A Prospective Cohort Study of Medical Decision-Making Roles and Their Associations with Patient Characteristics and Patient-Reported Outcomes among Patients with Heart Failure.

OBJECTIVE: Among patients with heart failure (HF), we examined 1) the evolution of patient involvement in decision making over 2 y, 2) the association of patient characteristics with decision-making roles, and 3) the association of decision-making roles with distress, spiritual well-being, and quality of physician communication. METHODS: We administered the survey every 4 mo over 24 mo to patients with New York Heart Association class 3/4 symptoms recruited from inpatient clinics. The decision-making roles were categorized as no patient involvement, physician/family-led, joint (with family and/or physicians), patient-led, or patient-alone decision making. The associations between patient characteristics and decision-making roles were assessed using a mixed-effects ordered logistic regression, whereas those between patient outcomes and decision-making roles were investigated using mixed-effects linear regressions. RESULTS: Of the 557 patients invited, 251 participated in the study. The most common roles in decision making at baseline assessment were "no involvement" (27.53%) and "patient-alone decision making" (25.10%). The proportions of different decision-making roles did not change over 2 y (P = 0.37). Older age (odds ratio [OR] = 0.97; P = 0.003) and being married (OR = 0.63; P = 0.035) were associated with lower involvement in decision making. Chinese ethnicity (OR = 1.91; P = 0.003), higher education (OR = 1.87; P = 0.003), awareness of terminal condition (OR = 2.00; P < 0.001), and adequate self-care confidence (OR = 1.74; P < 0.001) were associated with greater involvement. Compared with no patient involvement, joint (ß = -0.58; P = 0.026) and patient-led (ß = -0.59; P = 0.014) decision making were associated with lower distress, while family/physician-led (ß = 4.37; P = 0.001), joint (ß = 3.86; P < 0.001), patient-led (ß = 3.46; P < 0.001), and patient-alone (ß = 3.99; P < 0.001) decision making were associated with better spiritual well-being. CONCLUSION: A substantial proportion of patients was not involved in decision making. Patients should be encouraged to participate in decision making since it is associated with lower distress and better spiritual well-being. HIGHLIGHTS: The level of involvement in medical decision making did not change over time among patients with heart failure. A substantial proportion of patients were not involved in decision making throughout the 24-mo study period.Patients' involvement in decision making varied by age, ethnicity, education level, marital status, awareness of the terminal condition, and confidence in self-care.Compared with no patient involvement in decision making, joint and patient-led decision making were associated with lower distress, and any level of patient involvement in decision making was associated with better spiritual well-being.

Stroke survivors' preferences for post-stroke self-management programs: A discrete choice experiment.

BACKGROUND AND PURPOSE: Self-management programs enhance survival in stroke patients. However, they require patient-centered designs to be effective. The aim of this study was therefore to investigate the type of post-stroke self-management programs that appeal to stroke survivors, and to estimate their willingness to participate in such programs. METHODS: A Discrete Choice Experiment was administered to patients who had either a transient ischemic attack (TIA) or stroke within the past 3 years and were cognitively intact (i.e., stroke survivors). Stroke survivors were presented with eight choice tasks and asked to choose between 'No Program' and two hypothetical post-stroke management programs that varied by six attributes: Topics covered by the program; schedule of the program; frequency and duration of the sessions; number of participants; out-of-pocket registration fee for the whole program; and rewards for completing the program. RESULTS: The analysis involved 146 stroke survivors. Based on the mixed logit model, the predicted willingness to participate ranged from 53% to 76%. The most popular characteristics in a program were topics on health education and risk management, being scheduled during weekends as four sessions that are each 2 hours long and involve four participants, a registration fee of SGD50 (∼USD36), and SGD500 (∼USD359) reward for program completion. CONCLUSIONS: Interest in post-stroke self-management programs was high, with at least half of the sample showing interest in participating in these programs. Program features such as focusing on health education and risk management, charging a low registration fee, and offering incentives helped to increase the demand.

Preferences for a non-invasive prenatal test as first-line screening for Down Syndrome: A discrete choice experiment.

OBJECTIVE: To investigate preferences of pregnant women for the characteristics of prenatal testing, and to quantify their willingness-to-pay (WTP) for non-invasive prenatal testing (NIPT) as first-line screening for Down Syndrome. METHOD: A cross-sectional discrete choice experiment survey including five testing attributes was administered to 192 pregnant women (≤14 weeks' gestation) who were aged ≥21 years in Singapore. We calculated marginal WTP for improvements in testing characteristics and NIPT. RESULTS: We identified two groups of women with distinct preferences for prenatal testing. Women aged ≥35 years, with at least a university education, and with intention to terminate pregnancy of an affected fetus were more likely to be in the group with higher WTP for improvements in test characteristics. While participants valued increased detection rate and lower screen positive rate associated with NIPT, they also valued no risk of test failure and ability to test for birth defects using standard testing. The participants, on average, were not willing to pay for NIPT over the standard testing as a first-line screening test. CONCLUSIONS: As a first-line screening, NIPT was not preferred over standard testing. The prenatal consultations should focus on each testing characteristic equally as our findings show diverse preferences for testing characteristics.

Understanding patient preferences in anti-VEGF treatment options for age-related macular degeneration.

PURPOSE: (1) To investigate the relative importance of convenience (consultation frequency and injection frequency) against treatment outcomes (visual and anatomical outcomes) and out-of-pocket medical costs via a discrete choice experiment (DCE), and (2) to investigate how patient characteristics affect patient treatment preferences. METHODS: Eligibility criteria were: (1) receiving a neovascular age-related macular degeneration (nAMD) diagnosis; (2) receiving anti-VEGF treatment; (3) being ≥21 years old, and (4) being able to speak and understand English/Mandarin. Patients were presented with eight choice tasks and asked to choose between their current treatment and two hypothetical treatments that varied by six attributes: number of clinic visits in a year, number of injections in a year, vision quality, control of swelling in retina, drug labelling and out-of-pocket cost. RESULTS: This analysis involved 180 patients. Based on latent class logistic regressions, vision quality was the most important attribute (34%) followed by cost (24%). The frequency of total clinic visits (15%) was the third most-important attribute, closely followed by labelling (12%) and control of retina swelling (11%). Injection frequency was the least important attribute (4%). CONCLUSIONS: Vision quality was the most important attribute followed by the out-of-pocket costs. Given the same outcomes, patients preferred treatment regimens which require fewer total clinic visits. In comparison, injection frequency alone did not influence patient preferences. With increasing treatment options for nAMD, understanding patients' preferences can help clinicians in selecting agents and treatment regimen most preferred for each patient, which may lead to improved long-term adherence and outcomes.

Patient Medication Preferences for Managing Dry Eye Disease: The Importance of Medication Side Effects.

OBJECTIVES: The side effects of dry eye medications can lead to medication non-adherence and, eventually, to poor outcomes. This study aimed to quantify to what extent the side effects of dry eye disease (DED) medications (burning/stinging sensation and blurring) are important to patients compared to medication benefits or costs. METHODS: Patients diagnosed with DED were recruited at a referral eye center in Singapore (n = 139). This study utilized a Discrete Choice Experiment where patients were presented with 10 choice tasks where they were asked to choose between their current medication (or no medication), and two hypothetical medications that varied based on five attributes: duration of burning/stinging, duration of blurring, time to medication effectiveness, medication frequency, and out-of-pocket cost. The main outcomes were relative attribute importance and predicted uptake. RESULTS: Latent class logistic regressions found two groups with distinct preferences. For both classes, duration of burning/stinging (Class 1 = 23%, Class 2 = 29%) and cost (Class 1 = 24%, Class 2 = 27%) were the most important attributes while duration of blurring (Class 1 = 15%, Class 2 = 9%) was the least important. The predicted uptake of a medication increased 18 percentage-points when burning/stinging duration decreased from 2 h to a few minutes. The predicted uptake for new medications was lowest for those on medication with well-controlled symptoms and highest for those who were not on medication and could not control their symptoms effectively. CONCLUSION: This study showed that duration of burning/stinging was an important factor when choosing medications. Incorporating patient preferences in medication decisions can potentially improve patient acceptance of a treatment regimen.

Awareness and Utilization of Palliative Care Among Advanced Cancer Patients in Asia.

CONTEXT: To date, little is known about palliative care (PC) awareness and utilization in low- and middle-income countries (LMICs) in Asia. OBJECTIVES: This study aimed to investigate PC awareness and its predictors, utilization of PC services, and perceived utilization barriers among advanced cancer patients from select hospitals in Asian LMICs. METHODS: This cross-sectional study analyzed data of 759 advanced cancer patients at major hospitals of four LMICs in Asia (i.e., Bangladesh, Philippines, Sri Lanka, and Vietnam). The predictors of PC awareness were investigated using multivariable logistic regression. RESULTS: Overall PC awareness was 30.8% (n = 234). Patients with higher education (OR = 1.0; CI = 1.0,1.1), from upper-middle or high-income households (compared to low-income) (OR = 2.0; CI = 1.2,3.3), awareness of disease severity (OR = 1.5; CI = 1.0,2.2), and higher pain severity (OR = 1.1; CI = 1.0,1.2) had higher odds of PC awareness. Compared to patients who perceived themselves as being very informed about disease trajectory, those who were unsure (OR = 0.5; CI = 0.3,0.8) or uninformed (OR = 0.5; CI = 0.3,0.9) had lower odds of PC awareness. The PC utilization rate was 35.0% (n = 82) among those with PC awareness, and 47.8% (n = 66) among patients recommended PC by a healthcare professional (n = 138). The most cited PC utilization barriers were currently receiving anti-cancer treatment (n = 43; 33.9%), and having insufficient information about PC (n = 41; 32.3%). CONCLUSION: The low awareness of PC services in these major hospitals in Asian LMICs highlights that more effort may be required to promote the awareness of PC in this region. The efforts should especially focus on those from disadvantaged groups to reduce the gap in PC awareness.

A Systematic Review of Discrete Choice Experiments and Conjoint Analysis on Genetic Testing.

BACKGROUND: Although genetic testing has the potential to offer promising medical benefits, concerns regarding its potential negative impacts may influence its acceptance. Users and providers need to weigh the benefits, costs and potential harms before deciding whether to take up or recommend genetic testing. Attribute-based stated-preference methods, such as discrete choice experiment (DCE) or conjoint analysis, can help to quantify how individuals value different features of genetic testing. OBJECTIVES: The aim of this paper was to conduct a systematic review of DCE and conjoint analysis studies on genetic testing, including genomic tests. METHODS: A systematic search was conducted in seven databases: Web of Science, CINAHL Plus with Full Text (EBSCO), PsycINFO, PubMed, Embase, The Cochrane Library and SCOPUS. The search was conducted in February 2021 and was limited to English peer-reviewed articles published until the search date. The search keywords included relevant keywords such as 'genetic testing', 'genomic testing', 'pharmacogenetic testing', 'discrete choice experiment' and 'conjoint analysis'. Narrative synthesis of the studies was conducted on survey population, testing type, recruitment and data collection, survey development, questionnaire content, survey validity, analysis, outcomes and other design features. RESULTS: Of the 292 articles retrieved, 38 full-text articles were included in this review. Nearly two-thirds of the studies were published since 2015 and all were conducted in high-income countries. Survey samples included patients, parents, general population and healthcare providers. The articles assessed preferences for pharmacogenetic testing (28.9%), predictive testing and diagnostic testing (18.4%), while only one (2.6%) study investigated preferences for carrier testing. The most common sampling method was convenience sampling (57.9%) and the majority recruited participants via web-enabled surveys (60.5%). Review of literature (84.6%), discussions with healthcare professionals (71.8%) and cognitive interviews (53.8%) were commonly used for attribute identification. A survey validity test was included in only one-quarter of the studies (28.2%). Cost attributes were the most studied attribute type (76.9%), followed by risk attributes (61.5%). Among those that reported relative attribute importance, attributes related to benefits were the most commonly reported attributes with the highest relative attribute importance. Preference heterogeneity was investigated in most studies by modelling, such as via mixed logit analysis (82.1%) and/or by using interaction effects with respondent characteristics (74.4%). Willingness to pay was the most commonly estimated outcome and was presented in about two-thirds (n = 25; 64.1%) of the studies. CONCLUSION: With the continuous advancement in genetic technology resulting in expanding options for genetic testing and improvements in delivery methods, the application of genetic testing in clinical care is expected to rise. DCEs and conjoint analysis remain robust and useful methods to elicit preferences of potential stakeholders. This review serves as a summary for future researchers when designing similar studies.

Associations Between Prognostic Awareness, Acceptance of Illness, and Psychological and Spiritual Well-being Among Patients With Heart Failure.

BACKGROUND: This study aimed to (1) investigate the association of prognostic awareness with psychological (distress level and emotional well-being) and spiritual well-being among patients with heart failure, and (2) assess the main and moderating effects of illness acceptance on the relationship between prognostic awareness and psychological and spiritual well-being. METHODS AND RESULTS: This study used baseline data of a Singapore cohort of patients with heart failure (N = 245) who had New York Heart Association class 3 or 4 symptoms. Patients reported their awareness of prognosis and extent of illness acceptance. Multivariable linear regressions were used to investigate the associations. Prognostic awareness was not significantly associated with psychological and spiritual well-being. Illness acceptance was associated with lower levels of distress (ß [SE] = -0.9 [0.2], P < .001), higher emotional well-being (ß [SE] = 2.2 [0.4], P < .001), and higher spiritual well-being (ß [SE] = 5.4 [0.7], P < .001). Illness acceptance did not moderate the associations of prognostic awareness with psychological and spiritual well-being. CONCLUSIONS: This study suggests that illness acceptance could be a key factor in improving patient well-being. Illness acceptance should be regularly assessed and interventions to enhance illness acceptance should be considered for those with poor acceptance.

The prevalence of perceived stigma and self-blame and their associations with depression, emotional well-being and social well-being among advanced cancer patients: evidence from the APPROACH cross-sectional study in Vietnam.

BACKGROUND: There is very limited evidence on the existence of cancer-related perceived stigma and self-blame among patients with advanced cancer in Asia, and how they are associated with psychosocial outcomes. This study aimed to address the gap in the current literature by (1) assessing perceived stigma, behavioural self-blame and characterological self-blame among Vietnamese patients with advanced cancer, and (2) investigating the associations of perceived stigma and self-blame (behavioural and characterological) with depression, emotional well-being and social well-being. METHODS: This cross-sectional study involved 200 Vietnamese patients with stage IV solid cancer. Depression was measured using the Center for Epidemiologic Studies Depression (CES-D) Scale. Emotional well-being and social well-being were measured with the relevant domains of the Functional Assessment of Cancer Therapy-General (FACT-G) scale. Perceived stigma was assessed using the sense of stigma subscale of Kissane's Shame and Stigma Scale. Behavioural self-blame and characterological self-blame were measured by the patients' answers to the questions on whether their cancer was due to patient's behaviour or character. Multivariable linear regressions were used to investigate the associations while controlling for patient characteristics. RESULTS: Approximately three-fourths (79.0%, n = 158) of the participants reported perceived stigma with an average score of 20.5 ± 18.0 (out of 100). More than half of the participants reported behavioural self-blame (56.3%, n = 112) or characterological self-blame (62.3%, n = 124). Higher perceived stigma was associated with lower emotional well-being (ß = -0.0; p = 0.024). Behavioural self-blame was not significantly associated with depressive symptoms, emotional well-being or social well-being. Patients who reported characterological self-blame reported greater depressive symptoms (ß = 3.0; p = 0.020) and lower emotional well-being (ß = -1.6; p = 0.038). CONCLUSION: Perceived stigma and self-blame were common amongst Vietnamese advanced cancer patients. Perceived stigma was associated with lower emotional well-being while characterological self-blame were associated with greater depressive symptoms and lower emotional well-being. Interventions should address perceived stigma and self-blame among this population.

The Effect of Social Norm-based Intervention with Observable Behaviour on Physical Activity among Adolescents: A Randomized Controlled Trial.

BACKGROUND: The rising prevalence of childhood obesity in developing and developed countries poses a major public health challenge to policy makers and an effective strategy to promote physical activity among adolescents is warranted. This study aimed to evaluate the effectiveness of providing descriptive norms messages with personal identification in promoting physical activity among adolescents by measuring step counts via a randomized controlled trial (NCT03081013). METHODS: A total of 311 participants aged 13-16 were randomized into two study arms (Onymous and Anonymous Arms). Each arm consisted of 13 groups of 12 participants. During the trial, participants received weekly short message service (SMS) about their past week's physical activity performance. Participants in the Anonymous Arm received information about step counts of group members ranked from highest to lowest. Participants in the Onymous Arm received the same information with the group members' full names. Participants' quality of life, depression, physical activity social support, self-efficacy and enjoyment before and after the intervention were also evaluated. This study adheres to the CONSORT guidelines. RESULTS: The number of steps was not higher when descriptive norm message was onymous compared to when it was anonymous. Scores in quality of life, depression, social support, self-efficacy, and enjoyment of physical activity were not significantly different between both arms (p > 0.05). CONCLUSIONS: Our findings indicated that the effect of providing descriptive norms messages containing personal identification on physical activity promotion was not evident in the main analysis. Future studies may consider using a more relevant reference group to use social norms as a tool to increase physical activity among adolescents. TRIAL REGISTRATION: ClinicalTrials.gov - NCT03081013. Registered 15 Mar 2017-Retrospectively registered, https://clinicaltrials.gov/ct2/show/NCT03081013.

Association of anemia and mineral and bone disorder with health-related quality of life in Asian pre-dialysis patients.

BACKGROUND: Patients with chronic kidney disease (CKD) have poor health-related quality of life (HRQoL). The association of CKD-related complications such as anemia and mineral and bone disorders (MBD) with HRQoL in pre-dialysis patients is not well-studied. As such, this study aimed to determine the association of anemia and MBD with HRQoL in pre-dialysis patients. METHODS: This was a cross-sectional study involving 311 adult pre-dialysis patients with stage 3-5 CKD from an acute-care hospital in Singapore. Patients' HRQoL were assessed using Kidney Disease Quality of Life Short Form (KDQOL-SF™) and EuroQol 5 Dimensions-3 levels (EQ5D-3L). HRQoL between patients with and without anemia or MBD were compared by separate hierarchical multiple linear regression analyses using various HRQoL scales as dependent variables, adjusted for sociodemographic, clinical and psychosocial variables. RESULTS: After adjusting for MBD, anemia was associated with lower HRQoL scores on work status (WS), physical functioning (PF) and role physical [ß (SE): -10.9 (4.18), p = 0.010; -3.0 (1.28), p = 0.018; and -4.2 (1.40), p = 0.003, respectively]. However, significance was lost after adjustments for sociodemographic variables. Patients with MBD had poorer HRQoL with respect to burden of kidney disease, WS, PF and general health [(ß (SE): -7.9 (3.88), p = 0.042; -9.5 (3.99), p = 0.018; -3.0 (1.22) p = 0.014; -3.6 (1.48), p = 0.015, respectively]. Although these remained significant after adjusting for sociodemographic variables, significance was lost after adjusting for clinical variables, particularly pill burden. This is of clinical importance due to the high pill burden of CKD patients, especially from medications for the management of multiple comorbidities such as cardiovascular and mineral and bone diseases. CONCLUSIONS: Neither anemia nor MBD was associated with HRQoL in our pre-dialysis patients. Instead, higher total daily pill burden was associated with worse HRQoL. Medication reconciliation should therefore be routinely performed by clinicians and pharmacists to reduce total daily pill burden where possible.