Publications

• Conservative Management is customized CKD care, symptom management, and support to navigate care across the CKD trajectory through end of life.
• Conservative management is defined by shared decision-making and interdisciplinary teamwork in alliance with patients and care partners.
• Implementation of conservative management hinges on each practice's logistical considerations and resource availability.

Conservative management is holistic and whole-person care for people with kidney failure. This care pathway is often a good choice for patients who prioritize independence, quality of life, and avoidance of burdens associated with life prolonging therapies such as dialysis. This Kidney Health Guidance document aims to provide evidence-based clinical guidance for best practices in conservative management care delivery. Conservative management comprises three components including customized CKD care, symptom management, and smooth navigation of care transitions. This Kidney Health Guidance describes the application of these three components across the illness trajectory, including the role of shared decision-making, care partner engagement, and interdisciplinary collaboration. Practical strategies are outlined for health care professionals to integrate conservative management care delivery into practice.

Early life adversity confers lifelong health risk, and mindfulness-based interventions (MBIs) show promise for mitigating risk. This trial evaluated feasibility and acceptability of remote mindfulness and coping interventions among emerging adults who recalled childhood trauma with the goal to inform an efficacy trial examining stress-related health outcomes. Eighty-one healthy adults (ages 18–29) who recalled physical, emotional, or sexual abuse during childhood were enrolled. Participants were randomly assigned to 2-week mindfulness or coping comparison interventions and completed lab-based and ambulatory assessments at preintervention, postintervention, and one-month follow-up. Primary outcomes included measures of feasibility and acceptability. Global psychosocial outcomes were secondary. Enrollment and retention targets were reached; of 891 people recruited, 81 were eligible and enrolled, and 88% completed the trial. The intervention programs met benchmarks for feasibility, acceptability, and safe implementation. Participants completed 95% of intervention lessons and 59% of daily life practice prompts, and 93% reported positive treatment expectancies. Three mindfulness participants (8%) showed substantial increases in mental health symptoms. No serious adverse events were reported, but 53% of participants had challenging emotional experiences during the training. The assessment protocol was feasible, with 87% of ambulatory assessments and 99% of blood samples collected. There were no group differences on feasibility/acceptability outcomes. Participants in both groups showed medium-sized improvements on global mental health and mindfulness measures. Two-week remote mindfulness and control interventions were feasible and acceptable among adults exposed to childhood trauma. Further work is warranted to evaluate whether MBIs can offset health risk.

Despite numerous calls to action, palliative care remains inadequately integrated into pulmonary–critical care medicine (PCCM) practice and is de-emphasized in PCCM education. Barriers to specialty palliative care demonstrate a clear need for efficient and effective primary palliative care delivered by PCCM clinicians with advanced training. This American Thoracic Society Workshop Report builds on our policy statement on the proactive integration of palliative care in serious respiratory illness with 2 goals: (1) Develop a scalable “PalliPulm” framework to improve palliative care education and practice in PCCM and (2) inform palliative care–focused education and training programs in PCCM to guide future initiatives. We convened an interdisciplinary and interprofessional group of experts between May 2024 and February 2025 over 4 phases: (1) hybrid workshop; (2) virtual breakout groups; (3) nominal group technique and rapid qualitative analysis; and (4) workshop report development. We identified core primary palliative care skills that PCCM trainees and clinicians should obtain and prioritized the most essential skills—that is, symptom management, serious illness communication, and caregiver support in ambulatory settings and serious illness communication, symptom management, palliative care fundamentals, and end of life care in inpatient settings. We describe pragmatic ways to integrate palliative care into PCCM education and offer advanced educational resources. We provide recommendations for framing palliative care to patients and caregivers, illustrate ways to deliver culturally appropriate palliative care, and offer a path for the future of PalliPulm. This report guides PCCM leaders, trainees, and clinicians to establish scalable PalliPulm educational and practice initiatives and improve its integration into practice.

BACKGROUND: Sleep disturbance is a core feature of bipolar disorder (BD) and often precedes mood recurrence, particularly in youth. Smartphone-based mobile sensing offers a scalable alternative to objective sleep measurement via actigraphy, but its validity in youths with BD is unclear.

METHODS: Analyses included adolescents and young adults (ages 14-25) with BD-I/II from the PROMPT-BD study with at least four days of concurrent actigraphy and mobile sensing. Actigraphy-derived sleep metrics were compared with smartphone-derived proxies. Agreement was evaluated using root mean squared error (RMSE) and mixed-effects models. Zero-inflated negative binomial models examined associations between actigraphy-derived and mobile-sensing derived wake after sleep onset (WASO). Sensitivity analyses tested robustness to missing data, smartphone use patterns, sleep window definitions, operating system, presence of mood symptoms and anxiety, and weekend effects.

RESULTS: Mobile sensing showed strong convergence with actigraphy for sleep timing and duration. RMSEs were <21 minutes for onset, offset, midsleep, and TST, with strongest agreement for midsleep (RMSE = 14.8 minutes). Mobile sensing slightly overestimated sleep duration and estimated earlier timing, and underestimated WASO. Greater WASO significantly increased the odds of detecting any via mobile sensing; mobile sensing proxies were sensitive to the presence of nocturnal wakefulness but did not provide an accurate estimate of the extent of sleep fragmentation. Findings were robust across sensitivity analyses.

CONCLUSIONS: Passive smartphone-derived sleep metrics approximated actigraphy-based estimates of sleep timing and duration in youth with BD. Given the widespread availability of smartphones in this population, this supports their potential as scalable tools for monitoring circadian disruption and informing early intervention.

BACKGROUND: Best Case/Worst Case (BC/WC) is a communication tool to support nephrologists and older adults with advanced chronic kidney disease with decisions about dialysis. We compared the effectiveness of training nephrologists to use BC/WC versus usual care on receipt of palliative care, quality of life (QOL), quality of communication, dialysis initiation, and death.

PARTICIPANTS AND SETTING: From February 2021 to December 2023, we enrolled patients at 10 US sites who were ≥ 60 years, had an estimated glomerular filtration rate (eGFR) ≤ 24 mL/min/1.73m2, with estimated survival ≤ 18 months, and were considering dialysis initiation in the outpatient setting. We randomized nephrologists to intervention or usual care.

METHODS: In this cluster randomized trial, we followed patients for up to 2 years using chart review and patient and caregiver surveys. The primary outcome was receipt of palliative care within 12 months of patient enrollment.

RESULTS: We enrolled 68 nephrologists (36 intervention) and 268 patients (105 intervention). On intention-to-treat analysis, receipt of palliative care within 12 months did not significantly differ between groups (hazard ratio (HR) 0.94, 95% Confidence Interval (CI), 0.59-1.52; p = 0.812). Patients of intervention nephrologists were more likely to initiate dialysis (HR, 1.50, 95% CI, 1.00-2.25; p = 0.048) and report worse QOL throughout the study (FACIT-Pal effect estimate, -6.51; 95% CI, -12.20, -0.81; p = 0.025; FACT-G effect estimate, -4.78; 95% CI, -8.35, -1.22; p = 0.010). We found no significant differences in intensity of treatment at the end of life, quality of communication, or on-study death between groups.

CONCLUSION: Training nephrologists to use the BC/WC communication tool does not significantly affect receipt of palliative care or other measurable clinical outcomes.

TRIAL REGISTRATION: NCT04466865 (URL: clinicaltrials.gov/study/NCT04466865), registered 07/07/2020.

BACKGROUND: It is difficult for patients to make informed decisions about kidney failure unless they know all their treatment options. Conservative management is an important option infrequently presented alongside other kidney failure treatments by nephrologists.

METHODS: We conducted a randomized pilot trial testing the feasibility and acceptability of a communication tool, called Conservative Kidney Management Jumpstart Tool, in assisting nephrologists with discussing conservative management with their patients. We recruited patients aged ≥75 years with stage 4 or 5 chronic kidney disease in the greater Seattle area between April 2023-May 2025. Patients were randomized in 1:1 fashion to either their nephrologists receiving the Tool to use with them at their next clinic visit (intervention) or usual care (control). Our primary outcome and feasibility measure was patient-reported discussion of conservative management during the clinic visit. Our secondary outcome and acceptability measure was change in patients' satisfaction with their nephrologist's serious illness communication skills (using the Quality of Communication Scale, with higher scores indicating higher quality) before and after the visit. We performed an intent-to-treat analysis of the primary endpoint using a chi-square test. We used paired-samples t-tests to assess within-patient changes in the secondary endpoint.

RESULTS: We randomized 74 patients (age 80±1, 19% women, 69% White) to either the control (n=37) or intervention (n=37) group. Patients whose nephrologists received the Tool were more likely to discuss conservative management during their clinic visit (60% vs. 19%, p=0.001) than patients in the control group. Patients whose nephrologists received the Tool rated their nephrologist's communication skills at 7.5±2.1 before the visit and 9.0±1.7 after the visit (p<0.001) as compared with 7.8±1.9 and 7.9±1.8 (p=0.54), respectively, among patients in the control group.

CONCLUSIONS: The Tool was feasible and acceptable to patients, promoting patient-nephrologist discussion of conservative management and improving patients' satisfaction with their nephrologist's communication skills.

Low bone mineral density (BMD) in individuals with phenylketonuria (PKU) due to phenylalanine hydroxylase (PAH) deficiency has been variably reported in the medical literature, but the clinical significance of this observation has been uncertain. We measured BMD in a cross-sectional cohort of 117 individuals with PAH deficiency between 6.2 and 56.8 years age who participate in the PHEFREE Consortium Longitudinal Natural History Study. 49% of children under age 18 years and 26% of adults were consuming a phenylalanine (Phe)-restricted diet, supplemented with low Phe or Phe-free medical foods and treated with sapropterin dihydrochloride. 22% of adults and 32% of children were not responsive to sapropterin and were treated with dietary Phe restriction and supplementary medical foods alone. 20 adults (37%) reported receiving enzyme replacement therapy with pegvaliase. Phenotype predictions from the genotypes of the participants in these three treatment groups were predominantly classical PKU. Participants with mild PKU or mild hyperphenylalaninemia (HPA) phenotypes treatable with sapropterin alone without the need for medical foods made up 9% of adults and 14% of children in the study cohort. Mean (± SD) blood phenylalanine (Phe) concentrations over the year prior to bone densitometry studies measured 449 ± 336 μM in the entire study cohort. Mean BMD z-scores for both adults and children in all body regions were negative with the difference between study participants and the comparator non-PKU population reaching statistical significance (p < 0.05). At least one z-score was <-2 in 15% of children and 10% of adults with PKU (2.3% expected). These differences were apparent in some children already at 6 years age, the earliest time point measured. Mean BMD was more negative in individuals with history of fracture than in those without, but this difference did not reach statistical significance. Multivariate analysis revealed a positive correlation between BMD and body mass index (BMI) in children, with minor contributions from age and natural protein intake. There was no correlation between BMD and blood Phe concentration measured in the year prior to BMD measurement. The pathophysiologic mechanism causing and the clinical significance of these differences remain uncertain, but concern persists that low BMD in this relatively well-treated cohort could portend frank osteopenia and increased fracture risk as these individuals reach advanced age. Whether novel therapeutics, that both correct hyperphenylalaninemia and allow increased dietary intact protein intake, will impact bone mineralization is yet unknown. Longitudinal monitoring of BMD throughout the lifespan is warranted.

CONTEXT: Hospice and palliative medicine (HPM) clinicians increasingly care for patients with serious illness and prolonged opioid exposure, yet often report limited training managing consequences like opioid misuse or opioid use disorder (OUD). Little is known about core addiction skills training in HPM physician fellowships.

OBJECTIVES: To describe current training in core addiction skills for HPM fellows, identify barriers to curricular expansion, and characterize fellowship program director (PD) perspectives and priorities.

METHODS: Cross-sectional national survey of PDs from ACGME-accredited HPM fellowships in the United States assessing core addiction skills training, PD perspectives, and curricular challenges and priorities.

RESULTS: Of 160 eligible programs, 79 PDs responded (49.4%). Most PDs rated addiction training as highly relevant (86%) and important (75%) to HPM practice. PDs perceived that fellows have low confidence with opioid misuse or OUD, despite commonly encountering such patients. Most programs offered limited training (2-3 hours), though many provided electives. Fewer than 20% of programs had faculty with formal addiction training, and 25% reported no faculty with buprenorphine experience. The most frequently cited barriers to curricular expansion were limited faculty expertise in addiction and buprenorphine, and competing curricular priorities. While foundational skills were commonly addressed, PDs identified curricular development priorities including: buprenorphine use, pain management in OUD, and motivational interviewing.

CONCLUSION: Despite broad recognition of the importance of core addiction skills, a shortage of faculty expertise constrains education in HPM physician fellowships. Scalable, technology-enabled, shared curricular approaches may help expand access to expertise and better align training with clinical demands.