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BACKGROUND: Clinical practice guidelines (CPGs) are designed to assist health care professionals in medical decision-making, but they often lack effective integration of shared decision-making (SDM) principles to reflect patient values and preferences, particularly in the context of preference-sensitive CPG recommendations. To address this shortcoming and foster SDM through CPGs, the integration of patient decision aids (PDAs) into CPGs has been proposed as an important strategy. However, methods for systematically identifying and prioritizing CPG recommendations relevant to SDM and related decision support tools are currently lacking. OBJECTIVE: The aim of the project is to develop (1) a tool for systematically identifying and prioritizing CPG recommendations for which SDM is considered particularly relevant and (2) a platform for PDAs to support practical SDM implementation. METHODS: The project consists of 6 work packages (WPs). It is embedded in the German health care context but has an international focus. In WP 1, we will conduct a scoping review in bibliographic databases and gray literature sources to identify methods used to foster SDM via PDAs in the context of CPGs. In WP 2, we will conduct semistructured interviews with CPG experts to better understand the concepts of preference sensitivity and identify strategies for fostering SDM through CPGs. WP 3, a modified Delphi study including surveys and focus groups with SDM experts, aims to define and operationalize preference sensitivity. Based on the results of the Delphi study, we will develop a methodology for prioritizing key questions in CPGs. In WP 4, the tool will be developed. A list of relevant items to identify CPG recommendations for which SDM is most relevant will be created, tested, and iteratively refined, accompanied by the development of a user manual. In WP 5, a platform for creating and digitizing German-language PDAs will be developed to support the practical application of SDM during clinical encounters. WP 6 will conclude the project by testing the tool with newly developed and revised CPGs. RESULTS: The Brandenburg Medical School Ethics Committee approved the project (165122023-ANF). An international multidisciplinary advisory board is involved to guide the tool development on CPGs and SDM. Patient partners are involved throughout the project, considering the essential role of the patient perspective in SDM. As of February 20, 2024, we are currently assessing literature references to determine eligibility for inclusion in the scoping review (WP 1). We expect the project to be completed by December 31, 2026. CONCLUSIONS: The tool will enable CPG developers to systematically incorporate aspects of SDM into CPG development, thereby providing guideline-based support for the patient-practitioner interaction. Together, the tool for CPGs and the platform for PDAs will create a systematic link between CPGs, SDM, and PDAs, which may facilitate SDM in clinical practice. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/57611.
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Toma de Decisiones Conjunta , Personal de Salud , Guías de Práctica Clínica como Asunto , Humanos , Técnicas de Apoyo para la Decisión , Participación del Paciente/métodosRESUMEN
OBJECTIVE: To review and compare the efficacy of different delivery modes of decision aids (DAs), including computer-based, print-based, multimedia-based, video-based, and website-based on decision-making outcomes for prostate cancer screening compared to usual care (UC) and among the delivery modes. METHODS: PubMed, the Excerpta Medica dataBASE (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Google Advanced Search, and Turning Research Into Practice (TRIP) Database were systematically searched from inception to August 2023. The primary outcomes were knowledge level, knowledge scores, participation in shared decision-making (SDM), decisional conflict, and preference for SDM participation. Secondary outcomes were the proportion of subjects who underwent screening (actual screening utilisation) and the proportion of subjects who intended to be screened (intention to undergo screening). Network and pairwise meta-analyses were performed using random-effects models. RESULTS: Seven systematic reviews were included. Network meta-analysis found that multimedia (relative risk [RR] 1.51, 95% confidence interval [CI] 1.02-2.24), print (RR 1.82, 95% CI 1.23-2.69), and website-based (RR 1.99, 95% CI 1.32-3.01) DAs significantly increased participation in SDM compared to the computer-based DA. There was a significant reduction in the actual screening utilisation in the computer DA arm compared to the other delivery modes. No significant differences between all delivery modes were noted on knowledge levels, knowledge scores, decisional conflict, preference for SDM participation, and intention to undergo screening. The highest mean surface under the cumulative ranking curve for all primary outcomes showed that website-based was the most effective delivery mode, followed by print-based DA. The pairwise meta-analysis showed a significant increase in participants' knowledge level, knowledge scores, a reduced intention to undergo screening and actual screening utilisation compared to UC. CONCLUSIONS: The findings suggest that different types of DAs have varying levels of effectiveness in increasing knowledge level, knowledge scores, participation in SDM, and influencing screening behaviours. While website-based DA appeared the most effective, employing the print-based DA could be a practical solution in settings with limited resources.
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BACKGROUND: Novice nurses often find endotracheal suctioning signs unfamiliar. The Endotracheal Suction Assessment Tool© (ESAT©) aids pediatric nurses in suctioning but lacks an adult equivalent. A valid and reliable ESAT© for assessing intensive care unit patients' suction needs across different populations is necessary. AIM: To test the validity and reliability of the ESAT© in adult ICU patients. METHODS: This methodological study assessed suction needs in patients at a tertiary adult ICU of a university hospital. Two independent observers used the ESAT© to determine suction needs. Data from 106 suction procedures were collected using a patient characteristics form, the ESAT©, and a suction monitoring form. The ESAT© includes eight respiratory and ventilation parameters and seven clinical consideration parameters. Hemodynamic and respiratory parameters were measured before, and one and five minutes after suction. Linguistic validity, content validity, and pilot testing were conducted. Interobserver agreement was evaluated, and psychometric evaluation was done using content validity index (CVI) and intraclass correlation coefficient (ICC). Data were analyzed with paired samples t-test and ANOVA. RESULTS: Item CVI ranged from 0.80 to 1.00, and scale CVI was 0.96. Inter-item correlation and ICC for inter-rater reliability were both 0.933 (95 % CI = 0.903-0.954, p < 0.001 for ICC). Cohen's Kappa coefficients ranged from 0.690 to 1.000 (p < 0.001), indicating high consistency between raters for all tool items. All scale items showed near-perfect agreement except SpO2, which showed substantial agreement. CONCLUSION: The S-CVI was good, indicating near-perfect agreement among raters. ESAT© is highly reliable and valid for determining suction needs in adult intensive care patients. IMPLICATIONS FOR PRACTICE: The ESAT© aids autonomous decision-making for suctioning needs. Originally for novice pediatric nurses, the ESAT© was adapted for adult intensive care nurses. The ESAT© is valid and reliable for adult intensive care patients.
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Background: For autistic youth and young adults, deciding whether to disclose their autism at work may be complex since they are newly entering the workforce and are at an impressionable developmental period. Decision-aid tools can help someone make a choice regarding a topic/situation. We developed a workplace autism disclosure decision-aid tool called DISCLOSURE (Do I Start the Conversation and Let On, Speak Up, and REveal?) to support autistic youth and young adults navigate disclosure decision-making. In this study, we aimed to assess the DISCLOSURE tool's (1) impact on decision-making and self-determination capabilities and (2) usability, feasibility, and acceptability. Methods: This was a single-arm pre-post pilot study. The DISCLOSURE tool comprises three interactive PDF documents and videos. Thirty participants (mean age of 23.5 years) completed online surveys before and after interacting with the DISCLOSURE tool. We used descriptive statistics for usability, feasibility, and acceptability. We calculated the Wilcoxon signed rank and paired t-tests to determine pre-post changes in decision-making and self-determination capabilities (Decisional Conflict Scale-Low Literacy Version [DCS-LL]; adapted Arc's Self-Determination Scale). We analyzed open-ended data using conventional (inductive) content analysis. Results: There were significant decreases in DCS-LL total and subscale scores (p < 0.0001) and a significant increase in Arc's total score (p = 0.01), suggesting important improvements. There were no significant increases for Arc's psychological empowerment and self-realization subscales (p = 0.05; p = 0.09). Median scores (4.0/5.0) indicate that participants agreed that the DISCLOSURE tool is acceptable, feasible, and meets the usability criteria. We developed four categories to describe the open-ended data: (1) disclosure capabilities, (2) the role of others, (3) positive tool impact and feedback, and (4) minimal tool impact and constructive feedback. Discussion: Findings are suggestive of the DISCLOSURE tool's ability to support workplace autism disclosure decision-making. Future studies should ascertain the DISCLOSURE tool's effectiveness, explore others' feedback (e.g., employers), and how to incorporate the tool into relevant employment and vocational programs.
Why is this topic important? Autistic youth and young adults face a dilemma when starting their first jobs: should they disclose their autism at work? This is a complicated decision and involves considering many factors, benefits, and risks. Our team developed a decision-aid tool to help with this decision-making process called DISCLOSURE (Do I Start the Conversation and Let On, Speak Up and REveaL?). This study is important because it is the first to assess the DISCLOSURE tool and explore if it may be helpful. What is the purpose of this article? This study had two main goals. First, we assessed if the DISCLOSURE tool helps to build self-determination and decision-making knowledge, skills, and confidence. Second, we explored if participants thought that the DISCLOSURE tool is usable, acceptable, and can be used in the real world (feasible). What did the researchers do? We recruited 30 participants (average age of 23.5 years) to complete two online surveysone before and one after using the DISCLOSURE tool. We analyzed the data to observe if there were changes in decision-making and self-determination knowledge, skills, and confidence. We also explored how participants rated the acceptability, feasibility, and usability of the DISCLOSURE tool. We read through open-ended answers to group them into categories. What did the researchers find? We found important improvements in participants' decision-making knowledge, skills, and confidence. The DISCLOSURE tool shows promise to improve self-determination. Participants agreed that the DISCLOSURE tool is usable, acceptable, and feasible. Many participants said that the DISCLOSURE tool can help them make disclosure decisions at work. Some participants said that the tool was not as helpful for them. This is because they already had disclosure knowledge and experience. Overall, the study results suggest that the tool may support some autistic young people with the disclosure decision-making process. What do these findings add to what is already known? Few tools exist that support disclosure decision-making. Research also shows that young autistic people find it hard to make autism disclosure decisions at work and may need help. This study is the first to assess a tool that may close important gaps and help autistic young people make disclosure choices. What are potential weaknesses in the study? We need to continue testing the DISCLOSURE tool since this is the first time that we assessed it. We also missed some important perspectives in this study. Most participants were white, cisgender women, or nonbinary from Ontario, Canada, and needed internet and a tech device to take part. How will these findings help autistic young people now or in the future? Results show that the DISCLOSURE tool may help autistic youth and young adults make disclosure choices at work. We will continue to assess the DISCLOSURE tool to make sure it is effective. Autistic youth and young adults could use the DISCLOSURE tool in the future to help guide their disclosure choices at work. Relevant service providers could also use the DISCLOSURE tool with their autistic clients.
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BACKGROUND: Primary care providers (PCPs) prescribe less often treatments for smoking cessation than for other major risk factors. We assessed the effect of training PCPs to offer smoking cessation treatments to current smokers as the default choice using an encounter decision aid (DA) on smoking cessation. METHODS: Pragmatic, cluster-randomized controlled trial with PCPs in private practice in Switzerland and France. The intervention was a half-day course teaching PCPs the default choice approach using a DA. Control PCPs received a 1-h refresher training on smoking cessation aids. PCPs recruited daily smokers seen for routine care. The primary outcome was self-reported, 7-day, point prevalence smoking abstinence at 6 months. Secondary outcomes were quit attempts and use of smoking cessation aids at 3 weeks, 3 months, and 6 months, and a patient-reported measure of shared decision-making (CollaboRATE scale 1-10, higher scores = more involvement). RESULTS: Forty-two PCPs completed the training (76% Swiss) and recruited 287 current smokers (105 intervention group, 182 control group), with 51% women, mean age 48 (SD, 2.6), 77% who smoked <20 cigarettes/day, and 221 who responded at 6 months follow-up (77%). The intervention did not affect self-reported smoking abstinence rate at 6 months (9.5% intervention and 10.4% control groups, respectively; OR 0.88 (95%CI 0.37-2.10). It did however increase the number of quit attempts at 3 weeks (OR 2.09, 95%CI 1.04-4.20) and the use of smoking cessation aids at the 3-week and 3-month follow-ups (OR 2.57, 95%CI 1.21-5.45 and OR 2.00, 95%CI 1.11-3.60, respectively). The mean CollaboRATE score was 8.05/10 in the intervention group and 7.28/10 in the control group (p=0.02), reflecting more patient involvement in decision-making. CONCLUSION: Training PCPs to use a decision aid did not improve smoking abstinence rate, despite short-term increases in quit attempts and use of smoking cessation aids. It improved patient involvement in decision-making. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT04868474.
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BACKGROUND: Since December 2019, COVID-19 led to a pandemic causing many hospitalizations and deaths. Vaccinations were developed and introduced to control viral transmission. In the Dutch context, the decision to accept vaccination is not mandatory. An informed decision is based on sufficient and reliable information, in line with one's attitudes and values, and with consideration of pros and cons. To support people in informed decision-making, we developed an online COVID-19 vaccination decision aid (DA). OBJECTIVE: This article aims to describe the development, dissemination, and use of the DA. METHODS: Building on a previously developed DA, the COVID-19 vaccination DA was developed in 3 phases following a user-centered design approach: (1) definition phase, (2) concept testing, and (3) prototype testing. End users, individuals with low literacy, and experts (with relevant expertise on medical, behavioral, and low literacy aspects) were involved in the iterative development, design, and testing, with their feedback forming the basis for adaptations to the DA. RESULTS: The DA was developed within 14 weeks. The DA consists of 3 modules, namely, Provide Information, Support Decision-Making, and Facilitate Actions Following a Decision. These modules are translated into various information tiles and diverse functionalities such as a knowledge test, a value clarification tool using a decisional balance, and a communication tool. The DA was disseminated for use in May 2021. Users varied greatly regarding age, gender, and location in the Netherlands. CONCLUSIONS: This paper elaborates on the development of the COVID-19 vaccination DA in a brief period and its dissemination for use among Dutch adults in the Netherlands. The evaluation of use showed that we were able to reach a large proportion and variety of people throughout the Netherlands.
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Vacunas contra la COVID-19 , COVID-19 , Técnicas de Apoyo para la Decisión , Humanos , Países Bajos/epidemiología , COVID-19/prevención & control , COVID-19/epidemiología , Vacunas contra la COVID-19/administración & dosificación , Vacunas contra la COVID-19/uso terapéutico , Vacunación/psicología , Masculino , Femenino , Adulto , Persona de Mediana Edad , Toma de Decisiones , InternetRESUMEN
To examine the association between clinical personnel's general attitudes towards new interventions and implementation outcomes related to an evidence-based individualized, culturally tailored, computerized decision aid (DA) for the management of lupus. To assess attitudes, the validated Evidence-Based Practice Attitudes Scale (EBPAS) survey was emailed to personnel in 15 rheumatology clinics across the U.S. The survey also included questions related to three validated implementation outcomes: lupus DA acceptability, appropriateness and feasibility. The baseline round of the survey was fielded from August 2019 to January 2020 and yielded a 56.8% response rate (n = 76 respondents). We also collected organizational characteristics from each clinic and personnel-level control variables. Overall, respondents reported modest levels of lupus DA acceptability, appropriateness and feasibility (3.54, 3.45 and 3.40, respectively, on a scale of 1-5). Multilevel regression analyses demonstrated statistically significant positive relationships between a respondent's openness to new practices/interventions and perceived lupus DA acceptability (ß = 0.31, p < .01) and feasibility (ß = 0.28, p < .05). Divergence (a respondent's perceived difference between current and new practices) was not associated with clinic personnel perceptions of the DA. These findings suggest that understanding clinic personnel general attitudes toward new interventions is an important precursor to implementing evidence-based practices and may provide important diagnostic information about places to intervene in preparation for implementation and improving shared decision-making with patients.
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Objective: This study aimed to develop and pilot test a new framework for the adaptation of patient decision aids (PtDAs) using a specific case example of contraceptive method PtDAs for Chinese-speaking migrant women. Methods: We developed a novel approach for adaptation - the PACE (Population And ContExt adaption of decision aids) framework - that incorporated both existing models and frameworks and innovative elements. It involves six stages: selection and appraisal; review by content experts; content validity and usability pre-testing; translation; decisional needs assessment; and perceived acceptability, usability and feasibility testing. We then followed the framework to pilot and adapt a suite of PtDAs on contraceptive methods for Chinese-speaking migrant women in Australia. Twenty healthcare providers and 22 Chinese migrant women participated during the stages five and six. Results: The pilot resulted in adapted PtDAs that were acceptable to end users. For future research, we proposed further recommendations and considerations based on lessons learnt, which include flexibility in applying the framework and considering an additional real-world evaluation step. Conclusion: Adaptation of PtDAs required a multi-stage and multidisciplinary team-based and pragmatic approach as exemplified in the application of the PACE framework. Innovation: The PACE framework developed and piloted in this study fills a crucial gap in knowledge about how to adapt PtDAs for new populations and contexts and provides an innovative and systemic approach to guide the adaptation process.
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INTRODUCTION: Making a treatment decision for female stress urinary incontinence (SUI) can be challenging for patients and healthcare providers. Dutch guidelines advise to counsel both pelvic floor muscle therapy and midurethral sling surgery as primary treatment options in uncomplicated moderate to severe cases. The use of a patient decision aid (PDA) can support decision-making, reduce decisional conflict and decisional regret, and increase knowledge. The aim of this study was to develop and evaluate an online PDA for females (SUI). METHODS: This mixed-methods study was performed in consecutive stages by a multidisciplinary working group. PDA design was based on the International Patient Decision Aids Standards (IPDAS) and on outcomes of needs assessments amongst patients and healthcare providers. Content was based on Dutch guidelines, targeted literature searches and patient information from the Dutch scientific society for gynecology. The concept version was evaluated by patients, patients' advocates, and healthcare providers. RESULTS: Using the nominal group technique, the working group established the design and format of the PDA. Fifty-six out of 58 applicable items of the IPDAS were met. The PDA contains information on the condition, advice on lifestyle adaptations, and describes surgical and nonsurgical treatment options. The option grid contains comparisons of the primary treatment options. Furthermore, value clarification exercises and narratives were included. Acceptability and usability evaluation of the concept version was performed by 15 healthcare providers, three patients, and two patients' advocates. Comments were processed in the working group, resulting in the final version of the PDA, which was supported by all assessors. CONCLUSION: Our multidisciplinary working group developed an online PDA for women with moderate to severe SUI including conservative and surgical treatment options, based on IPDAS criteria, guidelines, scientific evidence, and needs assessments from patients and healthcare providers. This PDA is supported by patients, healthcare providers, scientific societies, and the Dutch patients' association. The next step is to evaluate and implement this PDA in daily practice. TRIAL REGISTRATION: ID 2014-308.
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Tratamiento Conservador , Técnicas de Apoyo para la Decisión , Incontinencia Urinaria de Esfuerzo , Humanos , Incontinencia Urinaria de Esfuerzo/cirugía , Femenino , Persona de Mediana Edad , Participación del Paciente , Procedimientos Quirúrgicos Urológicos , Adulto , Cabestrillo Suburetral , Países BajosRESUMEN
Shared decision-making (SDM) aims to improve patients' experiences with care, treatment adherence, and health outcomes. However, the effectiveness of SDM in patients with a recent fracture who require anti-osteoporosis medication (AOM) is unclear. The objective of this study was to assess the effectiveness of a multicomponent adherence intervention (MCAI) including a patient decision aid (PDA) and motivational interviewing at Fracture Liaison Services (FLS) on multiple outcomes compared with usual care (UC). This pre-post superiority study included patients with a recent fracture attending FLS and with AOM treatment indication. The primary outcome was 1-year AOM persistence measured by pharmacy records. Secondary outcomes included treatment initiation, AOM adherence (measured by medication possession ratio [MPR]), decision quality (SDM process; 0-100, best), and decisional conflict (0-100, highest conflict), subsequent fractures, and mortality. Outcomes were tested in MCAI and UC groups at the first FLS visit and 4 and 12 months afterwards. Multiple imputation and uni- and multivariable analyses were performed. Post hoc analyses assessed the role of health literacy level. In total, 245 patients (MCAI: n = 136, UC: n = 109) were included. AOM persistence was 80.4% in the MCAI and 76.7% in the UC group (p=.626). SDM process scores were significantly better in MCAI (60.4 vs 55.1; p = .003). AOM initiation (97.8% vs 97.5%), MPR (90.9% vs 88.3%, p=.582), and decisional conflict (21.7 vs 23.0; p = .314) did not differ between groups. Results did not change importantly after adjustment. Stratified analyses by health literacy showed a better effect on MPR and SDM in those with adequate health literacy. This study showed no significant effect on AOM persistence; however, it demonstrated a significant positive effect of MCAI on SDM process in FLS attendees. (Netherlands Trial Registry, Trial NL7236 [NTR7435]; version 1.0; 26-11-2020 https://onderzoekmetmensen.nl/nl/trial/22858).
When patients participate in the decision-making process (called shared decision-making), we may be able to improve the way they take medication and experience care. We wanted to study how shared decision-making works in people who recently broke a bone and therefore needed anti-osteoporosis medication. We looked at 2 approaches that specialized nurses could use at the clinic. During the first visit, the nurses used a decision aid to discuss different medication options with the patient. During the second visit, nurses used "motivational interviewing" to better understand and support patients with taking their medication in the long term. We compared 109 patients who participated in this study with 126 patients who received normal care without the approaches. We found that the 2 approaches did not change the way people take their medication 1 year after the visits. However, patients who experienced the new approaches felt more involved in all phases of the decision to start and continue medication compared with patients receiving usual care. One year after the visits, people with higher health literacy were more likely to feel like they had been involved in the decision-making process, and more likely to continue to take their medication as prescribed.
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Toma de Decisiones Conjunta , Entrevista Motivacional , Humanos , Femenino , Masculino , Anciano , Fracturas Óseas/terapia , Persona de Mediana EdadRESUMEN
Background: The spreading adoption of value-based models of healthcare delivery has incentivized the use of patient-reported outcomes and experience measures (PROMs and PREMs) in clinical practice, with the potential to enrich the decision-making process with patient-reported data. Methods: This perspective article explores PROs and the shared decision-making (SDM) process as components of value-based healthcare. We describe the potential of PROMs and PREMs within the decision-making process and present a digital framework for informing the shared decision-making process using aggregated data from a healthcare system PROMs and PREMs program, including early results from implementation in hospital network in Madrid, Spain. Results: The proposed digital framework incorporates aggregated data from a hospital network PROMs and PREMs program as part of a digital patient decision aid (PDA) for patients with lymphoma. After the first hematologist appointment, participating patients access the PDA to review relevant information about clinical and patient-reported outcomes for each of the possible options, assign a personal order of priority to different outcomes, and then select their preferred course of action. Patients' answers are automatically uploaded to the EHR and discussed with hematologists at the next appointment. After beginning treatment, patients are invited to participate in the network PROMs program; participants' PROMs data are fed back into the PDA, thus "closing the circle" between the decision-making process and patient-reported data collection.During the first 14 months after launching the decision aid in October 2022, of 25 patients diagnosed with follicular lymphoma at the four participating hospitals, 13 patients decided to participate. No significant differences in age or sex were observed between groups. Average SDM Q-9 score for patients filling in the questionnaire (n = 6) was 36.15 of 45 points. Conclusion: Various obstacles toward widespread implementation of SDM exist such as time constraints, lack of motivation, and resistance to change. Support and active engagement from policy makers and healthcare managers is key to overcome hurdles for capturing patient-reported data and carrying out shared decision-making at healthcare system level. Early results of a digital framework for PRO-enriched SDM seem to be beneficial to the decision-making process.
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Toma de Decisiones Conjunta , Participación del Paciente , Medición de Resultados Informados por el Paciente , Humanos , España , Femenino , Masculino , Persona de Mediana EdadRESUMEN
BACKGROUND: Limited decision-support tools are available to help shared decision-making (SDM) regarding food oral immunotherapy (OIT) initiation. No current tool covers all foods, forms, and pediatric ages for which OIT is offered. METHODS: In compliance with International Patient Decision Aid Standards criteria, this pediatric decision-aid comparing OIT versus avoidance was developed in three stages. Nested qualitative data assessing OIT decisional needs were supplemented with evidence-synthesis from the OIT literature to create the prototype decision-aid content. This underwent iterative development with food allergy experts and patient advocacy stakeholders until unanimous consensus was reached regarding content, bias, readability, and utility in making a choice. Lastly, the tool underwent validated assessment of decisional acceptability, decisional conflict, and decisional self-efficacy. RESULTS: The decision-aid underwent 5 iterations, resulting in a 4-page written aid (Flesch-Kincaid reading level 6.1) explaining therapy choices, risks and benefits, providing self-rating for attribute importance for the options and self-assessment regarding how adequate the information was in decision-making. A total of n = 135 caregivers of food-allergic children assessed the decision-aid, noting good acceptability, high decisional self-efficacy (mean score 85.9/100) and low decisional conflict (mean score 20.9/100). Information content was rated adequate and sufficient, the therapy choices wording balanced, and presented without bias for a "best choice." Lower decisional conflict was associated with caregiver-reported anaphylaxis. CONCLUSIONS: This first pediatric OIT decision-aid, agnostic to product, allergen, and age has good acceptability, limited bias, and is associated with low decisional conflict and high decisional self-efficacy. It supports SDM in navigating the decision to start OIT or continue allergen avoidance.
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PURPOSE: Breast cancer diagnosis often presents patients with complex treatment decisions, particularly concerning surgical options. A patient decision aid can assist patients in making better decisions, and ultimately improving health outcomes positively. This study aims to explore the perceptions and needs of breast cancer patients regarding the utilization of wed-based surgical decision aids. METHODS: A descriptive qualitative study was conducted using semi-structured interviews with purposive sampling that were audio recorded and transcribed verbatim. A thematic analysis was conducted using NVivo 12 software. Participants were recruited from a tertiary general hospital in Shanghai, China. Inclusion criteria were being diagnosed with breast cancer, age over 18 years old, considering breast cancer surgery as a treatment option and able/willing to give informed consent. RESULTS: From March to May 2023, 16 patients consented to participate and completed the interviews. Three major themes were revealed, with corresponding sub-themes: (1) informative and useful content (need to know as much information as possible, easy to understand and presented in multiple ways and highly credible from reliable resource); (2) user-friendly on design (easy to operate, simple function and man-machine interaction); and (3) suggested timing of use. CONCLUSIONS: Patients' perspectives and needs about wed-based surgical decision aids are numerous and diverse. In designing wed-based surgical decision aids for breast cancer patients, content, design and timing are all factors that need to be taken into consideration to encourage informed surgical decisions. Further work will focus on developing a feasible and acceptable web-based surgical patient decision aid (PtDA), and test its usability in a clinical setting to understand if the PtDA can meet the decisional needs of breast cancer patients, thus to improve quality of decision-making.
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Neoplasias de la Mama , Técnicas de Apoyo para la Decisión , Investigación Cualitativa , Humanos , Neoplasias de la Mama/cirugía , Neoplasias de la Mama/psicología , Femenino , Persona de Mediana Edad , Adulto , China , Anciano , Mastectomía , Evaluación de Necesidades , Toma de Decisiones , Participación del Paciente/psicologíaRESUMEN
Objective: This study presents the development process of a heart failure (HF) medication decision aid (DA) specific to Singapore context, with the objective of promoting cost conversations. Methods: Phase 1 was to create a DA prototype, where two HF clinicians were consulted on their input and needs. Phase 2 was pilot testing where the prototype was tested on HF patients and revised based on their feedback. Results: The DA is a one-page poster that compares only two classes of HF medications. It encompasses seven attributes for comparison, including route of administration, treatment duration, frequency of use, hospitalization rate, survival rate, low blood pressure probability with personalized subsidized cost being the key attribute. A total of 48 patients participated in the pilot testing with only 2 patients (4.2 %) finding the DA difficult to understand. Almost all patients agreed that the DA provided greater clarity in the medication options. Conclusion: By integrating the needs of both clinicians and patients and conducting user testing, we developed a novel HF medication DA. Patients found the tool easy to understand and acceptable. Innovation: This innovative DA aims to improve cost conversations by providing tailored, concise, and locally relevant information for efficient use.
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The aim of the SDM-RCC study is to evaluate the impact of a comprehensive shared decision-making (SDM) intervention for patients with renal cell carcinoma (RCC) on the decision-making process and outcomes. The intervention includes online patient decision aids (PtDAs) and training of health care professionals (HCPs) in the use of PtDAs and SDM. The study is a multicenter, prospective pretest-posttest cohort in six Dutch hospitals, focusing on patients with localized or metastatic RCC. The primary outcome is the observed quality of the decision-making process, measured using OPTION-5 scores. Secondary outcomes include perceived quality of the decision-making process, decision quality, and implementation of the intervention (user statistics and interviews). Quantitative analysis will be performed on questionnaire data, while qualitative analysis will be performed on interviews using coding based on established frameworks. The study results could improve understanding of the decision-making process for RCC patients from patient, HCP, and observer perspectives. The SDM tool implemented is expected to support the decision-making process. PATIENT SUMMARY: We are conducting a trial on the effects of a tool to support shared decision-making by patients with kidney cancer who are facing treatment decisions. This paper outlines the protocol that will be used for the trial.
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OBJECTIVES: Shared Decision Making (SDM) has potential to support Pulmonary Rehabilitation (PR) decision-making when patients are offered a menu of centre- and home-based options. This study sought to evaluate the feasibility and acceptability of a three-component PR SDM intervention for individuals with Chronic Obstructive Pulmonary Disease (COPD) and PR healthcare professionals. METHODS: Participants were recruited from Dec 2021-Sep 2022. Healthcare professionals attended decision coaching training and used the consultation prompt during consultations. Individuals received the Patient Decision Aid (PtDA) at PR referral. Outcomes included recruitment capability, data completeness, intervention fidelity, and acceptability. Questionnaires assessed patient activation and decisional conflict pre and post-PR. Consultations were assessed using Observer OPTION-5. Optional interviews/focus groups were conducted. RESULTS: 13% of individuals [n = 31, 32% female, mean (SD) age 71.19 (7.50), median (IQR) MRC dyspnoea 3.50 (1.75)] and 100 % of healthcare professionals (n = 9, 78% female) were recruited. 28 (90.32%) of individuals completed all questionnaires. SDM was present in all consultations [standardised scores were mean (SD) = 36.97 (21.40)]. Six healthcare professionals and five individuals were interviewed. All felt consultations using the PtDA minimised healthcare professionals' bias of centre-based PR, increased individuals' self-awareness of their health, prompted consideration of how to improve it, and increased involvement in decision-making. DISCUSSION: Results indicate the study processes and SDM intervention is feasible and acceptable and can be delivered with fidelity when integrated into the PR pathway.
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Toma de Decisiones Conjunta , Estudios de Factibilidad , Participación del Paciente , Enfermedad Pulmonar Obstructiva Crónica , Humanos , Enfermedad Pulmonar Obstructiva Crónica/rehabilitación , Enfermedad Pulmonar Obstructiva Crónica/psicología , Femenino , Masculino , Anciano , Participación del Paciente/métodos , Persona de Mediana Edad , Técnicas de Apoyo para la Decisión , Encuestas y Cuestionarios , Grupos FocalesRESUMEN
BACKGROUND: Diverticular disease is a common gastrointestinal diagnosis with over 2.7 million clinic visits yearly. National guidelines from the American Society of Colon and Rectal Surgeons state that "the decision to recommend elective sigmoid colectomy after recovery from uncomplicated acute diverticulitis should be individualized." However, tools to individualize this decision are lacking. OBJECTIVE: This study aimed to develop an online educational decision aid (DA) to facilitate effective surgeon and patient communication about treatment options for recurrent left-sided diverticulitis. METHODS: We used a modified design sprint methodology to create a prototype DA. We engaged a multidisciplinary team and adapted elements from the Ottawa Personal Decision Guide. We then iteratively refined the prototype by conducting a mixed methods assessment of content and usability testing, involving cognitive interviews with patients and surgeons. The findings informed the refinement of the DA. Further testing included an in-clinic feasibility review. RESULTS: Over a 4-day in-person rapid design sprint, including patients, surgeons, and health communication experts, we developed a prototype of a diverticulitis DA, comprising an interactive website and handout with 3 discrete sections. The first section contains education about diverticulitis and treatment options. The second section clarifies the potential risks and benefits of both clinical treatment options (medical management vs colectomy). The third section invites patients to participate in a value clarification exercise. After navigating the DA, the patient prints a synopsis that they bring to their clinic appointment, which serves as a guide for shared decision-making. CONCLUSIONS: Design sprint methodology, emphasizing stakeholder co-design and complemented by extensive user testing, is an effective and efficient strategy to create a DA for patients living with recurrent diverticulitis facing critical treatment decisions.
Asunto(s)
Colectomía , Técnicas de Apoyo para la Decisión , Humanos , Colectomía/métodos , Recurrencia , Diverticulitis/cirugía , Femenino , Masculino , Persona de Mediana Edad , Adulto , Educación del Paciente como Asunto/métodos , AncianoRESUMEN
OBJECTIVE: To explore the experiences and perspectives of patients and rheumatologists on decision aid (DA)-led tapering of advanced therapy in rheumatoid arthritis (RA). METHODS: Semistructured interviews were completed with patients and rheumatologists, embedded within a pilot study of DA-led tapering (ie, dose reduction) of biologic disease-modifying antirheumatic drugs (bDMARDs) and targeted synthetic DMARDs (tsDMARDs) in RA. All patients were in sustained (≥ 6 mos) remission and had chosen to reduce their therapy after a DA-led shared decision with their rheumatologist. The rheumatologists included those participating in the pilot (n = 4), and those who were not (n = 8). Reflexive thematic analysis of audiotaped and transcribed interviews identified themes in the group experiences. RESULTS: Patients (n = 10, 6 female) unanimously found the DA easy to understand and felt confident in shared decision making about treatment tapering and managing flares. Rheumatologists' (n = 12, 5 female) perspectives on tapering bDMARDs and tsDMARDs varied widely, from very supportive to completely opposed, and influenced their views on the DA. Rheumatologists expressed concerns about patient comprehension, destabilizing a stable situation, risks of flare, and extending appointment times. Despite their initial reservations about sending the DA to all eligible patients ahead of appointments, 3 of 4 participating rheumatologists adopted this approach during the pilot, which had the benefit of facilitating patient-led conversations. CONCLUSION: A DA-led strategy for tapering advanced therapy in RA was acceptable to patients and feasible in practice. Sending patients a DA ahead of their appointment facilitated patient-led conversations about tapering.
Asunto(s)
Antirreumáticos , Artritis Reumatoide , Productos Biológicos , Técnicas de Apoyo para la Decisión , Investigación Cualitativa , Humanos , Artritis Reumatoide/tratamiento farmacológico , Antirreumáticos/uso terapéutico , Antirreumáticos/administración & dosificación , Femenino , Masculino , Persona de Mediana Edad , Productos Biológicos/uso terapéutico , Productos Biológicos/administración & dosificación , Proyectos Piloto , Anciano , Adulto , Reumatólogos , Reducción Gradual de Medicamentos/métodos , Toma de Decisiones Conjunta , Participación del PacienteRESUMEN
BACKGROUND AND OBJECTIVE: Evidence on the cost effectiveness of decision aids to guide management decisions for men with prostate cancer is limited. We examined the cost utility of the Navigate online decision aid for men with prostate cancer in comparison to usual care (no decision aid). METHODS: A Markov model with a 10-yr time horizon was constructed from a government health care perspective. Data from the Navigate trial (n = 302) and relevant published studies were used for model inputs. Incremental costs and quality-adjusted life-years (QALYs) were calculated for the two strategies. One-way and probabilistic sensitivity analyses were undertaken to address model uncertainty. KEY FINDINGS AND LIMITATIONS: On average, the Navigate strategy was estimated to cost AU$8899 (95% uncertainty interval [UI] AU$7509-AU$10438) and produce 7.08 QALYs (95% UI 6.73-7.36) in comparison to AU$9559 (95% UI AU$8177-AU$11017) and 7.03 QALYs (95% UI 6.67-7.31) or usual care. The Navigate strategy dominated usual care as it produced cost-savings and higher QALYs, although differences for both outcomes were small over 10 yr. The likelihood of Navigate being cost effective at a conventionally acceptable threshold of AU$50000 per QALY gained was 99.7%. This study is limited by the availability, quality, and choice of the data used in the model. CONCLUSIONS AND CLINICAL IMPLICATIONS: Use of an online decision aid for men with prostate cancer appears to be cost effective relative to usual care in Australia, driven by the higher acceptance and uptake of active surveillance. Wider implementation of decision aids may better inform men diagnosed with prostate cancer about their management options. PATIENT SUMMARY: We looked at the cost effectiveness of an online decision aid for guiding Australian men with prostate cancer in choosing a management option. We found that this decision aid was cost effective, mainly because more men chose active surveillance. Decision aids that inform patients about their management options should be more widely used in health care.
RESUMEN
Objective: Hospital at Home (HaH) programs currently lack decision support tools to help efficiently navigate the complex decision-making process surrounding HaH as a care option. We assessed user needs and perspectives to guide early prototyping and co-creation of 4PACS (Partnering Patients and Providers for Personalized Acute Care Selection), a decision support app to help patients make an informed decision when presented with discrete hospitalization options. Methods: From December 2021 to January 2022, we conducted semi-structured interviews via telephone with patients and caregivers recruited from Atrium Health's HaH program and physicians and a nurse with experience referring patients to HaH. Interviews were evaluated using thematic analysis. The findings were synthesized to create illustrative user descriptions to aid 4PACS development. Results: In total, 12 stakeholders participated (3 patients, 2 caregivers, 7 providers [physicians/nurse]). We identified 4 primary themes: attitudes about HaH; 4PACS app content and information needs; barriers to 4PACS implementation; and facilitators to 4PACS implementation. We characterized 3 user descriptions (one per stakeholder group) to support 4PACS design decisions. User needs included patient selection criteria, clear program details, and descriptions of HaH components to inform care expectations. Implementation barriers included conflict between app recommendations and clinical judgement, inability to adequately represent patient-risk profile, and provider burden. Implementation facilitators included ease of use, auto-populating features, and appropriate health literacy. Conclusions: The findings indicate important information gaps and user needs to help inform 4PACS design and barriers and facilitators to implementing 4PACS in the decision-making process of choosing between hospital-level care options.