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result(s) for
"values and preferences"
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GRADE guidelines: 11. Making an overall rating of confidence in effect estimates for a single outcome and for all outcomes
by
Dahm, Philipp
,
Guyatt, Gordon
,
Rind, David
in
Bias
,
Biological and medical sciences
,
Cardiovascular disease
2013
GRADE requires guideline developers to make an overall rating of confidence in estimates of effect (quality of evidence—high, moderate, low, or very low) for each important or critical outcome. GRADE suggests, for each outcome, the initial separate consideration of five domains of reasons for rating down the confidence in effect estimates, thereby allowing systematic review authors and guideline developers to arrive at an outcome-specific rating of confidence. Although this rating system represents discrete steps on an ordinal scale, it is helpful to view confidence in estimates as a continuum, and the final rating of confidence may differ from that suggested by separate consideration of each domain.
An overall rating of confidence in estimates of effect is only relevant in settings when recommendations are being made. In general, it is based on the critical outcome that provides the lowest confidence.
Journal Article
Values and Preferences on the Use of Oral Pre-exposure Prophylaxis (PrEP) for HIV Prevention Among Multiple Populations: A Systematic Review of the Literature
by
Fonner, Virginia A.
,
Baggaley, Rachel
,
O’Reilly, Kevin R.
in
Abstracts
,
Acquired immune deficiency syndrome
,
Adolescent
2017
Daily oral pre-exposure prophylaxis (PrEP) is the use of antiretroviral drugs by HIV-negative people to prevent HIV infection. WHO released new guidelines in 2015 recommending PrEP for all populations at substantial risk of HIV infection. To prepare these guidelines, we conducted a systematic review of values and preferences among populations that might benefit from PrEP, women, heterosexual men, young women and adolescent girls, female sex workers, serodiscordant couples, transgender people and people who inject drugs, and among healthcare providers who may prescribe PrEP. A comprehensive search strategy reviewed three electronic databases of articles and HIV-related conference abstracts (January 1990–April 2015). Data abstraction used standardised forms to categorise by population groups and relevant themes. Of 3068 citations screened, 76 peer-reviewed articles and 28 conference abstracts were included. Geographic coverage was global. Most studies (N = 78) evaluated hypothetical use of PrEP, while 26 studies included individuals who actually took PrEP or placebo. Awareness of PrEP was low, but once participants were presented with information about PrEP, the majority said they would consider using it. Concerns about safety, side effects, cost and effectiveness were the most frequently cited barriers to use. There was little indication of risk compensation. Healthcare providers would consider prescribing PrEP, but need more information before doing so. Findings from a rapidly expanding evidence base suggest that the majority of populations most likely to benefit from PrEP feel positively towards it. These same populations would benefit from overcoming current implementation challenges with the shortest possible delay.
Journal Article
Systematic review of the values and preferences regarding the use of injectable pre‐exposure prophylaxis to prevent HIV acquisition
by
Baggaley, Rachel
,
Schmidt, Heather‐Marie A.
,
Schaefer, Robin
in
acceptability
,
Acquired immune deficiency syndrome
,
AIDS
2023
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.
Journal Article
People’s Values and Preferences about Meat Consumption in View of the Potential Environmental Impacts of Meat: A Mixed-methods Systematic Review
by
Steiner, Corinna
,
Rabassa, Montserrat
,
Bala, Malgorzata M.
in
Bias
,
Data collection
,
Datasets
2022
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.
Journal Article
Values and preferences in COVID-19 public health guidelines: a systematic review
by
Ling, Michael
,
Zeraatkar, Dena
,
Piggott, Thomas
in
Clinical decision making
,
Clinical medicine
,
Clinical practice guidelines
2024
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.
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.
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.
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.
Journal Article
Values and preferences for hepatitis C self-testing among people who inject drugs in Kyrgyzstan
by
Martínez-Pérez, Guillermo Z.
,
Nikitin, Danil S.
,
Bessonova, Alla
in
Acceptability
,
Adolescent
,
Adult
2021
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.
Journal Article
Measuring importance of outcomes to patients: a cross-sectional survey for the German anal cancer guideline
2021
We aimed to generate evidence on patients’ values and preferences to inform the development of the German national Evidence-based Anal Cancer Guideline.
We developed a list of health outcomes based on a systematic search. We then asked anal cancer patients and experts of the guideline development group in an online survey to (a) rate the relative importance of the outcomes in different clinical situations using a nine-point, three-category scale, and (b) select seven outcomes they considered most important for decision-making in each situation.
Participants rated almost half of the outcomes (45%) as critical for decision-making, and more than half (53%) as important. Only two outcomes (2%) were rated as low in importance. Agreement between expert and patient ratings was low to fair, and we found important discrepancies in how the relative importance of the outcomes was perceived. However, the rankings of outcomes were highly correlated.
Determining the relative importance placed by anal cancer patients on outcomes provided useful information for developing guideline recommendations. Our approach may be useful for guideline developers who aim to include the patient perspective. Moreover, our findings may help health professionals caring for anal cancer patients in joint decision-making.
Journal Article
Preferences of people living with HIV for features of tuberculosis preventive treatment regimens in Uganda: a discrete choice experiment
by
Nakimuli, Jane
,
Kakeeto, Juliet
,
Berger, Christopher
in
Acquired immune deficiency syndrome
,
Adult
,
AIDS
2024
Introduction Tuberculosis (TB) preventive treatment (TPT) is recommended for people living with HIV (PLHIV) in high TB burden settings. While 6 months of daily isoniazid remains widely used, shorter regimens are now available. However, little is known about preferences of PLHIV for key features of TPT regimens. Methods From July to November 2022, we conducted a discrete choice experiment among adult PLHIV engaged in care at an urban HIV clinic in Kampala, Uganda. Participants chose between two hypothetical TPT regimens with five different features (pills per dose, frequency, duration, need for adjusted antiretroviral therapy [ART] dosage and side effects), organized across nine random choice tasks. We analysed preferences using hierarchical Bayesian estimation, latent class analysis and willingness‐to‐trade simulations. Results Of 400 PLHIV, 392 (median age 44, 72% female, 91% TPT‐experienced) had high‐quality choice task responses. Pills per dose was the most important attribute (relative importance 32.4%, 95% confidence interval [CI] 31.6–33.2), followed by frequency (20.5% [95% CI 19.7–21.3]), duration (19.5% [95% CI 18.6–20.5]) and need for ART dosage adjustment (18.2% [95% CI 17.2–19.2]). Latent class analysis identified three preference groups: one prioritized less frequent, weekly dosing (N = 222; 57%); another was averse to ART dosage adjustment (N = 107; 27%); and the last prioritized short regimens with fewer side effects (N = 63; 16%). All groups highly valued fewer pills per dose. Overall, participants were willing to accept a regimen of 2.8 months’ additional duration [95% CI: 2.4–3.2] to reduce pills per dose from five to one, 3.6 [95% CI 2.4–4.8] months for weekly rather than daily dosing and 2.2 [95% CI 1.3–3.0] months to avoid ART dosage adjustment. Conclusions To align with preferences of PLHIV in Uganda, decision‐makers should prioritize the development and implementation of TPT regimens with fewer pills, less frequent dosing and no need for ART dosage adjustment, rather than focus primarily on duration of treatment.
Journal Article
Cultural adaptation of the serious illness conversation guide for caregivers of persons with dementia in Singapore
2025
Introduction
Goals-of-care (GOC) discussions are often delayed or uninitiated for people with dementia, potentially contributing to inappropriate end-of-life treatment. The Serious Illness Conversation Guide (SICG) facilitates structured GOC discussions about patient values and care preferences, but a dementia-specific Guide adapted to the Asian cultural context has yet to be developed. This study aimed to adapt and iteratively revise the SICG-C, and assess its acceptability among caregivers of people with dementia.
Methods
We adapted the SICG for caregivers of people with dementia in Singapore using a three-phase, approach. Phase 1 involved adapting the patient-facing SICG to caregiver-facing language (version 1). In Phase 2, we iteratively tested the guide with 6 and 13 caregivers in 2 rounds of interviews to derive the final version of the Guide. In Phase 3, 50 caregivers rated each SICG-C item from Versions 1 and 3 using a structured questionnaire, with presentation order alternated to minimise order effects.
Results
Sixty-nine caregivers were recruited in this study. Qualitative interviews revealed that caregivers valued professionalism and reassurance from clinicians, while also emphasising their own experiential knowledge as distinct from clinical expertise. Many struggled to articulate their loved ones’ priorities due to cognitive decline and the absence of prior discussions, often expressing uncertainty about whether their assumptions reflected what their loved ones would have wanted. Caregivers were sensitive to language implying poor prognosis and preferred phrasing that conveyed continuity of care and partnership. None of the caregivers had been informed by their loved ones of their goals and priorities, reaffirming the value of the SICG-C. In the final survey (n = 50), caregivers showed a strong preference for Version 3 over Version 1, with 21 of 22 items rated significantly higher (all p<0.001). The final SICG-C was rated highly acceptable.
Conclusion
The SICG-C enables clinicians to initiate timely, values-based GOC discussions with caregivers of people with dementia. Its structured, sensitive language addresses caregiver concerns and may be used to support proactive care planning in dementia. Further research is needed to evaluate implementation in routine clinical practice.
Journal Article
Need for integration of hepatitis C (HCV) services in community-based settings for people who inject drugs: results from a global values and preferences survey
2023
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.
Journal Article