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1.
JMIR Diabetes ; 8: e35682, 2023 04 27.
Artículo en Inglés | MEDLINE | ID: mdl-37104030

RESUMEN

BACKGROUND: Clinical guidelines for most adults with diabetes recommend maintaining hemoglobin A1c (HbA1c) levels ≤7% (≤53 mmol/mol) to avoid microvascular and macrovascular complications. People with diabetes of different ages, sexes, and socioeconomic statuses may differ in their ease of attaining this goal. OBJECTIVE: As a team of people with diabetes, researchers, and health professionals, we aimed to explore patterns in HbA1c results among people with type 1 or type 2 diabetes in Canada. Our research question was identified by people living with diabetes. METHODS: In this patient-led retrospective cross-sectional study with multiple time points of measurement, we used generalized estimating equations to analyze the associations of age, sex, and socioeconomic status with 947,543 HbA1c results collected from 2010 to 2019 among 90,770 people living with type 1 or type 2 diabetes in Canada and housed in the Canadian National Diabetes Repository. People living with diabetes reviewed and interpreted the results. RESULTS: HbA1c results ≤7.0% represented 30.5% (male people living with type 1 diabetes), 21% (female people living with type 1 diabetes), 55% (male people living with type 2 diabetes) and 59% (female people living with type 2 diabetes) of results in each subcategory. We observed higher HbA1c values during adolescence, and for people living with type 2 diabetes, among people living in lower income areas. Among those with type 1 diabetes, female people tended to have lower HbA1c levels than male people during childbearing years but higher HbA1c levels than male people during menopausal years. Team members living with diabetes confirmed that the patterns we observed reflected their own life courses and suggested that these results be communicated to health professionals and other stakeholders to improve the treatment for people living with diabetes. CONCLUSIONS: A substantial proportion of people with diabetes in Canada may need additional support to reach or maintain the guideline-recommended glycemic control goals. Blood sugar management goals may be particularly challenging for people going through adolescence or menopause or those living with fewer financial resources. Health professionals should be aware of the challenging nature of glycemic management, and policy makers in Canada should provide more support for people with diabetes to live healthy lives.

2.
JMIR Form Res ; 7: e38430, 2023 Apr 25.
Artículo en Inglés | MEDLINE | ID: mdl-36961787

RESUMEN

BACKGROUND: To reduce the transmission of SARS-CoV-2 and the associated spread of COVID-19, many jurisdictions around the world imposed mandatory or recommended social or physical distancing. As a result, at the beginning of the pandemic, various communication materials appeared online to promote distancing. Explanations of the science underlying these mandates or recommendations were either highly technical or highly simplified. OBJECTIVE: This study aimed to understand the effects of a dynamic visualization on distancing. Our overall aim was to help people understand the dynamics of the spread of COVID-19 in their community and the implications of their own behavior for themselves, those around them, the health care system, and society. METHODS: Using Scrum, which is an agile framework; JavaScript (Vue.js framework); and code already developed for risk communication in another context of infectious disease transmission, we rapidly developed a new personalized web application. In our application, people make avatars that represent themselves and the people around them. These avatars are integrated into a 3-minute animation illustrating an epidemiological model for COVID-19 transmission, showing the differences in transmission with and without distancing. During the animation, the narration explains the science of how distancing reduces the transmission of COVID-19 in plain language in English or French. The application offers full captions to complement the narration and a descriptive transcript for people using screen readers. We used Google Analytics to collect standard usage statistics. A brief, anonymous, optional survey also collected self-reported distancing behaviors and intentions in the previous and coming weeks, respectively. We launched and disseminated the application on Twitter and Facebook on April 8, 2020, and April 9, 2020. RESULTS: After 26 days, the application received 3588 unique hits from 82 countries. The optional survey at the end of the application collected 182 responses. Among this small subsample of users, survey respondents were nearly (170/177, 96%) already practicing distancing and indicated that they intended to practice distancing in the coming week (172/177, 97.2%). Among the small minority of people (n=7) who indicated that they had not been previously practicing distancing, 2 (29%) reported that they would practice distancing in the week to come. CONCLUSIONS: We developed a web application to help people understand the relationship between individual-level behavior and population-level effects in the context of an infectious disease spread. This study also demonstrates how agile development can be used to quickly create personalized risk messages for public health issues like a pandemic. The nonrandomized design of this rapid study prevents us from concluding the application's effectiveness; however, results thus far suggest that avatar-based visualizations may help people understand their role in infectious disease transmission.

3.
J Med Internet Res ; 23(3): e15032, 2021 03 16.
Artículo en Inglés | MEDLINE | ID: mdl-33724194

RESUMEN

BACKGROUND: Researchers developing personal health tools employ a range of approaches to involve prospective users in design and development. OBJECTIVE: The aim of this paper was to develop a validated measure of the human- or user-centeredness of design and development processes for personal health tools. METHODS: We conducted a psychometric analysis of data from a previous systematic review of the design and development processes of 348 personal health tools. Using a conceptual framework of user-centered design, our team of patients, caregivers, health professionals, tool developers, and researchers analyzed how specific practices in tool design and development might be combined and used as a measure. We prioritized variables according to their importance within the conceptual framework and validated the resultant measure using principal component analysis with Varimax rotation, classical item analysis, and confirmatory factor analysis. RESULTS: We retained 11 items in a 3-factor structure explaining 68% of the variance in the data. The Cronbach alpha was .72. Confirmatory factor analysis supported our hypothesis of a latent construct of user-centeredness. Items were whether or not: (1) patient, family, caregiver, or surrogate users were involved in the steps that help tool developers understand users or (2) develop a prototype, (3) asked their opinions, (4) observed using the tool or (5) involved in steps intended to evaluate the tool, (6) the process had 3 or more iterative cycles, (7) changes between cycles were explicitly reported, (8) health professionals were asked their opinion and (9) consulted before the first prototype was developed or (10) between initial and final prototypes, and (11) a panel of other experts was involved. CONCLUSIONS: The User-Centered Design 11-item measure (UCD-11) may be used to quantitatively document the user/human-centeredness of design and development processes of patient-centered tools. By building an evidence base about such processes, we can help ensure that tools are adapted to people who will use them, rather than requiring people to adapt to tools.


Asunto(s)
Cuidadores , Análisis Factorial , Humanos , Estudios Prospectivos , Psicometría
4.
Med Decis Making ; 41(3): 261-274, 2021 04.
Artículo en Inglés | MEDLINE | ID: mdl-33655791

RESUMEN

BACKGROUND: When designing and developing patient decision aids, guidelines recommend involving patients and stakeholders. There are myriad ways to do this. We aimed to describe how such involvement occurs by synthesizing reports of patient decision aid design and development within a user-centered design framework and to provide context by synthesizing reports of user-centered design applied to other personal health tools. METHODS: We included articles describing at least one development step of 1) a patient decision aid, 2) user- or human-centered design of another personal health tool, or 3) evaluation of these. We organized data within a user-centered design framework comprising 3 elements in iterative cycles: understanding users, developing/refining prototype, and observing users. RESULTS: We included 607 articles describing 325 patient decision aid projects and 65 other personal health tool projects. Fifty percent of patient decision aid projects reported involving users in at least 1 step for understanding users, 35% in at least 1 step for developing/refining the prototype, and 84% in at least 1 step for observing users' interaction with the prototype. In comparison, other personal health tool projects reported 91%, 49%, and 92%, respectively. A total of 74% of patient decision aid projects and 92% of other personal health tool projects reported iterative processes, both with a median of 3 iterative cycles. Preliminary evaluations such as usability or feasibility testing were reported in 66% of patient decision aid projects and 89% of other personal health tool projects. CONCLUSIONS: By synthesizing design and development practices, we offer evidence-based portraits of user involvement. Those wishing to further align patient decision aid design and development with user-centered design methods could involve users earlier, design and develop iteratively, and report processes in greater detail.


Asunto(s)
Técnicas de Apoyo para la Decisión , Diseño Centrado en el Usuario , Humanos
5.
Med Decis Making ; 40(6): 722-734, 2020 08.
Artículo en Inglés | MEDLINE | ID: mdl-32696715

RESUMEN

Background. Values clarification, or sorting out what matters to a patient or family relevant to a health decision, is a fundamental part of shared decision making. We aimed to describe how values clarification occurs in routine primary care. Methods. Using framework analysis and an established taxonomy, 2 independent researchers analyzed 260 consultations in 5 family medicine clinics across Quebec. Two questions guided our analyses: 1) What categories exist regarding what matters to patients? 2) What patterns exist in discussions of what matters to patients? Results. 1) Five distinct categories of what matters to patients and families were discussed during values clarification: preferences, concerns, treatment-specific values, life goals or philosophies, and broader contextual or sociocultural values. Preferences and concerns were the matters most commonly raised. 2) Diverse patterns of values clarification emerged based on 3 analytical questions: Who initiates the discussion about what matters to patients? When? What information is discussed? The most frequent pattern was clinicians soliciting patients' concerns and preferences during the information-gathering phase. The second most common pattern was similar, except that patients' spontaneously raised what matters to them. Limitations. The study was descriptive and based on audio-recorded visits. We did not interview patients and clinicians to elicit their perspectives. Conclusions. There are 5 distinct categories of what matters to patients and families as well as clear patterns of how values clarification occurs in routine primary care consultations. Clinicians could be sensitive to these categories when engaging in the process of values clarification and may wish to pay particular attention to the opening minutes of a consultation. This study provides a structure for future identification of best practices in values clarification.


Asunto(s)
Familia/psicología , Prioridad del Paciente/psicología , Pacientes/psicología , Adulto , Femenino , Humanos , Masculino , Participación del Paciente/métodos , Relaciones Profesional-Paciente , Valores Sociales
6.
BMJ Open ; 10(4): e032762, 2020 04 29.
Artículo en Inglés | MEDLINE | ID: mdl-32354775

RESUMEN

OBJECTIVE: People living with diabetes need and deserve high-quality, individualised care. However, providing such care remains a challenge in many countries, including Canada. Patients' expertise, if acknowledged and adequately translated, could help foster patient-centred care. This study aimed to describe Expert Patients' knowledge, wisdom and advice to others with diabetes and to health professionals to improve diabetes self-management and care. DESIGN AND METHODS: We recruited a convenience sample of 21 men and women. Participants were people of diverse backgrounds who are Patient Partners in a national research network (hereafter Expert Patients). We interviewed and video-recorded their knowledge, wisdom and advice for health professionals and for others with diabetes. Three researchers independently analysed videos using inductive framework analysis, identifying themes through discussion and consensus. Expert Patients were involved in all aspects of study design, conduct, analysis and knowledge translation. RESULTS: Acknowledging and accepting the reality of diabetes, receiving support from family and care teams and not letting diabetes control one's life are essential to live well with diabetes. To improve diabetes care, health professionals should understand and acknowledge the impact of diabetes on patients and their families, and communicate with patients openly, respectfully, with empathy and cultural competency. CONCLUSION: Expert Patients pointed to a number of areas of improvement in diabetes care that may be actionable individually by patients or health professionals, and also collectively through intergroup collaboration. Improving the quality of care in diabetes is crucial for improving health outcomes for people with diabetes.


Asunto(s)
Diabetes Mellitus/terapia , Educación del Paciente como Asunto/métodos , Participación del Paciente/métodos , Atención Dirigida al Paciente/métodos , Automanejo/métodos , Adulto , Anciano , Canadá , Toma de Decisiones Conjunta , Diabetes Mellitus/psicología , Familia , Femenino , Conocimientos, Actitudes y Práctica en Salud , Personal de Salud/educación , Humanos , Masculino , Persona de Mediana Edad , Atención Dirigida al Paciente/normas , Investigación Cualitativa , Mejoramiento de la Calidad , Grabación en Video , Adulto Joven
7.
PLoS One ; 14(8): e0219630, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31408462

RESUMEN

Previous surveys of neonatal medicine in China have not collected comprehensive information on antibiotic use in newborns. The goal of the present study was to assess the trends in antibiotic use in inpatient newborns from advanced hospitals in mainland China and to evaluate the contributing factors. We extracted retrospective data on newborn clinical units from a database containing key clinical subspecialty area indicators from provincial or ministerial (Class A level III) hospitals over three consecutive years (2008-2010) and in 25 of 31 provincial districts of mainland China. Fifty-five newborn units were included in the study. The results showed that two thirds (65.7% ± 23.1%) of inpatient newborns were prescribed antibiotic products. Antibiotic use rates were significantly different by newborn ward bed capacity (p = 0.023; 60.6% for d capacity (ficant65.7% ± 23-100 beds group, and 77.1% for (ficant65.7% ± 23.1%) of inpatient newb significantly different by type of hospital, geographic area, admission to physician or nurse ratio, or physician or nurse academic degree. Factors contributing significantly to antibiotic use included ward bed capacity, physician to nurse ratio, average hospital stay, and pneumonia to preterm infant ratio. Our data suggested that the use of antibiotics among inpatient newborns in advanced hospitals in mainland China was prevalent and should be subject to rigorous monitoring, and highlighted the need to explore how newborn ward bed capacity potentially impacts antibiotic use.


Asunto(s)
Antibacterianos/administración & dosificación , Ocupación de Camas/estadística & datos numéricos , Prescripciones de Medicamentos/estadística & datos numéricos , Utilización de Medicamentos/estadística & datos numéricos , Pacientes Internos/estadística & datos numéricos , Unidades de Cuidado Intensivo Neonatal/estadística & datos numéricos , Estudios Transversales , Hospitalización , Humanos , Recién Nacido , Estudios Retrospectivos
8.
BMC Med Inform Decis Mak ; 19(1): 84, 2019 04 11.
Artículo en Inglés | MEDLINE | ID: mdl-30975132

RESUMEN

BACKGROUND: Shared decision making is associated with improved patient outcomes in radiation oncology. Our study aimed to capture how shared decision-making practices-namely, communicating potential harms and benefits and discussing what matters to patients-occur in usual care. METHODS: We invited a convenience sample of clinicians and patients in a radiation oncology clinic to participate in a mixed methods study. Prior to consultations, clinicians and patients completed self-administered questionnaires. We audio-recorded consultations and conducted qualitative content analysis. Patients completed a questionnaire immediately post-consultation about their recall and perceptions. RESULTS: 11 radiation oncologists, 4 residents, 14 nurses, and 40 patients (55% men; mean age 64, standard deviation or SD 9) participated. Patients had a variety of cancers; 30% had been referred for palliative radiotherapy. During consultations (mean length 45 min, SD 16), clinicians presented a median of 8 potential harms (interquartile range 6-11), using quantitative estimates 17% of the time. Patients recalled significantly fewer harms (median recall 2, interquartile range 0-3, t(38) = 9.3, p < .001). Better recall was associated with discussing potential harms with a nurse after seeing the physician (odds ratio 7.5, 95% confidence interval 1.3-67.0, p = .04.) Clinicians initiated 63% of discussions of harms and benefits while patients and families initiated 69% of discussions about values and preferences (Chi-squared(1) = 37.8, p < .001). 56% of patients reported their clinician asked what mattered to them. CONCLUSIONS: Radiation oncology clinics may wish to use interprofessional care and initiate more discussions about what matters to patients to heed Jain's (2014) reminder that, "a patient isn't a disease with a body attached but a life into which a disease has intruded."


Asunto(s)
Prioridad del Paciente , Oncología por Radiación , Derivación y Consulta , Adulto , Anciano , Toma de Decisiones Conjunta , Femenino , Humanos , Masculino , Persona de Mediana Edad , Relaciones Médico-Paciente , Proyectos de Investigación , Encuestas y Cuestionarios
9.
J Gen Intern Med ; 33(4): 558-562, 2018 04.
Artículo en Inglés | MEDLINE | ID: mdl-29327211

RESUMEN

Research increasingly means that patients, caregivers, health professionals, other stakeholders, and academic investigators work in partnership. This requires effective collaboration rooted in mutual respect, involvement of all participants, and good communication. Having conducted such partnered research over multiple projects, and having recently completed a project together funded by the Patient-Centered Outcomes Research Institute, we collaboratively developed a list of 12 lessons we have learned about how to ensure effective research partnerships. To foster a culture of mutual respect, hold early in-person meetings, with introductions focused on motivation, offer appropriate orientation for everyone, and maintain awareness of individual and project goals. To actively involve all team members, it is important to ensure sufficient funding for everyone's participation, to ask for and recognize diverse contributions, and to seek the input of quiet members. To facilitate good communication, teams should carefully consider labels, avoid jargon and acronyms, judiciously use homogeneous and heterogeneous subgroups, and keep progress visible. In offering pragmatic, actionable lessons we have learned through our separate and shared experiences, we hope to help foster more patient-centered research via productive and enjoyable research collaborations.


Asunto(s)
Investigación Biomédica/métodos , Evaluación del Resultado de la Atención al Paciente , Cuidadores , Consenso , Conducta Cooperativa , Técnica Delphi , Personal de Salud , Humanos , Pacientes , Investigadores/organización & administración , Participación de los Interesados
10.
Health Expect ; 21(2): 549-559, 2018 04.
Artículo en Inglés | MEDLINE | ID: mdl-29165920

RESUMEN

BACKGROUND: Diabetes is a chronic disease with increasing prevalence worldwide. Although research has improved its treatment and management, little is known about which research topics matter to people living with diabetes, particularly among under-represented groups. OBJECTIVES: To explore the importance of research topics among a diverse range of people living with any type of diabetes or caring for someone living with any type of diabetes. METHODS: We used a convergent mixed-method design with quantitative and qualitative aspects. We surveyed a national sample of people living with diabetes and caregivers of people with diabetes, asking them to rate the importance of 10 predetermined important research topics. We also held three focus groups in two major cities to explore research concerns of people who are under-represented in research. RESULTS: 469 adults (57% men, 42% women) in Canada completed the online survey, indicating that all 10 areas of research mattered to them, with the highest ratings accorded to preventing and treating kidney, eye and nerve complications. Fourteen individuals participated in three focus groups and similarly noted the importance of research on those three complications. Additionally, focus group participants also noted the importance of research around daily management. No new topics were identified. CONCLUSIONS: This study confirmed the importance of research topics among a population of people living with or caring for someone with diabetes. Findings from this study were used to inform the vision for Diabetes Action Canada-a pan-Canadian Strategy for Patient-Oriented Research (SPOR) Network on diabetes and its complications.


Asunto(s)
Cuidadores/psicología , Diabetes Mellitus/psicología , Prioridades en Salud , Pacientes/psicología , Investigación , Adulto , Anciano , Actitud Frente a la Salud , Canadá , Complicaciones de la Diabetes , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Calidad de Vida , Encuestas y Cuestionarios , Adulto Joven
11.
J Matern Fetal Neonatal Med ; 31(7): 843-849, 2018 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-28277914

RESUMEN

OBJECTIVES: To summarize academic productivity of neonatal medicine in China and explore its relationship with health care workforce and activities. METHODS: We retrospectively extracted data from national key clinical subspecialty proposals, and used accessible databases as Science Citation Index (SCI), PubMed, and National Natural Science Foundation of China. RESULTS: Between 2008 and 2010, 61 newborn units at the most advanced level in 31 cities from 28 of 31 provincial districts in mainland China were included. Fifty-two national or international projects and 111 provincial projects were conducted. A total of 171 articles were listed in the SCI database; 23 patents were registered. There were 83 oral presentations in international conferences abroad. One national and 40 provincial government awards were received. Health workforce indexes, such as physicians with MD&PhD degrees, were significantly related to academic productivity. National or international projects (ß = .285, p <.001; 95% CI = 0.179, 0.391) and the number of newborn beds (ß = .005, p = .016; 95% CI = 0.001, 0.008) were two underlying factors to determine government awards (adjusted R2 = .426). The 10 main cities for neonatal medicine research were also listed. CONCLUSION: In this study, we established the baseline information on neonatal medicine research in China, which could provide information for further practice.


Asunto(s)
Investigación Biomédica/estadística & datos numéricos , Neonatología/estadística & datos numéricos , Distinciones y Premios , China , Estudios Transversales , Femenino , Humanos , Publicaciones Periódicas como Asunto/estadística & datos numéricos , Embarazo , Estudios Retrospectivos , Encuestas y Cuestionarios
12.
PLoS One ; 12(1): e0169970, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28099450

RESUMEN

Previous surveys of neonatal medicine in China have not collected comprehensive information on workforce, investment, health care practice, and disease expenditure. The goal of the present study was to develop a national database of neonatal care units and compare present outcomes data in conjunction with health care practices and costs. We summarized the above components by extracting data from the databases of the national key clinical subspecialty proposals issued by national health authority in China, as well as publicly accessible databases. Sixty-one newborn clinical units from provincial or ministerial hospitals at the highest level within local areas in mainland China, were included for the study. Data were gathered for three consecutive years (2008-2010) in 28 of 31 provincial districts in mainland China. Of the 61 newborn units in 2010, there were 4,948 beds (median = 62 [IQR 43-110]), 1,369 physicians (median = 22 [IQR 15-29]), 3,443 nurses (median = 52 [IQR 33-81]), and 170,159 inpatient discharges (median = 2,612 [IQR 1,436-3,804]). During 2008-2010, the median yearly investment for a single newborn unit was US$344,700 (IQR 166,100-585,800), median length of hospital stay for overall inpatient newborns 9.5 (IQR 8.2-10.8) days, median inpatient antimicrobial drug use rate 68.7% (IQR 49.8-87.0), and median nosocomial infection rate 3.2% (IQR1.7-5.4). For the common newborn diseases of pneumonia, sepsis, respiratory distress syndrome, and very low birth weight (<1,500 grams) infants, their lengths of hospital stay, daily costs, hospital costs, ratios of hospital cost to per-capita disposable income, and ratios of hospital cost to per-capita health expenditure, were all significantly different across regions (North China, Northeast China, East China, South Central China, Southwest China, and Northwest China). The survival rate of extremely low birth weight (ELBW) infants (Birth weight <1,000 grams) was 76.0% during 2008-2010 in the five hospitals where each unit had more than 20 admissions of ELBW infants in 2010; and the median hospital cost for a single hospital stay in ELBW infants was US$8,613 (IQR 8,153-9,216), which was 3.0 times (IQR 2.0-3.2) the average per-capita disposable income, or 63 times (IQR 40.3-72.1) the average per-capita health expenditure of local urban residents in 2011. Our national database provides baseline data on the status of advanced neonatal medicine in China, gathering valuable information for quality improvement, decision making, longitudinal studies and horizontal comparisons.


Asunto(s)
Infección Hospitalaria/epidemiología , Bases de Datos Factuales , Recien Nacido con Peso al Nacer Extremadamente Bajo , Neonatología , Antibacterianos/uso terapéutico , China , Infección Hospitalaria/tratamiento farmacológico , Humanos , Lactante , Mortalidad Infantil , Recién Nacido , Unidades de Cuidado Intensivo Neonatal/economía , Unidades de Cuidado Intensivo Neonatal/estadística & datos numéricos , Tiempo de Internación/economía , Tiempo de Internación/estadística & datos numéricos , Neonatología/estadística & datos numéricos , Síndrome de Dificultad Respiratoria del Recién Nacido , Recursos Humanos
13.
BMC Med Inform Decis Mak ; 17(1): 12, 2017 Jan 19.
Artículo en Inglés | MEDLINE | ID: mdl-28103862

RESUMEN

BACKGROUND: Patient decision aids aim to present evidence relevant to a health decision in understandable ways to support patients through the process of making evidence-informed, values-congruent health decisions. It is recommended that, when developing these tools, teams involve people who may ultimately use them. However, there is little empirical evidence about how best to undertake this involvement, particularly for specific populations of users such as vulnerable populations. METHODS: To describe and compare the development practices of research teams that did and did not specifically involve members of vulnerable populations in the development of patient decision aids, we conducted a secondary analysis of data from a systematic review about the development processes of patient decision aids. Then, to further explain our quantitative results, we conducted semi-structured telephone interviews with 10 teams: 6 that had specifically involved members of vulnerable populations and 4 that had not. Two independent analysts thematically coded transcribed interviews. RESULTS: Out of a total of 187 decision aid development projects, 30 (16%) specifically involved members of vulnerable populations. The specific involvement of members of vulnerable populations in the development process was associated with conducting informal needs assessment activities (73% vs. 40%, OR 2.96, 95% CI 1.18-7.99, P = .02) and recruiting participants through community-based organizations (40% vs. 11%, OR 3.48, 95% CI 1.23-9.83, P = .02). In interviews, all developers highlighted the importance, value and challenges of involving potential users. Interviews with developers whose projects had involved members of vulnerable populations suggested that informal needs assessment activities served to center the decision aid around users' needs, to better avoid stigma, and to ensure that the topic truly matters to the community. Partnering with community-based organizations may facilitate relationships of trust and may also provide a non-threatening and accessible location for research activities. CONCLUSIONS: There are a small number of key differences in the development processes for patient decision aids in which members of vulnerable populations were or were not specifically involved. Some of these practices may require additional time or resources. To address health inequities, researchers, communities and funders may need to increase awareness of these approaches and plan accordingly.


Asunto(s)
Técnicas de Apoyo para la Decisión , Participación del Paciente , Poblaciones Vulnerables , Investigación sobre Servicios de Salud , Humanos
14.
Med Decis Making ; 36(6): 760-76, 2016 08.
Artículo en Inglés | MEDLINE | ID: mdl-27044883

RESUMEN

BACKGROUND: Diverse values clarification methods exist. It is important to understand which, if any, of their design features help people clarify values relevant to a health decision. PURPOSE: To explore the effects of design features of explicit values clarification methods on outcomes including decisional conflict, values congruence, and decisional regret. DATA SOURCES: MEDLINE, all EBM Reviews, CINAHL, EMBASE, Google Scholar, manual search of reference lists, and expert contacts. STUDY SELECTION: Articles were included if they described the evaluation of 1 or more explicit values clarification methods. DATA EXTRACTION: We extracted details about the evaluation, whether it was conducted in the context of actual or hypothetical decisions, and the results of the evaluation. We combined these data with data from a previous review about each values clarification method's design features. DATA SYNTHESIS: We identified 20 evaluations of values clarification methods within 19 articles. Reported outcomes were heterogeneous. Few studies reported values congruence or postdecision outcomes. The most promising design feature identified was explicitly showing people the implications of their values, for example, by displaying the extent to which each of their decision options aligns with what matters to them. LIMITATIONS: Because of the heterogeneity of outcomes, we were unable to perform a meta-analysis. Results should be interpreted with caution. CONCLUSIONS: Few values clarification methods have been evaluated experimentally. More research is needed to determine effects of different design features of values clarification methods and to establish best practices in values clarification. When feasible, evaluations should assess values congruence and postdecision measures of longer-term outcomes.


Asunto(s)
Toma de Decisiones , Participación del Paciente/métodos , Humanos
15.
Med Decis Making ; 36(4): 453-71, 2016 05.
Artículo en Inglés | MEDLINE | ID: mdl-26826032

RESUMEN

BACKGROUND: Values clarification is a recommended element of patient decision aids. Many different values clarification methods exist, but there is little evidence synthesis available to guide design decisions. PURPOSE: To describe practices in the field of explicit values clarification methods according to a taxonomy of design features. DATA SOURCES: MEDLINE, all EBM Reviews, CINAHL, EMBASE, Google Scholar, manual search of reference lists, and expert contacts. STUDY SELECTION: Articles were included if they described 1 or more explicit values clarification methods. DATA EXTRACTION: We extracted data about decisions addressed; use of theories, frameworks, and guidelines; and 12 design features. DATA SYNTHESIS: We identified 110 articles describing 98 explicit values clarification methods. Most of these addressed decisions in cancer or reproductive health, and half addressed a decision between just 2 options. Most used neither theory nor guidelines to structure their design. "Pros and cons" was the most common type of values clarification method. Most methods did not allow users to add their own concerns. Few methods explicitly presented tradeoffs inherent in the decision, supported an iterative process of values exploration, or showed how different options aligned with users' values. LIMITATIONS: Study selection criteria and choice of elements for the taxonomy may have excluded values clarification methods or design features. CONCLUSIONS: Explicit values clarification methods have diverse designs but can be systematically cataloged within the structure of a taxonomy. Developers of values clarification methods should carefully consider each of the design features in this taxonomy and publish adequate descriptions of their designs. More research is needed to study the effects of different design features.


Asunto(s)
Conducta de Elección , Toma de Decisiones Clínicas/métodos , Técnicas de Apoyo para la Decisión , Participación del Paciente/métodos , Prioridad del Paciente , Humanos
16.
Risk Anal ; 35(10): 1801-19, 2015 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-25996456

RESUMEN

Many health-related decisions require choosing between two options, each with risks and benefits. When presented with such tradeoffs, people often make choices that fail to align with scientific evidence or with their own values. This study tested whether risk communication and values clarification methods could help parents and guardians make evidence-based, values-congruent decisions about children's influenza vaccinations. In 2013-2014 we conducted an online 2×2 factorial experiment in which a diverse sample of U.S. parents and guardians (n = 407) were randomly assigned to view either standard information about influenza vaccines or risk communication using absolute and incremental risk formats. Participants were then either presented or not presented with an interactive values clarification interface with constrained sliders and dynamic visual feedback. Participants randomized to the risk communication condition combined with the values clarification interface were more likely to indicate intentions to vaccinate (ß = 2.10, t(399) = 2.63, p < 0.01). The effect was particularly notable among participants who had previously demonstrated less interest in having their children vaccinated against influenza (ß = -2.14, t(399) = -2.06, p < 0.05). When assessing vaccination status reported by participants who agreed to participate in a follow-up study six months later (n = 116), vaccination intentions significantly predicted vaccination status (OR = 1.66, 95%CI (1.13, 2.44), p < 0.05) and rates of informed choice (OR = 1.51, 95%CI (1.07, 2.13), p < 0.012), although there were no direct effects of experimental factors on vaccination rates. Qualitative analysis suggested that logistical barriers impeded immunization rates. Risk communication and values clarification methods may contribute to increased vaccination intentions, which may, in turn, predict vaccination status if logistical barriers are also addressed.


Asunto(s)
Toma de Decisiones , Medición de Riesgo , Vacunación , Niño , Preescolar , Humanos
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