados fragmentados e pouco resolutivos. Atualmente, estudos científicos comprovam que a prática colaborativa e um cuidado ofertado com qualidade é facilmente alcançável se os profissionais trabalharem em equipe com objetivos comuns, sendo imprenscindível o desenvolvimento de habilidades de comunicação interprofissional e prática colaborativa desde o início da graduação. Desta forma, este estudo tomou como objeto de investigação a educação interprofissional, no contexto da atenção primária a saúde e na perspectiva da integração do ensino com os serviços públicos de saúde, por meio do programa Pró PET-Saúde USP-Capital 2012/2014. A escolha do programa para o presente estudo foi devido a natureza interprofissional do projeto, visto que engloba estudantes, preceptores e tutores de diversos cursos da área da saúde e por este ter constituído um espaço privilegiado de aprendizado e aperfeiçoamento na formação em saúde, dando origem a outras iniciativas interprofissionais na Universidade de São Paulo (USP). A coleta de dados ocorreu de duas formas, sendo a primeira por meio de questionários individuais destinado aos profissionais de saúde (preceptores) e estudantes, com trechos da obra de Lewis Carroll \"As Aventuras de Alice no País das Maravilhas\", e por meio de um roteiro de entrevista destinado aos docentes (tutores) participantes do programa. Os dados obtidos foram analisados através da análise temática proposta por Minayo. Os resultados mostram que assim como a personagem Alice do livro de Carroll, muitas vezes ficamos confusos sobre quais opções escolher para aperfeiçoar a nossa formação em saúde. Se não soubermos onde queremos chegar, qualquer caminho se torna o certo, porém as evidências comprovam que a escolha por oportunidades de educação interprofissional na graduação e na pós graduação em saúde podem minimizar estereótipos e preconceitos formados pelos estudantes em relação as outras categorias profissionais e desenvolver habilidades de comunicação interprofissional e resolução de conflitos que contribuirá para uma prática colaborativa e a melhor assistência em saúde. Como produto do mestrado profissional foi elaborado um plano de aula destinado aos estudantes da USP com a finalidade de problematizar e permitir uma breve experiência da educação interprofissional.

Working Therapeutically with Interpreters in Mental Health: A Curriculum for Clinicians.

Given the increasing numbers of people who lack proficiency in spoken English, it would not be uncommon for American healthcare practitioners to encounter clients whose primary language is not English. Additionally, for those clinicians who specifically wish to work with immigrants, refugees or asylees, it is likely that their clientele will be comprised of LEP individuals and families. While many professional interpreters have completed formal training and been certified to provide their unique services, mental health clinicians rarely receive such training to help negotiate the complex dynamics inherent in working with LEP populations where the therapeutic relationship is altered with the addition of an interpreter. This training curriculum proposes the detailed, in-depth training for clinicians as recommended by numerous sources in the literature.

Psychosocial Distress Screening in a Community Cancer Center: An Exploratory Study of Distress Screening Across the Cancer Treatment Continuum

Purpose: The primary goal of this exploratory study is to demonstrate that distress screening across the course of cancer treatment is possible and provides valuable information about patient needs over time. Distress screening is aligned with guidelines from national accrediting organizations and may lead to improved health-related quality of life, satisfaction with medical care, and possibly survival.Methods: Medical, surgical, and radiation oncology patients completed a screening instrument before their appointments during a six-month period. Patients indicated their level of distress on four domains (practical, emotional, health and social concerns). De-identified data was collected, aggregated and descriptive statistics were analyzed.Results: Approximately 3000 screens were collected and 1500 cancer patients were screened. Of patients who indicated distress, 54% demonstrated a distress level of five or greater. Distress level eight was the most frequent level of distress indicated. The Cancer Dietitian was the most commonly requested healthcare team provider. The Health Concern domain was most frequently endorsed.Conclusion: NCCN, IOM and COC guidelines recommend distress screening in all cancer treatment centers, however implementation has proven difficult. This study adds to the literature about distress in cancer patients, demonstrates the feasibility of repeated distress screening and provides a model program demonstrating the implementation of repeated distress screening at a community cancer center. Findings highlight the importance of supportive oncology services due to the prevalence of high levels of distress. Findings demonstrate the importance of the Cancer Dietitian in supportive cancer care. Additionally, the research reveals a potential perceived stigma in seeking psychosocial oncology services.

Evaluation of an integrated system for classification, assessment and comparison of services for long-term care in Europe: the eDESDE-LTC study

Background: The harmonization of European health systems brings with it a need for tools to allow the standardized collection of information about medical care. A common coding system and standards for the description of services are needed to allow local data to be incorporated into evidence-informed policy, and to permit equity and mobility to be assessed. The aim of this project has been to design such a classification and a related tool for the coding of services for Long Term Care (DESDE-LTC), based on the European Service Mapping Schedule (ESMS). Methods: The development of DESDE-LTC followed an iterative process using nominal groups in 6 European countries. 54 researchers and stakeholders in health and social services contributed to this process. In order to classify services, we use the minimal organization unit or “Basic Stable Input of Care” (BSIC), coded by its principal function or “Main Type of Care” (MTC). The evaluation of the tool included an analysis of feasibility, consistency, ontology, inter-rater reliability, Boolean Factor Analysis, and a preliminary impact analysis (screening, scoping and appraisal). Results: DESDE-LTC includes an alpha-numerical coding system, a glossary and an assessment instrument for mapping and counting LTC. It shows high feasibility, consistency, inter-rater reliability and face, content and construct validity. DESDE-LTC is ontologically consistent. It is regarded by experts as useful and relevant for evidence-informed decision making. Conclusion: DESDE-LTC contributes to establishing a common terminology, taxonomy and coding of LTC services in a European context, and a standard procedure for data collection and international comparison.

Changes in Access to Health Services of the Immigrant and Native-Born Population in Spain in the Context of Economic Crisis

Aim: To analyze changes in access to health care and its determinants in the immigrant and native-born populations in Spain, before and during the economic crisis. Methods: Comparative analysis of two iterations of the Spanish National Health Survey (2006 and 2012). Outcome variables were: unmet need and use of different healthcare levels; explanatory variables: need, predisposing and enabling factors. Multivariate models were performed (1) to compare outcome variables in each group between years, (2) to compare outcome variables between both groups within each year, and (3) to determine the factors associated with health service use for each group and year. Results: unmet healthcare needs decreased in 2012 compared to 2006; the use of health services remained constant, with some changes worth highlighting, such as the decline in general practitioner visits among autochthons and a narrowed gap in specialist visits between the two populations. The factors associated with health service use in 2006 remained constant in 2012. Conclusion: Access to healthcare did not worsen, possibly due to the fact that, until 2012, the national health system may have cushioned the deterioration of social determinants as a consequence of the financial crisis. Further studies are necessary to evaluate the effects of health policy responses to the crisis after 2012.

Developing a programme theory to explain how primary health care teams learn to respond to intimate partner violence: a realist case-study

Background: Despite the progress made on policies and programmes to strengthen primary health care teams’ response to Intimate Partner Violence, the literature shows that encounters between women exposed to IPV and health-care providers are not always satisfactory, and a number of barriers that prevent individual health-care providers from responding to IPV have been identified. We carried out a realist case study, for which we developed and tested a programme theory that seeks to explain how, why and under which circumstances a primary health care team in Spain learned to respond to IPV. Methods: A realist case study design was chosen to allow for an in-depth exploration of the linkages between context, intervention, mechanisms and outcomes as they happen in their natural setting. The first author collected data at the primary health care center La Virgen (pseudonym) through the review of documents, observation and interviews with health systems’ managers, team members, women patients, and members of external services. The quality of the IPV case management was assessed with the PREMIS tool. Results: This study found that the health care team at La Virgen has managed 1) to engage a number of staff members in actively responding to IPV, 2) to establish good coordination, mutual support and continuous learning processes related to IPV, 3) to establish adequate internal referrals within La Virgen, and 4) to establish good coordination and referral systems with other services. Team and individual level factors have triggered the capacity and interest in creating spaces for team leaning, team work and therapeutic responses to IPV in La Virgen, although individual motivation strongly affected this mechanism. Regional interventions did not trigger individual and/ or team responses but legitimated the workings of motivated professionals. Conclusions: The primary health care team of La Virgen is involved in a continuous learning process, even as participation in the process varies between professionals. This process has been supported, but not caused, by a favourable policy for integration of a health care response to IPV. Specific contextual factors of La Virgen facilitated the uptake of the policy. To some extent, the performance of La Virgen has the potential to shape the IPV learning processes of other primary health care teams in Murcia.

Traumatisme craniocérébral, services de santé mentale et suicide de l'enfance à l'âge adulte : une étude épidémiologique et qualitative de la situation québécoise (1987 à 2013)

Introduction et recension des écrits : Récemment, les suicides de vétérans et d’athlètes professionnels ont attiré l’attention sur l’association entre le TCC et le suicide. Les lignes directrices concernant la prise en charge en santé mentale dans cette population demeurent fragmentaires. Les objectifs de cette thèse sont de 1) déterminer si une association existe entre le TCC subi dans l’enfance et le suicide futur, 2) explorer si les personnes qui se sont suicidées ont consulté un psychiatre dans l’année précédant le suicide et évaluer si cela diffère selon que la personne ait eu un TCC ou non, 3) décrire et qualifier l’offre québécoise de santé mentale offerte en réadaptation aux enfants et aux adultes ayant subi un TCC. Méthodologie : Le volet épidémiologique consiste en une étude de cohorte rétrospective sur un échantillon de 135 703 enfants ayant reçu des services médicaux au Québec en 1987 et suivis jusqu’en 2008. Le volet qualitatif comprend un sondage auprès des gestionnaires des programmes de réadaptation TCC du Québec, des groupes de discussion avec des cliniciens et des entrevues avec des survivants de TCC et leurs proches. Résultats : Notre étude épidémiologique confirme une association significative entre le TCC subi dans l’enfance (HR 1,49 IC95% 1,04- 2,14), dans l’adolescence (HR 1,57, IC 95% 1,09-2,26) et à l’âge adulte (HR 2,53, IC95% 1,79-3,59) et le suicide. Malgré un risque de suicide plus élevé, les personnes avec un TCC et qui se sont suicidées n’ont pas consulté de psychiatre plus fréquemment que les personnes sans TCC (OR 1,29, IC 95% 0,75- 2,24). Par ailleurs, notre étude qualitative révèle que les forces du système actuel incluent une bonne qualité des services, mais qu’il existe des faiblesses au niveau de l’accès aux médecins spécialisés, du dépistage systématique et de l’accès aux services à long terme. Nos recommandations incluent le développement d’une approche coordonnée en santé mentale, l’implication automatique d’un gestionnaire de cas et l’amélioration des mécanismes d’accès après le congé.

The education of physicians for primary care /

Mode of access: Internet.