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OBJECTIVES: This systematic literature review aimed to explore experiences worldwide of societal preferences integration into health technology assessments (HTAs) for rare diseases (RDs) and orphan drugs (ODs) through the implementation of multicriteria decision analysis (MCDA), discrete choice experiments (DCEs), and person trade-off (PTO) methods, among others. METHODS: A systematic search of the literature was conducted in April 2021 using PubMed, Cochrane, Embase, and Scopus databases. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses approach was used for the review phases. Finally, the Promoting Action on Research Implementation in Health Services framework was used to discuss the implementation of these instruments in the RD context. RESULTS: A total of 33 articles met the inclusion criteria. The studies measured societal preferences for RD and OD as part of HTA using MCDA (n = 17), DCE (n = 8), and PTO (n = 4), among other methods (n = 4). These found that patients and clinicians do not prioritize funding based on rarity. The public is willing to allocate funds only if the OD demonstrates effectiveness and improves the quality of life, considering as relevant factors disease severity, unmet health needs, and quality of life. Conversely, HTA agency experts preferred their current approach, placing more weight on cost-effectiveness and evidence quality, even though they expressed concern about the fairness of the drug review process. CONCLUSIONS: MCDA, PTO, and DCE are helpful and transparent methods for assessing societal preferences in HTA for RD and OD. However, their methodological limitations, such as arbitrary criteria selection, subjective scoring methods, framing effects, weighting adaptation, and value measurement models, could make implementation challenging.
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BACKGROUND: Internationally accepted standards for trustworthy guidelines include the necessity to ground recommendations in values and preferences. Considering values and preferences respects the rights of citizens to participate in health decision-making and ensures that guidelines align with the needs and priorities of the communities they are intended to serve. Early anecdotal reports suggest that COVID-19 public health guidelines did not consider values and preferences. To capture and characterize whether and how COVID-19 public health guidelines considered values and preferences. METHODS: We performed a systematic review of COVID-19 public health guidelines. We searched the eCOVID-19 RecMap platform-a comprehensive international catalog of COVID-19 guidelines-up to July 2023 and the Guidelines International Network Library-an international library of guidelines published or endorsed by Guidelines International Network member organizations-up to May 2024. We included guidelines that made recommendations addressing vaccination, masking, isolation, lockdowns, travel restrictions, contact tracing, infection surveillance, and school closures. Reviewers worked independently and in duplicate to review guidelines for consideration of values and preferences. RESULTS: Our search yielded 130 eligible guidelines, of which 41 (31.5%) were published by national organizations, 70 (53.8%) by international organizations, and 19 (14.6%) by professional societies and associations. Twenty-eight (21.5%) guidelines considered values and preferences. Among guidelines that considered values and preferences, most did so to assess the acceptability of recommendations (23; 82.1%) and by referencing published research (25; 89.3%). Guidelines only occasionally engaged laypersons as part of the guideline development group (8; 28.6%). None of the guidelines performed systematic reviews of the literature addressing values and preferences. CONCLUSION: Most COVID-19 public health guidelines did not consider values and preferences. When they were considered, it was often suboptimal. Disregard for values and preferences might have partly contributed to divisive and unpopular COVID-19 policies. Given the possibility of future health emergencies, we recommend guideline developers identify efficient and effective methods for considering values and preferences in crisis situations.
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Recommendations for or against the use of interventions need to consider both desirable and undesirable effects as well as patients' values and preferences (V&P). In the decision-making context, patients' V&P represent the relative importance people place on the outcomes resulting from a decision. Therefore, the balance between desirable and undesirable effects from an intervention should depend not only on the difference between benefits and harms but also on the value that patients place on them. V&P are therefore one of the criteria to be considered when formulating guideline recommendations in the Evidence-to-Decision framework developed by the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) Working Group. Patients' V&P may be quantified through utilities, which can be elicited using direct methods (e.g., standard gamble or time trade-off) or indirect methods (using validated instruments to measure health-related quality of life, such as EQ-5D). The GRADE approach recommends conducting systematic reviews to summarise all the available evidence and assess the degree of certainty on V&P. In this article, we discuss the importance of considering patients' V&P and provide examples of how they are considered in the 2024 person-centred Allergic Rhinitis and its Impact on Asthma (ARIA) guidelines.
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BACKGROUND: Allergic rhinitis (AR) impacts patients' physical and emotional well-being. Assessing patients' values and preferences (V&P) related to AR is an essential part of patient-centered care and of the guideline development process. We aimed to systematically summarize the information about patients' V&P on AR and its symptoms and impact on daily life. METHODS: We conducted systematic review in a MEDLINE, Embase, PsychInfo, and CINAHL databases. We included studies which quantitatively assessed patients' V&P for specific outcomes in AR by assessing utilities, applying discrete choice approaches, or rating and ranking outcomes. We grouped outcomes as AR symptoms, functional status, and care-related patient experience. Study selection and data extraction were supported by the Laser AI tool. We rated the certainty of evidence (CoE) using the GRADE approach. RESULTS: Thirty-six studies (41 records) were included: nine utility studies, seven direct-choice studies and 21 studies of rating or ranking outcomes. Utilities were lower with increased AR severity and with the concomitant presence of asthma, but not with whether AR was seasonal or perennial (CoE = low-high). Patients rated AR symptom-related outcomes as more important than those related to care-related patient experience and functional status (CoE = very low-moderate). Nasal symptoms (mainly nasal congestion) followed by breathing disorders, general and ocular symptoms were rated as the symptoms with the highest impact. CONCLUSIONS: This systematic review provides a comprehensive overview of V&P of patients with AR. Patients generally considered nasal symptoms as the most important. Future studies with standardized methods are needed to provide more information on V&P in AR.
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Inteligencia Artificial , Prioridad del Paciente , Rinitis Alérgica , Humanos , Estado de Salud , Calidad de Vida , Rinitis Alérgica/psicologíaRESUMEN
Background: Cannabis for medical purposes has been legal in Canada since 2001; however, physicians receive no formal training in this modality, and clinical use of cannabis remains controversial. This study aims to explore the values and preferences of people living with chronic pain (PLwCP) in using medical cannabis for chronic pain to inform guideline development and shared decision-making in clinical practice. Methods: We conducted a descriptive qualitative study using in-depth interviews with PLwCP. Using a deductive/inductive approach, we developed concepts and themes related to values and preferences of PLwCP on their use (or avoidance) of medical cannabis for chronic pain. Results: We interviewed 52 PLwCP, including current medical cannabis users (40), previous users (10) and non-users (2). Most PLwCP who used cannabis therapeutically reported the need for experimentation to determine what cannabis products, routes, and doses worked for them. Perceived benefits of medical cannabis among current users included relief from pain, better sleep, and improved mental health. Reasons for discontinuing use of medical cannabis included lack of improvement in pain or sleep or undesirable side effects. Cannabidiol (CBD) dominant products were reported to result in minimal adverse effects (eg, physical or mental impairment) compared to tetrahydrocannabinol (THC) dominant products. Perceived barriers or facilitators to use included social acceptability, availability or access, cost, and attitudes and knowledge among healthcare providers. Participants noted different routes of cannabis use including oral routes that provided longer-lasting pain relief with a slower onset and inhaled routes with a more rapid onset with shorter-lived effects. Conclusion: Participants' decisions to use medical cannabis for chronic pain were varied, which suggests these decisions are likely to be sensitive to individuals' values and preferences. There is a call for further research and information-sharing to help PLwCP understand the complexities of cannabis use for medical purposes, including ideal dosing and timing.
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The implementation of shared decision making (SDM) in management of sarcopenia is still in its nascent stage, especially compared to other areas of medical research. Accumulating evidence has highlighted the importance of SDM in older adults care. The current study overviews general SDM practices and explores the potential advantages and dilemmas of incorporating these concepts into sarcopenia management. We present common patient decision aids available for sarcopenia management and propose future research directions. SDM can be effectively integrated into daily practice with the aid of structured techniques, such as the "seek, help, assess, reach, evaluate" approach, "making good decisions in collaboration" questions, "benefits, risks, alternatives, doing nothing" tool, or "multifocal approach to sharing in shared decision making." Such techniques fully consider patient values and preferences, thereby enhancing adherence to and satisfaction with the intervention measures. Additionally, we review the barriers to and potential solutions to SDM implementation. Further studies are required to investigate measurement and outcomes, coordination and cooperation, and digital technology, such as remote SDM. The study concludes that sarcopenia management must go beyond the single dimension of "Paternalism" choice. Integrating SDM into clinical practice offers promising opportunities to improve patient care, with patient-centered care and partnership of care approaches positively impacting treatment outcomes.
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Toma de Decisiones Conjunta , Sarcopenia , Humanos , Anciano , Sarcopenia/terapia , Resultado del TratamientoRESUMEN
BACKGROUND: Venous thromboembolism (VTE) in pregnancy is a major cause of maternal morbidity and death. The use of low-molecular-weight heparin (LMWH), despite being the standard of care to prevent VTE, comes with some challenges. Shared decision-making (SDM) interventions are recommended to support patients and clinicians in making preference-sensitive decisions. The quality of the SDM process has been widely assessed with the decisional conflict scale (DCS). Our aim is to report participants' perspectives of each of the components of an SDM intervention (DASH-TOP) in relation to the different subscales of the DCS. METHODS: Design: A convergent, parallel, mixed-methods design. PARTICIPANTS: The sample consisted of 22 health care professionals, students of an Applied Clinical Research in Health Sciences (ICACS) master program. INTERVENTION: We randomly divided the participants in three groups: Group 1 received one component (evidence -based information), Group 2 received two components (first component and value elicitation exercises), and Group 3 received all three components (the first two and a decision analysis recommendation) of the SDM intervention. ANALYSIS: For the quantitative strand, we used a non-parametric test to analyze the differences in the DCS subscales between the three groups. For the qualitative strand, we conducted a content analysis using the decisional conflict domains to deductively categorize the responses. RESULTS: Groups that received more intervention components experienced less conflict and better decision-making quality, although the differences between groups were not statistically significant. The decision analysis recommendation improved the efficacy with the decision-making process, however there are some challenges when implementing it in clinical practice. The uncertainty subscale showed a high decisional conflict for all three groups; contributing factors included low certainty of the evidence-based information provided and a perceived small effect of the drug to reduce the risk of a VTE event. CONCLUSIONS: The DASH-TOP intervention reduced decisional conflict in the decision -making process, with decision analysis being the most effective component to improve the quality of the decision. There is a need for more implementation research to improve the delivery of SDM interventions in the clinical encounter.
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Toma de Decisiones , Tromboembolia Venosa , Femenino , Humanos , Embarazo , Conflicto Psicológico , Heparina de Bajo-Peso-Molecular , IncertidumbreRESUMEN
INTRODUCTION: Pre-exposure prophylaxis (PrEP) is an important HIV prevention option. Two randomized trials have provided efficacy evidence for long-acting injectable cabotegravir (CAB-LA) as PrEP. In considering CAB-LA as an additional PrEP modality for people at substantial risk of HIV, it is important to understand community response to injectable PrEP. We conducted a systematic review of values, preferences and perceptions of acceptability for injectable PrEP to inform global guidance. METHODS: We searched nine databases and conference websites for peer-reviewed and grey literature (January 2010-September 2021). There were no restrictions on location. A two-stage review process assessed references against eligibility criteria. Data from included studies were organized by constructs from the Theoretical Framework of Acceptability. RESULTS: We included 62 unique references. Most studies were observational, cross-sectional and qualitative. Over half of the studies were conducted in North America. Men who have sex with men were the most researched group. Most studies (57/62) examined injectable PrEP, including hypothetical injectables (55/57) or placebo products (2/57). Six studies examined CAB-LA specifically. There was overall interest in and often a preference for injectable PrEP, though there was variation within and across groups and regions. Many stakeholders indicated that injectable PrEP could help address adherence challenges associated with daily or on-demand dosing for oral PrEP and may be a better lifestyle fit for individuals seeking privacy, discretion and infrequent dosing. End-users reported concerns, including fear of needles, injection site pain and body location, logistical challenges and waning or incomplete protection. DISCUSSION: Despite an overall preference for injectable PrEP, heterogeneity across groups and regions highlights the importance of enabling end-users to choose a PrEP modality that supports effective use. Like other products, preference for injectable PrEP may change over time and end-users may switch between prevention options. There will be a greater understanding of enacted preference as more end-users are offered anti-retroviral (ARV)-containing injectables. Future research should focus on equitable implementation, including real-time decision-making and how trained healthcare providers can support choice. CONCLUSIONS: Given overall acceptability, injectable PrEP should be included as part of a menu of prevention options, allowing end-users to select the modality that suits their preferences, needs and lifestyle.
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Infecciones por VIH , Profilaxis Pre-Exposición , Minorías Sexuales y de Género , Masculino , Humanos , Estudios Transversales , Homosexualidad Masculina , Infecciones por VIH/prevención & controlRESUMEN
BACKGROUND: To inform the development of updated World Health Organization (WHO) guidelines on simplified service delivery for HCV infection, a global survey was undertaken among people affected or infected by HCV. The objective of this analysis is to identify specific needs and preferences among people who inject drugs. METHODS: A multi-country, anonymous, self-administered online survey conducted in 2021 was developed by Coalition PLUS and the World Hepatitis Alliance in partnership with the WHO. Preferences for test and treat locations and simplifying HCV care were collected among people affected or infected by HCV. Chi-square tests were used to compare respondents who identified with current or former injection drug users through identification with key population to other respondents who did not identify with this key population. RESULTS: Among 202 respondents, 62 (30.7%) identified with current/former injection drug users. Compared to other respondents, they were: older [median (IQR): 48 (36-57) vs. 39 (31-51) years, p = 0.003]; more likely to have been tested for HCV (90.2% vs. 64.3%, p = 0.001); more likely to prefer testing in a community-based centre (CBC) (55.4% vs. 33.3%, p = 0.005); or in a support centres for people who use drugs (SCPUD)(50.0% vs. 9.8%, p < 0.001). The most important considerations regarding testing locations among people identified with current/former injection drug users (compared to the other respondents) were: non-judgemental atmosphere (p < 0.001), anonymity (p = 0.018) and community worker (CW) presence (p < 0.001). People identified with current/former injection drug users were more likely to prefer to receive HCV treatment in a CBC (63.0% vs. 44.8%, p = 0.028) or in a SCPUD (46.3% vs. 9.5%, p < 0.001), compared to the other respondents. The most important considerations regarding treatment locations among people identified with current/former injection drug users were the non-stigmatising/non-judgemental approach at the site (p < 0.001) and the presence of community-friendly medical personnel or CW (p = 0.016 and 0.002), compared to the other respondents. CONCLUSION: The preferences of people identified with current/former injection drug users indicated specific needs concerning HCV services. Integration of HCV services in community-based risk reduction centres may be an important element in the development of adapted services to increase uptake and retention in HCV care among this population.
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Consumidores de Drogas , Hepatitis C , Abuso de Sustancias por Vía Intravenosa , Humanos , Preparaciones Farmacéuticas , Abuso de Sustancias por Vía Intravenosa/complicaciones , Abuso de Sustancias por Vía Intravenosa/epidemiología , Servicios de Salud Comunitaria , Hepatitis C/epidemiología , HepacivirusRESUMEN
With the development of patient-centered medical model,patient values and preferences have become a hot research topic.This paper starts from the concept of patients'values and preferences,analyzes the important importance of patients'values and preferences;Based on the published literature,the importance of patients'values and preferences in the development of acupuncture clinical guidelines,the positive role in doctor-patient co-decision,the value of patients'cognition and value promotion in acupuncture"Deqi"were sorted out,and the influencing factors of patients'values and preferences and acupuncture compliance were summarized.According to the influencing factors,the corresponding solutions were proposed to help patients establish correct values,and thus improve patients'acupuncture compliance.
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Introduction: The prevalence of patients with multimorbidity (ie, multiple chronic conditions) is increasing. Clinical decision-making guided by patients' values, health priorities and goals, and treatment preferences is particularly important in the context of interacting diseases and psychosocial needs. Physicians face challenges incorporating patient perspectives into care plans. We examined primary care physician (PCP) views on the influence of patients' values, health priorities and goals, and preferences on clinical decisions for patients with multimorbidity and increased psychosocial complexity. Methods: We conducted semi-structured telephone interviews with 23 PCPs within patient-centered medical home teams in a nationally integrated health system in the United States between May and July 2020. Data were analyzed via thematic analysis with deductive and inductive coding. Results: Three major themes emerged: 1. Patient personal values were rarely explicitly discussed in routine clinical encounters but informed more commonly discussed concepts of patient priorities, goals, and preferences; 2. Patient values, health priorities and goals, and preferences were sources of divergent views about care plans between healthcare teams, patients, and families; 3. Physicians used explicit strategies to communicate and negotiate about patient values, health priorities and goals, and preferences when developing care plans, including trust-building; devoting extra effort to individualizing care; connecting patient values to healthcare recommendations; deliberate elicitation and acknowledgement of patient concerns; providing "space" for patient perspectives; incorporating family into care planning; pairing physician to patient priorities; and collaborative teamwork. Conclusion: Primary care physicians perceive patient values, health priorities and goals, and preferences as influential during clinical decision-making for complex patients with multimorbidity. Participants used concrete strategies to negotiate alignment of these aspects when physician-patient divergence occurred. While rarely discussed directly in clinical encounters, personal values affected patient health priorities, goals, and preferences during care planning, suggesting a clinical role for more deliberate elicitation and discussion of patient values for this population.
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BACKGROUND: Venous thromboembolism (VTE) in pregnancy is an important cause of maternal morbidity and mortality. Low-molecular-weight heparin (LMWH) is the cornerstone of prophylaxis and treatment of thrombotic events during pregnancy. LMWH has fewer adverse effects than other anticoagulants, does not cross the placenta, and is safe for the fetus. However, the use of LMWH during pregnancy is sensitive to womens' underlying preferences. The objective of this review is to systematically assess women's values and preferences research evidence on this topic. METHODS: We searched four electronic databases from inception to March 2022, and included studies examining values and preferences of using LMWH among pregnant women at risk of VTE. We followed a convergent integrated mixed-methods design to compare and contrast quantitative outcomes (utility and non-utility measures) and qualitative findings. We assessed the certainty of the values and preferences evidence with the GRADE approach for quantitative findings, and with GRADE-CERqual for qualitative evidence. Results were presented in a conjoint display. RESULTS: We screened 3,393 references and identified seven eligible studies. The mixed methods analysis resulted in four themes. Datasets confirmed each other in that: 1) the majority of women consider that benefits of treatment outweigh the inconveniences of daily injections; and 2) main concerns around medication are safety and injections administration. Quantitative outcomes expanded on the qualitative findings in that: 3) participants who perceived a higher risk of VTE were more willing to take LMWH. Finally, we found a discrepancy between the datasets around: 4) the amount of information preferred to make the decision; however, qualitative data expanded to clarify that women prefer making informed decisions and receive support from their clinician in their decision-making process. CONCLUSIONS: We are moderately confident that in the context of pregnancy, using LMWH is preferred by women given its net beneficial balance. Integrating data from different sources of evidence, and representing them in a jointly manner helps to identify patient's values and preferences. Our results may inform clinical practice guidelines and support shared decision-making process in the clinical encounter for the management of VTE in the context of pregnancy.
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Complicaciones Cardiovasculares del Embarazo , Trombosis , Tromboembolia Venosa , Anticoagulantes/efectos adversos , Femenino , Heparina/efectos adversos , Heparina de Bajo-Peso-Molecular/efectos adversos , Humanos , Embarazo , Complicaciones Cardiovasculares del Embarazo/tratamiento farmacológico , Complicaciones Cardiovasculares del Embarazo/prevención & control , Tromboembolia Venosa/tratamiento farmacológico , Tromboembolia Venosa/prevención & controlRESUMEN
BACKGROUND: Professional and other organizations, including oral health care organizations, have been developing evidence-based clinical practice guidelines (CPGs) to help providers incorporate the best available evidence into their clinical decision making. Although the rigor of guideline development has increased over time, ongoing challenges prevent the full adoption of CPGs into clinical practices that experience variability in provider expertise and opinion, patient flow pace, and use of electronic dental records. These challenges include lack of relevant evidence, failure to keep guidelines up to date, and failure to adopt strategies aimed at overcoming the barriers preventing implementation into clinical practice. RESULTS: This article provides a brief overview of strategies that can be used to overcome common challenges to guideline adoption. Such strategies include creating evidence-based CPGs that use additional sources of evidence and methods to inform guideline development and accelerate the guideline updating and dissemination process (that is, evidence directly from clinical practice, big data, patients' values and preferences, and living guidelines) and applying implementation strategies that have been documented as improving translation of CPGs into routine clinical practice (that is, guideline implementability, implementation science, and computable guidelines). PRACTICAL IMPLICATIONS: Adopting newer strategies for developing and translating evidence into practice could lead to improvements in patient care and population health.
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The Serious Illness Care Program (SICP), designed by Ariadne Labs, is a multicomponent intervention to improve conversations about values and goals for patients with a life-limiting illness. In oncology, implementation of the SICP achieved more, earlier, and better-quality conversations and reduced anxiety and depression among patients with advanced cancer. In this commentary, we describe the SICP, including results from the cluster-randomized trial, provide examples of real-world implementation of this program, and highlight ongoing challenges and barriers that are preventing widespread adoption of this intervention into routine practice. For the SICP to be successfully embedded into routine patient care, it will require significant effort, including ongoing leadership support and training opportunities, champions from all sectors of the interdisciplinary team, and adaptation of the program to a wider range of patients. Future research should also investigate how early conversations can be translated into personalized care plans for patients.
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Planificación Anticipada de Atención , Cuidados Críticos , Comunicación , Enfermedad Crítica , Humanos , Oncología MédicaRESUMEN
BACKGROUND: Health is not the only aspect people consider when choosing to consume meat; environmental concerns about the impact of meat (production and distribution) can influence people's meat choices. METHODS: We conducted a mixed-methods systematic review, searched six databases from inception to June 2020, and synthesised our findings into narrative forms. We integrated the evidence from quantitative and qualitative data sets into joint displays and assessed the confidence in the evidence for each review finding following the GRADE-CERQual approach. RESULTS: Of the 23,531 initial records, we included 70 studies: 56 quantitative, 12 qualitative, and 2 mixed-methods studies. We identified four main themes: (1) reasons for eating meat; (2) reasons for avoiding meat; (3) willingness to change meat consumption; and (4) willingness to pay more for environmentally friendly meat. The overall confidence was low for the reasons for eating and/or buying meat, for avoiding meat, and for willingness to change meat consumption, and was moderate for willingness to pay more for environmentally friendly meat. CONCLUSIONS: Regardless of people's general beliefs about meat and its impact on the environment, most people may be unwilling to change their meat consumption. Future research should address the current limitations of the research evidence to assess whether people are willing to make a change when properly informed.
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Preferencias Alimentarias , Carne , Humanos , AmbienteRESUMEN
OBJECTIVE: We sought to systematically review the literature on values and preferences regarding contraception among individuals within selected key populations. STUDY DESIGN: As part of a larger set of reviews on patients' and providers' values and preferences related to contraception globally, we searched ten electronic databases for articles from January 1, 2005 to July 27, 2020. No language restrictions were applied. Data was independently abstracted by two authors and study rigor was assessed using an 8-item measure developed by the Evidence Project for quantitative studies and an adapted CASP checklist for qualitative studies. RESULTS: We identified 12 studies that met our inclusion criteria examining selected key populations, including sex workers, transmasculine individuals, people who inject drugs, or those living in humanitarian contexts. Seven key themes that spoke to values and preferences emerged related to: autonomy, perceived effectiveness and safety, birth spacing and family outcomes, impacts on sexual experience, hormonal effects (e.g. desire for non-hormonal method or perception that the method is more natural as compared to hormonal methods), physical attributes (e.g. appearance and/or ease of use), and stigma. Six studies were of high rigor, five were of moderate rigor, and one was of low rigor. One study described the values and preferences of two of the selected key populations. The research available on the values and preferences of sex workers regarding methods of contraception was limited to female condoms. CONCLUSION: Consideration of the values and preferences of individuals within selected key populations can inform providers, programme managers and policy makers participating in the delivery of contraceptive care. Contraceptive research among sex workers, transmasculine individuals, people who inject drugs, or those living in humanitarian contexts is quite limited; further research is needed to better understand the values and preferences of these populations.
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Consumidores de Drogas , Trabajadores Sexuales , Anticoncepción/métodos , Anticonceptivos , Femenino , Humanos , Preparaciones FarmacéuticasRESUMEN
Introduction. While use of (hepatitis C virus) HCV-viremic kidneys may result in net benefit for the average end-stage kidney disease (ESKD) patient awaiting transplantation, patients may have different values for ESKD-related health states. Thus, the best decision for any individual may be different depending on the balance of these factors. Our objective was to explore the feasibility of sampling health utilities from hemodialysis patients in order to perform patient-specific decision analyses considering various transplantation strategies. Study Design. We assessed utilities on a convenience sample of hemodialysis patients for health states including hemodialysis, and transplantation with either an HCV-uninfected kidney or an HCV-viremic kidney. We performed patient-specific decision analyses using each patient's age, race, gender, dialysis vintage, and utilities. We used a Markov state transition model considering strategies of continuing hemodialysis, transplantation with an HCV-unexposed kidney, and transplantation with an HCV-viremic kidney and HCV treatment. We interviewed 63 ESKD patients from four dialysis centers (Dialysis Clinic Inc., DCI) in the Cincinnati metropolitan area. Results. Utilities for ESKD-related health states varied widely from patient to patient. Mean values were highest for -transplantation with an HCV-uninfected kidney (0.89, SD: 0.18), and were 0.825 (SD: 0.231) and 0.755 (SD: 0.282), respectively, for hemodialysis and transplantation with an HCV-viremic kidney. Patient-specific decision analyses indicated 37 (59%) of the 63 ESKD patients in the cohort would have a net gain in quality-adjusted life years from transplantation of an HCV-viremic kidney, while 26 would have a net loss. Conclusions. It is feasible to gather dialysis patients' health state utilities and perform personalized decision analyses. This approach could be used in the future to guide shared decision-making discussions about transplantation strategies for ESKD patients.
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BACKGROUND: In addition to social and environmental determinants, people's values and preferences determine daily food choices. This study evaluated adults' values and preferences regarding unprocessed red meat (URM) and processed meat (PM) and their willingness to change their consumption in the face of possible undesirable health consequences. METHODS: A cross-sectional mixed-methods study including a quantitative assessment through an online survey, a qualitative inquiry through semi-structured interviews, and a follow-up assessment through a telephone survey. We performed descriptive statistics, logistic regressions, and thematic analysis. RESULTS: Of 304 participants, over 75% were unwilling to stop their consumption of either URM or PM, and of those unwilling to stop, over 80% were also unwilling to reduce. Men were less likely to stop meat intake than women (odds ratios < 0.4). From the semi-structured interviews, we identified three main themes: the social and/or family context of meat consumption, health- and non-health-related concerns about meat, and uncertainty of the evidence. At three months, 63% of participants reported no changes in meat intake. CONCLUSIONS: When informed about the cancer incidence and mortality risks of meat consumption, most respondents would not reduce their intake. Public health and clinical nutrition guidelines should ensure that their recommendations are consistent with population values and preferences.
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Dieta , Carne Roja , Adulto , Estudios Transversales , Femenino , Preferencias Alimentarias , Humanos , Masculino , CarneRESUMEN
BACKGROUND: End-of-life preferences may change over time, e.g. due to illness progression or life events. Research on stability of end-of-life preferences has largely focused on life-sustaining treatments in seriously ill patients or medical decision-making based on hypothetical illness scenarios and possible treatment options. Few studies focus on community-dwellers in natural settings. The aim of this study was thus to explore if and how community-dwelling, older adults' prioritizations and reasoning about values and preferences for future end-of-life care change over time. METHODS: Using a mixed-methods design, we explored stability of end-of-life preferences in older community-dwelling adults without imminent end-of-life care needs. At two timepoints (T1 and T2), 5.5-12 months apart, 52 individuals discussed what would be important to them at the end-of-life, through open conversations and while using DöBra cards, a Swedish version of GoWish cards. Participants ranked their most important card statements from 1 to 10. Stability in card rankings, i.e. a card recurring in the top-10 ranking at T2 regardless of position, was explored using descriptive statistics and non-parametric analyses. Participants' reasoning about card choices were explored with longitudinal qualitative analysis. RESULTS: Stability between T1 and T2 in the top-10 priorities ranged from 20 to 80%, median 60%. Stability in cards rankings could not be explained by changes in participants' health status, extent of card use (no/little/frequent use) between interviews, or days between T1 and T2, nor was it related to demographic variables. Qualitative analysis showed that consistent reasoning was not always paired with consistency in card choices and changed card choices were not always related to changes in reasoning. CONCLUSIONS: Longitudinal exploration combining DöBra card rankings with underlying reasoning about end-of-life preferences over time furthers knowledge on the dynamics between values and preferences in end-of-life decision-making. Individuals' end-of-life preferences in form of card choices were relatively stable over time albeit with large variation between different individuals. However, the values and underlying reasoning that participants used to motivate their choices appeared more stable than ranking of card choices. We thus conclude that concurrent conversation-based exploration is a more comprehensive indicator of end-of-life values and preferences over time than ranking of cards alone.
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Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Anciano , Comunicación , Muerte , Humanos , Vida IndependienteRESUMEN
BACKGROUND: The prevalence of hepatitis C virus (HCV) among people who inject drugs (PWID) continues to be a major public-health burden in this highly stigmatised population. To halt transmission of HCV, rapid HCV self-testing kits represent an innovative approach that could enable PWID to know their HCV status and seek treatment. As no HCV test has yet been licenced for self-administration, it is crucial to obtain knowledge around the factors that may deter or foster delivery of HCV self-testing among PWID in resource-constrained countries. METHODS: A qualitative study to assess values and preferences relating to HCV self-testing was conducted in mid-2020 among PWID in the Bishkek and Chui regions of Kyrgyzstan. Forty-seven PWID participated in 15 individual interviews, two group interviews (n = 12) and one participatory action-research session (n = 20). Responses were analysed using a thematic analysis approach with 4 predefined themes: awareness of HCV and current HCV testing experiences, and acceptability and service delivery preferences for HCV self-testing. Informants' insights were analysed using a thematic analysis approach. This research received local ethics approval. RESULTS: Awareness of HCV is low and currently PWID prefer community-based HCV testing due to stigma encountered in other healthcare settings. HCV self-testing would be accepted and appreciated by PWID. Acceptability may increase if HCV self-testing: was delivered in pharmacies or by harm reduction associations; was free of charge; was oral rather than blood-based; included instructions with images and clear information on the test's accuracy; and was distributed alongside pre- and post-testing counselling with linkage to confirmatory testing support. CONCLUSIONS: HCV self-testing could increase awareness of and more frequent testing for HCV infection among PWID in Kyrgyzstan. It is recommended that peer-driven associations are involved in the delivery of any HCV self-testing. Furthermore, efforts should be maximised to end discrimination against PWID at the healthcare institutions responsible for confirmatory HCV testing and treatment provision.