Uncertainty and Communication Preferences Among Patients Undergoing Lung Transplant Evaluation: A Mixed-Methods Study.

OBJECTIVE: Higher uncertainty is associated with poorer quality of life and may be impacted by clinician communication about the future. We determined how patients undergoing lung transplant evaluation experience uncertainty and communication about the future from clinicians. METHODS: We performed a convergent parallel mixed-methods study using a cross-sectional survey and semistructured interviews. Patients undergoing lung transplant evaluation at the University of Colorado and the University of Washington answered questions about future communication and completed the Mishel Uncertainty in Illness Scale-Adult (MUIS-A; range 33-165, higher scores indicate more uncertainty). Interviews were analyzed using content analysis. Integration of survey and interview results occurred during data interpretation. RESULTS: A total of 101 patients completed the survey (response rate: 47%). Twelve survey participants completed interviews. In the survey, most patients identified changing family roles as important (76%), which was infrequently discussed with clinicians (31%). Most patients (86%) worried about the quality of their life in the future, and 74% said that not knowing what to expect in the future prevented them from making plans. The mean MUIS-A score was 85.5 (standard deviation 15.3). Interviews revealed three themes: (1) uncertainty of the future distresses participants; (2) participants want practical information from clinicians; and (3) communication preferences vary among participants. CONCLUSION: Participants experienced distressing uncertainty and wanted information about the future. Communication topics that were important to participants were not always addressed by physicians. Clinicians should address how chronic lung disease and lung transplant can directly impact patients' lives and support patients to cope with uncertainty.

"I Felt Like I Mattered": Caring is a key ingredient of collaborative care for chronic illness.

OBJECTIVES: To identify perceptions and experiences related to caring science and collaborative care in intervention participants of the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) study, a randomized, multi-site clinical trial for patients with chronic heart failure and reduced health status. METHODS: Forty-five participants completed semi-structured, telephone interviews with a focus on intervention components, impact of the intervention on participants' lives, and recommendations for intervention change. Data were analyzed using an inductive content analysis approach focusing on the presence and frequency of text to identify patterns, categories, and themes across participants without an a priori code book. The validity of the identified categories was enhanced through triangulation. RESULTS: Three themes were identified: (1) intervention providers' caring/helping attitude and caring/helping communication; (2) care team availability to respond to concerns or questions; and (3) help with understanding and navigating the healthcare system. DISCUSSION: Patients highly value caring attitudes and communication, availability, and empowerment to understand and navigate healthcare systems. These attitudes and behaviors may be important mediators of the success of collaborative care programs. These are consistent with the theory of caring science, a framework that is relevant more broadly to patient-centered and team-based care models.

Do goals of care documentation reflect the conversation?: Evaluating conversation-documentation accuracy.

BACKGROUND: Documenting goals of care in the electronic health record is meant to relay patient preferences to other clinicians. Evaluating the content and documentation of nurse and social worker led goals of care conversations can inform future goals of care initiative efforts. METHODS: As part of the ADvancing symptom Alleviation with Palliative Treatment trial, this study analyzed goals of care conversations led by nurses and social workers and documented in the electronic health record. Informed by a goals of care communication guide, we identified five goals of care components: illness understanding, goals and values, end of life planning, surrogate, and advance directives. Forty conversation transcripts underwent content analysis. Through an iterative team process, we defined documentation accuracy as four categories: (1) Complete-comprehensive accurate documentation of the conversation, (2) Incomplete-partial documentation of the conversation, (3) Missing-discussed and not documented, and (4) Incorrect-misrepresented in documentation. We also defined-Not Discussed-for communication guide questions that were not discussed nor documented. A constant comparative approach was used to determine the presence or absence of conversation content in the documentation. RESULTS: All five goals of care components were discussed in 67% (27/40) of conversation transcripts. Compared to the transcripts, surrogate (37/40, 93%) and advance directives (36/40, 90%) were often documented completely. Almost 40% of goals and values (15/40, 38%) and half of end of life planning (19/40, 48%) were incomplete. Illness understanding was missing (13/40, 33%), not discussed (13/40, 33%), or incorrect (2/40, 5%). CONCLUSION: Nurse and social worker led goals of care conversations discussed and documented most components of the goals of care communication guide. Further research may guide how best to determine the relative importance of accuracy, especially in the broad setting of incomplete, missing, and incorrect EHR documentation.

Relationship Status and Quality Are Associated With Perceived Benefits of Caregiving for People With Heart Failure.

BACKGROUND: "Benefit finding" is a strengths-based strategy for coping with medical illness that may be particularly useful for caregivers of people with heart failure given the highly fluctuating disease course. OBJECTIVE: The aim of this study was to investigate benefit finding's association with the caregiver-care recipient relationship, depression, and burden at baseline and longitudinally. METHODS: This is a longitudinal observational study of caregivers' benefit finding, relationship quality, depression, and burden. Correlation and multiple regression analyses identify baseline associations and predictors of 12-month change in benefit finding. RESULTS: At baseline (n = 100; median, 60 years [interquartile range, 46-69]; 81% female, 70% partner/spouse), increased benefit finding correlated with higher relationship quality (r = 0.53; 95% confidence interval [CI], 0.38-0.67), lower depression (r = -0.33; 95% CI, -0.49 to -0.14), and lower burden (r = -0.31; 95% CI, -0.47 to -0.11). Twelve-month change in benefit finding was predicted by change in relationship quality (ß = 7.12; 95% CI, 0.62-13.61) but not depression or burden. CONCLUSIONS: Relationship quality and benefit finding changed together over time. Interventions strengthening the caregiver-care recipient bond may be especially impactful for heart failure caregivers.

Criteria for Enrollment of Patients With COPD in Palliative Care Trials: A Systematic Review.

CONTEXT: Use of palliative care interventions in chronic obstructive pulmonary disease (COPD) has increased in recent years and inclusion criteria used to identify patients with COPD appropriate for palliative care vary widely. We evaluated the inclusion criteria to identify ways to improve enrollment opportunities for patients with COPD. OBJECTIVES: To determine inclusion criteria used to select patients with COPD for palliative care trials. METHODS: A systematic review was conducted to determine criteria used to select patients with COPD for palliative care randomized controlled trials. A narrative synthesis was conducted for all trials. RESULTS: Inclusion criteria were highly heterogeneous. Most studies (n = 11, 79%) used a combination of criteria to identify patients with COPD. Commonly used criteria included hospitalization for an acute exacerbation of COPD (n = 8, 57%), home supplemental oxygen use (n = 8, 57%), and spirometry values confirming COPD (n = 6, 43%). Three studies (21.4%) used Modified Medical Research Council score and two studies (21%) used physician prognosis or a performance scale. CONCLUSION: The most common criteria, a hospitalization for acute exacerbation of COPD or supplemental oxygen use at home, both have the benefit of selecting patients who have a higher symptom burden or higher healthcare utilization who might therefore benefit more from palliative care. By describing the landscape and variability of previously used inclusion criteria, this article serves as a resource for clinicians and researchers. Developing a consistent set of inclusion criteria in the future would help generate generalizable results that can be translated into clinical practice to improve the lives of patients with COPD. PROSPERO REGISTRATION NUMBER: CRD42022306752.

Nurse and Social Worker Palliative Telecare Team and Quality of Life in Patients With COPD, Heart Failure, or Interstitial Lung Disease: The ADAPT Randomized Clinical Trial.

Importance: Many patients with chronic obstructive pulmonary disease (COPD), heart failure (HF), and interstitial lung disease (ILD) endure poor quality of life despite conventional therapy. Palliative care approaches may benefit this population prior to end of life. Objective: Determine the effect of a nurse and social worker palliative telecare team on quality of life in outpatients with COPD, HF, or ILD compared with usual care. Design, Setting, and Participants: Single-blind, 2-group, multisite randomized clinical trial with accrual between October 27, 2016, and April 2, 2020, in 2 Veterans Administration health care systems (Colorado and Washington), and including community-based outpatient clinics. Outpatients with COPD, HF, or ILD at high risk of hospitalization or death who reported poor quality of life participated. Intervention: The intervention involved 6 phone calls with a nurse to help with symptom management and 6 phone calls with a social worker to provide psychosocial care. The nurse and social worker met weekly with a study primary care and palliative care physician and as needed, a pulmonologist, and cardiologist. Usual care included an educational handout developed for the study that outlined self-care for COPD, ILD, or HF. Patients in both groups received care at the discretion of their clinicians, which could include care from nurses and social workers, and specialists in cardiology, pulmonology, palliative care, and mental health. Main Outcomes and Measures: The primary outcome was difference in change in quality of life from baseline to 6 months between the intervention and usual care groups (FACT-G score range, 0-100, with higher scores indicating better quality of life, clinically meaningful change ≥4 points). Secondary quality-of-life outcomes at 6 months included disease-specific health status (Clinical COPD Questionnaire; Kansas City Cardiomyopathy Questionnaire-12), depression (Patient Health Questionnaire-8) and anxiety (Generalized Anxiety Disorder-7) symptoms. Results: Among 306 randomized patients (mean [SD] age, 68.9 [7.7] years; 276 male [90.2%], 30 female [9.8%]; 245 White [80.1%]), 177 (57.8%) had COPD, 67 (21.9%) HF, 49 (16%) both COPD and HF, and 13 (4.2%) ILD. Baseline FACT-G scores were similar (intervention, 52.9; usual care, 52.7). FACT-G completion was 76% (intervention, 117 of 154; usual care, 116 of 152) at 6 months for both groups. Mean (SD) length of intervention was 115.1 (33.4) days and included a mean of 10.4 (3.3) intervention calls per patient. In the intervention group, 112 of 154 (73%) patients received the intervention as randomized. At 6 months, mean FACT-G score improved 6.0 points in the intervention group and 1.4 points in the usual care group (difference, 4.6 points [95% CI, 1.8-7.4]; P = .001; standardized mean difference, 0.41). The intervention also improved COPD health status (standardized mean difference, 0.44; P = .04), HF health status (standardized mean difference, 0.41; P = .01), depression (standardized mean difference, -0.50; P < .001), and anxiety (standardized mean difference, -0.51; P < .001) at 6 months. Conclusions and Relevance: For adults with COPD, HF, or ILD who were at high risk of death and had poor quality of life, a nurse and social worker palliative telecare team produced clinically meaningful improvements in quality of life at 6 months compared with usual care. Trial Registration: ClinicalTrials.gov Identifier: NCT02713347.

Lung cancer survivors' views on telerehabilitation following curative intent therapy: a formative qualitative study.

OBJECTIVES: To inform personalised home-based rehabilitation interventions, we sought to gain in-depth understanding of lung cancer survivors' (1) attitudes and perceived self-efficacy towards telemedicine; (2) knowledge of the benefits of rehabilitation and exercise training; (3) perceived facilitators and preferences for telerehabilitation; and (4) health goals following curative intent therapy. DESIGN: We conducted semi-structured interviews guided by Bandura's Social Cognitive Theory and used directed content analysis to identify salient themes. SETTING: One USA Veterans Affairs Medical Center. PARTICIPANTS: We enrolled 20 stage I-IIIA lung cancer survivors who completed curative intent therapy in the prior 1-6 months. Eighty-five percent of participants had prior experience with telemedicine, but none with telerehabilitation or rehabilitation for lung cancer. RESULTS: Participants viewed telemedicine as convenient, however impersonal and technologically challenging, with most reporting low self-efficacy in their ability to use technology. Most reported little to no knowledge of the potential benefits of specific exercise training regimens, including those directed towards reducing dyspnoea, fatigue or falls. If they were to design their own telerehabilitation programme, participants had a predominant preference for live and one-on-one interaction with a therapist, to enhance therapeutic relationship and ensure correct learning of the training techniques. Most participants had trouble stating their explicit health goals, with many having questions or concerns about their lung cancer status. Some wanted better control of symptoms and functional challenges or engage in healthful behaviours. CONCLUSIONS: Features of telerehabilitation interventions for lung cancer survivors following curative intent therapy may need to include strategies to improve self-efficacy and skills with telemedicine. Education to improve knowledge of the benefits of rehabilitation and exercise training, with alignment to patient-formulated goals, may increase uptake. Exercise training with live and one-on-one therapist interaction may enhance learning, adherence, and completion. Future work should determine how to incorporate these features into telerehabilitation.

How Important is Spirometry for Identifying Patients with COPD Appropriate for Palliative Care?

BACKGROUND: Providing palliative care to patients with chronic obstructive pulmonary disease (COPD) is a priority. Spirometry demonstrating airflow limitation is a diagnostic test for COPD and a common inclusion criterion for palliative care research. However, requiring spirometry with airflow limitation may exclude appropriate patients unable to complete spirometry, or patients with preserved-ratio impaired spirometry and symptoms or imaging consistent with COPD. MEASURES: To determine differences in quality of life (QOL) and symptoms between patients with COPD identified based on International Classification of Diseases (ICD) codes and spirometry with airflow limitation compared to ICD codes only. INTERVENTION: Patients with COPD enrolled in a palliative care trial were included. Patients were at high risk of hospitalization and death and reported poor QOL. Baseline measures of QOL (Functional Assessment of Cancer Therapy-General (FACT-G), the Clinical COPD Questionnaire, and Quality of Life at the End of Life), and symptoms (Patient Health Questionnaire-8, Generalized Anxiety Disorder-7, fatigue, Insomnia Severity Index) were compared. OUTCOMES: Two hundred eight patients with COPD were predominantly male, White, and average age was 68.4. Between patients with ICD codes and spirometry with airflow limitation compared to patients with ICD codes only, there were no significant differences in FACT-G (59.0 vs. 55.0, P = 0.33), other measures of QOL, or symptoms between groups. CONCLUSION: These results imply that spirometry may not need to be a requirement for inclusion into palliative care research or clinical care for patients with poor quality of life and at high risk for adverse outcomes.

How Does Spiritual Well-Being Change Over Time Among US Patients with Heart Failure and What Predicts Change?

Few studies have examined how spiritual well-being changes over time in patients with heart failure. We conducted a secondary analysis of data from the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) trial (N = 314). Spiritual well-being was measured using the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp) at baseline and 12-month follow-up. Of the 165 patients with spiritual well-being data at follow-up, 65 (39%) experienced probable clinically meaningful changes (> 0.5 SD) in spiritual well-being (35 improved, 30 declined). Increased pain (p = 0.04), decreased dyspnea (p < 0.01), and increased life completion (p = 0.02) were associated with improvement in overall spiritual well-being. Exploratory analyses found different predictors for FACIT-Sp subscales.

Primary palliative care for heart failure provided within ambulatory cardiology: A randomized pilot trial.

BACKGROUND: Heart failure is characterized by physical and emotional symptoms and decreased quality of life (QoL). Palliative care can reduce burdens of serious illness but often is limited to inpatient or academic settings. OBJECTIVES: To develop and test the Primary Education for Nurses in Palliative care-HF (PENPal-HF) intervention, training outpatient cardiology nurses to address symptom burden, patient priorities for care and QoL, and advance care planning as part of quarterly HF visits. METHODS: We conducted a pilot randomized clinical trial for adults with NYHA Stage III or IV HF and ≥ 2 hospitalizations in the past 12 months, recruited from a community-based cardiology clinic. Participants were randomized 2:1, PENPal-HF plus usual care versus usual care alone. Primary outcomes were feasibility and acceptability. RESULTS: We randomized 30 adults with Stage III HF - 20 to PENPal-HF and 10 to usual care. Most in the intervention group (71%) and in the control group (62%) completed the study through the final outcome assessment in week 56; 5 participants died. Of 20 participants in the intervention, 14 (70%) remained in the study through the end of intervention visits; 11 (55%) completed all visits. Most intervention participants (93.75%) agreed or strongly agreed that they were satisfied with their care, and 87.5% agreed or strongly agreed that all people with HF should receive the intervention. Most intervention group participants (93.75%) reported a perceived improvement in physical symptoms, mood, and/or QoL. CONCLUSIONS: This pilot study suggests that nurse-led primary palliative care in outpatient cardiology settings is promising. Research is warranted to determine efficacy and effectiveness.

Preferred Role in Health Care Decision Making Over Time in Patients With Heart Failure: My Decision or My Doctor's Decision?

BACKGROUND: Understanding patients' preferred role in decision making can improve patient-centered care. This study aimed to determine change and the predictors of change in preferred decision-making roles over time in patients with heart failure. METHODS AND RESULTS: During the CASA (Collaborative Care to Alleviate Symptoms and Adjust to Illness) trial, patients' preferred roles in decision making were measured using the Control Preferences Scale (range 1-5; higher = less active; n = 312) at 4 timepoints over 1 year. The effect of the CASA intervention on preferred decision-making roles was tested using generalized linear mixed models. Whether preferences changed over time in the whole population was determined using linear regression. Demographic and health-related factors were examined as predictors of change using multiple linear regression. At baseline, most participants preferred active (score 1-2, 37.2%) or collaborative (score 3, 44.9%) roles. The CASA intervention did not influence preferred decision-making roles (P > 0.1). Preferences significantly changed over 1 year (P < 0.01), becoming more active (82.1%, 84.2%, 89.0%, 90.1% active/collaborative at each timepoint). Among all models and covariates, there were no significant predictors of change (P > 0.1). CONCLUSIONS: Patients' preferred roles in decision making change over time, but changes are not well predicted. Clinicians should frequently and directly communicate with patients about their preferred decision-making roles.

Reliability, Validity, and Responsiveness of the DEG, a Three-Item Dyspnea Measure.

BACKGROUND: Dyspnea is a common and debilitating symptom that affects many different patient populations. Dyspnea measures should assess multiple domains. OBJECTIVE: To evaluate the reliability, validity, and responsiveness of an ultra-brief, multi-dimensional dyspnea measure. DESIGN: We adapted the DEG from the PEG, a valid 3-item pain measure, to assess average dyspnea intensity (D), interference with enjoyment of life (E), and dyspnea burden with general activity (G). PARTICIPANTS: We used data from a multi-site randomized clinical trial among outpatients with heart failure. MAIN MEASURES: We evaluated reliability (Cronbach's alpha), concurrent validity with the Memorial-Symptom-Assessment-Scale (MSAS) shortness-of-breath distress-orbothersome item and 7-item Generalized-Anxiety-Disorder (GAD-7) scale, knowngroups validity with New-York-Heart-Association-Functional-Classification (NYHA) 1-2 or 3-4 and presence or absence of comorbid chronic obstructive pulmonary disease (COPD), responsiveness with the MSAS item as an anchor, and calculated a minimal clinically important difference (MCID) using distribution methods. KEY RESULTS: Among 312 participants, the DEG was reliable (Cronbach's alpha 0.92). The mean (standard deviation) DEG score was 5.26 (2.36) (range 0-10) points. DEG scores correlated strongly with the MSAS shortness of breath distress-or-bothersome item (r=0.66) and moderately with GAD-7 categories (ρ=0.36). DEG scores were statistically significantly lower among patients with NYHA 1-2 compared to 3-4 [mean difference (standard error): 1.22 (0.27) points, p<0.01], and those without compared to with comorbid COPD [0.87 (0.27) points, p<0.01]. The DEG was highly sensitive to change, with MCID of 0.59-1.34 points, or 11-25% change. CONCLUSIONS: The novel, ultra-brief DEG measure is reliable, valid, and highly responsive. Future studies should evaluate the DEG's sensitivity to interventions, use anchor-based methods to triangulate MCID estimates, and determine its prognostic usefulness among patients with chronic cardiopulmonary and other diseases.

"Made Me Realize That Life Is Worth Living": A Qualitative Study of Patient Perceptions of a Primary Palliative Care Intervention.

Background: Primary palliative care is needed to meet the complex needs of patients with serious illness and their families. However, patient perceptions of primary palliative care are not well understood and can inform subsequent primary palliative care interventions and implementation. Objective: Elicit the patient perspective on a primary palliative care intervention, Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA), from patient perspectives. Design: Qualitative study using patient interviews and two methods of triangulation. Setting/Subjects: Between July 2014 and September 2015, we interviewed 45 patients who participated in the intervention in a Veterans Affairs (VA) (primary site), academic, and urban safety-net health system in the United States. Main Measures: Participants were asked about what was most and least helpful, how the intervention affected participants' lives, and what should be changed about the intervention. Data were analyzed using a general inductive approach. To enhance validity of the results, we triangulated the findings from patient interviews, reviews of care coordinator documentation, and interprofessional palliative care providers. Results: The six themes identified that primary care intervention: (1) Cared for My Psychosocial Needs, (2) Encouraged Self-Management, (3) Medication Recommendations Worked, (4) Facilitated Goal Attainment, (5) Team was Beneficial, and (6) Good Visit Timing. Conclusions: Participants experienced benefits from the primary palliative care intervention and attributed these benefits to individualized assessment and support, facilitation of skill building and self-management, and oversight from an interprofessional care team. Future primary palliative care interventions may benefit from targeting these specific patient-valued processes.

Modifiable factors associated with health-related quality of life among lung cancer survivors following curative intent therapy.

OBJECTIVE: The number of lung cancer survivors is increasing along with advances in screening, diagnosis, and treatment. Following curative intent therapy, many lung cancer survivors experience significant health-related quality of life (HRQL) impairments. We sought to identify potentially modifiable factors that contribute to the HRQL of these patients. MATERIALS AND METHODS: In this cross-sectional observational study of disease-free, stage I-IIIA lung cancer survivors following curative intent therapy, we used a conceptual model to examine factors that included behavioral, objective functional and physiologic, self-rated function and symptom burden, specific comorbidities, and non-modifiable demographic and clinical lung cancer-related characteristics. We assessed HRQL using the valid and prognostic European Organization for Research and Treatment of Cancer Quality of Life (QoL) Core 30 global health/QoL subscale. We used univariable and multivariable linear regression modeling with backward elimination of potentially modifiable and non-modifiable factors, and interpreted clinically and statistically significant, consistent, and independent modifiable factors as meaningful. RESULTS: Among 75 participants at a median of 12 months since treatment completion, the mean (standard deviation) C30 global health/QoL score was 62.7 (23.3) points (0-100 scale range). In multivariable analysis, with and without non-modifiable factors, we identified three clinically and statistically significant, consistent, and independent factors (unstandardized ß range) associated with global health/QoL: 1) abnormal exercise-induced dyspnea (-9.23 to -10.0 points); 2) impaired self-rated role function (or inability to perform work or daily activities and pursuing leisure-time activities) (-12.6 to -16.4 points); and 3) abnormal insomnia (or trouble sleeping) (-12.6 to -16.4 points). CONCLUSION: We identified meaningful modifiable factors associated with the HRQL of disease-free, stage I-IIIA lung cancer survivors following curative intent therapy. Interventions to improve the HRQL of these patients should aim to reduce exercise-induced dyspnea, improve role function - the ability to perform work and other daily including leisure-time activities, and control insomnia.

Goals of Care Documentation: Insights from A Pilot Implementation Study.

CONTEXT: The Life Sustaining Treatment Decision Initiative is a national effort by the Veterans Health Administration to ensure goals of care documentation occurs among all patients at high risk of life-threatening events. OBJECTIVES: Examine likelihood to receive goals of care documentation and explore associations between documentation and perceived patient care experience at the individual and site level. METHODS: Retrospective, quality improvement analysis of initiative pilot data from four geographically diverse Veterans Affairs (VA) sites (Fall 2014-Winter 2016) before national roll-out. Goals of care documentation according to gender, marital status, urban/rural status, race/ethnicity, age, serious health condition, and Care Assessment Needs scores. Association between goals of care documentation and perceived patient care experience analyzed based on Bereaved Family Survey outcomes of overall care, communication, and support. RESULTS: Veterans were more likely to have goals of care documentation if widowed, urban residents, and of white race. Patients older than 65-years and those with a higher Care Assessment Needs score were twice as likely as a frail patient to have goals of care documented. One pilot site demonstrated a positive association between documentation and perceived support. Pilot site was a statistically significant predictor of the occurrence of goals of care documentation and Bereaved Family Survey scores. CONCLUSION: Older and seriously ill patients were most likely to have goals of care documented. Association between a documented goals of care conversation and perceived patient care experience were largely unsupported. Site-level largely contributed to understanding the likelihood of documentation and care experience.

Characteristics of Patients and Proxy Caregivers Using Patient Portals in the Setting of Serious Illness and End of Life.

Background: There are few studies examining the usage and utility of patient portals among seriously ill and end-of-life populations and their caregivers. Objective: The aim of this study was to describe portal user characteristics among patients and their caregivers (proxy login) at two time points: (1) the 12 months following an electronic medical record flag for serious illness and (2) during the last 12 months of life. Methods: A retrospective cohort analysis of Kaiser Permanente Colorado (KPCO) patients with serious illness, as defined by Kaiser Permanente's prognostic algorithm, and their proxy caregivers was performed for the two time periods. Use was characterized as (1) the discrete number of days the portal was used and (2) the number of days that portal features were accessed. Differences in use by user characteristics were assessed. Results: Patients flagged for serious illness (N = 6129) were 70.4 ± 14.2 years of age, and used the portal on average 50.4 days. Patients (N = 6517) in the last year of life were 76.7 ± 13.7 years of age and used the portal on average 43 days. Caregiver proxy use of the portal was low in both cohorts. Patients who were older, female, non-White, and healthier were less likely to use the portal. Conclusions: In comparison with overall KPCO portal use and recent patient portal studies examining use patterns, patient portal use was high among patients flagged with serious illness and nearing the end of life. However, because use was associated with age, gender, and race, addressing barriers to portal adoption among underserved populations and caregiver proxies is key to better leveraging patient portal systems for palliative and end-of-life care.

Impact of group visits for older patients with heart failure on advance care planning outcomes: Preliminary data.

OBJECTIVE: Advance care planning (ACP) is critically important for heart failure patients, yet important challenges exist. Group visits can be a helpful way to engage patients and caregivers in identifying values and preferences for future care in a resource-efficient way. We sought to evaluate the impact of group visits for ACP among older adults with heart failure and their caregivers on ACP-related outcomes. METHODS: We conducted a mixed-methods pilot study evaluating the impact of an ACP group visit for older adults with heart failure and their caregivers on ACP-related outcomes including readiness and self-efficacy. The evidence-based PREPARE for Your Care video-based intervention was used to guide the group visits. Twenty patients and 10 caregivers attended one of the five 90-min group visits led by a trained facilitator. Group visit participants completed pre-, post-, and 1-month follow-up surveys using validated 5-point ACP readiness and self-efficacy scales. Qualitative feedback obtained within 3 days of a group visit was analyzed using a directed content analysis. RESULTS: Patient participants had a median age of 78 years. Approximately half were female while caregiver participants were mostly female. Participants were predominantly white. Patient readiness scores improved significantly pre-to-post (+0.53; p = 0.002) but was not sustained at 1-month follow-up. Patient and caregiver self-efficacy showed some improvement pre-to-post but was also not sustained at follow-up. Interviews revealed positive impacts of group visits across the three themes: encouraging reviewing or revisiting prior ACP activities, motivating patients to take direct steps towards ACP, and serving as a "wake-up" call to action. CONCLUSIONS: Disease-focused group visits may have a short-term effect on ACP outcomes but ongoing touchpoints are likely necessary to sustain ACP over time. The results highlight a need for follow-up ACP conversations after a single group visit. Timing for follow-ups and the ideal person to follow-up ACP conversations needs to be explored.