Association of performance status, depression, and demographics with advance directive documentation in patients with glioblastoma

Depression and anxiety are common psychological disorders for children and adolescents. Psychological (e.g. psychotherapy), psychosocial (e.g. cognitive behavioral therapy) and biological (e.g. SSRIs or tricyclic drugs) treatments are the most common treatments being offered. The large variety of therapeutic interventions give rise to questions of clinical effectiveness and side effects. Physical exercise is inexpensive with few, if any, side effects. To assess the effects of exercise interventions in reducing or preventing anxiety or depression in children and young people up to 20 years of age. We searched the Cochrane Controlled Trials Register (latest issue available), MEDLINE, EMBASE, CINAHL, PsycINFO, ERIC and Sportdiscus up to August 2005. Randomised trials of vigorous exercise interventions for children and young people up to the age of 20, with outcome measures for depression and anxiety. Two authors independently selected trials for inclusion, assessed methodological quality and extracted data. The trials were combined using meta-analysis methods. A narrative synthesis was performed when the reported data did not allow statistical pooling. Sixteen studies with a total of 1191 participants between 11 and 19 years of age were included.Eleven trials compared vigourous exercise versus no intervention in a general population of children. Six studies reporting anxiety scores showed a non-significant trend in favour of the exercise group (standard mean difference (SMD) (random effects model) -0.48, 95% confidence interval (CI) -0.97 to 0.01). Five studies reporting depression scores showed a statistically significant difference in favour of the exercise group (SMD (random effects model) -0.66, 95% CI -1.25 to -0.08). However, all trials were generally of low methodological quality and they were highly heterogeneous with regard to the population, intervention and measurement instruments used. One small trial investigated children in treatment showed no statistically significant difference in depression scores in favour of the control group (SMD (fixed effects model) 0.78, 95% CI -0.47 to 2.04). No studies reported anxiety scores for children in treatment. Five trials comparing vigorous exercise to low intensity exercise show no statistically significant difference in depression and anxiety scores in the general population of children. Three trials reported anxiety scores (SMD (fixed effects model) -0.14, 95% CI -0.41 to 0.13). Two trials reported depression scores (SMD (fixed effects model) -0.15, 95% CI -0.44 to 0.14). Two small trials found no difference in depression scores for children in treatment (SMD (fixed effects model) -0.31, 95% CI -0.78 to 0.16). No studies reported anxiety scores for children in treatment. Four trials comparing exercise with psychosocial interventions showed no statistically significant difference in depression and anxiety scores in the general population of children. Two trials reported anxiety scores (SMD (fixed effects model) -0.13, 95% CI -0.43 to 0.17). Two trials reported depression scores (SMD (fixed effects model) 0.10, 95% CI-0.21 to 0.41). One trial found no difference in depression scores for children in treatment (SMD (fixed effects model) -0.31, 95% CI -0.97 to 0.35). No studies reported anxiety scores for children in treatment. Whilst there appears to be a small effect in favour of exercise in reducing depression and anxiety scores in the general population of children and adolescents, the small number of studies included and the clinical diversity of participants, interventions and methods of measurement limit the ability to draw conclusions. It makes little difference whether the exercise is of high or low intensity. The effect of exercise for children in treatment for anxiety and depression is unknown as the evidence base is scarce.

Advance Care Planning by or on Behalf of Peritoneal Dialysis Patients in Long-Term Care

Achieving advance care planning in diverse, underserved populations

Advance directive (AD) designation is an important component of advance care planning (ACP) that helps align care with patient goals. However, it is underutilized in high-risk surgical patients with cancer, and multiple barriers contribute to the low AD designation rates in this population. To assess the association of early palliative care integration with changes in AD designation among patients with cancer who underwent surgery. This cohort study was a retrospective analysis of a prospectively maintained registry of adult patients who underwent elective surgery for advanced abdominal and soft tissue malignant tumors at a surgical oncology clinic in a comprehensive cancer center with expertise in regional therapeutics between June 2016 and May 2022, with a median (IQR) postoperative follow-up duration of 27 (15-43) months. Data analysis was conducted from December 2022 to April 2023. Integration of ACP recommendations and early palliative care consultations into the surgical workflow in 2020 using electronic health records (EHR), preoperative checklists, and resident education. The primary outcomes were AD designation and documentation. Multivariable logistic regression was performed to assess factors associated with AD designation and documentation. Among the 326 patients (median [IQR] age 59 [51-67] years; 189 female patients [58.0%]; 243 non-Hispanic White patients [77.9%]) who underwent surgery, 254 patients (77.9%) designated ADs. The designation rate increased from 72.0% (131 of 182 patients) before workflow integration to 85.4% (123 of 144 patients) after workflow integration in 2020 (P = .004). The AD documentation rate did not increase significantly after workflow integration in 2020 (48.9% [89 of 182] ADs documented vs 56.3% [81 of 144] ADs documented; P = .19). AD designation was associated with palliative care consultation (odds ratio [OR], 41.48; 95% CI, 9.59-179.43; P < .001), palliative-intent treatment (OR, 5.12; 95% CI, 1.32-19.89; P = .02), highest age quartile (OR, 3.79; 95% CI, 1.32-10.89; P = .01), and workflow integration (OR, 2.05; 95% CI, 1.01-4.18; P = .048). Patients who self-identified as a race or ethnicity other than non-Hispanic White were less likely to have designated ADs (OR, 0.36; 95% CI, 0.17-0.76; P = .008). AD documentation was associated with palliative care consulation (OR, 4.17; 95% CI, 2.57- 6.77; P < .001) and the highest age quartile (OR, 2.41; 95% CI, 1.21-4.79; P = .01). An integrated ACP initiative was associated with increased AD designation rates among patients with advanced cancer who underwent surgery. These findings demonstrate the feasibility and importance of modifying clinical pathways, integrating EHR-based interventions, and cohabiting palliative care physicians in the surgical workflow for patients with advanced care.

Barriers and Facilitators of Advance Care Planning for Older Adults with Sickle Cell Disease

Empowering Patient Participation in Advance Care Planning Discussions Within Primary Care: The PREPARE Randomized Clinical Trial (TH311A)

Background:Advance care planning (ACP) benefits patients and caregivers, yet it is underutilized and little is known about ACP in Huntington’s disease (HD) clinics. This study sought to determine the percentage of charts with AD documentation within an HD clinic.Methods:A retrospective chart review was conducted on a randomly selected sample of charts within an HD clinic. HD patients ≥18 y/o with a positive genetic test (≥40 CAG repeats) seen between January 2018 and June 2021 were included. Charts were reviewed for documentation of ADs either in provider notes or in the electronic medical records (EMR).Results:Ninety-one charts were reviewed (n = 91). Twenty-two charts (24.2%) mentioned a completed AD within a provider’s note; however, only nine (9.9%) had an AD available in the EMR. Cognitive status, primary insurance type, presence of dysphagia, and stage of disease were associated with documentation of completed ADs within a provider’s note.Discussion:The rate of completed ADs mentioned in a provider’s note (24.2%) was significantly lower than rates of AD completion in a previous study within the HD population (38%). Additional studies focused on improving rates AD completion are needed.HighlightsMost patients with Huntington’s disease do not have documentation of completed advance directives (ADs) within their medical chart. In a retrospective chart review 24.2% of patients seen in a specialty HD clinic had documentation of ADs in a provider’s note and 9.9% had ADs available within the EMR.

Background: Amyotrophic lateral sclerosis (ALS) is a progressive neuromuscular disorder resulting in functional decline and death. Despite recent emphases on advance care planning (ACP), low rates of documentation of ACP are seen in this population. Objectives: This study aims to determine rates of advance directive (AD) documentation and whether having a documented AD or ACP discussion affects healthcare utilization for ALS patients. Design: Retrospective chart review. Setting/Subjects: 130 patients from a multidisciplinary clinic at one U.S. tertiary care medical center. Measurements: The presence of a completed AD uploaded to the electronic medical record; the documentation of ACP discussions; and rates of percutaneous endoscopic gastrostomy (PEG) placement, tracheostomy placement, hospitalization within 2 weeks of death, death in hospital, and hospice utilization. Results: Overall rates of AD documentation in the electronic medical record were low at only 29.2%. Rates of PEG placement, tracheostomy placement, hospitalization within 2 weeks of death, death in hospital, and hospice utilization did not vary between patients with and without AD documentation. However, patients with a documented ACP conversation were more likely to have a PEG placed and to utilize hospice. Conclusions: Our study indicates that while having a documented AD is not correlated to differences in healthcare utilization in patients with ALS, the benefit of ACP in this population is in having a dedicated conversation with patients and caregivers rather than focusing on completion of a static document.

Ethical Issues in the Care of Emerging Adults in Pediatric Intensive Care Units.

A patient-directed, online program (PREPARE for Your Care [PREPARE]; prepareforyourcare.org) has been shown to increase advance care planning (ACP) documentation. However, the mechanisms underlying PREPARE are unknown. Our objectives were to compare the efficacy of PREPARE plus an easy-to-read advance directive (AD) vs an AD alone to increase active patient participation in ACP discussions during clinic visits and to examine effects of active patient participation on ACP documentation. Audio recordings of postintervention primary care visits from two randomized trials (2013-2016). Seven primary care clinics at a veterans affair and safety-net hospital in San Francisco, CA. English- and Spanish-speaking adults, aged 55 years and older, with two or more chronic/serious conditions. PREPARE plus an easy-to-read AD or an AD alone. The primary outcome was the number of active patient participation utterances about ACP (eg, asking questions, stating preferences) measured by the validated Active Patient Participation Coding Scheme. We examined differences in utterances by study arm using mixed effects negative binomial models and utterances as a mediator of PREPARE's effect on documentation using adjusted logistic regression. Models were adjusted for health literacy, prior care planning, and clinician. Among 393 participants, the mean (SD) age was 66 (8.1) years, 120 (30.5%) had limited health literacy, and 99 (25.2%) were Spanish speaking. PREPARE plus the AD resulted in 41% more active patient participation in ACP discussions compared with the AD alone (mean [SD] = 10.1 [16.8] vs 6.6 [13.4] utterances; incidence rate ratio = 1.41; 95% confidence interval = 1.00-1.98). For every additional utterance, participants had 15% higher odds of ACP documentation, and active patient participation accounted for 16% of PREPARE's effect on documentation. The PREPARE program and easy-to-read AD empowered patients to actively participate in ACP discussions during clinical visits more than the AD alone. Increased activation was associated with increased ACP documentation. Therefore, PREPARE may mitigate barriers to ACP among English- and Spanish-speaking older adults. ClinicalTrials.gov identifiers: "Improving Advance Care Planning by Preparing Diverse Seniors for Decision Making (PREPARE)" NCT01990235 and "Preparing Spanish-Speaking Older Adults for Advance Care Planning and Medical Decision Making (PREPARE)" NCT02072941. J Am Geriatr Soc 68:1210-1217, 2020.

The project aimed to standardize advanced care planning (ACP) at an internal medicine clinic by initiating physician-patient communication regarding the patient's knowledge, understanding, and openness to pursuing advanced medical directives. Data collection was conducted from February 1 to April 1, 2024, with the study concluding on April 24, 2024. ACP was facilitated through an initial standardized six-question pre-intervention survey in both English and Spanish. This pre-survey included questions on prior survey exposure within the past three months, current age, existing or previous medical conditions, possession of an advance directive (e.g., living will or durable power of attorney for healthcare), and interest in learning more about advanced medical directives. For patients interested in learning more, standardized educational materials from the National Institute on Aging were provided, along with a Texas out-of-hospital do-not-resuscitate (OOH-DNR) order, a Medical Power of Attorney form, and instructions in both English and Spanish. Post-education, patients completed a post-intervention survey asking if they had previously discussed advanced medical directives with a physician. The survey also included Likert scale questions about the discussion's usefulness, comfort with end-of-life discussions, perceived importance of advanced directives, and likelihood of completing an advance directive. During the three months, 52 patients completed the pre-intervention survey, with an average age of 59 years. Hypertension, dyslipidemia, and diabetes were the most common conditions among participants. Statistical tests indicated no significant difference between patients' age or number of comorbidities and possession of an advance directive (p > 0.05), nor was there a significant association between these variables and interest in learning more about advanced directives (p > 0.05). However, post-intervention survey results showed a significant correlation between age and prior discussions about advanced directives (p = 0.013) and between the number of comorbidities and having had past discussions (p = 0.025). Only 1.2% of patients reported having advanced directives before this study, highlighting a substantial gap in documentation. This project revealed a notable gap in ACP documentation among patients at the internal medicine clinic, with very few patients having advanced directives prior to the intervention. While age and comorbidity count were not significantly associated with interest in advanced directives, older patients and those with more comorbidities were more likely to have had previous discussions. This underscores the need for targeted efforts to encourage ACP, particularly among younger patients and those with fewer medical conditions. Standardized educational resources effectively facilitated discussions, raising awareness and promoting engagement in ACP.

Purpose: Past studies of advance care planning (ACP) mostly focused on the inclination and completion rate of advance directives and failed to make a rationale of study connected to health behavior-related theories. In Taiwan, while terminal patients’ advance directives were largely subscribed to family members, studies investigating family members’ experiences were relatively sparse. This study adopted the transtheoretical model (TTM) and social cognitive theory as frameworks and investigated characteristics of the psychological process (including stages of change and behavior expectancy) of terminal patients’ family members participating in patients’ ACP in a home-based caring setting. Method: This study used case-study methods. Ten family members of terminal patients were recruited. The data collected mainly included (1) a video of the course of communicating ACP between family members and medical staff and (2) one-on-one, semi-structured interviews with family members. The above data were analyzed with interaction process analysis and thematic analysis, respectively. Result: Family members’ behavior in discussions unfolded in four aspects, including “reflection and expression of personal viewpoint,” “communication with patient,” “communication with relatives,” and “communication with medical staff.” Concrete behaviors in the above four aspects were classified to depict each stage of change in participating in discussions of ACP, and related experiences that might reflect discussion behavior were also presented. Discussion & Conclusions: (1) The “stage of change” of TTM helped not only to depict behavior in discussing ACP in concrete terms, but also to reveal the complexity of discussion behavior; (2) “passive behavior” in discussion can be characterized by its evaluation result of low importance in outcome expectancy; and (3) “disease-versus-illness” explanatory models of sickness, the “physician-patient relationship,” and the “indigenous relationship-oriented cultural context” are important issues to be considered in future study of ACP.

Advance Directive Utilization Decreases Aggressive End-of-Life Care in Patients Undergoing Allogeneic Hematopoietic Cell Transplantation

To improve outpatient advanced care planning (ACP) for adults with congenital/pediatric heart disease followed in a pediatric heart failure (HF) and transplant clinic through quality improvement (QI) methodology. A one-year QI project was completed. We conducted quarterly chart reviews and incorporated feedback from the providers to direct subsequent interventions. Patients ≥18 years of age seen in the HF and Transplant Clinic for follow-up visit were included in analysis. Interventions focused on five main areas: identifying and training providers to have ACP discussions, standardizing the ACP discussion, standardizing ACP and advance directive (AD) documentation in the electronic medical record, preparing providers to have ACP conversations, and preparing patients to engage in ACP and AD completion. The outcome measure was percent of adults seen in the HF and Transplant Clinic per month with documented AD (goal 50%). The process measure was percent of adults seen in the HF and Transplant Clinic per month with a documented ACP discussion (goal 100%). At baseline, no patients had a documented ACP discussion or AD. Fifty-eight adults (mean age 20.4 ± 2.1 years) were seen from March 2016 to February 2017 for a total of 130 visits. In the final month of our study, 75% of adult encounters had a documented ACP discussion and 42% had a documented AD. The percentage of documented ADs in adults seen in the HF and Transplant Clinic at a quaternary children's hospital improved through a QI initiative. Over 50% of patients who were engaged in an ACP discussion completed an AD, suggesting this population is receptive to ACP and AD completion.

Advance Directive Utilization Is Associated with Less Aggressive End-of-Life Care in Patients Undergoing Allogeneic Hematopoietic Cell Transplantation