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1.
JMIR Aging ; 7: e54128, 2024 May 06.
Article in English | MEDLINE | ID: mdl-38845403

ABSTRACT

Background: Advance care planning (ACP) is a process that involves patients expressing their personal goals, values, and future medical care preferences. Digital applications may help facilitate this process, though their use in older adults has not been adequately studied. Objective: This pilot study aimed to evaluate the reach, adoption, and usability of Koda Health, a web-based patient-facing ACP platform, among older adults. Methods: Older adults (aged 50 years and older) who had an active Epic MyChart account at an academic health care system in North Carolina were recruited to participate. A total of 2850 electronic invitations were sent through MyChart accounts with an embedded hyperlink to the Koda platform. Participants who agreed to participate were asked to complete pre- and posttest surveys before and after navigating through the Koda Health platform. Primary outcomes were reach, adoption, and System Usability Scale (SUS) scores. Exploratory outcomes included ACP knowledge and readiness. Results: A total of 161 participants enrolled in the study and created an account on the platform (age: mean 63, SD 9.3 years), with 80% (129/161) of these participants going on to complete all steps of the intervention, thereby generating an advance directive. Participants reported minimal difficulty in using the Koda platform, with an overall SUS score of 76.2. Additionally, knowledge of ACP (eg, mean increase from 3.2 to 4.2 on 5-point scale; P<.001) and readiness (eg, mean increase from 2.6 to 3.2 on readiness to discuss ACP with health care provider; P<.001) significantly increased from before to after the intervention. Conclusions: This study demonstrated that the Koda Health platform is feasible, had above-average usability, and improved ACP documentation of preferences in older adults. Our findings indicate that web-based health tools like Koda may help older individuals learn about and feel more comfortable with ACP while potentially facilitating greater engagement in care planning.


Subject(s)
Advance Care Planning , Feasibility Studies , Humans , Pilot Projects , Male , Female , Middle Aged , Aged , North Carolina , Internet-Based Intervention , Internet , Surveys and Questionnaires
2.
J Gen Intern Med ; 39(4): 643-651, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37932543

ABSTRACT

BACKGROUND: Risk stratification and population management strategies are critical for providing effective and equitable care for the growing population of older adults in the USA. Both frailty and neighborhood disadvantage are constructs that independently identify populations with higher healthcare utilization and risk of adverse outcomes. OBJECTIVE: To examine the joint association of these factors on acute healthcare utilization using two pragmatic measures based on structured data available in the electronic health record (EHR). DESIGN: In this retrospective observational study, we used EHR data to identify patients aged ≥ 65 years at Atrium Health Wake Forest Baptist on January 1, 2019, who were attributed to affiliated Accountable Care Organizations. Frailty was categorized through an EHR-derived electronic Frailty Index (eFI), while neighborhood disadvantage was quantified through linkage to the area deprivation index (ADI). We used a recurrent time-to-event model within a Cox proportional hazards framework to examine the joint association of eFI and ADI categories with healthcare utilization comprising emergency visits, observation stays, and inpatient hospitalizations over one year of follow-up. KEY RESULTS: We identified a cohort of 47,566 older adults (median age = 73, 60% female, 12% Black). There was an interaction between frailty and area disadvantage (P = 0.023). Each factor was associated with utilization across categories of the other. The magnitude of frailty's association was larger than living in a disadvantaged area. The highest-risk group comprised frail adults living in areas of high disadvantage (HR 3.23, 95% CI 2.99-3.49; P < 0.001). We observed additive effects between frailty and living in areas of mid- (RERI 0.29; 95% CI 0.13-0.45; P < 0.001) and high (RERI 0.62, 95% CI 0.41-0.83; P < 0.001) neighborhood disadvantage. CONCLUSIONS: Considering both frailty and neighborhood disadvantage may assist healthcare organizations in effectively risk-stratifying vulnerable older adults and informing population management strategies. These constructs can be readily assessed at-scale using routinely collected structured EHR data.


Subject(s)
Frailty , Humans , Female , Aged , Male , Frailty/epidemiology , Emergency Room Visits , Retrospective Studies , Hospitalization , Neighborhood Characteristics
3.
Am J Hosp Palliat Care ; : 10499091231223964, 2023 Dec 22.
Article in English | MEDLINE | ID: mdl-38133583

ABSTRACT

Background: While frailty is a well-established predictor of overall mortality among patients with metastatic non-small cell lung cancer (mNSCLC), its association with patient-reported outcomes is not well-characterized. The goal of this study was to examine the association between an electronic frailty index (eFI) score and patient-reported outcome measures along with prognostic awareness among patients with mNSCLC receiving immunotherapy. Methods: In a cross-sectional study, patients with mNSCLC who were on immunotherapy completed the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC-QLQ-C30) and the National Cancer Institute Patient Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). We utilized bivariate analyses to compare quality of life, symptoms, supportive services, and prognostic awareness among 3 groups defined by e-frailty status. Results: Sixty patients (mean age 62.5 years, 75% Caucasian, 60% women) participated. Most patients were pre-frail (68%), with 13% being frail and 18% non-frail. Pre-frail and frail patients had significantly lower physical function scores (mean 83.9 fit vs 74.8 pre-frail vs 60.0 frail, P = .04) and higher rates of self-reported pain (75% frail vs 41.5% pre-frail vs 18.2% fit; P = .04) compared to non-frail patients. We found no differences in palliative referral rates. Conclusion: Pre-frail and frail mNSCLC patients identified by the eFI have higher rates of pain and physical functional impairments than non-frail patients. These findings highlight the importance of emphasizing preventive interventions targeting social needs, functional limitations, and pain management, especially among pre-frail patients to reduce further decline.

4.
J Am Geriatr Soc ; 71(11): 3554-3565, 2023 11.
Article in English | MEDLINE | ID: mdl-37736669

ABSTRACT

The growing number of people living with dementia (PLWD) requires a coordinated clinical response to deliver pragmatic, evidence-based interventions in frontline care settings. However, infrastructure to support such a response is lacking. Moreover, there are too few researchers conducting rigorous embedded pragmatic clinical trials (ePCTs) to make the vision of high quality, widely accessible dementia care a reality. National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's disease and Related Dementias Clinical Trials (IMPACT) Collaboratory seeks to improve the pipeline of early career researchers qualified to lead ePCTs by funding career development awards. Even with support from the Collaboratory, awardees face practical and methodological challenges to success, recently exacerbated by the COVID-19 pandemic. We first describe the training opportunities and support network for the IMPACT CDA recipients. This report then describes the unique career development challenges faced by early-career researchers involved in ePCTs for dementia care. Topics addressed include challenges in establishing a laboratory, academic promotion, mentoring and professional development, and work-life balance. Concrete suggestions to address these challenges are offered for early-career investigators, their mentors, and their supporting institutions. While some of these challenges are faced by researchers in other fields, this report seeks to provide a roadmap for expanding the work of the IMPACT Collaboratory and initiating future efforts to recruit, train, and retain talented early-career researchers involved in ePCTs for dementia care.


Subject(s)
Dementia , Mentoring , Humans , Pandemics , Mentors
6.
J Am Geriatr Soc ; 71(11): 3595-3608, 2023 11.
Article in English | MEDLINE | ID: mdl-37439456

ABSTRACT

BACKGROUND: Advance care planning (ACP) is a process that involves discussing a person's goals, values, and preferences; it is particularly important for persons living with dementia (PLWD) given that dementia is incurable and progressive. To ensure results that will impact real-world practices, ACP outcome measures must be psychometrically strong, meaningful to key partners, and pragmatic to collect. Therefore, we conducted a scoping review of outcome measures utilized in ACP randomized controlled clinical trials (RCTs) enrolling PLWD or their care partners and evaluated their pragmatic characteristics. METHODS: We searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for peer-reviewed ACP RCTs enrolling PLWD or their care partners from 2011 to 2021. We abstracted characteristics of primary and secondary outcome measures, including pragmatic characteristics using an adapted Psychometric and Pragmatic Evidence Rating Scale and ACP outcome domains using the standardized ACP Outcome Framework (i.e., process, action, healthcare, or quality of care). RESULTS: We included 21 ACP RCTs. Trials included 103 outcome measures (39 primary and 64 secondary), of which 11% measured process, 14% measured action, 49% measured healthcare, and 26% measured quality of care. Twenty-four (23%) outcome measures were highly pragmatic, the majority of which (67%) reflected healthcare outcome measures. Sixty-one (59%) outcomes were assessed as highly relevant to PLWD or their care partners. Only 20% (n = 21) of outcome measures were embedded into clinical practice. Most (62%) RCTs were conducted in nursing homes, and 33% were focused PLWD with advanced stage disease. CONCLUSIONS: In RCTs testing ACP interventions to support PLWD, only 23% of outcome measures were highly pragmatic, and most of these measured healthcare utilizations. Outcome assessments were rarely integrated into the EHR during routine clinical care. New outcome measures that address the lived experience of PLWD and their care partners plus have high pragmatic characteristics are needed for embedded pragmatic clinical trials.


Subject(s)
Advance Care Planning , Dementia , Humans , Nursing Homes , Outcome Assessment, Health Care , Patient Acceptance of Health Care , Dementia/therapy
8.
J Palliat Med ; 26(6): 831-836, 2023 06.
Article in English | MEDLINE | ID: mdl-36912809

ABSTRACT

Background and Objectives: This study describes patients' prognostic awareness and palliative care use in the setting of immunotherapy for metastatic non-small cell lung cancer (mNSCLC). Design: We surveyed 60 mNSCLC patients receiving immunotherapy at a large academic medical center; conducted follow-up interviews with 12 survey participants; and abstracted palliative care use, advance directive completion, and death within a year of survey completion from the medical record. Results: Forty seven percent of patients surveyed thought they would be cured; 83% were not interested in palliative care. Interviews suggested oncologists emphasized therapeutic options when discussing prognosis and that commonly used descriptions of palliative care may exacerbate misperceptions. Only 7% had received outpatient palliative care and 8% had an advance directive a year after the survey; only 16% of the 19 patients who died had received outpatient palliative care. Conclusions: Interventions are needed to facilitate prognostic discussions and outpatient palliative care during immunotherapy. Clinical Trial Registration Number NCT03741868.


Subject(s)
Carcinoma, Non-Small-Cell Lung , Lung Neoplasms , Humans , Lung Neoplasms/pathology , Carcinoma, Non-Small-Cell Lung/therapy , Carcinoma, Non-Small-Cell Lung/pathology , Palliative Care , Prognosis , Outpatients , Immunotherapy
9.
Am J Otolaryngol ; 44(1): 103675, 2023.
Article in English | MEDLINE | ID: mdl-36302326

ABSTRACT

OBJECTIVES: To describe the palliative care consultation practices in an academic head and neck surgery practice. METHODS: This is a retrospective review of a palliative care database and the health record for all palliative care consultations of patients suffering from advanced stage head and neck cancer within a 21-month period. RESULTS: Ten head and neck cancer patients received palliative care consults while on the otolaryngology service. One consultation occurred preoperatively; nine occurred postoperatively, on a median of hospital day 9. At the time of referral, seven patients were in the ICU and three were on a surgical floor. Code status de-escalation occurred in six patients and psycho-socio-spiritual suffering was supported in all consultations. Nine patients died within six months, with a median post-consultation survival of 35 days. Of these, two died in an ICU, five were discharged to hospice, one to a SNF, and one to a LTACH. CONCLUSION: Palliative care consultation in this advanced head and neck cancer cohort was commonly late, however, significant suffering was mitigated following most consults. Palliative care specialists are experts at eliciting patient values, determining acceptable tradeoffs and suffering limitations by employing a shared decision-making process that ends with a patient-centered value-congruent treatment recommendation. Oftentimes, this embraces curative-intent or palliative surgery, along with contingency plans for unacceptable value-incongruent postoperative outcomes. Enhanced awareness of the benefits of embracing concordant palliative care in advanced head and neck cancer patients may help overcome the significant barriers to involving palliative care experts earlier.


Subject(s)
Head and Neck Neoplasms , Hospice Care , Humans , Palliative Care , Head and Neck Neoplasms/surgery , Referral and Consultation , Retrospective Studies
11.
Am J Hosp Palliat Care ; 40(8): 881-893, 2023 Aug.
Article in English | MEDLINE | ID: mdl-36239407

ABSTRACT

Background: Patient portals can be an innovative and efficient way to engage patients in advance care planning (ACP). However, comprehension and judgment in older adults with cognitive impairment presents several barriers and challenges to engaging in new technology. Our objective was to develop an ACP portal-based tool (ACPVoice) for community-dwelling persons living with cognitive impairment (PLCI) by engaging end-users in the design process. Methods: Two rounds of cognitive interviews were conducted to identify and resolve cognitive issues related to comprehension, judgment, response, and to assess content validity. Purposive sampling was used with the goal of enrolling 15 different participants (five with mild cognitive impairment and five dyads (those with mild dementia and their care partner) in each round to assess respondents' understanding of questions related to advance care planning to be administered via the patient portal. Results: Twenty PLCI (mean age 78.4, 10 females [50%]) and ten care partners (mean age 60.9, 9 females [90%]) completed cognitive interviews between May 2021 and October 2021. The mean Mini-Mental State Examination score for PLCI was 25.6 (SD 2.6). Unclear wording and undefined vague and/or unfamiliar terms were the major issues identified. Revisions to item wording, response options, and instructions were made to improve question comprehension and response as well as navigational ease. Conclusion: Minor changes to the wording, format, and response options substantially improved respondents' ability to interpret the item content of the ACPVoice tool. Dissemination and implementation of the ACPVoice tool could help to engage community-dwelling PLCI in ACP discussions.


Subject(s)
Advance Care Planning , Cognitive Dysfunction , Dementia , Female , Humans , Aged , Independent Living , Cognitive Dysfunction/therapy , Dementia/psychology
12.
Am J Hosp Palliat Care ; 40(6): 669-676, 2023 Jun.
Article in English | MEDLINE | ID: mdl-36018339

ABSTRACT

INTRODUCTION: The Coronavirus Disease 2019 (COVID-19) pandemic highlighted the importance of understanding patients' goals, values, and medical care preferences given the high morbidity and mortality. We aimed to examine rates of advance care planning (ACP) documentation along with hospital course differences in the absence or presence of ACP among hospitalized patients with COVID-19. METHODS: This retrospective cohort study was performed at a single tertiary academic medical center. All adults admitted between March 1, 2020, and June 30, 2020, for COVID-19 were included. Demographics, ACP documentation rates, presence of ACP forms, palliative care consultation (PCC) rates, code status, and hospital outcome data were collected. Data were analyzed with multivariable analysis to identify predictors of ACP documentation. RESULTS: Among 356 patients (mean age 60.0, 153 (43%) female), 97 (27.2%) had documented ACP and 20 (5.6%) had completed ACP forms. In patients with documented ACP, 52.4% (n = 55) de-escalated care to do-not-resuscitate (DNR)-limited or comfort measures. PCC occurred rarely (<8%), but 78% (n = 21) of those consulted de-escalated care. Being admitted to the intensive care unit (ICU) (OR = 11.1, 95% CI = 5.9-21.1), mechanical intubation (OR = 15.8, 95% CI = 7.4-32.1), and discharge location other than home (OR = 11.3, 95% CI = 5.7-22.7) were associated with ACP documentation. CONCLUSIONS: This study found low ACP documentation and PCC rates in patients admitted for COVID-19. PCC and completion of ACP were associated with higher rates of care de-escalation. These results support the need for pro-active ACP and PCC for patients admitted for serious illnesses, like COVID-19, to improve goal-informed care.


Subject(s)
Advance Care Planning , COVID-19 , Adult , Humans , Female , Male , Retrospective Studies , Pandemics , COVID-19/epidemiology , Hospitals , Documentation/methods
13.
J Pain Symptom Manage ; 65(1): e29-e50, 2023 01.
Article in English | MEDLINE | ID: mdl-36198334

ABSTRACT

CONTEXT: Huntington's disease (HD), an incurable, multi-generational, autosomal dominant disorder, creating unique challenges and a myriad of spiritually-related stressors in those affected and their familial caregivers. Spiritual suffering, experiences of grief/loss, and coping strategies have not been systematically studied in HD caregivers. OBJECTIVES: To comprehensively define spiritual suffering, grief/loss, and coping strategies used by HD caregivers. METHODS: A PRISMA-ScR scoping literature review was conducted. Data from included research articles were organized thematically using induction and open coding. A grounded, deductive approach was used to delineate a demarcated taxonomy of themes, which encompasses all three over-arching domains. Four reviewers, employing a modified Delphi approach, ascertained which themes were demonstrated by research participants in each study. RESULTS: 36 of 583 articles met the review criteria; none were published in the palliative care literature. Investigations primarily focused on intrapersonal (self-image) distress and existential angst; only rarely looking deeper into divine/transpersonal suffering, disrupted religious relationships, or meaning distress. HD caregivers experience profound grief/loss, expressed as disenfranchised grief that is associated with the ambiguous loss of their loved one, loss of family structure, social connectedness, and personal losses. Half of the studies reported maladaptive HD caregiver coping strategies-characterized by dysfunctional escape schemes; in contrast, transcendent/creative strategies were often unexplored. CONCLUSION: HD caregivers experience prolonged grief and other forms of spiritual suffering as they progressively lose their loved ones and disruption to their own lives. With an improved assessment tool, teams with spiritual and palliative care experts will better be able to support HD family caregivers.


Subject(s)
Caregivers , Huntington Disease , Humans , Adaptation, Psychological , Grief , Stress, Psychological
14.
JCO Oncol Pract ; 17(8): e1110-e1119, 2021 08.
Article in English | MEDLINE | ID: mdl-33539182

ABSTRACT

PURPOSE: Immunotherapy or chemoimmunotherapy is now standard treatment for most patients with metastatic non-small-cell lung cancer (mNSCLC), yet patient supportive care needs (SCNs) on immunotherapy are not well defined. This study characterized the SCNs and financial hardship of patients with mNSCLC treated with immunotherapy or chemoimmunotherapy and examined the relationship between patient and caregiver cancer-related employment reductions and patient financial hardship. METHODS: Patients with mNSCLC on immunotherapy or chemoimmunotherapy from a single academic medical center completed the SCNs Survey-34, items indexing material, psychological, and behavioral financial hardship, and the Comprehensive Score for Financial Toxicity. Univariate and bivariate analyses examined care needs, financial hardship, and impact of cancer-related employment reductions on patient financial hardship. RESULTS: Sixty patients (40% male; 75% White, mean age = 62.5 years, 57% on immunotherapy alone) participated. Fifty-five percent reported unmet needs in physical or daily living and psychological domains. Financial hardship was common (33% material, 63% psychological, and 57% behavioral). Fifty-two percent reported hardship in at least two domains. Forty percent reported a caregiver cancer-related employment reduction. Caregiver employment reduction was related to patient financial hardship (68% of those reporting caregiver employment reduction reported at least two domains of hardship v 40% of those without reduction, P = .03) and patient financial distress (mean Comprehensive Score for Financial Toxicity = 19.6 among those with caregiver employment reduction v 26.8 without, P = .01). CONCLUSION: Patients with mNSCLC treated with immunotherapy or chemoimmunotherapy report multiple unmet care needs and financial hardship. Psychological, functional, financial, and caregiver concerns merit assessment and intervention in this population.


Subject(s)
Carcinoma, Non-Small-Cell Lung , Lung Neoplasms , Carcinoma, Non-Small-Cell Lung/therapy , Employment , Female , Financial Stress , Humans , Immunotherapy , Lung Neoplasms/therapy , Male , Middle Aged
15.
Psychooncology ; 30(6): 863-873, 2021 06.
Article in English | MEDLINE | ID: mdl-33638288

ABSTRACT

OBJECTIVE: Between 40% and 65% of lung cancer patients report concern about maintaining valued activities and roles, yet few interventions address this concern. Hope, a patient's perceived ability to generate goals and identify ways to pursue them, may be a promising intervention target to support function among lung cancer patients. The goal of this study was to assess metastatic non-small cell lung cancer (mNSCLC) patient interest and preferences for a hope-enhancing intervention. METHODS: We conducted a sequential mixed-methods (survey followed by semi-structured interviews) study with patients with mNSCLC. Surveys assessed patient interest in, perceived helpfulness of, and preferences for a hope intervention. A subset of 12 patients (and caregivers, when present) completed semi-structured interviews to elicit feedback on proposed intervention content and procedures. RESULTS: Survey data from 60 patients (40% male; Mean age = 62.5; SD = 9.3) suggested high perceived importance of pursuing personal goals during cancer treatment, moderate perceived helpfulness in discussing personal goals, and preference for a nurse-led intervention. Based on these data, a 5-session, nurse-led intervention protocol was drafted and reviewed with 12 patients. Interviewed patients and caregivers agreed working towards goals was beneficial, liked the intervention concept, and thought prompts and rating scales on handouts would facilitate discussion. The majority preferred nurse delivery during infusions. CONCLUSIONS: A nurse-led hope-enhancing intervention delivered primarily during infusions may be acceptable to mNSCLC patients. Future work should test feasibility and identify ways to incorporate caregivers and oncology providers into hope interventions.


Subject(s)
Carcinoma, Non-Small-Cell Lung , Lung Neoplasms , Carcinoma, Non-Small-Cell Lung/therapy , Caregivers , Female , Humans , Lung Neoplasms/therapy , Male , Medical Oncology , Middle Aged , Surveys and Questionnaires
16.
JAMA Intern Med ; 181(3): 361-369, 2021 03 01.
Article in English | MEDLINE | ID: mdl-33427851

ABSTRACT

Importance: Advance care planning (ACP), especially among vulnerable older adults, remains underused in primary care. Additionally, many ACP initiatives fail to integrate directly into the electronic health record (EHR), resulting in infrequent and disorganized documentation. Objective: To determine whether a nurse navigator-led ACP pathway combined with a health care professional-facing EHR interface improves the occurrence of ACP discussions and their documentation within the EHR. Design, Setting, and Participants: This was a randomized effectiveness trial using the Zelen design, in which patients are randomized prior to informed consent, with only those randomized to the intervention subsequently approached to provide informed consent. Randomization began November 1, 2018, and follow-up concluded November 1, 2019. The study population included patients 65 years or older with multimorbidity combined with either cognitive or physical impairments, and/or frailty, assessed from 8 primary care practices in North Carolina. Interventions: Participants were randomized to either a nurse navigator-led ACP pathway (n = 379) or usual care (n = 380). Main Outcomes and Measures: The primary outcome was documentation of a new ACP discussion within the EHR. Secondary outcomes included the usage of ACP billing codes, designation of a surrogate decision maker, and ACP legal form documentation. Exploratory outcomes included incident health care use. Results: Among 759 randomized patients (mean age 77.7 years, 455 women [59.9%]), the nurse navigator-led ACP pathway resulted in a higher rate of ACP documentation (42.2% vs 3.7%, P < .001) as compared with usual care. The ACP billing codes were used more frequently for patients randomized to the nurse navigator-led ACP pathway (25.3% vs 1.3%, P < .001). Patients randomized to the nurse navigator-led ACP pathway more frequently designated a surrogate decision maker (64% vs 35%, P < .001) and completed ACP legal forms (24.3% vs 10.0%, P < .001). During follow-up, the incidence of emergency department visits and inpatient hospitalizations was similar between the randomized groups (hazard ratio, 1.17; 95% CI, 0.92-1.50). Conclusions and Relevance: A nurse navigator-led ACP pathway integrated with a health care professional-facing EHR interface increased the frequency of ACP discussions and their documentation. Additional research will be required to evaluate whether increased EHR documentation leads to improvements in goal-concordant care. Trial Registration: ClinicalTrials.gov Identifier: NCT03609658.


Subject(s)
Accountable Care Organizations , Advance Care Planning , Patient Navigation , Aged , Aged, 80 and over , Electronic Health Records , Female , Humans , Male , Patient Care Team , Vulnerable Populations
17.
Am J Hosp Palliat Care ; 38(5): 432-440, 2021 May.
Article in English | MEDLINE | ID: mdl-32935548

ABSTRACT

BACKGROUND: Patients with end-stage renal disease (ESRD) have a high burden of physical and psychological symptoms. Many remain unrecognized for long periods of time, particularly in older adults. The best strategy to monitor patient-reported outcome measures (PROMs) has not been identified. OBJECTIVE: To assess the feasibility of implementing an iPad-based symptom assessment tool in older adults with ESRD on hemodialysis (HD). METHODS: We designed an iPad application-delivery system for collecting electronic PROMs (ePROMs). Patient's ≥60 years of age with ESRD on HD were recruited from a single outpatient dialysis unit. Feasibility was evaluated based on recruitment, retention, and the system usability score (SUS). Assessments were completed at baseline, 3 months, and 6 months after enrollment. ANOVA was used to assess longitudinal symptom variability. RESULTS: Twenty-two patients (49% recruitment rate) were enrolled, with an 82% retention at 6 months. Mean age was 69.4 years (SD 6.6), 63.6% were female, and 81.8% were African American. Participants reported minimal difficulty in using the app, with an overall SUS score of 77.6. There were no significant relationships between demographic characteristics (age, race, or education) and SUS. Baseline SF-12 physical score and SF-12 mental score were 40.4 (SD 9.1) and 33.9 (SD 6.7), respectively. No significant changes were seen in longitudinal ePROMs of pain, depression, or anxiety; but was seen in the dialysis symptom index. CONCLUSION: In older patients with ESRD, collection of iPad-based ePROMs is feasible. This process can overcome inefficiencies associated with paper questionnaires and enable systematic monitoring of symptom burden.


Subject(s)
Kidney Failure, Chronic , Aged , Electronics , Feasibility Studies , Female , Humans , Kidney Failure, Chronic/therapy , Patient Reported Outcome Measures , Quality of Life , Renal Dialysis
18.
West J Emerg Med ; 21(4): 935-942, 2020 Jul 08.
Article in English | MEDLINE | ID: mdl-32726267

ABSTRACT

INTRODUCTION: Inter-hospital transfer (IHT) patients have higher in-hospital mortality, higher healthcare costs, and worse outcomes compared to non-transferred patients. Goals of care (GoC) discussions prior to transfer are necessary in patients at high risk for decline to ensure that the intended outcome of transfer is goal concordant. However, the frequency of these discussions is not well understood. This study was intended to assess the prevalence of GoC discussions in IHT patients with early mortality, defined as death within 72 hours of transfer, and prevalence of primary diagnoses associated with in-hospital mortality. METHODS: This was a retrospective study of IHT patients aged 18 and older who died within 72 hours of transfer to Wake Forest Baptist Medical Center between October 1, 2016-October 2018. Documentation of GoC discussions within the electronic health record (EHR) prior to transfer was the primary outcome. We also assessed charts for primary diagnosis associated with in-hospital mortality, code status changes prior to death, in-hospital healthcare interventions, and frequency of palliative care consults. RESULTS: We included in this study a total of 298 patients, of whom only 10.1% had documented GoC discussion prior to transfer. Sepsis (29.9%), respiratory failure (28.2%), and cardiac arrest (27.5%) were the top three diagnoses associated with in-hospital mortality, and 73.2% of the patients transitioned to comfort measures prior to death. After transfer, 18.1% of patients had invasive procedures performed with 9.7% undergoing major surgery. Palliative care consultation occurred in only 4.4%. CONCLUSION: The majority (89.9%) of IHT patients with early mortality did not have GoC discussion documented within EHR prior to transfer, although most transitioned to comfort measures prior to their deaths, highlighting that additional work is needed in this area.


Subject(s)
Clinical Decision-Making/methods , Hospital Mortality , Patient Care Planning/standards , Patient Comfort , Patient Transfer , Adult , Aged , Cause of Death , Electronic Health Records/statistics & numerical data , Female , Health Services Needs and Demand , Humans , Male , North Carolina/epidemiology , Patient Comfort/methods , Patient Comfort/standards , Patient Transfer/standards , Patient Transfer/statistics & numerical data , Retrospective Studies , Risk Adjustment
19.
Am J Hosp Palliat Care ; 37(12): 1004-1008, 2020 Dec.
Article in English | MEDLINE | ID: mdl-32115994

ABSTRACT

Opportunities for expanding advance care planning (ACP) throughout the health-care system make it critical that primary care (PC) providers have a basic understanding of how the electronic health record (EHR) can aid promoting ACP discussions and documentation. This article will offer PC providers 5 useful tips for implementing ACP in outpatient settings utilizing the EHR.


Subject(s)
Advance Care Planning , Documentation , Electronic Health Records , Documentation/methods , Health Personnel , Humans
20.
Clin Lung Cancer ; 21(3): 255-263.e4, 2020 05.
Article in English | MEDLINE | ID: mdl-31917067

ABSTRACT

INTRODUCTION: Immunotherapy and chemoimmunotherapy clinical trials for metastatic non-small-cell lung cancer (mNSCLC) have generally excluded patients with poor performance status (PS) and have utilized patient-reported measures that could miss some symptoms associated with immunotherapy. The goals of this study were to describe quality of life and symptom burden among mNSCLC patients receiving immunotherapy in clinical practice, and to examine burden by Eastern Cooperative Oncology Group performance status (ECOG PS) and age. PATIENTS AND METHODS: Between 2017 and 2018, mNSCLC patients receiving immuno/chemoimmunotherapy at an academic medical center completed the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC-QLQ-C30) and the National Cancer Institute Patient Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). Univariate and bivariate analyses described EORTC-QLQ-C30 subscales and the proportion reporting at least moderate PRO-CTCAE symptoms, and compared scores by ECOG PS (0/1 vs. 2/3) and age (< 70 vs. ≥ 70 years). RESULTS: Sixty patients (60% female; 75% < 70 years old; 68% ECOG PS 0/1; 57% receiving single-agent immunotherapy) participated. The mean EORTC-QLQ-C30 global health score was 62.6; EORTC symptoms were highest for fatigue, insomnia, dyspnea, and financial concerns (all > 30). Global health and pain were worse in ECOG PS 2/3 patients. For PRO-CTCAE, 20% to 40% reported at least moderate gastrointestinal, respiratory, dermatologic, arthralgia, or myalgia symptoms. The PRO-CTCAE pain score was higher among ECOG PS 2/3 patients. CONCLUSION: In clinical practice, global health was largely comparable to published clinical trials, but PRO-CTCAE items indicated a higher symptom prevalence. Closer monitoring of symptoms is warranted in ECOG PS 2/3 patients.


Subject(s)
Carcinoma, Non-Small-Cell Lung/mortality , Immune Checkpoint Inhibitors/therapeutic use , Immunotherapy/mortality , Lung Neoplasms/mortality , Patient Reported Outcome Measures , Practice Patterns, Physicians'/statistics & numerical data , Adult , Aged , Aged, 80 and over , Carcinoma, Non-Small-Cell Lung/drug therapy , Carcinoma, Non-Small-Cell Lung/immunology , Carcinoma, Non-Small-Cell Lung/secondary , Cross-Sectional Studies , Female , Follow-Up Studies , Humans , Lung Neoplasms/drug therapy , Lung Neoplasms/immunology , Lung Neoplasms/pathology , Male , Middle Aged , Prognosis , Survival Rate
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