Type 2 diabetes is linked to higher physiologic markers of effort during exercise.

Background: People with type 2 diabetes (T2D) have lower rates of physical activity (PA) than the general population. This is significant because insufficient PA is linked to cardiovascular morbidity and mortality, particularly in individuals with T2D. Previously, we identified a novel barrier to physical activity: greater perceived effort during exercise in women. Specifically, women with T2D experienced exercise at low-intensity as greater effort than women without T2D at the same low-intensity - based on self-report and objective lactate measurements. A gap in the literature is whether T2D confers greater exercise effort in both sexes and across a range of work rates. Objectives: Our overarching objective was to address these gaps regarding the influence of T2D and relative work intensity on exercise effort. We hypothesized that T2D status would confer greater effort during exercise across a range of work rates below the aerobic threshold. Methods: This cross-sectional study enrolled males and post-menopausal females aged 50-75 years. Measures of exercise effort included: 1) heart rate, 2) lactate and 3) self-report of Rating of Perceived Exertion (RPE); each assessment was during the final minute of a 5-minute bout of treadmill exercise. Treadmill exercise was performed at 3 work rates: 1.5 mph, 2.0 mph, and 2.5 mph, respectively. To determine factors influencing effort, separate linear mixed effect models assessed the influence of T2D on each outcome of exercise effort, controlling for work rate intensity relative to peak oxygen consumption (%VO2peak). Models were adjusted for any significant demographic associations between effort and age (years), sex (male/female), baseline physical activity, or average blood glucose levels. Results: We enrolled n=19 people with T2D (47.4% female) and n=18 people (55.6% female) with no T2D. In the models adjusted for %VO2peak, T2D status was significantly associated with higher heart rate (p = 0.02) and lactate (p = 0.01), without a significant association with RPE (p = 0.58). Discussions: Across a range of low-to-moderate intensity work rates in older, sedentary males and females, a diagnosis of T2D conferred higher objective markers of effort but did not affect RPE. Greater objective effort cannot be fully attributed to impaired fitness, as it persisted despite adjustment for %VO2peak. In order to promote regular exercise and reduce cardiovascular risk for people with T2D, 1) further efforts to understand the mechanistic targets that influence physiologic exercise effort should be sought, and 2) comparison of the effort and tolerability of alternative exercise training prescriptions is warranted.

Comparison of the Skindex-Teen and the Skindex-29 quality of life survey instruments in a predominantly American Indian adolescent population.

BACKGROUND/OBJECTIVES: The Skindex-29 and Skindex-Teen assess dermatology-related quality of life among adults and adolescents, respectively. This study directly compared the same adolescents' responses to the Skindex-29 relative to Skindex-Teen in a predominantly American Indian and/or Alaska Native population. This population is underrepresented in medical research. Although skin-related quality-of-life issues are widespread, American Indian and/or Alaska Native adolescents are not well-represented in related studies. METHODS: Data were collected in-person by self-report survey at two regional powwows in Denver, Colorado in 2021 and 2022. Respondents completed the full Skindex-29 and Skindex-Teen (40 unique items total). RESULTS: Eighty-six adolescents, 12-17 years old, completed the survey. The majority (70.9%, 61/86) of respondents self-identified as American Indian and/or Alaska Native. Analyses were conducted with all respondent survey data. Nearly two-thirds (64.0%, 55/86) of our respondents had a Skindex-29 score that revealed their quality of life was impaired at least mildly by skin disease. The Skindex-29 and Skindex-Teen demonstrated good reliability; there was substantial concordance between responses to the two measures (r values ranged from 0.88 to 0.97 for similar subscales). Compared to younger adolescents (aged 12-14), older adolescents (aged 15-17) reported worse dermatology-related quality of life and emotional toll based on higher Skindex-29 total, Skindex-Teen total, Skindex-29 Emotional subscale, and Skindex-Teen Psychosocial Functioning subscale scores. CONCLUSIONS: American Indian and/or Alaska Native adolescents suffer from skin-related quality-of-life issues. The Skindex-Teen and Skindex-29 generated similar information regarding quality of life in young patients with skin disease. While the Skindex-Teen may be slightly more relevant to adolescents, these surveys were highly concordant. Both the Skindex-Teen and Skindex-29 exhibited frequent "never" responses to questions about impact of skin conditions on relationships with others and tendencies to stay home. Thus, careful attention should be paid to such questions to ensure their relevance to adolescents.

Use of a Person-Centered Narrative Intervention in an Outpatient Palliative Care Setting: A Feasibility Study.

Person-centered narrative interventions offer potential solutions to facilitate a connection between the person receiving care and the person delivering the care, to improve quality of care, and positively impact a patient's biopsychosocial well-being. This single-arm feasibility study investigates patient-reported outcomes and barriers/facilitators to the implementation of an all-virtually delivered person-centered narrative intervention into the person's electronic health record. Overall, electronic data collection for the patient-reported outcomes was feasible. All 15 participants felt participating in the study was "easy" and "enjoyable," and "not a burden." The facilitators of implementation included: "helpful to the clinician," "appreciated looking at me as whole person," "be seen and heard," "had a connection and trust," and "felt comfortable and relaxing." The barriers to implementation included: "completing all the paperwork," "being rushed for time to complete the PCNI," and some "emotion" during collection of narrative. The use of person-centered narrative interventions is a way to deploy dedicated tools to shift dehumanized healthcare delivery to a more humanized person-centered care that treats people as experts in their own life narratives by incorporating their beliefs, values, and preferences into their plan of care.

Pilot randomized trial of an acceptance-based telehealth intervention for women with ovarian cancer and PARP inhibitor-related fatigue.

OBJECTIVE: Poly(ADP-ribose) polymerase inhibitors (PARPi) have dramatically changed treatment for advanced ovarian cancer, but nearly half of patients experience significant fatigue. We conducted a two-site pilot randomized trial to evaluate the feasibility, acceptability, and preliminary efficacy of a brief, acceptance-based telehealth intervention (REVITALIZE) designed to reduce fatigue interference in patients on PARPi. METHODS: From June 2021 to April 2022, 44 participants were randomized 1:1 to REVITALIZE (6 weekly one-on-one sessions+booster) or enhanced usual care. Feasibility was defined as: ≥50% approach-to-consent among potentially eligible patients and ≥70% completion of 12-week follow-up assessment; acceptance was <20% participants reporting burden and <20% study withdrawal. Fatigue, anxiety, depression, and quality of life were assessed at baseline, 4-, 8- and 12-weeks. RESULTS: Among 44 participants (mean age = 62.5 years, 81.8% stage III/IV disease), the study was feasible (56.4% approach-to-consent ratio, 86.3% completion of 12-week assessment) and acceptable (0% reporting burden, 11.3% study withdrawal). At 12-week follow-up, REVITALIZE significantly reduced fatigue interference (Cohen's d = 0.94, p = .008) and fatigue severity (d = 0.54, p = .049), and improved fatigue levels (d = 0.62, p = .04) relative to enhanced usual care. REVITALIZE also showed promise for improved fatigue self-efficacy, fatigue catastrophizing, anxiety, depression, and quality of life (ds = 0.60-0.86, p ≥ .05). Compared with enhanced usual care, REVITALIZE participants had fewer PARPi dose reductions (6.7% vs. 19.0%), and dose delays (6.7% vs. 23.8%). CONCLUSIONS: Among fatigued adults with ovarian cancer on PARPi, a brief, acceptance-based telehealth intervention was feasible, acceptable, and demonstrated preliminary efficacy in improving fatigue interference, severity, and levels. REVITALIZE is a novel, scalable telehealth intervention worthy of further investigation.

A Systematic Review and Meta-Analysis of Interventions to Promote Adjuvant Endocrine Therapy Adherence Among Breast Cancer Survivors.

PURPOSE: Adjuvant endocrine therapy (AET) adherence among breast cancer survivors is often suboptimal, leading to higher cancer recurrence and mortality. Intervention studies to promote AET adherence have burgeoned, more than doubling in number since this literature was last reviewed. The current aim is to provide an up-to-date systematic review and meta-analysis of interventions to enhance AET adherence and to identify strengths and limitations of existing interventions to inform future research and clinical care. METHODS: Systematic searches were conducted in three electronic databases. Studies were included in the systematic review if they examined an intervention for promoting AET adherence among breast cancer survivors. Studies were further included in the meta-analyses if they examined a measure of AET adherence (defined as compliance or persistence beyond initiation) and reported (or provided upon request) sufficient information to calculate an effect size. RESULTS: Of 5,045 unique records, 33 unique studies representing 375,951 women met inclusion criteria for the systematic review. Interventions that educated patients about how to manage side effects generally failed to improve AET adherence, whereas policy changes that lowered AET costs consistently improved adherence. Medication reminders, communication, and psychological/coping strategies showed varied efficacy. Of the 33 studies that met the inclusion criteria for the systematic review, 25 studies representing 367,873 women met inclusion criteria for the meta-analysis. The meta-analysis showed statistically significant effects of the adherence interventions overall relative to study-specified control conditions (number of studies [k] = 25; odds ratio, 1.412; 95% CI, 1.183 to 1.682; P = .0001). Subgroup analyses showed that there were no statistically significant differences in effect sizes by study design (randomized controlled trial v other), publication year, directionality of the intervention (unidirectional v bidirectional contact), or intervention type. CONCLUSION: To our knowledge, this is the first known meta-analysis to demonstrate a significant effect for interventions to promote AET adherence. The systematic review revealed that lowering medication costs and a subgroup of psychosocial and reminder interventions showed the most promise, informing future research, policy, and clinical directions.

Integration of Person-Centered Narratives Into the Electronic Health Record.

BACKGROUND: Care delivery that is not person-centered has been called discordant care . There has been a shift to incorporate more of a person's narrative into their individual healthcare treatment plan to reduce discordant care. Aligning with this shift in healthcare delivery, we developed a person-centered narrative intervention (PCNI) to address existing gaps in delivery of person-centered care. OBJECTIVES: This study aimed to evaluate the feasibility of conducting a randomized study and describe the outcomes of PCNI to usual care on the following person (patient)-reported outcomes: perceptions of the quality of communication with their nurses and their psychosocial and existential well-being. METHODS: This study's design was an Obesity-Related Behavioral Intervention Trials model Phase II proof-of-concept randomized study. The participants were people admitted to an acute care hospital diagnosed with heart failure and/or end-stage renal disease. RESULTS: Despite COVID-19 challenges, the PCNI was feasible in an acute care setting; it showed a moderate positive difference between conditions in the person's perception of their quality of communication and a small positive difference in their perception of feeling heard and understood. For our secondary outcomes of anxiety, depression, and psychosocial illness effect, there were small or no effects in the acute care setting. DISCUSSION: Using a person-centered narrative, such as the PCNI, can help inform delivery of care that incorporates a person's (patient's) beliefs, values, and preferences into their healthcare. This study used a pragmatic approach to evaluate the PCNI in real time in an acute care setting to assess patient-reported outcomes. These positive results in a small sample indicate the need for continued testing of the PCNI. These promising effects require further testing in a Phase III efficacy study within a larger randomized controlled clinical trial.

Retrospective chart review of patient socioeconomic status and language preference associated with live video telehealth in a pediatric dermatology practice.

Pediatric teledermatology rapidly expanded with the COVID-19 pandemic, and the impacts of this expansion on patients' access to care have not yet been entirely defined. In this retrospective study of 3027 patients in an academic pediatric dermatology practice, patients who identified as having a primary language other than English were less likely to access pediatric dermatology care during the COVID lockdown. This study did not identify a significant or meaningful difference in age, geography, socioeconomic status, ethnicity, or race between patients who were offered pediatric dermatology care that was either in-person or via synchronous telehealth. These findings are overall reassuring that there were not major disparities in telehealth utilization during the COVID shelter-in-place mandate, although highlight the need for institutions to ensure systems are in place to enhance telehealth access for patients with non-English primary language.

Patterns of Change in Parental Health Literacy in Relation to Children's Oral Health.

BACKGROUND: Although health literacy (HL) skills may change over time, most research treats HL as a constant, using baseline HL to predict other health-related constructs. Few studies have explored change in HL over time. OBJECTIVE: We examined person-level differences in HL trajectories. We identified subgroups (latent classes) based on longitudinal assessments of HL and examined the association of class membership with demographic and oral health variables. METHODS: We used four measurement waves of parental HL data, reflecting the risk of limited HL, collected as part of an intervention to reduce dental decay in American Indian children (N = 579 parent-child dyads at baseline). Repeated measures latent class analysis (RMLCA) models were estimated to identify subgroups of HL trajectories over time. We examined class membership in association with baseline demographics and with 36-month assessments of parental oral health knowledge, beliefs, and behaviors as well as pediatric oral health. KEY RESULTS: A four-class model best fit the data. The largest class (high HL; 49.7% of the sample) was characterized by high levels of HL at all waves. A second class (improving HL; 17.7%) improved over all waves. The remaining two classes were characterized as moderate HL (20%) and low HL (12.6%) and maintained relatively stable HL levels over time. Higher educational attainment was associated with membership in the high HL and improving HL classes. Older age among this young-adult sample and higher income also were associated with high HL class membership. Parents in the high HL and improving HL classes exhibited more favorable performance on measures of oral health knowledge, beliefs, and behavioral adherence than did those in the other classes. Class membership was not associated with pediatric oral health. CONCLUSIONS: RMLCA demonstrated person-level variability in HL trajectories. Longitudinal patterns were associated with baseline demographics and prospectively with parental oral health knowledge, beliefs, and behaviors, but not with pediatric oral health. [HLRP: Health Literacy Research and Practice. 2023;7(2):e89-e98.].

Longitudinal Assessment of Multimorbidity Medication Patterns among Smokers in the COPDGene Cohort.

Background and objectives: Chronic obstructive pulmonary disease (COPD) is usually comorbid with other chronic diseases. We aimed to assess the multimorbidity medication patterns and explore if the patterns are similar for phase 1 (P1) and 5-year follow-up phase 2 (P2) in the COPDGene cohort. Materials and Methods: A total of 5564 out of 10,198 smokers from the COPDGene cohort who completed 2 visits, P1 and P2 visits, with complete medication use history were included in the study. We conducted latent class analysis (LCA) among the 27 categories of chronic disease medications, excluding COPD treatments and cancer medications at P1 and P2 separately. The best number of LCA classes was determined through both statistical fit and interpretation of the patterns. Results: We found four classes of medication patterns at both phases. LCA showed that both phases shared similar characteristics in their medication patterns: LC0: low medication; LC1: hypertension (HTN) or cardiovascular disease (CVD)+high cholesterol (Hychol) medication predominant; LC2: HTN/CVD+type 2 diabetes (T2D) +Hychol medication predominant; LC3: Hychol medication predominant. Conclusions: We found similar multimorbidity medication patterns among smokers at P1 and P2 in the COPDGene cohort, which provides an understanding of how multimorbidity medication clustered and how different chronic diseases combine in smokers.

An Electronically Delivered Person-Centered Narrative Intervention for Persons Receiving Palliative Care: Protocol for a Mixed Methods Study.

BACKGROUND: In the health care setting, electronic health records (EHRs) are one of the primary modes of communication about patients, but most of this information is clinician centered. There is a need to consider the patient as a person and integrate their perspectives into their health record. Incorporating a patient's narrative into the EHR provides an opportunity to communicate patients' cultural values and beliefs to the health care team and has the potential to improve patient-clinician communication. This paper describes the protocol to evaluate the integration of an adapted person-centered narrative intervention (PCNI). This adaptation builds on our previous research centered on the implementation of PCNIs. The adaptation for this study includes an all-electronic delivery of a PCNI in an outpatient clinical setting. OBJECTIVE: This research protocol aims to evaluate the feasibility, usability, and effects of the all-electronic delivery of a PCNI in an outpatient setting on patient-reported outcomes. The first objective of this study is to identify the barriers and facilitators of an internet-based-delivered PCNI from the perspectives of persons living with serious illness and their clinicians. The second objective is to conduct acceptability, usability, and intervention fidelity testing to determine the essential requirements for the EHR integration of an internet-based-delivered PCNI. The third objective is to test the feasibility of the PCNI in an outpatient clinic setting. METHODS: Using a mixed method design, this single-arm intervention feasibility study was delivered over approximately 3 to 4 weeks. Patient participant recruitment was conducted via screening outpatient palliative care clinic schedules weekly for upcoming new palliative care patient visits and then emailing potential patient participants to notify them about the study. The PCNI was delivered via email and Zoom app. Patient-reported outcome measures were completed by patient participants at baseline, 24 to 48 hours after PCNI, and after the initial palliative care clinic visit, approximately 1 month after baseline. Inclusion criteria included having the capacity to give consent and having an upcoming initial outpatient palliative care clinic visit. RESULTS: The recruitment of participants began in April 2021. A total of 189 potential patient participants were approached via email, and 20 patient participants were enrolled, with data having been collected from May 2021 to September 2022. A total of 7 clinician participants were enrolled, with a total of 3 clinician exit interviews and 1 focus group (n=5), which was conducted in October 2022. Data analysis is expected to be completed by the end of June 2023. CONCLUSIONS: The findings from this study, combined with those from other PCNI studies conducted in acute care settings, have the potential to influence clinical practices and policies and provide innovative avenues to integrate more person-centered care delivery. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/41787.

Testing of a novel questionnaire of Household Exposure to Wood Smoke.

Household air pollution from wood smoke (WS), contributes to adverse health effects in both low- and high-income countries. However, measurement of WS exposure has been limited to expensive in-home monitoring and lengthy face-to-face interviews. This paper reports on the development and testing of a novel, self-report nine-item measure of WS exposure, called the Household Exposure to Wood Smoke (HEWS). A sample of 149 individuals using household wood stoves for heating from western states in the U.S., completed the HEWS during the winter months (November to March) of 2013 through 2016 with 30 subjects having in-home particle monitoring. Hard copy or online surveys were completed. Cronbach's alpha (α), intraclass correlations (ICC), exploratory factor analysis (EFA) and tests of associations were done to evaluate reliability and validity of the HEWS. Based on initial analysis, only 9 of the 12 items were retained and entered in the EFA. The EFA did not support a unitary scale as the 9 items demonstrated a 3-factor solution (WS exposure duration, proximity, and intensity) with Cronbach's α of 0.79, 0.91, and 0.62, respectively. ICC was 0.86 of the combined items with single items ranging from 0.46 to 0.95. WS intensity was associated with symptoms and levoglucosan levels, while WS duration was associated with stove and flume maintenance. The three-dimensional HEWS demonstrated internal consistency and test-retest reliability, structural validity, and initial criterion and construct validity.

Dermatology Access and Needs of American Indian and Alaska Native People.

OBJECTIVES: To describe skin disease prevalence, access to dermatologic care, and teledermatology interest among American Indians and Alaska Natives. METHODS: Data were collected via self-report surveys administered in person at two community powwows in Denver, Colorado in 2021 and 2022. RESULTS: Most American Indian and/or Alaska Native respondents (94.5%, n=225) reported at least one skin disease. The top three active skin diseases among adolescents were acne, scarring, and eczema. The top three among adults were dry skin, hair loss, and acne. Only 20.9% (n=47) of respondents with skin disease had seen a dermatologist. Approximately one-third of respondents (34.0%, n=81) were open to engaging with teledermatology in their home; 43.3% (n=103) were open to engaging with teledermatology in their local clinic; 42.0% (n=100) were not interested in engaging teledermatology from their home or in their local clinic. CONCLUSIONS: Skin disease is prevalent and access to dermatologic care is poor among American Indian and Alaska Native people.

A randomized controlled trial of a multi-modal palliative care intervention to promote advance care planning and psychological well-being among adults with advanced cancer: study protocol.

BACKGROUND: Up to half of adults with advanced cancer report anxiety or depression symptoms, which can cause avoidance of future planning. We present a study protocol for an innovative, remotely-delivered, acceptance-based, multi-modal palliative care intervention that addresses advance care planning (ACP) and unmet psychological needs commonly experienced by adults with metastatic cancer. METHODS: A two-armed, prospective randomized controlled trial (RCT) randomizes 240 adults with Stage IV (and select Stage III) solid tumor cancer who report moderate to high anxiety or depression symptoms to either the multi-modal intervention or usual care. The intervention comprises five weekly two-hour group sessions (plus a booster session one month later) delivered via video conferencing, with online self-paced modules and check-ins completed between the group sessions. Intervention content is based on Acceptance and Commitment Therapy (ACT), an acceptance, mindfulness, and values-based model. Participants are recruited from a network of community cancer care clinics, with group sessions led by the network's oncology clinical social workers. Participants are assessed at baseline, mid-intervention, post-intervention, and 2-month follow-up. The primary outcome is ACP completion; secondary outcomes include anxiety and depression symptoms, fear of dying, and sense of life meaning. Relationships between anxiety/depression symptoms and ACP will be evaluated cross-sectionally and longitudinally and theory-based putative mediators will be examined. DISCUSSION: Among adults with advanced cancer in community oncology settings, this RCT will provide evidence regarding the efficacy of the group ACT intervention on ACP and psychosocial outcomes as well as examine the relationship between ACP and anxiety/ depression symptoms. This trial aims to advance palliative care science and inform clinical practice. TRIAL REGISTRATION: Clinicaltrials.gov NCT04773639 on February 26, 2021.

Cancer survivors' cancellations of healthcare appointments during the COVID-19 pandemic: Associations with anxiety and depression.

OBJECTIVE: Though it is well-documented that cancer survivors experienced healthcare delays during the COVID-19 pandemic, who initiated those delays has not been examined. This longitudinal study distinguishes rates of patient-from provider-cancelled healthcare appointments at three timepoints during the pandemic, and examines psychosocial factors associated with patient-cancelled appointments. METHODS: Cancer survivors (N = 147) in the United States completed psychosocial and health behavior measures three times between May and December 2020. We examined rates of patient- and provider-cancelled healthcare appointments, including cancer screening appointments, at each timepoint and change between timepoints. Logistic regression was used to determine if anxiety symptoms, depression symptoms, and COVID-19 fears were associated with self-cancelled healthcare appointments. RESULTS: In May 2020, one third (33.79%) of participants reported one or more self-cancelled appointments within the prior 2 months and nearly half (45.89%) reported one or more provider-cancelled appointments. Rates of provider-cancelled appointments decreased to 35.71% in June/July 2020 and to 9.24% in November/December 2020 (both reflected p < 0.05 reductions compared to the previous timepoint). Rates of self-cancelled appointments, however, remained more stable (ps > 0.144). In June/July and November/December 2020, higher depression and anxiety symptoms, but not COVID-19 fears, were associated with greater likelihood of self-cancelled appointments. CONCLUSIONS: Cancer survivors cancelled their healthcare appointments at a stable rate even as provider-cancelled appointments declined. Depression and anxiety symptoms, but not COVID-19 concerns, were associated with patient cancellations. Interventions that address anxiety and depression symptoms may help to promote adherence to cancer survivorship care during the pandemic.

Randomized controlled trial of motivational interviewing for alcohol and cannabis use within a predominantly Hispanic adolescent sample.

Hispanic youth represent one of the fastest-growing minority groups. Yet, we know little about Hispanic adolescents' response to empirically-supported interventions for adolescent addiction, including motivational interviewing (MI). This randomized controlled trial (RCT) compared MI to an active educational treatment for adolescent alcohol and cannabis use (alcohol and cannabis education; ACE). Adolescents who regularly use substances (N = 448; n = 347 Hispanic; n = 101 non-Hispanic white; ages 13-18) were randomized to two 1-hr individual sessions of MI or ACE. We examined 6-month outcomes and mechanisms of change across Hispanic and non-Hispanic white youth. Treatment response was comparable across ethnicities (Hispanic vs. non-Hispanic white youth). Additionally, adolescents in the MI condition showed greater reductions in alcohol use compared to those in ACE, with support for motivation and self-efficacy as mechanisms of treatment response. Direct effects of MI on cannabis use were not observed; however, a significant indirect effect of motivation was observed for reductions in cannabis use. Data support the efficacy of MI in reducing adolescent alcohol use, through the vehicle of enhanced motivation and self-efficacy. While consistent treatment response was observed for adolescent alcohol use across ethnicities (Hispanic vs. non-Hispanic white), further exploration into potential underexplored mechanisms of Hispanic adolescents' treatment response is requisite to strengthening prevention and intervention programming for Hispanic adolescents' cannabis use. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Understanding disparities and barriers associated with pediatric transplant evaluation and time to listing: Moving toward a more comprehensive picture.

BACKGROUND: Delayed time to listing (TTL) for pediatric transplant patients is associated with increased risks of mortality and morbidity. The full range of health disparities, sociodemographic factors, and other barriers associated with delays in listing in the pediatric transplant candidate evaluation process has not been fully examined. METHODS: Retrospective chart reviews were conducted for 183 kidney, liver, and heart transplant candidates ages 0-18 who were referred for evaluation during 2012-2015. Demographic information and potential barriers (e g., social/medical factors, financial concerns) were gathered from pre-transplant evaluations and included in a comprehensive model to evaluate mechanisms that explain differences in TTL. Descriptive statistics, logistic regression models, Cox proportional hazards models, and path analysis were used for analyses. RESULTS: Candidates included 26.8% heart, 33.3% liver, and 39.9% kidney patients. The most common barrier to listing was financial (71.6%), followed by caregiver psychological or substance use (57.9%), and medical problems (49.7%). Higher age, kidney, and liver organ type (relative to the heart), and presence of social, medical, administrative/motivation, and financial barriers were all directly associated with longer TTL. Public insurance was indirectly associated with TTL through social, administrative/motivation, and financial barriers. Organ type was indirectly associated with TTL through financial barriers. CONCLUSIONS: Results suggest social problems, administrative issues, and financial issues act as mechanisms through which insurance type and liver transplant candidates face increased risk of delays in transplant listing time. There are numerous clinical implications and interventions that are warranted to reduce TTL among pediatric transplant candidates with co-occurring barriers.

Essential Versus Nonessential: The Ethics of Conducting Non-COVID Research in a Population of Persons Living With Serious Illness During the COVID-19 Pandemic.

The COVID-19 pandemic has created disruptions and ethical tensions in palliative care research; however, ethical principles must continue to be applied for evaluating the safety of conducting research with seriously ill patient participants and nurse participants in an acute care setting. This randomized controlled trial is conducted in the acute care hospital and tests the effects of a narrative intervention versus usual care on the primary outcome of patients' perception of quality of communication with their nurses and the secondary outcome of biopsychosocial well-being. In accordance with local and institutional COVID-19 guidance, research activities were temporarily suspended in March 2020, and when allowed to resume, some aspects of the protocol were adapted to maximize safety for all stakeholders: patients/families, nurses, and the research team. This article (a) considers case perspectives of all stakeholders involved in a randomized controlled trial conducted in the acute care hospital setting during the COVID-19 pandemic, (b) describes the ethical dilemma and ethical principles in the context of the case, (c) discusses lessons learned while resuming clinical research activities, and (d) provides an ethical framework for the decision-making processes around vulnerability and safety in conducting research during a pandemic with persons living with serious illness.

Patterns of treatment in older patients with newly diagnosed advanced bladder cancer: A SEER dataset analysis.

Background: Bladder cancer is one of the top 10 cancers diagnosed in Americans with a median age of 73. This is the patient population that tends to be older with multiple medical conditions, and previously described variability in treatment in the earlier stages of the disease. This study aimed to evaluate the first-line therapeutic choices for older adults newly diagnosed with advanced bladder cancer. In addition, this work evaluated predictors of response as well as the role of events of functional importance in relation to treatment assignment. Methods: A population-based cohort study was conducted using the SEER-Medicare database of patients with advanced stage bladder cancer not eligible for curative intent therapy between 2010 and 2013. Patient groups of interest were compared via univariate and multivariate associations. Additionally, a latent class analysis was applied to identify classes with similar features in reference to events of functional importance-events linked to the maintenance or improvement of physical function status. Results: Within the sample, we noted that a minority of patients received a standard cisplatin-containing regimen (14.77%) and a majority did not receive any chemotherapy (59.69%). Most patients were over age 75. The adjusted odds ratio of no chemo versus cisplatin in patients aged 76 and older compared to patients 66-75 was 6.61 (4.79-9.13; p < 0.0001). We applied latent class analysis methods to the dataset, and three classes demonstrated very low and moderate levels of functional events in the 12 months prior to a person's first outpatient visit for advanced bladder cancer care. Conclusions: Patients with new diagnosis of advanced bladder cancer largely do not receive the recommended first-line systemic therapy of cisplatin chemotherapy, and a significant majority does not receive any treatment. When evaluating the association between class assignment and predictors of chemotherapy use, such as comorbidity and age, patients with "low usage overall" were more likely to receive chemotherapy. Yet even patients who received chemotherapy had some events of functional importance.

Motivational profiles and change in physical activity during a weight loss intervention: a secondary data analysis.

BACKGROUND: High levels of moderate-to-vigorous intensity physical activity (MVPA) are strongly associated with sustained weight loss, however the majority of adults are unsuccessful in maintaining high levels of MVPA long-term. Our goal was to identify profiles based on exercise motives, and examine the association between motivational profile and longitudinal changes in MVPA during a weight loss intervention. METHODS: Adults with overweight or obesity (n = 169, mean ± SE; age 39 ± 0.7 years, BMI 34.4 ± 0.3 kg/m2, 83% female) underwent an 18-month behavioral weight loss program, including 6 months of supervised exercise, followed by 6 months of unsupervised exercise. Participants self-reported behavioral regulations for exercise at baseline (BREQ-2). Latent profile analysis identified subgroups from external, introjected, identified, and intrinsic regulations measured at baseline. Mean differences in device-measured total MVPA were compared across motivational profiles at baseline, after 6 months of supervised exercise and after a subsequent 6 months of unsupervised exercise. RESULTS: Three motivational profiles emerged: high autonomous (high identified and intrinsic, low external regulations; n = 52), high combined (high scores on all exercise regulations; n = 25), and moderate combined (moderate scores on all exercise regulations; n = 92). Motivational profile was not associated with baseline level of MVPA or the increase in MVPA over the 6-month supervised exercise intervention (high autonomous: 21 ± 6 min/d; high combined: 20 ± 9 min/d; moderate combined: 33 ± 5 min/d; overall P > 0.05). However, during the transition from supervised to unsupervised exercise, MVPA decreased, on average, within all three profiles, but the high autonomous profile demonstrated the least attenuation in MVPA (- 3 ± 6 min/d) compared to the moderate combined profile (- 20 ± 5 min/d; P = 0.043). CONCLUSIONS: Results were in alignment with the Self-Determination Theory. Adults motivated by autonomous reasons (value benefits of exercise, intrinsic enjoyment) may be more likely to sustain increases in MVPA once support is removed, whereas participants with moderate-to-high scores on all types of exercise regulations may need additional long-term support in order to sustain initial increases in MVPA. CLINICAL TRIAL REGISTRATION: NCT01985568. Registered 24 October 2013.

Longitudinal Association of Health Literacy with Parental Oral Health Behavior.

BACKGROUND: Prior studies suggest that parents with limited health literacy (HL) may be less likely to engage in oral health practices known to protect children's oral health. Earlier work has relied on cross-sectional data, however, so it is unclear whether HL influences parental behavior or is merely correlated with it. OBJECTIVE: We sought to clarify the impact of HL on subsequent adherence to parental oral health practices. METHODS: This secondary analysis used survey data from a randomized controlled trial designed to reduce dental decay in American Indian children (N = 579). We used path analysis to test a theoretical framework developed to clarify the mechanisms through which HL might influence parental oral health behavior. The framework proposed that HL (1) has a direct effect on parental oral health knowledge, beliefs (i.e., self-efficacy, perceived susceptibility, perceived severity, perceived barriers, perceived benefits), and behavior; (2) has an indirect effect on beliefs through knowledge; and (3) has an indirect effect on behavior through knowledge and beliefs. To test expectations regarding the temporal precedence of the constructs, we examined the association of HL at baseline with knowledge at the 12-month time point, beliefs at 24 months, and behavior at 36 months. KEY RESULTS: HL had significant direct effects on knowledge and specific beliefs (i.e., self-efficacy, perceived susceptibility, perceived barriers), but not on behavior. HL had significant indirect effects on beliefs-except perceived susceptibility-through knowledge. HL had significant indirect effects on behavior, through knowledge and beliefs. Both HL and knowledge had significant total effects on subsequent parental oral health behavior. CONCLUSIONS: HL influenced behavior measured 3 years later through its impact on parental oral health knowledge and beliefs. Our results highlight the importance of addressing HL in development of oral health promotion efforts aimed at protecting the teeth of young Native children. [HLRP: Health Literacy Research and Practice. 2021;5(4):e333-e341.] Plain Language Summary: It is unclear whether HL influences how parents care for their children's teeth. We analyzed data from a project to reduce dental decay in children. We found that HL impacted parents' oral health knowledge, beliefs, and behavior at later points in time. This suggests that HL may influence development of knowledge and beliefs that support positive behavior.