Prognostic awareness and prognostic information preferences among advanced cancer patients in Kenya.

BACKGROUND:  Cancer is the third leading cause of death in Kenya. Yet, little is known about prognostic awareness and preferences for prognostic information. AIM:  To assess the prevalence of prognostic awareness and preference for prognostic information among advanced cancer patients in Kenya. SETTING:  Outpatient medical oncology and palliative care clinics and inpatient medical and surgical wards of Moi Teaching and Referral Hospital (MTRH) in Eldoret, Kenya. METHODS:  The authors surveyed 207 adults with advanced solid cancers. The survey comprised validated measures developed for a multi-site study of end-of-life care in advanced cancer patients. Outcome variables included prognostic awareness and preference for prognostic information. RESULTS:  More than one-third of participants (36%) were unaware of their prognosis and most (67%) preferred not to receive prognostic information. Increased age (OR = 1.04, 95% CI: 1.02, 1.07) and education level (OR: 1.18, CI: 1.08, 1.30) were associated with a higher likelihood of preference to receive prognostic information, while increased symptom burden (OR= 0.94, CI: 0.90, 0.99) and higher perceived household income levels (lower-middle vs low: OR= 0.19; CI: 0.09, 0.44; and upper middle- or high vs low: OR= 0.22, CI: 0.09, 0.56) were associated with lower odds of preferring prognostic information. CONCLUSION:  Results reveal low levels of prognostic awareness and little interest in receiving prognostic information among advanced cancer patients in Kenya.Contribution: Given the important role of prognostic awareness in providing patient-centred care, efforts to educate patients in Kenya on the value of this information should be a priority, especially among younger patients.

Stapedotomy Versus Cochlear Implantation for Far Advanced Otosclerosis: Insights From a Patient With Matched Preoperative and Postoperative Function.

OBJECTIVE: To examine patient preference after stapedotomy versus cochlear implantation in a unique case of a patient with symmetrical profound mixed hearing loss and similar postoperative speech perception improvement. PATIENTS: An adult patient with bilateral symmetrical far advanced otosclerosis, with profound mixed hearing loss. INTERVENTION: Stapedotomy in the left ear, cochlear implantation in the right ear. MAIN OUTCOME MEASURE: Performance on behavioral audiometry, and subjective report of hearing and intervention preference. RESULTS: A patient successfully underwent left stapedotomy and subsequent cochlear implantation on the right side, per patient preference. Preoperative audiometric characteristics were similar between ears (pure-tone average [PTA] [R: 114; L: 113 dB]; word recognition score [WRS]: 22%). Postprocedural audiometry demonstrated significant improvement after stapedotomy (PTA: 59 dB, WRS: 75%) and from cochlear implant (PTA: 20 dB, WRS: 60%). The patient subjectively reported a preference for the cochlear implant ear despite having substantial gains from stapedotomy. A nuanced discussion highlighting potentially overlooked benefits of cochlear implants in far advanced otosclerosis is conducted. CONCLUSION: In comparison with stapedotomy and hearing aids, cochlear implantation generally permits greater access to sound among patients with far advanced otosclerosis. Though the cochlear implant literature mainly focuses on speech perception outcomes, an underappreciated benefit of cochlear implantation is the high likelihood of achieving "normal" sound levels across the audiogram.

Patient preferences for treatment attributes in moderate-to-severe atopic dermatitis: a discrete choice experiment.

Purpose: Evidence on treatment preferences of patients with moderate-to-severe atopic dermatitis (AD) in the United States (US) is limited and an assessment of treatment preferences in this group is warranted.Materials and methods: An online discrete choice experiment survey was conducted (June 2023) among US adults with self-reported moderate-to-severe AD or experience with systemic therapy who had inadequate response to topical treatments. Preference weights estimated from conditional logistic regression models were used to calculate willingness to trade off and attributes' relative importance (RI).Results: Participants (N = 300; mean age: 45 years; 70% females; 52% systemic therapy experienced) preferred treatments with higher efficacy, lower risk of adverse events (AEs), and less frequent blood tests (p < .05). Treatment attributes, from high to low RI, were itch control (38%), risk of cancer (23%), risk of respiratory infections (18%), risk of heart problems (11%), sustained improvement in skin appearance (5%), blood test frequency (3%), and frequency and mode of administration (2%); together, AE attributes accounted for more than half of the RI.Conclusions: Participants preferred AD treatments that maximize itch control while minimizing AE risks, whereas mode of administration had little impact on preferences. Understanding patients' preferences may help improve shared decision-making, potentially leading to enhanced patient satisfaction with treatment, increased engagement, and better clinical outcomes.

Person-centred care (PCC) research in Ghana: a scoping review protocol.

INTRODUCTION: Person-centred care (PCC) is provision of care that is respectful of and responsive to individual patient preferences, needs and values, and ensures that patient values guide all clinical decisions. While there is a large body of evidence on the benefits of PCC in high-income countries, little research exists on PCC in Ghana and Sub-Saharan Africa at large. Most studies on PCC have focused on maternity care as part of the global movement of respectful maternity care. The few studies on patient experiences and health system responsiveness beyond maternal health also highlight gaps in patient experience and satisfaction as well as discrimination in health facilities, which leads to the most vulnerable having the poorest experiences. The protocol for this scoping review aims to systematically map the extent of literature focused on PCC in Ghana by identifying patient expectations and preferences, barriers and facilitators, and interventions. METHODS AND ANALYSIS: The protocol will be guided by the Arksey and O'Malley methodological framework and recommendations by Levac et al. A comprehensive search strategy will be used to search for published articles in PubMed, EMBASE, Web of Science and the African Journals Online from their inception to August 2022. Grey literature and reference lists of included studies will also be searched. Two independent reviewers will perform the literature search, eligibility assessments and study selection. Any disagreements will be resolved through discussion with a third reviewer. A Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram for the scoping reviews will be used to outline the study selection process. Extracted data from the included articles will be synthesised and reported under key concepts derived from the outcomes of the scoping review. ETHICS AND DISSEMINATION: This scoping review does not require ethical approval. The findings will be disseminated through publications and conference presentations. SCOPING REVIEW REGISTRATION: OSF Registration DOI 10.17605/OSF.IO/ZMDH9.

Comparing preferences to evaluations of barrier self-efficacy for two strength training programs in US older adults.

BACKGROUND/OBJECTIVES: Engagement in regular physical activity is one of the best strategies for older adults to remain healthy. Unfortunately, only 35% of older adults meet guidelines for muscle strengthening activities. Eliciting participant preferences is one possible way to improve physical activity engagement. However, other sources of participant input to improve uptake and maintenance remain uninvestigated. This study compared preferences to self-efficacy ratings for two strength training programs. METHODS: We conducted a national cross-sectional survey of 611 US adults over age 65. We compared two participant evaluations (the preferred program and the program for which they had higher barrier self-efficacy) of two hypothetical strength training programs (45 minutes performed three times per week (traditional) and 5 minutes performed daily (brief)). RESULTS: Most participants (68%) preferred the brief strength training program. The difference in self-efficacy ratings was an average of 1.2 (SD = 0.92). One in five participants preferred a strength training program for which they had less self-efficacy; nearly all of these participants (92%) preferred the traditional strength training program but had more self-efficacy for the brief strength training program. CONCLUSION: Older adults reported preferring and having more self-efficacy for a brief compared to a traditional strength training program. Differences in self-efficacy ratings between the two strength training programs were large. Preferences were often not congruent with ratings of self-efficacy. SIGNIFICANCE/IMPLICATIONS: Preferences for strength training programming may not always reflect the program most likely to be maintained. Future investigations should evaluate differences in behavioral uptake, maintenance, and outcomes from two comparative strength training interventions using preferences and self-efficacy.

Preferences and Quality of Life in Nursing Home Residents: A Mixed Methods Study.

PURPOSE: Delivery of person-centered care (PCC) is the standard in nursing homes (NHs) and demonstrates a positive impact on resident quality of life (QOL). PCC inherently recognizes and prioritizes resident preferences; however, preferences, and their degree of importance among residents, demonstrate a variable relationship with QOL that remains underexplored. Therefore, the current study examined the association between preferences and QOL among NH residents. METHOD: A mixed methods study incorporating surveys was conducted among 144 residents, with semi-structured follow-up interviews with 11 residents. RESULTS: Findings confirm a variable relationship between resident preferences and QOL. Higher order preferences not captured within the preference assessment may influence QOL. High numbers of unimportant and can't do/no choice preferences were linked to resident acclimatization to the NH. QOL was at risk if care was not consistent with preferences. CONCLUSION: In-depth assessments and robust measures of preferences and QOL should be integrated into care delivery and future research. [Journal of Gerontological Nursing, 50(5), 7-13.].

Patient Preferences for Telemedicine Video Backgrounds.

This cross-sectional study assesses patient preferences for various visual backgrounds during telemedicine video visits.

Patient and clinician preferences for diabetes management among older adults with co-morbid HIV: A qualitative exploration.

BACKGROUND: Older adults with HIV are at increased risk of developing certain chronic health conditions including type 2 diabetes mellitus (T2DM). As the number and complexity of conditions increases, so do treatment and health care needs. We explored patient and clinician preferences for HIV+T2DM care and perceived solutions to improving care. METHODS: We conducted an exploratory qualitative study comprised of individual in-depth interviews. Participants included English-speaking patients aged 50 and older living with HIV and T2DM and infectious disease (ID) and primary care (PC) clinicians from a large academic health center in Chicago. Thematic analysis drew from the Framework Method. RESULTS: A total of 19 patient and 10 clinician participants were interviewed. Many patients reported seeking HIV and T2DM care from the same clinician; they valued rapport and a 'one-stop-shop'. Others reported having separate clinicians; they valued perceived expertise and specialty care. Nearly all clinicians reported comfort screening for T2DM and initiating first line oral therapy; ID clinicians reported placing referrals for newer, complex therapies. Patients would like educational support for T2DM management; clinicians would like to learn more about newer therapies and easier referral processes. CONCLUSIONS: Patient-centered care includes managing T2DM from a variety of clinical settings for individuals with HIV, yet strategies are needed to better support clinicians. Future research should examine how best to implement these strategies.

A scoping review to create a framework for the steps in developing condition-specific preference-based instruments de novo or from an existing non-preference-based instrument: use of item response theory or Rasch analysis.

BACKGROUND: There is no widely accepted framework to guide the development of condition-specific preference-based instruments (CSPBIs) that includes both de novo and from existing non-preference-based instruments. The purpose of this study was to address this gap by reviewing the published literature on CSPBIs, with particular attention to the application of item response theory (IRT) and Rasch analysis in their development. METHODS: A scoping review of the literature covering the concepts of all phases of CSPBI development and evaluation was performed from MEDLINE, Embase, PsychInfo, CINAHL, and the Cochrane Library, from inception to December 30, 2022. RESULTS: The titles and abstracts of 1,967 unique references were reviewed. After retrieving and reviewing 154 full-text articles, data were extracted from 109 articles, representing 41 CSPBIs covering 21 diseases or conditions. The development of CSPBIs was conceptualized as a 15-step framework, covering four phases: 1) develop initial questionnaire items (when no suitable non-preference-based instrument exists), 2) establish the dimensional structure, 3) reduce items per dimension, 4) value and model health state utilities. Thirty-nine instruments used a type of Rasch model and two instruments used IRT models in phase 3. CONCLUSION: We present an expanded framework that outlines the development of CSPBIs, both from existing non-preference-based instruments and de novo when no suitable non-preference-based instrument exists, using IRT and Rasch analysis. For items that fit the Rasch model, developers selected one item per dimension and explored item response level reduction. This framework will guide researchers who are developing or assessing CSPBIs.

Risk and time preferences in individuals with lifestyle-related and non-lifestyle-related cardiovascular diseases: a pilot study.

OBJECTIVES: To (1) pilot a study of behavioural characterisation based on risk and time preferences in clinically well-characterised individuals, (2) assess the distribution of preferences in this population and (3) explore differences in preferences between individuals with 'lifestyle-related' (LS) and 'non-lifestyle-related' (NLS) cardiovascular diseases. DESIGN: Cross-sectional study with an economic online experiment to collect risk and time preferences, a detailed clinical characterisation and a sociodemographic and lifestyle survey. A definition of LS and NLS groups was developed. SETTING: Specialist outpatient clinics of the clinic for cardiology and pneumology of the University Hospital Düsseldorf and patients from a cardiology practice in Düsseldorf. PARTICIPANTS: A total of 74 individuals with cardiovascular diseases. OUTCOMES: Risk and time preferences. RESULTS: The implementation of the study process, including participant recruitment and data collection, ran smoothly. The medical checklist, the survey and the time preference instrument were well received. However, the conceptual understanding of the risk preference instrument resulted in inconsistent choices for many participants (47%). The remaining individuals were more risk averse (27%) than risk seeking (16%) and risk neutral (10%). Individuals in our sample were also more impatient (49%) than patient (42%). The participant classification showed that 65% belonged to the LS group, 19% to the NLS group and 16% could not be assigned (unclear allocation to lifestyle (ULS) group). Excluding the ULS group, we show that individuals in the LS group were more risk seeking, and unexpectedly, more patient than those in the NLS group. CONCLUSIONS: The process of the pilot study and its results can be used as a basis for the design of the main study. The differences in risk and time preferences between the LS and NLS groups provide us with a novel hypothesis for unhealthy behaviours: individuals never give up a bad habit, they simply postpone the latter, which can be tested alongside other additional research questions.

Some, but not all, cochlear implant users prefer music stimuli with congruent haptic stimulation.

Cochlear implant (CI) users often report being unsatisfied by music listening through their hearing device. Vibrotactile stimulation could help alleviate those challenges. Previous research has shown that musical stimuli was given higher preference ratings by normal-hearing listeners when concurrent vibrotactile stimulation was congruent in intensity and timing with the corresponding auditory signal compared to incongruent. However, it is not known whether this is also the case for CI users. Therefore, in this experiment, we presented 18 CI users and 24 normal-hearing listeners with five melodies and five different audio-to-tactile maps. Each map varied the congruence between the audio and tactile signals related to intensity, fundamental frequency, and timing. Participants were asked to rate the maps from zero to 100, based on preference. It was shown that almost all normal-hearing listeners, as well as a subset of the CI users, preferred tactile stimulation, which was congruent with the audio in intensity and timing. However, many CI users had no difference in preference between timing aligned and timing unaligned stimuli. The results provide evidence that vibrotactile music enjoyment enhancement could be a solution for some CI users; however, more research is needed to understand which CI users can benefit from it most.

The Effects of Patient Preference on Clinical Outcome, Satisfaction and Adherence Within the Treatment of Anxiety and Depression: A Meta-Analysis.

BACKGROUND: Taking patient preference into consideration has received increased attention in the last decades. We conducted a meta-analysis to estimate the effects of patient preference on clinical outcome, satisfaction and adherence regarding treatment of depression and anxiety. METHODS: Pubmed, Embase, PsycINFO and Scopus were searched for (cluster) randomized controlled trials. Twenty-six randomized controlled clinical trials were included, comprising 3670 participants, examining the effect of patient preference regarding treatment of anxiety and depression on clinical outcome, satisfaction and/or adherence. RESULTS: No effect of patient preference was found on clinical outcome [d = 0.06, 95% CI = (-0.03, 0.15), p = 0.16, n = 23 studies]. A small effect of patient preference was found on treatment satisfaction [d = 0.33, 95% CI = (0.08, 0.59), p = 0.01, n = 6 studies] and on treatment adherence [OR = 1.55, 95% CI = (1.28, 1.87), p < 0.001, n = 22 studies]. LIMITATIONS: Patient preference is a heterogeneous concept, future studies should strive to equalize operationalization of preference. Subgroup analyses within this study should be interpreted with caution because the amount of studies per analysed subgroup was generally low. Most studies included in this meta-analysis focused on patients with depression. The small number of studies (n = 6) on satisfaction, prevents us from drawing firm conclusions. CONCLUSIONS: While this meta-analysis did not find a positive effect of considering patient preference on clinical outcome, it was associated with slightly better treatment satisfaction and adherence. Accommodating preference of patients with anxiety and depression can improve treatment. TRIAL REGISTRATION: PROSPERO: CRD42020172556.

Evaluating feedback reports to support documentation of veterans' care preferences in home based primary care.

BACKGROUND: To evaluate the effectiveness of delivering feedback reports to increase completion of LST notes among VA Home Based Primary Care (HBPC) teams. The Life Sustaining Treatment Decisions Initiative (LSTDI) was implemented throughout the Veterans Health Administration (VHA) in the United States in 2017 to ensure that seriously ill Veterans have care goals and LST decisions elicited and documented. METHODS: We distributed monthly feedback reports summarizing LST template completion rates to 13 HBPC intervention sites between October 2018 and February 2020 as the sole implementation strategy. We used principal component analyses to match intervention to 26 comparison sites and used interrupted time series/segmented regression analyses to evaluate the differences in LST template completion rates between intervention and comparison sites. Data were extracted from national databases for VA HBPC in addition to interviews and surveys in a mixed methods process evaluation. RESULTS: LST template completion rose from 6.3 to 41.9% across both intervention and comparison HBPC teams between March 1, 2018, and February 26, 2020. There were no statistically significant differences for intervention sites that received feedback reports. CONCLUSIONS: Feedback reports did not increase documentation of LST preferences for Veterans at intervention compared with comparison sites. Observed increases in completion rates across intervention and comparison sites can likely be attributed to implementation strategies used nationally as part of the national roll-out of the LSTDI. Our results suggest that feedback reports alone were not an effective implementation strategy to augment national implementation strategies in HBPC teams.

Preference of primary care patients for home-based healthcare and support services: a discrete choice experiment in China.

Importance: This research, utilizing discrete choice experiments, examines the preferences and willingness to pay for home-based healthcare and support services among residents in China, a country grappling with severe aging population, an area often underexplored in international scholarship. Objectives: This study aims to solicit the preferences of primary care patients for home-based healthcare and support services in China. Design setting and participants: A discrete choice experiment (DCE) was conducted on 312 primary care patients recruited from 13 community health centers in Wuhan and Kunming between January and May 2023. The experimental choice sets were generated using NGene, covering five attributes: Scope of services, health professionals, institutions, insurance reimbursements, and visiting fees. Main outcomes and measures: The choice sets were further divided into three blocks, and each participant was asked to complete one block containing 12 choice tasks. Mixed logit models were established to estimate the relevant importance coefficients of and willingness to pay for different choices, while Latent Class Logit (LCL) modeling was conducted to capture possible preferences heterogeneity. Results: The relevant importance of the scope of services reached 67.33%, compared with 19.84% for service institutions and 12.42% for health professionals. Overall, respondents preferred physician-led diagnostic and treatment services. LCL categorized the respondents into three groups: Group one (60.20%) was most concerned about the scope of services, prioritizing disease diagnosis and treatment over preventive care and mental health, while group two (16.60%) was most concerned about care providers (hospitals and medical doctors were preferred), and group three (23.20%) was most concerned about financial burdens. Conclusion: Primary care patients prefer physical health and medical interventions for home-based healthcare and support services. However, heterogeneity in preferences is evident, indicating potential disparities in healthcare and support at home services in China.

Attributes for a discrete-choice experiment on preferences of patients for oncology pharmacy consultations.

PURPOSE: To ensure the safe use of oral anticancer drugs, oncology pharmacy consultations (OPCs) have been established in France. They are conditioned by the needs, expectations, and involvement of the patients in their care. Thus, it is essential to elicit their preferences. The discrete-choice experiment (DCE) is a method recommended by the ISPOR for such a task. The "selection and validation of attributes and their values" step is fundamental in this process. In this context, the aim of this study was to present our research approach to identify and validate the attributes that characterize an OPC and their values. METHODS: Due to the lack of relevant published data in the literature, the focus-group method was used in accordance with good research practices for the application of conjoint-analysis of the ISPOR. The two-round Delphi method was used to validate the attributes and their values identified by the focus-group method. RESULTS: The focus-group method enabled identification of nine attributes. Thirty-seven healthcare professionals at a national level, including 30 pharmacists and seven physicians, were selected to take part in the Delphi procedure. Seven attributes (frequency, planification, operation mode, duration, content, written support, and report) and their values were thus validated. CONCLUSION: Based on these results, the next step will be to elicit patient preferences for OPCs and to then shed light on the issues of pharmaceutical support for patients by comparing their preferences with those of informal caregivers and, in particular, those of the healthcare professionals involved in their care.

Women's expectations, preferences and needs in midwifery care - results from the qualitative Midwifery Care (MiCa) study: Childbirth and early parenthood.

OBJECTIVE: The main goals of our study were (I) the investigation of expectations and preferences as well as (II) the determination of needs of women in regard to midwifery care. DESIGN: Descriptive phenomenology was used to investigate the ways in which women experienced childbirth and early parenthood. A descriptive qualitative research design was chosen, using focus groups. SETTING: ix online focus groups were carried out with 19 women for this part of the Midwifery Care (MiCa) study, mainly from the north of Germany. PARTICIPANTS: Women shortly after birth, in puerperium and the first year after childbirth were recruited in Germany. A purposeful strategy according to maximum variation sampling was applied to reach diversity in the sample regarding age and previous children. Data were analysed using qualitative content analysis, according to Mayring, with support of the qualitative data analysis software MAXQDA 2022. FINDINGS: Six main categories were derived for both childbirth and early parenthood: (a) involvement of family, (b) need for information, (c) physical and psychological aspects and (d) orientation in the healthcare system. In each group, one main category about provision of healthcare was developed: (e) care around childbirth and (f) midwifery care in early parenthood. Women attached great importance to the communication with midwives and favoured the involvement of their partners in the childbirth process and during parenting. Based on different experiences and inconsistency of information, women would prefer consistency in staff and communication as well as standardised information. CONCLUSIONS: From the user's perspective, midwifery care is crucial during childbirth and the child's first year of life. Current health care during and after childbirth and early parenthood lacks individualised care models, emotional support, adequate and professional communication between different health care providers, and consistency in midwifery care. Our findings should be translated into health care delivery with effective interprofessional teamwork within the continuity of midwifery care. Further quantitative research should analyse the individual healthcare situations of women in the reproductive phase of their life as well as of the applied healthcare models in order to personalise care and to improve healthcare quality.

Comparing preferences for skin cancer screening: AI-enabled app vs dermatologist.

BACKGROUND AND AIM: Skin cancer is a major public health issue. While self-examinations and professional screenings are recommended, they are rarely performed. Mobile health (mHealth) apps utilising artificial intelligence (AI) for skin cancer screening offer a potential solution to aid self-examinations; however, their uptake is low. Therefore, the aim of this research was to examine provider and user characteristics influencing people's decisions to seek skin cancer screening performed by a mHealth app or a dermatologist. METHODS: Two forced-choice conjoint experiments with Nmain = 1591 and Nreplication = 308 participants from the United States were conducted online to investigate preferences for screening providers. In addition to the provider type (mHealth app vs dermatologist), the following provider attributes were manipulated: costs, expertise, privacy policy, and result details. Subsequently, a questionnaire assessed various user characteristics, including demographics, attitudes toward AI technology and medical mistrust. RESULTS: Outcomes were consistent across the two studies. The provider type was the most influential factor, with the dermatologist being selected more often than the mHealth app. Cost, expertise, and privacy policy also significantly impacted decisions. Demographic subgroup analyses showed rather consistent preference trends across various age, gender, and ethnicity groups. Individuals with greater medical mistrust were more inclined to choose the mHealth app. Trust, accuracy, and quality ratings were higher for the dermatologist, whether selected or not. CONCLUSION: Our results offer valuable insights for technology developers, healthcare providers, and policymakers, contributing to unlocking the potential of skin cancer screening apps in bridging healthcare gaps in underserved communities.

Needs and preferences regarding a mobile application to support diabetic foot self-care.

OBJECTIVE: To identify the needs and preferences of individuals with type 2 diabetes regarding the functionalities and characteristics for a mobile application to support foot self-care. METHOD: Qualitative research with 16 individuals diagnosed with type 2 diabetes recruited during clinical care at a university hospital in Porto, Portugal. Data were collected through semi-structured interviews between March and June 2022 and analyzed using inductive content analysis. RESULTS: Three categories and nine subcategories were identified. Categories included informational needs, essential functionalities for foot health self-care, and user-relevant experience. The preference for objective, limited data input, flexible, and customizable applications was an important factor influencing technology engagement. CONCLUSION: The research highlighted a preference for customizable and flexible applications, aiding nurses in creating solutions that transform care delivery and enhance the quality of life for individuals living with diabetes.

The value of knowing: preferences for genetic testing to diagnose rare muscle diseases.

BACKGROUND: Genetic testing can offer early diagnosis and subsequent treatment of rare neuromuscular diseases. Options for these tests could be improved by understanding the preferences of patients for the features of different genetic tests, especially features that increase information available to patients. METHODS: We developed an online discrete-choice experiment using key attributes of currently available tests for Pompe disease with six test attributes: number of rare muscle diseases tested for with corresponding probability of diagnosis, treatment availability, time from testing to results, inclusion of secondary findings, necessity of a muscle biopsy, and average time until final diagnosis if the first test is negative. Respondents were presented a choice between two tests with different costs, with respondents randomly assigned to one of two costs. Data were analyzed using random-parameters logit. RESULTS: A total of 600 online respondents, aged 18 to 50 years, were recruited from the U.S. general population and included in the final analysis. Tests that targeted more diseases, required less time from testing to results, included information about unrelated health risks, and were linked to shorter time to the final diagnosis were preferred and associated with diseases with available treatment. Men placed relatively more importance than women on tests for diseases with available treatments. Most of the respondents would be more willing to get a genetic test that might return unrelated health information, with women exhibiting a statistically significant preference. While respondents were sensitive to cost, 30% of the sample assigned to the highest cost was willing to pay $500 for a test that could offer a diagnosis almost 2 years earlier. CONCLUSION: The results highlight the value people place on the information genetic tests can provide about their health, including faster diagnosis of rare, unexplained muscle weakness, but also the value of tests for multiple diseases, diseases without treatments, and incidental findings. An earlier time to diagnosis can provide faster access to treatment and an end to the diagnostic journey, which patients highly prefer.