Participant Preferences Research Articles

‘Ease of adaptation’ predicts preferred spectacle prescriptions better than visual acuity: a retrospective analysis

ABSTRACT Clinical relevance Factors predicting patient acceptance of a new spectacle prescription need to be determined to make optimal prescribing decisions. Background Clinicians usually prescribe for best visual acuity. However, for some patients, a partial change is prescribed to ease adaptation, despite providing suboptimal visual acuity. This study seeks to develop an understanding of which factors predict patient preference between spectacle prescriptions by using a retrospective analysis to compare ease of adaptation, subjective quality of distance vision and optimal distance visual acuity. Methods A retrospective analysis utilised a 196-patient data set in which participants wore two prescriptions, one based on the subjective refraction of an optometrist modified by judgement and one on autorefractor results modified for ease of adaptation by an algorithm. Spectacles were worn for 3 weeks each, and participants responded to questions about which prescription they preferred and their quality of distance vision and ease of adaptation (on a 0–10 scale) with each prescription. A logistic regression analysed which variables predicted whether participants responded yes or no to the question ‘If you had purchased these spectacles for $100 (US$200 adjusted to 2023 value), would you be happy with them?’ Results There was a significant difference between the preferred and non-preferred prescriptions for the subjective quality of distance vision rating (medians 9 vs. 8; Z = –7.80, p < 0.0001) and ease of adaptation rating (medians 8 vs. 5; Z = –8.32, p < 0.0001) but the distance binocular visual acuity was not significantly different (both means = –0.09 logMAR; Z = –0.60, p = 0.55). Of all participants, 94% preferred the prescription deemed easier to adapt to but only 59% preferred the prescription with better subjective quality of distance vision and best visual acuity. Conclusion Distance visual acuity was not found to be a useful predictor of participant preference to a new prescription and is likely over-relied upon in practice. The results support the adjustment of the subjective prescription where appropriate to aid patient adaptation and comfort.

Impact of the COVID-19 Pandemic on People Living with Rheumatoid Arthritis: Experiences and Preferences in Accessing Healthcare Across FiveCountries.

The global coronavirus 2019 (COVID-19) pandemic created many challenges in healthcare provision. This study aimed to evaluate the global impact of the COVID-19 pandemic on people living with rheumatoid arthritis (RA). The RA Narrative COVID-19 survey was conducted online among people with RA who resided in Brazil, Canada, France, Japan, and the US from August to September 2021. The survey examined disease management, healthcare access and experiences, and participant preferences for interactions with their doctor. Overall, 500 participants completed the survey: 100 each resided in Brazil, Canada, France, Japan, and the US. Emotional well-being was the aspect of disease management most reported to be negatively impacted by the pandemic (55% of participants); 'having more anxiety and/or stress' during the pandemic was the top factor that made controlling RA symptoms more difficult (49% of participants). In comparison, the top factor that made controlling RA symptoms easier was 'having a less busy schedule' (35% of participants). More participants had virtual appointments during versus pre-pandemic (53% vs. 13%, respectively) and participants were equally satisfied with the overall quality of care received via virtual and in-person appointments (76% of participants were 'satisfied' or 'very satisfied' with both). However, participants generally preferred in-person over virtual appointments, except for prescription refills, for which preferences were similar (39% vs. 36%, respectively). This survey suggests that the COVID-19 pandemic did negatively impact some aspects of disease management for people living with RA but had positive impacts on the utilization of virtual care. Although participants generally preferred in-person appointments, these results position virtual care as an appropriate means for routine follow-ups.

Traditional Lecture Versus Procedural Video Randomized Trial: Comparative Analysis of Instructional Methods for Teaching Baclofen Pump Management.

This study compared the effectiveness of traditional lectures and microvideos in teaching baclofen pump programming and refilling to physicians who have completed less than 10 refills for the previous 2 yrs. A mixed-method approach was used with 60 participating physicians specializing in physical medicine and rehabilitation or pain management. Preintervention and postintervention assessments were conducted using a rubric, and the participants' perceptions and preferences were gathered through focus group sessions. Two thirds of the participants specialized in physical medicine and rehabilitation. No significant differences in the preintervention, postintervention, or knowledge retention scores were found between the traditional lecture and microvideo groups. Both methods demonstrated comparable effectiveness in improving the baclofen pump refilling and programming skills. Qualitatively, participants perceived both approaches as equally helpful, but those in the microvideo group raised concerns because of instructors' unavailability and online platform navigation. Nevertheless, they preferred the convenience, accessibility, and time efficiency of the microvideos. The study concluded that microvideos are an effective alternative to traditional lectures for acquiring knowledge on baclofen pump programming and refilling. Further research should consider learners' characteristics and investigate the benefits of blended learning in medical education.

Sertraline for anxiety in adults with a diagnosis of autism (STRATA): study protocol for a pragmatic, multicentre, double-blind, placebo-controlled randomised controlled trial

BackgroundSelective serotonin reuptake inhibitors (SSRIs) are commonly prescribed to manage anxiety in adults with an autism diagnosis. However, their effectiveness and adverse effect profile in the autistic population are not well known. This trial aims to determine the effectiveness and cost-effectiveness of the SSRI sertraline in reducing symptoms of anxiety and improving quality of life in adults with a diagnosis of autism compared with placebo and to quantify any adverse effects.MethodsSTRATA is a two-parallel group, multi-centre, pragmatic, double-blind, randomised placebo-controlled trial with allocation at the level of the individual. It will be delivered through recruiting sites with autism services in 4 regional centres in the United Kingdom (UK) and 1 in Australia. Adults with an autism diagnosis and a Generalised Anxiety Disorder Assessment (GAD-7) score ≥ 10 at screening will be randomised 1:1 to either 25 mg sertraline or placebo, with subsequent flexible dose titration up to 200 mg. The primary outcome is GAD-7 scores at 16 weeks post-randomisation. Secondary outcomes include adverse effects, proportionate change in GAD-7 scores including 50% reduction, social anxiety, obsessive-compulsive symptoms, panic attacks, repetitive behaviours, meltdowns, depressive symptoms, composite depression and anxiety, functioning and disability and quality of life. Carer burden will be assessed in a linked carer sub-study. Outcome data will be collected using online/paper methods via video call, face-to-face or telephone according to participant preference at 16, 24 and 52 weeks post-randomisation, with brief safety checks and data collection at 1–2, 4, 8, 12 and 36 weeks. An economic evaluation to study the cost-effectiveness of sertraline vs placebo and a QuinteT Recruitment Intervention (QRI) to optimise recruitment and informed consent are embedded within the trial. Qualitative interviews at various times during the study will explore experiences of participating and taking the trial medication.DiscussionResults from this study should help autistic adults and their clinicians make evidence-based decisions on the use of sertraline for managing anxiety in this population.Trial registrationISRCTN, ISRCTN15984604. Registered on 08 February 2021. EudraCT 2019-004312-66. ANZCTR ACTRN12621000801819. Registered on 07 April 2021.

Trust, discrimination and preference for shared decision-making in adolescents diagnosed with depression: Implications from Chinese mental health professionals

BackgroundWhile evidence suggests that the attitudes of healthcare providers toward medical decision-making in adolescents diagnosed with depression merit exploration, research on their preferences for Shared Decision-Making (SDM) and the factors affecting these preferences remains limited. ObjectiveTo investigate Chinese mental health professionals’ (MHPs) preferences for SDM in adolescents with depression and identify the relationships between their preference for SDM and trust and discrimination. MethodsA cross-sectional design was used in this study. Clinical Decision-making Style-Staff (CDMS-S) was applied to evaluate their preferences for SDM. Physician Trust in the Patient Scale (PTPS) was utilised to assess their trust in consumers. Social Distance Scale to Mental Illness (SDSMI) was utilised to measure their discrimination against people with mental illness. ResultsA total of 581 MHPs were identified in China. MHPs rated their preference for participation in decision making (PD) as shared (1.89 ± 0.472), information (IN) as moderate (2.62 ± 0.682), and family involvement (FI) as high (3.13 ± 0.840). The preferences for three decision topics ranked from the highest to the lowest score were working-related decision (2.35 ± 0.681), general preferences in decision (1.82 ± 0.581) and medication-related decision (1.74 ± 0.826). The mean score of PTPS and SDSMI were 34.71 (SD=9.709) and 15.17 (SD=4.299), respectively. Logistic regression indicated that the preference for PD was associated with discrimination; the preference for IN was associated with trust, discrimination and SDM-related training experience; and the preference for FI was associated with both trust and discrimination. ConclusionsWhile MHPs generally exhibit a favourable attitude toward SDM, this positivity is not universally observed across all contexts. There remains room for improvement in the willingness to co-develop medication regimens and share health information. Rational recognition of depression, and building trusting and friendly therapeutic relationships are key to promoting MHPs’ preferences for SDM. Practical valueMHPs' preferences for SDM have a significant impact on SDM implementation, which will be promoted by implementing SDM-related training.

Research on the stability evolution mechanism and combinatorial optimization decision‐making of multitype heterogeneous energy cooperative operation

AbstractConsidering the cooperative willingness of multiple heterogeneous energy sources to participate in the alliance, the stability of the cooperative operation of each entity (hereinafter referred to as stability) and the supporting mechanism of its optimal combination to realize the high proportion of new energy generation are studied. Through simulating load peak‐cutting and valley‐filling in the power system, the difference between the load value and the base load in the 24 h of the daily load curve is used as the calculation condition for the supply balance of the alliance. Based on the source‐load power balance model, the feasibility of power data normalization is derived and demonstrated. Simultaneously, taking into account the time‐of‐use price cost of each entity, a multiscale operation cost allocation and stability evolution analysis model for the alliance is constructed using the Shapley value and the largest consistent set method. By comparing the willingness of each entity to engage in the alliance, as well as the multiscale operation stability and economic change rule of different alliances, the results demonstrate that: (1) Alliance 1 has the advantage of economic operation. (2) The common stability period of different alliances is influenced by the participation preferences of each entity (wind power, photovoltaic, and thermal power tend to participate in Alliance 1, while hydropower tends to participate in Alliance 2). (3) Alliance internal restructuring can be carried out by utilizing spatial and temporal difference characteristics of different entities’ participation in alliance preferences, thereby achieving alliance stability and efficient operation. This study provides a theoretical basis for making decisions regarding the optimized stable operation of the alliance.

Effects of an interactive web-based support system via mobile phone on preference-based patient participation in patients living with hypertension – a randomized controlled trial in primary care

Objective To estimate the effects of an interactive web-based support system via mobile phone on preference-based patient participation in patients with hypertension treated in primary care (compared with standard hypertensive care only). Design A parallel group, non-blinded, randomized controlled trial, conducted October 2018–February 2021. Besides standard hypertensive care, the intervention group received eight weeks of support via mobile phone to facilitate self-monitoring and self-management, tentatively providing for augmented patient engagement. Setting 31 primary healthcare centers in Sweden. Subjects 949 patients treated for hypertension. Main outcome measures The effects on preference-based patient participation, that is, the match between a patient’s preferences for and experiences of patient participation in their health and healthcare. This was measured with the 4Ps (Patient Preferences for Patient Participation) tool at baseline, after 8 weeks, and at 12 months. Data were registered electronically and analyzed with multilevel ordinal regression. Results At baseline, 43–51% had a complete match between their preferences for and experiences of patient participation. There was an indication of a positive effect by a higher match for ‘managing treatment myself’ at 8-weeks in the intervention group. Such preference-based participation in their health and healthcare was reversed at 12 months, and no further effects of the intervention on preference-based patient participation persisted after 12 months. Conclusion The interactive web-based support system via mobile phone had a wavering effect on preference-based patient participation. There is a prevailing need to better understand how person-centered patient participation can be facilitated in primary care.

Exploring the sustained impact of the Mindfulness-Based Stress Reduction program: a thematic analysis.

This study aimed to explore the time-varying impact of the Mindfulness-Based Stress Reduction (MBSR) program, specifically examining its effects on various variables 3 months, 1 year, and 3 years after program completion. Additionally, the study aimed to identify the barriers and facilitators in maintaining mindfulness practice over time and the preferred mindfulness practices among participants in three distinct time groups. The study utilized a qualitative research design, conducting semi-structured interviews with 45 participants who had completed the 8-week MBSR program at different time points. Thematic analysis was employed to analyze the qualitative data obtained from the interviews, allowing for the identification of key themes and patterns. The findings revealed that the effectiveness of the MBSR program varied at different times and across different variables. Immediately after completing the program, participants experienced a significant decrease in stress levels and an increase in awareness. One year later, the program continued to have positive effects on inner calm, coping mechanisms, and relationships. Three years after completing the program, its long-term impact was observed in the adoption of a mindful lifestyle, increased compassion and kindness, and ongoing personal growth. The study highlights the transformative potential of the MBSR program beyond short-term symptom relief. The long-term effects observed in overall wellbeing emphasize the sustained efficacy of mindfulness-based interventions. The identified barriers and facilitators in maintaining mindfulness practice provide insights for program implementation and individual engagement. By understanding the long-term impact and preferences of participants, tailored interventions can be developed to maximize the benefits of the MBSR program for individuals over time.

The Effect of Visual Aids on Reading Numeric Data Tables.

Data tables are one of the most common ways in which people encounter data. Although mostly built with text and numbers, data tables have a spatial layout and often exhibit visual elements meant to facilitate their reading. Surprisingly, there is an empirical knowledge gap on how people read tables and how different visual aids affect people's reading of tables. In this work, we seek to address this vacuum through a controlled study. We asked participants to repeatedly perform four different tasks with four table representation conditions (plain tables, tables with zebra striping, tables with cell background color encoding cell value, and tables with in-cell bars with lengths encoding cell value). We analyzed completion time, error rate, gaze-tracking data, mouse movement and participant preferences. We found that color and bar encodings help for finding maximum values. For a more complex task (comparison of proportional differences) color and bar helped less than zebra striping. We also characterize typical human behavior for the four tasks. These findings inform the design of tables and research directions for improving presentation of data in tabular form.

Virtual reality after stroke: Identifying important characteristics when designing experiences to improve engagement in upper limb rehabilitation.

Virtual reality (VR) has been used to improve upper limb function after stroke but there is little to guide product developers in building experiences that engage users in the sustained, repetitive training required. This research sought to understand the characteristics of VR scenarios best suited to engaging someone with a stroke during recovery to achieve therapeutic outcomes. Five creative immersive VR scenarios were designed by an experienced VR content creator containing unique combinations of VR characteristics. The usefulness of the scenarios was reviewed by expert clinicians experienced in stroke rehabilitation. Following this review, seven stroke survivors participated in each experience and reported on their engagement and motivation. Outcome measures were the User Satisfaction Evaluation Questionnaire and the modified Intrinsic Motivation Inventory. Semi-structured interviews were conducted with five participants following their immersive VR experience and analysed thematically. Expert clinicians reported potential therapeutic value in the immersive VR scenarios by providing opportunities for repeated and graded practice of upper limb movements. Stroke survivors reported varied levels of enjoyment and engagement for each scenario. They recommended changes to the experiences, primarily relating to the tailoring of the scenarios to match varied upper limb capacities. This study highlights the characteristics of immersive VR scenarios that are important in sustaining motivation and providing high-repetition task-specific movement experiences. Differences in the experience and preferences of stroke participants regarding the characteristics of immersive VR experiences indicate that a variety of experiences are necessary to engage and sustain participation in an immersive VR-related therapy programme.

Entropy indicators of fragmentation among specialists of the significance of features of investment attractiveness of objects of expertise.

The systems of preferences of expertise participants are an important indicator of the influence of the human factor on decision making. Their applied aspect lies in the use of an integral assessment of the investment attractiveness of objects of expertise/projects to solve multicriteria problems, as well as the establishment of “compromises” in the requirements for the degree of expression of investment attractiveness features inherent in each object/project. The system of advantages is an ordered series of specified features (n = 18): from more significant (significant, attractive, etc.) to less significant. The implementation of a multi-step technology and algorithm for identifying and rejecting marginal thoughts, eliminating the “systematic error of the survivor” made it possible to identify four subgroups from the initial sample of experts numbering m = 90 people (mС = 30 people, mН = 12 people, mМ = 11 people, mТ = 6 people) whose internal group consistency of opinions about the significance of features of investment attractiveness satisfies the range of system-information criteria at an unusually high level of significance for human factor studies a = 1 %. It is substantiated that the group system of preferences of members of the mС subgroup should be considered basic. The opinions of marginal experts form a subgroup of mU = 31 people. The degree to which experts differentiate the significance of features of investment attractiveness in the process of compiling them is determined by the number of “related” ranks and is taken into account when determining the Kendall dispersion coefficient of concordance (agreement). It is proposed to apply the entropy of the fragmentation of features for the same purpose. For each of the m subjects, normalized entropy indicators were determined, which were generalized both for group m and for subgroups mС, mН, mМ, mТ. Using the Student’s test, a statistically probable (a = 1%) agreement between the average entropy indicators was established. Therefore, the criteria for dividing them into subgroups-clusters according to the applied technology for identifying and screening out marginal thoughts and eliminating the “systematic survivor bias” are important. The paradoxical nature of the research hypothesis has been established, since it is logical to assume that the more competent the expert, the more strictly he will order the studied features of investment attractiveness, and therefore the less entropy of ranks should then be observed in his system of advantages. On the other hand, the same high level of expert competence can lead to his conscious caution in ordering the studied traits, and therefore the use of a larger number of “connected (middle)” ranks, which will contribute to an increase in their entropy. For the mС subgroup, recognized as the basic one, it was found that greater entropy is characteristic of a more significant feature of the investment attractiveness of the objects of examination. The well-known approach to determining entropy concordance coefficients did not turn out to be effective under the conditions of our research and needs further development. Taking into account the issues highlighted, further steps are outlined for the development of information-entropy technologies for expert research.

Understanding dentatorubral-pallidoluysian atrophy (DRPLA) symptoms and impacts on daily life: a qualitative interview study with patients and caregivers.

Dentatorubral-pallidoluysian atrophy (DRPLA) is a rare, neurodegenerative disorder with no disease-modifying treatments. There is a dearth of information in the literature about the patient and caregiver experience living with DRPLA. This study aimed to (1) understand symptoms experienced by adult- and juvenile-onset DRPLA populations and their impact on daily life and (2) explore patient and caregiver treatment goals and clinical trial participation preferences. The study was a qualitative interview study. Interviews were conducted remotely with adult patients with DRPLA and caregivers. Participants described patient symptoms and the impact of those symptoms on daily life, and they discussed treatment goals and potential clinical trial participation. There were 18 patients described in the interviews with two patients and seven caregivers. Some participants were caregivers to multiple patients with DRPLA. Interview transcripts were coded for themes, and reported symptoms were summarized with descriptive statistics. Adult-onset patients (N = 7) experienced difficulty with ataxia (100%), cognition (100%), fine motor skills (100%), gross motor skills (100%), speech (100%), personality changes (100%), and seizures (57%). Juvenile-onset patients (N = 11) experienced difficulty with ataxia (100%), sleep (100%), speech (100%), jerking/twitching (83%), behavior (82%), cognition (82%), fine motor skills (82%), gross motor skills (82%), sensory sensitivity (75%), and seizures (64%). When considering aspects of DRPLA to target for future treatment, patients prioritized ataxia/mobility (100%), juvenile-onset caregivers prioritized ataxia/mobility (60%) and independence (60%), and adult-onset caregivers prioritized personality (60%). Almost all patients (93%) would participate in a clinical trial if given the opportunity, but travel to a clinical site could pose a participation barrier for half. This study found that there are symptom domains that are relevant across the DRPLA population, but there is heterogeneity within each domain based on the age of symptom onset and disease stage, which has implications for clinical trial design.

SONOICE! a Sonar-Voice dynamic user interface for assisting individuals with blindness and visual impairment in pinpointing elements in 2D tactile readers.

Pinpointing elements on large tactile surfaces is challenging for individuals with blindness and visual impairment (BVI) seeking to access two-dimensional (2D) information. This is particularly evident when using 2D tactile readers, devices designed to provide 2D information using static tactile representations with audio explanations. Traditional pinpointing methods, such as sighted assistance and trial-and-error, are limited and inefficient, while alternative pinpointing user interfaces (UI) are still emerging and need advancement. To address these limitations, we develop three distinct navigation UIs using a user-centred design approach: Sonar (proximity-radar sonification), Voice (direct clock-system speech instructions), and Sonoice, a new method that combines elements of both. The navigation UIs were incorporated into the Tactonom Reader device to conduct a trial study with ten BVI participants. Our UIs exhibited superior performance and higher user satisfaction than the conventional trial-and-error approach, showcasing scalability to varied assistive technology and their effectiveness regardless of graphic complexity. The innovative Sonoice approach achieved the highest efficiency in pinpointing elements, but user satisfaction was highest with the Sonar approach. Surprisingly, participant preferences varied and did not always align with their most effective strategy, underscoring the importance of accommodating individual user preferences and contextual factors when choosing between the three UIs. While more extensive training may reveal further differences between these UIs, our results emphasise the significance of offering diverse options to meet user needs. Altogether, the results provide valuable insights for improving the functionality of 2D tactile readers, thereby contributing to the future development of accessible technology.

Program of All-Inclusive Care for the Elderly (PACE) Organizations Flip the Script in Response to the COVID-19 Pandemic

ObjectivesProgram of All-Inclusive Care (PACE) organizations faced unique challenges during the COVID-19 pandemic, particularly given PACE participants are frail older adults who often live with multiple disabilities and chronic conditions. This study describes how PACE programs leveraged their unique program flexibilities and adapted services to manage this crisis. DesignMixed methods. Setting and ParticipantsThis study leveraged 2 national surveys of PACE directors (with response rates of 71.2% and 67.8%) and 6 qualitative interviews. MethodsDescriptive and univariate analyses of survey response data and thematic analyses of qualitative data from interviews and open-ended survey questions were conducted. ResultsResults indicated that PACE organizations responded rapidly to the COVID-19 pandemic, implementing a range of adaptations that shifted the PACE model from primarily center-based to a home-based model of care. Most PACE organizations reported increasing the in-home services they provided, often accomplishing this through the redeployment of center-based staff. PACE organizations likewise leveraged telehealth and remote monitoring to increase support to beneficiaries in their home, implemented various COVID-19 vaccine and infection prevention efforts, increased food and nutrition services provided in the home, and took steps to address social isolation and boredom, among other initiatives. Most PACE organizations indicated they plan to continue delivering more services in the home, consistent with participant preferences. Conclusions and ImplicationsThe findings from this study indicate that PACE organizations continued to keep participants at the forefront as they transitioned to a home-based model during the COVID-19 pandemic. Key characteristics of PACE, including its strong emphasis on person-centered team-based care, its fully integrated service model, and its flexible capitated payment structure, contributed to the resilience of the program. These findings highlight PACE organizations' ability to empower nursing home–eligible older adults to remain living in their preferred residential setting and have implications for how best to serve this population.

Examining the Benefits of Water Births in a Hospital Setting: Perspectives from Midwives and Nurses

Objective: This study aimed to investigate the impact of midwifery-led care on maternal outcomes, maternal satisfaction, and newborn health in a hospital setting. Specifically, the study sought to compare the effects of midwifery-led care to standard care models, assess maternal preparedness for childbirth, explore rates of medical interventions, evaluate maternal satisfaction, and examine newborn health outcomes. Methods: A total of 200 expectant mothers receiving prenatal care at a tertiary hospital were recruited and randomly assigned to two groups: Group A (midwifery-led care) and Group B (standard care). Participants' demographic information, medical history, and preferences related to prenatal care were collected using a structured questionnaire. Validated surveys, including the Edinburgh Postnatal Depression Scale (EPDS), were used to assess postpartum depression. Medical records and prenatal visits were reviewed throughout the pregnancy, and postpartum follow-ups were scheduled to assess maternal outcomes. Statistical analyses were performed to compare outcomes between the two groups. Results: Participants in the midwifery-led care group reported significantly higher levels of birth preparedness (p &lt; 0.001), and rates of medical interventions during childbirth, including cesarean sections, were significantly lower compared to the standard care group (p &lt; 0.05). Maternal satisfaction scores were significantly higher in the midwifery-led care group (p &lt; 0.001). Additionally, the midwifery-led care group showed lower rates of postpartum depression (p &lt; 0.01) and higher rates of exclusive breastfeeding at six weeks postpartum (p &lt; 0.05). Neonates born to mothers in the midwifery-led care group had significantly lower rates of neonatal complications (p &lt; 0.01). Conclusion: The findings of this study provide strong evidence for the positive impact of midwifery-led care on maternal outcomes, maternal satisfaction, and newborn health. The personalized and woman-centered approach of midwifery-led care contributes to improved maternal preparedness, reduced medical interventions, increased maternal satisfaction, lower rates of postpartum depression, and better newborn health outcomes. These results highlight the potential benefits of integrating midwifery-led care models into maternity services, aiming to enhance the overall birthing experience and improve maternal and infant health outcomes.

Identifying patient preferences for diabetes care: A protocol for implementing a discrete choice experiment in Samoa.

In Samoa, adult Type 2 diabetes prevalence has increased within the past 30 years. Patient preferences for care are factors known to influence treatment adherence and are associated with reduced disease progression and severity. However, patient preferences for diabetes care, generally, are understudied, and other patient-centered factors such as willingness-to-pay (WTP) for diabetes treatment have never been explored in this setting. Discrete Choice Experiments (DCE) are useful tools to elicit preferences and WTP for healthcare. DCEs present patients with hypothetical scenarios composed of a series of multi-alternative choice profiles made up of attributes and levels. Patients choose a profile based on which attributes and levels may be preferable for them, thereby quantifying and identifying locally relevant patient-centered preferences. This paper presents the protocol for the design, piloting, and implementation of a DCE identifying patient preferences for diabetes care, in Samoa. Using an exploratory sequential mixed methods design, formative data from a literature review and semi-structured interviews with n = 20 Samoan adults living with Type 2 diabetes was used to design a Best-Best DCE instrument. Experimental design procedures were used to reduce the number of choice-sets and balance the instrument. Following pilot testing, the DCE is being administered to n = 450 Samoan adults living with diabetes, along with associated questionnaires, and anthropometrics. Subsequently, we will also be assessing longitudinally how preferences for care change over time. Data will be analyzed using progressive mixed Rank Order Logit models. The results will identify which diabetes care attributes are important to patients (p < 0.05), examine associations between participant characteristics and preference, illuminate the trade-offs participants are willing to make, and the probability of uptake, and WTP for specific attributes and levels. The results from this study will provide integral data useful for designing and adapting efficacious diabetes intervention and treatment approaches in this setting.

A vasárnapi ebédtől a szavazóurnáig

Political socialisation is the process of forming an individual’s political identity, in the course of which the individual’s attitude to politics and political worldview is formed. Political socialisation takes place in different spheres, of which the family and parents are of particular importance. Previous research in Hungary has confirmed that the family is an “incubator” of citizenship. However, there is little data available in Hungary that would allow for a more precise understanding of the transmission of political attitudes. This study investigates political homophily within the family (between parent and child) and the effects of parental political characteristics on the individual in Hungary. Our data are drawn from a nationally representative telephone survey of 2000 respondents sampled in 2023. The results show that in nearly two-thirds of Hungarian families, family members held the same political views during the respondent’s childhood, with the highest proportions of homophily indicators, fathers’ and respondents’ voting activity, and mothers’ and respondents’ conservative-liberal attitudes. The effect of parental characteristics was tested using structural equation modelling (SEM). Parents’ political interests and ideological positions had a strong direct effect on the same child characteristics, but the individual’s political participation and party preference were only indirectly influenced by parents. The success of attitudinal transmission was strongly enhanced if the parents were themselves, homophiles, along with the trait in question. Our results point to the important role of the family as a primary agent in political socialisation and suggest new research directions.

PROGRAM OF ALL INCLUSIVE CARE FOR THE ELDERLY ORGANIZATIONS FLIP THE SCRIPT IN RESPONSE TO COVID-19

Abstract The Program of All-Inclusive Care for the Elderly (PACE) is a unique care delivery model providing comprehensive, community-based, person-centered services to older adults. The COVID-19 pandemic posed unprecedented challenges for PACE organizations to continue providing services while mitigating infection risk, and they were agile and creative in their response. This study leveraged two national surveys and six interviews with PACE directors to examine how PACE organizations met these challenges. The response rate was 71.2% for the first survey and 67.8% for the second. Results revealed a rapid transition of the PACE model from primarily center-based to home-based care. To aid this transition, PACE organizations redeployed staff, repurposed day centers, and leveraged technology, among other strategies. Most PACE organizations plan to continue delivering more services in the home, consistent with participant preferences. The findings from this study indicate that PACE organizations continued to keep participants at the forefront as they transitioned to a home-based model. These findings highlight PACE organizations’ ability to empower nursing-home-eligible older adults to remain living in their preferred residential setting and could inform lasting changes in PACE service delivery.

CO-DESIGNING A GREEN ACTIVITY PRESCRIPTION PROGRAM WITH HISPANIC/LATINO PERSONS LIVING WITH MEMORY CHALLENGES

Abstract Nature activities can improve well-being and may modify risk factors for cognitive decline. There is a gap between nature activities offered within a person’s community and their ability to participate in them, including Hispanic/Latino persons living with memory challenges (MCI and mild dementia) in urban lower-resourced areas. An occupational therapist can bridge this gap by tailoring nature activities available in a person’s home, neighborhood, and community to their interests and needs. Utilizing a participatory approach, we sought to co-design a 12-week Green Activity Prescription (GAP-H) with Hispanic/Latino individuals living with memory challenges and their care partners. Participants were recruited via convenience and snowball sampling in the Bronx, NY with outdoor activity professionals (n=7), Hispanic/Latino persons living with memory challenges and care partners (n=5), and interdisciplinary healthcare providers/dementia experts (n=7). Co-design occurred iteratively with 5 focus groups and 2 individual interviews lasting 30-90 minutes and focused on intervention and research design. Sessions were recorded and transcribed. Utilizing directed content analysis data was coded using a priori codes intervention design and research design. Participant preferences for intervention design were captured by subcodes session duration (30-90 minutes), frequency (4-8 sessions), and delivery modes (in-person and phone). Participants’ preferred nature activities included group exercise and outdoor crafts [crocheting], outcomes of well-being, social participation, decreased loneliness, and stewardship were identified. Preferred language for recruitment materials were memory challenges, Hispanic/Latino, and well-being. Referral pathways were identified including community-based organizations and primary care. Findings can inform the co-design process of other interventions for this population.

PARTICIPANTS’ PERSPECTIVES ON RECEIVING RESULTS USING FOUND POETRY: A MIXED-METHODS STUDY

Abstract Few researchers share study results with participants, often citing a lack of knowledge regarding how to do so. This study explored the dissemination preferences of study participants receiving results in the form of found poetry, developed from dyadic interviews with sexual and gender minority (SGM) and non-SGM couples’ regarding their experiences with cancer. Participants (N=24) completed demographic and health questionnaires, a pre-posttraumatic growth-inventory-expanded (PTGI-X), and were randomized to receive the found poem as text, text and audio, audio, or video formats. Participants completed a post-PTGI-X, reported dissemination preferences, and emotions experienced. Open-ended responses demonstrated that using found poetry to disseminate results communicated that participant experiences were understood, fostered introspection, and renewed appreciation for their partner. Only SGM participants (n=3) reported preferring a format other than the one to which they were randomized. The text-only and combined text and audio formats evoked the greatest number of emotions (n=13 each) followed by video (n=4), and audio-only (n=3). Across randomization groups, interest (n=11) was most frequently reported, followed by sadness (n=8), and joy (n=6). Quantitatively, there were no significant changes in participants’ PTG—a small sample size may have reduced statistical power—which might be seen as a failure. However, the open-ended responses indicate that innovative approaches to dissemination are acceptable and multiple options may increase accessibility. Only SGM participants preferred an alternate format, potentially reflecting a natural inclination to question the status quo. Including minority perspectives (positive/negative) illuminates the need to offer study participants choices in how and when they receive findings.