Decision aids for people facing health treatment or screening decisions.

BACKGROUND: Patient decision aids are interventions designed to support people making health decisions. At a minimum, patient decision aids make the decision explicit, provide evidence-based information about the options and associated benefits/harms, and help clarify personal values for features of options. This is an update of a Cochrane review that was first published in 2003 and last updated in 2017. OBJECTIVES: To assess the effects of patient decision aids in adults considering treatment or screening decisions using an integrated knowledge translation approach. SEARCH METHODS: We conducted the updated search for the period of 2015 (last search date) to March 2022 in CENTRAL, MEDLINE, Embase, PsycINFO, EBSCO, and grey literature. The cumulative search covers database origins to March 2022. SELECTION CRITERIA: We included published randomized controlled trials comparing patient decision aids to usual care. Usual care was defined as general information, risk assessment, clinical practice guideline summaries for health consumers, placebo intervention (e.g. information on another topic), or no intervention. DATA COLLECTION AND ANALYSIS: Two authors independently screened citations for inclusion, extracted intervention and outcome data, and assessed risk of bias using the Cochrane risk of bias tool. Primary outcomes, based on the International Patient Decision Aid Standards (IPDAS), were attributes related to the choice made (informed values-based choice congruence) and the decision-making process, such as knowledge, accurate risk perceptions, feeling informed, clear values, participation in decision-making, and adverse events. Secondary outcomes were choice, confidence in decision-making, adherence to the chosen option, preference-linked health outcomes, and impact on the healthcare system (e.g. consultation length). We pooled results using mean differences (MDs) and risk ratios (RRs) with 95% confidence intervals (CIs), applying a random-effects model. We conducted a subgroup analysis of 105 studies that were included in the previous review version compared to those published since that update (n = 104 studies). We used Grading of Recommendations Assessment, Development, and Evaluation (GRADE) to assess the certainty of the evidence. MAIN RESULTS: This update added 104 new studies for a total of 209 studies involving 107,698 participants. The patient decision aids focused on 71 different decisions. The most common decisions were about cardiovascular treatments (n = 22 studies), cancer screening (n = 17 studies colorectal, 15 prostate, 12 breast), cancer treatments (e.g. 15 breast, 11 prostate), mental health treatments (n = 10 studies), and joint replacement surgery (n = 9 studies). When assessing risk of bias in the included studies, we rated two items as mostly unclear (selective reporting: 100 studies; blinding of participants/personnel: 161 studies), due to inadequate reporting. Of the 209 included studies, 34 had at least one item rated as high risk of bias. There was moderate-certainty evidence that patient decision aids probably increase the congruence between informed values and care choices compared to usual care (RR 1.75, 95% CI 1.44 to 2.13; 21 studies, 9377 participants). Regarding attributes related to the decision-making process and compared to usual care, there was high-certainty evidence that patient decision aids result in improved participants' knowledge (MD 11.90/100, 95% CI 10.60 to 13.19; 107 studies, 25,492 participants), accuracy of risk perceptions (RR 1.94, 95% CI 1.61 to 2.34; 25 studies, 7796 participants), and decreased decisional conflict related to feeling uninformed (MD -10.02, 95% CI -12.31 to -7.74; 58 studies, 12,104 participants), indecision about personal values (MD -7.86, 95% CI -9.69 to -6.02; 55 studies, 11,880 participants), and proportion of people who were passive in decision-making (clinician-controlled) (RR 0.72, 95% CI 0.59 to 0.88; 21 studies, 4348 participants). For adverse outcomes, there was high-certainty evidence that there was no difference in decision regret between the patient decision aid and usual care groups (MD -1.23, 95% CI -3.05 to 0.59; 22 studies, 3707 participants). Of note, there was no difference in the length of consultation when patient decision aids were used in preparation for the consultation (MD -2.97 minutes, 95% CI -7.84 to 1.90; 5 studies, 420 participants). When patient decision aids were used during the consultation with the clinician, the length of consultation was 1.5 minutes longer (MD 1.50 minutes, 95% CI 0.79 to 2.20; 8 studies, 2702 participants). We found the same direction of effect when we compared results for patient decision aid studies reported in the previous update compared to studies conducted since 2015. AUTHORS' CONCLUSIONS: Compared to usual care, across a wide variety of decisions, patient decision aids probably helped more adults reach informed values-congruent choices. They led to large increases in knowledge, accurate risk perceptions, and an active role in decision-making. Our updated review also found that patient decision aids increased patients' feeling informed and clear about their personal values. There was no difference in decision regret between people using decision aids versus those receiving usual care. Further studies are needed to assess the impact of patient decision aids on adherence and downstream effects on cost and resource use.

Perceived importance and interest in research by Chilean primary care providers.

BACKGROUND: Primary care providers (PCPs) are relevant stakeholders for primary care research (PCR). OBJECTIVE: We report the perceived importance and interest in PCR of a national sample of Chilean PCPs. METHODS: We conducted a cross-sectional study targeting Chilean PCPs. An electronic survey assessing perceived relevance of PCR, research training and experience, training interests, and demographics was disseminated through emails and WhatsApp messages. Descriptive statistics were used to summarize data. Logistic regression models were used to estimate adjusted probabilities and 95% confidence intervals for high interest in PCR, high interest in using research methods, and high interest in receiving research training, and predictors of these outcomes. RESULTS: A total of 387 providers completed the online survey. Only 26.4% of PCPs had research experience as a principal or co-investigator. However, most clinicians perceived PCR as very important (92.5%) and were interested in using research methods (90.7%) and receiving training (94.3%). There were no statistically significant differences in these perceptions between provider's discipline, role, sex, age, and geographical location after adjusting for covariates. CONCLUSIONS: Despite few Chilean PCPs have research training, a large majority perceive it as important, are interested in using it in their practice and would like to receive training.

Conceptualization of patient-centered care in Latin America: A scoping review.

INTRODUCTION: Patient-centered care (PCC) has been declared as a desirable goal for health care in Latin American countries, but a coherent definition of what exactly PCC entails for clinical practice is missing. This article's aim was to identify how PCC is conceptualized in Latin American countries. METHODS: Scientific databases (MEDLINE, EMBASE, PsycINFO, CINAHL, Scielo, Scopus, Web of Science) and webpages of the ministries of health were searched, and experts were contacted for suggestions of literature. References were included if they contained one of a range of a priori defined keywords related to PCC in the title, were published between 2006 and 2021, and were carried out in or concerned Latin America. Definitions of PCC were extracted from the included articles and analyzed using deductive and inductive coding. Deductive coding was based on the integrative model of patient-centeredness, which unites the definitions of PCC in the international literature (mainly North America and Europe) and proposes 16 dimensions describing PCC. RESULTS: Thirty-two articles were included in the analysis and about half of them were from Brazil. Numerous similarities were found between the integrative model of patient-centeredness and the definitions of PCC given in the selected literature. The dimensions of the integrative model of patient-centeredness that were least and most prominent in the literature were physical support and patient information, respectively. A differentiation between PCC and family-centered care (FCC) was observed. Definitions of PCC and FCC as well as their cited references were diverse. CONCLUSION: A considerable overlap between the conceptualization of PCC in Latin America and the integrative model of patient-centeredness has been identified. However, there are substantial differences between countries in Latin America regarding the emphasis of research on PCC versus FCC and diverse conceptualizations of PCC and FCC exist. PATIENT CONTRIBUTION: This scoping review takes the patient's perspective based on the integrative model of patient-centeredness. Due to the study being a review, no patients, neither caregivers, nor members of the public, were involved.

Combining observational and experimental approaches to the development of language and communication in rural samples: Opportunities and challenges.

Multiple approaches - including observational and experimental - are necessary to articulate powerful theories of learning. Our field's key questions, which rely on these varied methods, are still open. How do children perceive and produce language? What do they encounter in their linguistic input? What does the learner bring to the task of acquisition? Considerable progress has been made for the development of spoken English (especially by North American learners). Yet there is still a great deal to discover about how children in other populations proceed, especially populations in rural settings. To examine language learning in these populations, we need a multi-method approach. However, adapting and integrating methods, particularly experimental ones, to new settings can present immense challenges. In this paper, we discuss the opportunities and challenges facing researchers who aim to use a multimethodological approach in rural samples, and what the field of language acquisition can do to promote such work.

[Methods to collect communities' values and preferences about health systems coverage]. / Participación ciudadana: mecanismos utilizados para captar información sobre valores y preferencias en procesos de decisiones de priorización o cobertura de salud. Una revisión pragmática.

Health systems do not have the capacity to finance all services. The impact of choosing one option or another is important in order to prioritize health resources. Citizen participation can help to set priorities or to select the interventions that will receive public funding. We reviewed the literature searching for articles that reported mechanisms to gather information about citizens' values or preferences about health system coverage. We identified 363 publications, 18 articles were analyzed in full, and 7 articles were included in the review. Three articles were European, two were from Australia and two from Latin America. The most commonly used mechanisms to gather information were interviews and surveys. We conclude that there is a limited number of articles with examples of tools to capture information about values and preferences in health decision processes. The main barrier observed was the lack of standardized processes to collect the values and preferences of the community.

Exploring women's experiences of participation in shared decision-making during childbirth: a qualitative study at a reference hospital in Spain.

BACKGROUND: Women's engagement in healthcare decision-making during childbirth has been increasingly emphasised as a priority in maternity care, since it increases satisfaction with the childbirth experience and provides health benefits for women and newborns. The birth plan was developed as a tool to facilitate communication between health professionals and women in Spain, but their value in routine practice has been questioned. Besides, little is known about women's experiences of participation in decision-making in the Spanish context. Thus, this study aimed to explore women's experiences of participation in shared decision-making during hospital childbirth. METHODS: An exploratory qualitative study using focus groups was carried out in one maternity unit of a large reference hospital in Barcelona, Spain. Participants were first-time mothers aged 18 years or older who had had a live birth at the same hospital in the previous 12 months. Data collected were transcribed verbatim and analysed using a six-phase inductive thematic analysis process. RESULTS: Twenty-three women participated in three focus groups. Three major themes emerged from the data: "Women's low participation in shared decision-making", "Lack of information provision for shared decision-making", and "Suggestions to improve women's participation in shared decision-making". The women who were willing to take an active role in decision-making encountered barriers to achieving this and some women did not feel prepared to do so. The birth plan was experienced as a deficient method to promote women's participation, as health professionals did not use them. Participants described the information given as insufficient and not offered at a timely or useful point where it could aid their decision-making. Potential improvements identified that could promote women's participation were having a mutually respectful relationship with their providers, the support of partners and other members of the family and receiving continuity of a coordinated and personalised perinatal care. CONCLUSION: Enhancing women's involvement in shared decision-making requires the acquisition of skills by health professionals and women. The development and implementation of interventions that encompass a training programme for health professionals and women, accompanied by an effective tool to promote women's participation in shared decision-making during childbirth, is highly recommended.

[Experts' views on the communication of risks and benefits of mammography to detect breast cancer]. / Consideraciones para comunicar riesgos y beneficios de la mamografía a mujeres desde la perspectiva de los expertos.

BACKGROUND: Breast cancer (BC) has a high mortality rate in developing countries due to a scarcity of early detection. Risk communication is critical to support women who face the decision to undertake BC screening. Thus, they can balance their perceived and real risk, and make informed choices. AIM: To describe experts' views on how the provision of information related to BC screening should be made. MATERIAL AND METHODS: A qualitative study with focus groups with national experts was conducted. Open coding was performed. RESULTS: Four categories on the way information about BC screening should be provided emerged: to communicate about the need of the exam; the pros and cons of the test; fear as a barrier for understanding; and involving women in the decision-making process. CONCLUSIONS: These findings emphasize the need to include risk communication strategies in the patient-provider relationship and encourage and respect women's autonomy when facing the BC screening decision.

[Validation of the Informed Choice instrument for Chilean women facing a mammography decision in primary care]. / Validación del instrumento Informed Choice para medir la decisión informada de mamografía en mujeres chilenas usuarias de atención primaria.

OBJECTIVE: To adapt and validate for the Chilean context the instrument Informed Choice (IC) to measure informed decision for mammography. LOCATION: Primary Health Care Center in southeast Santiago, Chile. DESIGN: Individual, transversal, analytical and psychometric adaptation and validation study. METHODS: We 1) translated and back-translated IC; 2) conducted a focus group for cultural/linguistic relevance; 3) reviewed content validity; 4) piloted the instrument; 5) applied IC for validation. Analysis was performed by using Cronbach alpha, correlation, Bartlett's test of sphericity, Kaiser-Meyer-Olkin measure and factor analysis. RESULTS: Three versions of the IC were developed, which included changes according to the views of users and experts. Validation was conducted in a sample of 70 women. Mean age was 54,4 years, 47,1% had completed secondary school and 92,9% have had at least one mammography. After factor analysis item 1 was removed and the final Cronbach Alpha was 0,79. CONCLUSIONS: The Chilean IC is reliable to measure decision women for mammography, this evaluate knowledge, attitude and intention towards the screening. The validation of an instrument to the cultural context is necessary and may have any variations to the original version according to local needs.

[Development of a tool to conduct family studies in primary health care]. / Estudio de familia en Atención Primaria: construcción y validación de una herramienta para la valoración familiar.

BACKGROUND: The Family and Community Health Model (MAIS) establishes the continuity of care as an essential principle. The Family Study, as a clinical strategy, allows to have sufficient and timely information and knowledge about users of health care services, facilitates their accompaniment and is a source of information to improve the quality of care and the management of health centers. AIM: To develop a tool to conduct family studies, devised by experts in Primary Health Care. MATERIAL AND METHODS: Using a qualitative method, an electronic Delphi was conducted on 24 experts on primary health care. Afterwards, the content validation was carried out with the participation of judges. RESULTS: The resulting tool considers two levels of family assessment. It allows to distinguish those families that would benefit from interventions of greater complexity than those derived from the usual care of health centers. CONCLUSIONS: The tool to perform family studies responds to the informational and continuity component of Continuity of Patient Care principle. It may be a proposal for the continuous improvement of Chilean primary care.

[User Participation in Clinical Decision-making in Primary Health Care in ChileParticipação dos usuários nas decisões clínicas na atenção primária à saúde no Chile]. / Participación de los usuarios en las decisiones clínicas en la atención primaria de salud en Chile.

OBJECTIVE: Describe users' experience with participation in clinical decision-making at Family Health Centers (CESFAM) in the Primary Health Care (PHC) system. METHODS: Qualitative descriptive study. Focus groups made up of CESFAM users were held in southeastern Santiago, Chile, and the information was thematically analyzed using Atlas.ti version 6® software. RESULTS: Five focus groups were held (n = 41). The main themes that emerged from the discussions were the passive role of users in decisions and delegated decision-making, based on their trust in the health professional. Users' passive role limits their opportunities for participation in clinical decision-making, ceding power to the health professional. However, establishing a therapeutic partnership allows users to feel that they are being treated as unique individuals whom the professional listens to and respects, ensuring that the decisions of the health team can be trusted, since they look out for the users' real interests. CONCLUSION: Users' participation in clinical encounters is still limited in Chile. However, bolstering that participation is essential for increasing user satisfaction and promoting people-centered care.

OBJETIVO: Descrever a experiência de participação nas decisões clínicas dos usuários dos Centros de Saúde Familiar (CESFAM) de atenção primária à saúde. MÉTODOS: Estudo qualitativo descritivo conduzido em grupos de discussão formados por usuários dos CESFAM da região sudeste da cidade de Santiago, no Chile. Foi realizada uma análise temática das informações com o uso do programa de software ATLAS.ti® versão 6. RESULTADOS: Foram formados cinco grupos de discussão (n = 41). Os principais tópicos abordados foram o papel passivo dos usuários nas decisões e a tomada de decisão delegada aos profissionais na base da confiança. O papel passivo restringe as oportunidades de participação dos usuários nas decisões clínicas e mantém o poder nas mãos dos profissionais da saúde. Apesar disso, ao ser criada uma aliança terapêutica, os usuários se sentem tratados como indivíduos únicos que são ouvidos e respeitados pelos profissionais, o que assegura que as decisões tomadas pela equipe de saúde sejam confiáveis porque protegem os reais interesses dos usuários. CONCLUSÃO: Os usuários ainda têm pouca participação nas interações clínicas no Chile. Porém, é fundamental reforçar esta participação para melhorar a satisfação do usuário e promover uma atenção mais centrada na pessoa.

[Training and competencies for primary care teams from the perspective of Chilean expertsTreinamento e competências para equipes de atenção primária na perspectiva de especialistas chilenos]. / Formación y competencias para los equipos de atención primaria desde la mirada de expertos chilenos.

OBJECTIVE: To describe the competencies for primary health care teams (PHC) in different topics related to the direct care of the user and the management of primary health centers, according to the perception of Chilean experts in PHC. METHODS: Mixed design studio. An electronic Delphi method was conducted with 29 national experts in APS. RESULTS: A matrix of specific competences related to direct work with families and to the management of the health center prioritized in three levels is proposed. Experts agreed that a critical mass of professionals with competencies in PHC is required. CONCLUSIONS: The challenge of reorganizing health systems around a strong and quality PHC can only be achieved with the participation of professionals who understand and practice the attributes and fundamental principles of PHC. The results of this study show a competency profile for PHC professionals aligned with international recommendations achievable through continuous education strategies.

OBJETIVO: Descrever as habilidades para equipes de atenção primária à saúde (APS) sobre vários tópicos vinculados com a atenção direta do usuário e gestão de centros de saúde, de acordo com a percepção de especialistas chilenos na APS. MÉTODOS: Estudo de desenho misto. Foi realizado um Delphi eletrônico com 29 especialistas nacionais em APS. RESULTADOS: É proposta uma matriz de competências específicas vinculada ao trabalho direto com famílias e à gestão do centro de saúde priorizados em três níveis. Os especialistas concordam que se requer uma massa crítica de profissionais que contem com competências em APS. CONCLUSÕES: O desafio de reorganizar os sistemas de saúde em torno de uma APS forte e de qualidade só se pode conseguir com a participação de profissionais que entendem e pratiquem os atributos e os princípios fundamentais da APS. Os resultados deste estudo mostram um perfil de competências para profissionais de APS alinhados com recomendações internacionais que podem ser alcançadas através de estratégias de educação contínua.

[Decisional conflict among people with diabetes mellitus or hypertension attending primary care]. / Conflicto decisional en personas con diabetes mellitus e hipertensión arterial usuarias del nivel primario de atención de salud de Chile.

BACKGROUND: Decisional conflict refers to the personal uncertainty about which course of action to take when the choice involves risk, regret, or challenge to personal life values. AIM: To determine the level of decisional conflict (DC) of people with Diabetes Mellitus (DM) or High Blood Pressure (HBP) attending primary care centers (PCC) in Chile. PATIENTS AND METHODS: A Spanish version of the Decisional Conflict Scale (DCS) was applied to patients who were recruited if they had DM or HBP, were 18 years old or older, and had an appointment at the PCC the day of the recruitment. The scale was self-administered. Analysis of covariance (ANCOVA) was used to determine association between DC and other variables of interest while controlling confounding variables. RESULTS: The scale was answered by 1075 participants from 24 PCC aged 62 ± 14 years (74% female). Average score for the DCS scale was 16.8 ± 12.9 of a maximum of 100 points indicating a higher DC. The sub-scale "information" had the highest score (19.9 ± 20.0). Low educational level and older age were significantly associated with higher DCS scores (p < 0.05). Having a bad health perception, deciding to initiate a medical treatment and being attended by a doctor were significantly associated with higher DC. These associations persisted when confounding variables such as sex, age and education were controlled. CONCLUSIONS: People with DM or HBP who have a poor health perception, who initiated their treatment and were attended by a doctor had higher levels of DC, independent of their age and educational level.

[Adapting and validating the generic instrument CollaboRATE™ to measure women's participation in health related decision-making during the reproductive process]. / Adaptación y validación del instrumento genérico CollaboRATE™ para medir la participación de mujeres en la toma de decisiones en salud durante el proceso reproductivo.

INTRODUCTION: There is a worldwide interest in involving patients in health related decisions, so patients can actively search for therapeutic options and choose course of action that allows them to have better quality of life and wellbeing. The majority of the instruments available to capture the degree of participation in medical decision-making are in English and have been developed in high income countries. OBJECTIVE: To adapt and validate for the Chilean context the instrument CollaboRATE™, to measure women's participation in medical decisions during the reproductive process. DESIGN: Cross-sectional study to adapt and validate the instrument CollaboRATE™. LOCATION: Maternity units in Santiago, Chile. PARTICIPANTS: Puerperal women in maternity units of three public hospitals. METHOD: Translation and back-translation, cultural and linguistic relevance with service users and final revision by experts. Study for validation with 90 puerperal women. RESULTS: The Chilean version of CollaboRATE™ demonstrated to be a reliable instrument to capture the degree of patients' participation in medical decision-making. Cronbach alpha was above 0.89. CONCLUSIONS: This study provides the first instrument to capture the prevalence of SDM in a Latin American country. This instrument will be critical in future research efforts that seek to explore to what extent people are being involved in the decisions related to their healthcare.

[Attributes and features of a community health model from the perspective of practitioners]. / Atributos y características de los principios orientadores del Modelo de Atención Integral de Salud Familiar y Comunitaria desde la perspectiva de expertos en APS.

BACKGROUND: The Family and Community Health Model is based on three essential principles: user-centered care, comprehensive care and continuity of care. AIM: To describe the attributes and characteristics of the guiding principles of the Family and Community Health Model (FHM) from the perspective of primary care experts. MATERIAL AND METHODS: This was a qualitative study. An electronic Delphi was conducted with 29 national experts on primary care. RESULTS: The experts agree that user centered care must be based on a psycho-social model integrating the multiple factors that influence health problems. It also must integrate patients' individual features, family and environmental issues. The proposed actions promote shared decision making. To promote integral care, anticipatory guidelines should be expanded and health care of patients with chronic conditions should be improved. Continuity of care should be promoted increasing working hours of medical centers and easing access to integrated electronic medical records, thereby generating efficient links between the different care levels. CONCLUSIONS: The results of the study can guide the clinical and administrative management of health teams, allowing the strengthening of primary health care according to the local realities.

[Perception of users about an Integral Model of Family and Community Health care in Santiago, Chile]. / Principios orientadores del Modelo Integral de Salud Familiar y Comunitario desde la perspectiva de los usuarios.

BACKGROUND: The integral Model of Family and Community Health care is based on three essential principles: patient centered care, comprehensive care and continuity of care. AIM: To know the perception of primary care clinic users about the elements that should be considered in a patient centered integrated health care. MATERIAL AND METHODS: Ten males and 31 females aged 18 to 78 years, users of two public family primary care centers participated in focus groups, which were recorded. A qualitative descriptive research design based on content analysis according to Krippendorf was done. RESULTS: Seven issues emerged from the description of patients’ experiences: professional-patient relationship, fragmentation of care, continued care with the same professional, promotion and prevention, availability of services and patient records. CONCLUSIONS: There are difficulties to install an integral model of family and community health care. The concerns raised by participants should be considered in order to modify the design of these models.

Conceptualising patient empowerment: a mixed methods study.

BACKGROUND: In recent years, interventions and health policy programmes have been established to promote patient empowerment, with a particular focus on patients affected by long-term conditions. However, a clear definition of patient empowerment is lacking, making it difficult to assess effectiveness of interventions designed to promote it. The aim in this study was to develop a conceptual map of patient empowerment, including components of patient empowerment and relationships with other constructs such as health literacy, self-management and shared decision-making. METHODS: A mixed methods study was conducted comprising (i) a scoping literature review to identify and map the components underpinning published definitions of patient empowerment (ii) qualitative interviews with key stakeholders (patients, patient representatives, health managers and health service researchers) to further develop the conceptual map. Data were analysed using qualitative methods. A combination of thematic and framework analysis was used to integrate and map themes underpinning published definitions of patient empowerment with the views of key UK stakeholders. RESULTS: The scoping literature review identified 67 articles that included a definition of patient empowerment. A range of diverse definitions of patient empowerment was extracted. Thematic analysis identified key underpinning themes, and these themes were used to develop an initial coding framework for analysis of interview data. 19 semi-structured interviews were conducted with key stakeholders. Transcripts were analysed using the initial coding framework, and findings were used to further develop the conceptual map. The resulting conceptual map describes that patient empowerment can be conceived as a state ranging across a spectrum from low to high levels of patient empowerment, with the level of patient empowerment potentially measurable using a set of indicators. Five key components of the conceptual map were identified: underpinning ethos, moderators, interventions, indicators and outcomes. Relationships with other constructs such as health literacy, self-management and shared decision-making are illustrated in the conceptual map. CONCLUSION: A novel conceptual map of patient empowerment grounded in published definitions of patient empowerment and qualitative interviews with UK stakeholders is described, that may be useful to healthcare providers and researchers designing, implementing and evaluating interventions to promote patient empowerment.

[What should the paediatrician know about hyperphenylalaninaemia?]. / ¿Qué debe saber el pediatra de las hiperfenilalaninemias?

Hyperphenylalaninaemias are defined by a blood phenylalanine over 2mg/dl. The main cause is due to a mutation in the gene that codes the phenylalanine hydroxylase that catalyses the reaction that converts phenylalanine into tyrosine. The hyperphenylalaninaemias are classified into benign or mild hyperphenylalaninaemias, or mild, moderate or classic phenylketonurias. Due to its delayed detection outside the neonatal period it causes severe mental retardation. Its detection along with congenital hypothyroidism has been part of the National Neonatal Screening Program since 1992 in Chile. This article aims to answer the most common questions asked by the paediatrician when faced with a patient with hyperphenylalaninaemias.

Balancing the presentation of information and options in patient decision aids: an updated review.

BACKGROUND: Standards for patient decision aids require that information and options be presented in a balanced manner; this requirement is based on the argument that balanced presentation is essential to foster informed decision making. If information is presented in an incomplete/non-neutral manner, it can stimulate cognitive biases that can unduly affect individuals' knowledge, perceptions of risks and benefits, and, ultimately, preferences. However, there is little clarity about what constitutes balance, and how it can be determined and enhanced. We conducted a literature review to examine the theoretical and empirical evidence related to balancing the presentation of information and options. METHODS: A literature search related to patient decision aids and balance was conducted on Medline, using MeSH terms and PubMed; this search supplemented the 2011 Cochrane Collaboration's review of patient decision aids trials. Only English language articles relevant to patient decision making and addressing the balance of information and options were included. All members of the team independently screened clusters of articles; uncertainties were resolved by seeking review by another member. The team then worked in sub-groups to extract and synthesise data on theory, definitions, and evidence reported in these studies. RESULTS: A total of 40 articles met the inclusion criteria. Of these, six explained the rationale for balancing the presentation of information and options. Twelve defined "balance"; the definition of "balance" that emerged is as follows: "The complete and unbiased presentation of the relevant options and the information about those options-in content and in format-in a way that enables individuals to process this information without bias". Ten of the 40 articles reported assessing the balance of the relevant decision aid. All 10 did so exclusively from the users' or patients' perspective, using a five-point Likert-type scale. Presenting information in a side-by-side display form was associated with more respondents (ranging from 70% to 96%) judging the information as "balanced". CONCLUSION: There is a need for comparative studies investigating different ways to improve and measure balance in the presentation of information and options in patient decision aids.

[Facilitators and barriers to HIV testing: a literature review]. / Facilitadores y barreras que enfrentan las personas al tomarse el test de ELISA para el diagnóstico del VIH: revisión de la literatura.

BACKGROUND: Late diagnosis of HIV is a problem of international and national relevance. Despite the availability of HIV testing in primary health care, it is often performed too late. AIM: To identify facilitators and barriers to early HIV testing in primary health care. METHODS: Four databases of nursing, psychological, biomedical, and health related professions areas were examined with a review protocol. Results were grouped into two main subjects: facilitators and barriers occurring among the population, among health care workers, and within primary health care centers. RESULTS: Perception of risk behaviors, self-care, social support, trust, confidentiality of the examination, the offer of the examination, and the knowledge of early treatment have been recognized as facilitators for taking the exam. The lack of information about the test and the disease are recognized as the main barrier to access the test. This information is a cornerstone to design and implement strategies to increase the number of people taking voluntarily HIV testing.

What is needed to effectively communicate risk during a health crisis? A qualitative study with international experts based on the COVID-19 pandemic.

OBJECTIVE: To identify a framework for risk communication during health crises by using the current pandemic as a case study. DESIGN: A qualitative study based on individual interviews. SETTING: Different countries with diverse levels of perceived success on risk communication during the COVID-19 health crisis. PARTICIPANTS: International experts with experience in health crisis management or risk communication. ANALYSIS: A thematic analysis was performed supported by Atlas.ti. RESULTS: Four men and six women took part in the study (three from Europe, two from Latin America, two from North America, one from Asia and two from Oceania). Three major themes emerged from the data: (1) institutionalising the communication strategy; (2) defining the problem that needs to be faced; (3) developing an effective communication strategy. CONCLUSION: Risk communication during a health crisis requires preparation of governments and of health teams in order to produce and deliver effective messages as well as to help communities to make informed and healthy decisions. This is particularly relevant for slow disasters, such as COVID-19, as the strategy must innovate to avoid information fatigue of the audience. The findings of this article could inform guidelines to best equip countries for a clear communication strategy for future crises. PROSPERO REGISTRATION NUMBER: CRD42021234443.