Outpatient Palliative Care Program Research Articles

Advance care planning and predictive factors among Brazilian patients with cancer from an outpatient palliative care program.

e24062 Background: Advance care planning (ACP) is crucial for informed decision-making in patient care. However, barriers such as time constraints and discomfort with discussions hinder widespread ACP adoption. A previous study (Cohen et al. JNCCN 2023) indicated a low ACP engagement rate (17%), but participation in a palliative care program has shown potential to increase this proportion. Therefore, we sought to determine the prevalence of ACP and identify associated predictor factors among patients with cancer in Brazil enrolled in an outpatient palliative care (OPC) program. Methods: A retrospective analysis was performed from November 2022 to December 2023. Eligible patients were those who passed away during the study period and had received care from an OPC program at one of the largest private joint cancer centers in Latin America. We assessed the prevalence of ACP and explored its potential associations with clinical characteristics (age, gender and type of cancer), OCP support (follow-up period, appointments and family support), and end-of-life care (treatment in the past month, intensive care unit (ICU) admission in the past month, home care service referrals, and place of death).Comparative analyses involved two groups: those who had undergone ACP and those who had not (no-ACP). Logistic models were employed. Results: A total of 849 patients were included in the final analyses. Patients’ characteristics were well balanced between groups. Most patients were women (56%), with an average of 68.2 years (SD =15.3). Patients were mostly diagnosed with gastrointestinal (36%), breast (13%), and lung (13%) cancers. Notably, 43% of patients had ACP, significantly higher than literature controls (95% confidence interval [CI]= 22-31%, P = 0.001). Among the factors associated with ACP, clinical characteristics were not significant. However, OCP support and end-of-life care were significantly predicted by ACP, including the follow-up period (MACP= 179 vs. Mno-ACP= 101; P = 0.001), family support (MACP= 0.6 vs. Mno-ACP= 0.3; P < 0.001) , ICU admission at the last 30 days of life (ACP = 28% vs. no-ACP = 72%; P < 0.001), and home care service referral (ACP = 72% vs. no-ACP = 28%; P < 0.001). Conclusions: These findings underscore that prolonged engagement with the OPC program is associated with increased adoption of ACP among Brazilian patients with cancer. Given the scarcity of data from developing countries, our findings suggest that the OPC program plays a pivotal role in optimizing end-of life care support through ACP.

Outpatient Palliative Care Program: Impact on Home Death Rate in Brazil.

While the positive impact of early palliative care on the quality of life of cancer patients is well established, there is a noticeable research gap in developing countries. This study sought to determine the impact of an outpatient palliative care (OPC) program on the location of death among patients in Brazil. This was a retrospective study including patients with cancer who died between January 2022 and December 2022 in 32 private cancer centers in Brazil. Data were collected from medical records, encompassing demographics, cancer characteristics, and participation in the OPC program. The study involved 1980 patients, of which 32.3% were in the OPC program. OPC patients were predominantly younger (average age at death of 66.8 vs. 68.0 years old, p = 0.039) and composed of women (59.4% vs. 51.3%, p = 0.019) compared to the no-OPC patients. OPC patients had more home/hospice deaths (19.6% vs. 10.4%, p < 0.001), and participation in the outpatient palliative care program strongly predicted home death (OR: 2.02, 95% CI: 1.54-2.64). Our findings suggest a significant impact of the OPC program on increasing home and hospice deaths among patients with cancer in our sample. These findings emphasize the potential of specialized OPC programs to enhance end-of-life care, particularly in low-resource countries facing challenges related to social and cultural dimensions of care and healthcare access.

Experiences with Telehealth for Outpatient Palliative Care: Findings from a Mixed-Methods Study of Patients and Providers across the United States.

Background: The COVID-19 pandemic introduced a rapid adoption and scale-up of telehealth for palliative care services in the United Sates. Objectives: To examine and compare in-person versus telehealth experience among outpatient palliative care programs and patients. Design: Mixed-methods study (1) comparing patient experience survey data received between September 2020 and February 2021 from patients who received only in-person care versus those who received only telehealth and (2) qualitative interviews with outpatient palliative care providers. Data for this study were collected as part of a larger effort to develop quality measures for outpatient palliative care in the United States. Setting/Subjects: Outpatient palliative care patients and programs. Measurements: We measured patients' experiences of "feeling heard and understood" by their palliative care provider and team and their overall rating of their provider and team. We also conducted in-depth semistructured interviews with 47 palliative care providers across 25 outpatient palliative care programs. Results: Of 1753 patient experience surveys, 26% reflected telehealth only versus 74% in-person only. Patients in both groups reported highly positive experiences; there were no differences in "feeling heard and understood" or the overall ratings of the provider and team between the telehealth-only and in-person-only groups. Palliative care program leaders described the benefits and challenges of telehealth, including increased efficiency, the ability to incorporate family members, and challenges conducting a physical examination. Conclusion: Data from this study provide preliminary evidence of overall positive experiences of telehealth for outpatient palliative care among patients and providers; future research is needed to examine the sustainability of telehealth for palliative care.

Incorporating the Patient and Caregiver Voice in Palliative Care Quality Measure Development

ContextDespite rapid growth in outpatient palliative care, we lack an understanding of patient and caregiver experiences of care received in this context. ObjectivesAs part of a national effort to develop palliative care quality metrics for use in accountability programs, we sought to develop survey items assessing patients’ experiences of outpatient palliative care, incorporating the patient's voice. MethodsWe conducted 25 one-hour telephone cognitive interviews using a convenience sample of outpatient palliative care patients and caregivers to cognitively test survey items. Guided by a semi-structured protocol, we assessed the comprehensibility, ambiguity, and adaptability of survey instructions and specific items/response options. ResultsParticipants generally understood the intended meaning of the question content. Some participants struggled with the stated time period of three months as a reference period for reporting their experiences. While some expressed preferences for question wording, no clear patterns emerged across participants. ConclusionIn general, question wording and response options did not present challenges to understanding content. Respondents ascribed a variety of meanings to the concepts, validating that the measures capture a range of experiences. However, the referenced timeframe of three months was more difficult to answer for some questions than others. Implications for research, policy or practice: Based on the findings from the cognitive testing, the survey items are being tested as part of a national study to understand the quality of care for patients. These measures may be used in the future by Medicare to help outpatient palliative care programs improve their care.

The Value of an Embedded Outpatient Palliative Care Program in Malignant Hematology: Concurrent Care and the Impact on Health Care Utilization

Background: Patients with hematologic malignancies are less likely to be referred to palliative care (PC) compared to those with solid malignancies. There is little that is known about the healthcare utilization of patients with hematologic malignancies who receive outpatient PC concurrently with cancer-directed therapy. The aim of this study was to describe the demographic and clinical characteristics and health care utilization of patients with hematologic malignancies who received longitudinal, concurrent outpatient PC. Methods: We conducted a single-center, retrospective cohort study of all patients with hematologic malignancies who received embedded outpatient PC at the malignant hematology clinic between April 1, 2017 and December 31, 2018. Patients were referred to PC by their primary oncologist or hematology nurse practitioner (NP). Patients referred to PC were seen by a PC NP with expertise in hematologic malignancies. Follow-up visits with the outpatient PC NP were scheduled as needed. Demographics, clinical characteristics, and reasons for referral were extracted from the electronic health record. For patients who were followed by PC for at least 6 months, the number of hospitalizations and emergency department (ED) visits, as well as inpatient costs were compared from the 6 months prior to enrollment in PC to the 6 months after enrollment in PC. Approval for this study was obtained from the UCSF IRB. Results: Overall, 80 patients who were seen in the malignant hematology clinic were referred for embedded PC during our study period. Of these patients, 45% (n= 36) were female. Median age was 57 years (range: 27-89). Common primary diagnoses were myeloma (47.3%, n= 38), lymphoma (18.8%, n= 15), and acute myeloid leukemia (15%, n= 12). The most frequent reasons for referral to PC were pain (32.7%, n= 34), fatigue (16.3%, n= 17), and mood disorders (11.5%, n= 12). There were 9 referrals (8.7%) for advance care planning prior to bone marrow transplant (BMT). One quarter of the patients (n= 20) were referred to PC for two or more reasons. Patients were followed in the PC clinic for a median of 3.18 months (mean 8.03 months, range 0 - 36 months, SD 9.6 months) and patients had a median of 3 PC visits (mean 5, range 1-27, SD 6). The median overall survival of the patient population was 36.5 months (SD 35.8 months). There were 31 patients who were followed in the PC clinic for at least 6 months and were included in our healthcare utilization analyses. The total number of hospital encounters decreased from 1.48 inpatient admissions/ED visits in the 6-months before enrollment in PC to 0.71 per patient in the 6-months after enrollment in PC (p=0.04). Total inpatient direct costs per patient were $52,250.65 in the 6 months before PC enrollment and $30,360.90 in the 6 months after enrollment (p=0.18). The cost of inpatient medical hospitalizations went from $23,457.68 to $4,621.26 per patient (p=0.05), the cost of procedure-based hospitalizations, which included hospitalization for BMT, went from $27,667.84 to $25,434.48 (p=0.90), and the cost of ED visits went from $1,125.13 to $305.16 (p=0.25). Conclusion: Our study suggests that outpatient PC has an important role for patients with hematologic malignancies far upstream of the end-of-life period. Patients were referred for a wide variety of reasons, including management of various symptoms and advance care planning prior to BMT. There was a statistically significant and substantial decrease in the number of hospital and ED encounters per patient after enrollment in PC. There was also a trend towards overall cost savings, although this did not reach statistical significance. Further research is warranted to explore the effects of outpatient PC co-management on symptoms, rates of advance care planning, and patient/family experience for patients with hematologic malignancies. Disclosures Schoenbeck: American Society of Hematology: Research Funding. Mannis:Glycomimetics, Forty Seven, Inc, Jazz Pharmaceuticals: Research Funding; AbbVie, Agios, Bristol-Myers Squibb, Genentech: Consultancy.

Improvements needed in palliative care services.

Improvements needed in palliative care services.

Correlates of spiritual wellbeing in persons living with Parkinson disease.

Spirituality influences chronic disease coping skills through both positive and negative means. Although previous research notes similar associations between faith and Parkinson disease (PD) management, little is known about spirituality in the context of PD management in a palliative setting. The purpose of this paper is to gain a better understanding of the association between spirituality and PD management to best maximize the effect of spiritual counseling in treatment of the disease. This is a cross-sectional analysis of the baseline data of a larger randomized, controlled trial. Individuals with PD and their caregivers were recruited from three study sites with currently-operating outpatient movement disorders and palliative care programs. Correlations were conducted between FACIT total scores and subscales with hypothesized associative factors, such as quality of life (QOL), mood and cognition, advance care planning, and physical symptoms. Two-hundred and ten PD patients and 175 caregivers participated in the study. FACIT scores correlated positively with older age, existence of a caregiver, and involvement in support groups. Higher spirituality was associated with less impairment in QOL, lower anxiety, lower depression, fewer non-motor symptoms, reduced palliative symptoms, and less prolonged grief. There was no significant association between patient FACIT scores and the MDS UPDRS or MoCA scores. These results highlight the influences of spirituality in PD management and further support the holistic, interdisciplinary care provided to PD patients through palliative care teams offering chaplaincy support to patients.

Impact of the caregiver burden on the effectiveness of a home-based palliative care program: A mediation analysis.

The growing aging population and the high prevalence of several concomitant chronic diseases have contributed to the elevated rates of caregiver burden and suffering in patients. In turn, intending to relieve unnecessary pain in patients, there has been a rapid growth of outpatient palliative care programs. However, little has been studied about caregiver burden as a relevant factor potentially affecting the effectiveness of these programs. This study aimed to determine the extent of caregiver burden as a possible mediator on the effectiveness of a home-based palliative care program. Sixty-six palliative patients (56% women; mean age + SD = 71, 6 ± 17.7) and their caregivers were assessed with measures for physical, emotional, and psychological symptoms before and 1 month after the start of a home-based palliative care program. The association between caregiver burden and palliative outcomes was corroborated with a categorical regression model (p < 0.01). Caregiver burden was found to be a significant mediator in the relationship between outcome measures for palliative care at baseline and after 1 month of enrollment in the program. To our knowledge, this is the first study to assess the role of caregiver burden in the effectiveness of a home-based palliative care program. Although further work is required, the results indicate that a patient-focused intervention does not have the same beneficial effect if the caregiver burden is not addressed. Future home-based palliative care programs should focus on caregivers as well as patients, with particular attention to psychosocial intervention on caregivers.

Revenues from Patient Encounters and Establishment of an Outpatient Palliative Care Program in a Community Oncology Practice.

Background: There is increasing interest in expanding palliative care (PC) services in the community-based outpatient oncology clinic. However, there is a paucity of data on the economics of integrating palliative medicine in this setting. Objective: Provide scheduling and financial data on PC physician encounters, charges, and reimbursement in a community-based oncology practice. Design: Retrospective review of billing data and scheduling software at a single practice. Setting: A community-based oncology practice comprised of 25 medical oncologists in 8 suburban offices. PC physicians were integrated into the practice. Measurement: Billed PC physician charges were analyzed on an annual basis for a four-year period from initial start-up of the PC clinic on September 2, 2014 to August 31, 2018. Results: During year 1, a single PC physician saw 483 new patients and 827 follow-up encounters in four different office locations. In year 2, he saw 471 new patients and 1229 follow-up encounters. Actual collected revenue for those 1700 encounters was $228,168. In year 3, a second PC physician was added and services were expanded to a total of six offices. In year 4, two PC physicians billed for 832 new encounters and 2450 follow-up encounters for a total collected revenue of $454,356. Conclusions: In a suburban community-based oncology practice, a PC physician can support a substantial part of his or her cost to an oncology practice.

A Longitudinal Pilot Study for Examining Symptom Reduction in Patients With Cancer in a Palliative Care Program: A Primarily Rural Northeast Texas Population

Many patients with cancer live in rural areas and research is lacking on the efficacy of palliative care programs in rural community settings. This pilot study was conducted in a primarily rural setting where healthcare professionals delivered palliative care to 52 mostly lower income patients with a variety of cancers. They were assessed for physical, financial, psychosocial and overall symptom intensity at baseline and at three consequent assessments. This pilot study demonstrated the potential efficacy of an outpatient palliative care program in a mostly rural setting in the reduction of physical, psychosocial, and overall symptom intensity in patients with cancer.

Build It and They Will Come: Outcomes of Developing a Palliative Care Identification and Machine Learning Algorithm (FR403)

•Discuss how development of a software tool can drive development of inpatient and outpatient palliative care programs.•Discuss Algorithms 101.•Discuss ‘lessons learned’ and results of going live with a Palliative Care Algorithm in the acute care setting. One of the largest barriers for seriously ill patients, is timely identification of Palliative Care needs. In the acute care setting, many admitting and consulting physicians struggle with identification of appropriate patients. Intermountain Healthcare and Ascension Health, in collaboration with an electronic medical record company, developed an electronic Palliative Care identification algorithm, or trigger, which leverages historical and near real-time data to identify patients that would benefit from Palliative Care services. This project allowed several iterations of the algorithm, which ran in ‘silent mode’ in the electronic medical record. Over time, accuracy has improved with a current positive predictive value of 80%. It has identified nearly 26% of this 310 bed hospital’s adult population as appropriate for Palliative Care services. This algorithm led to accurate data for program development and resource allocation at Intermountain Healthcare. Ascension’s St. John Providence Hospital has utilized this same Palliative Care identification algorithm in a live clinical setting since April 2017. Many lessons were learned at both the algorithm development and the deployment state which can benefit others hoping to utilize similar methods. Due to the high volume of patients and staffing capacity of most palliative care programs, risk stratification for identified patients will be necessary. Therefore, development is underway for a machine learning algorithm to help assign a risk score to each patient identified as appropriate for palliative care services. This stratification will allow for appropriate resource allocation, identification and education about primary Palliative Care, and further adjustments to the electronic solution to help embed Palliative Care throughout the healthcare continuum. This presentation reviews the current state of an ongoing collaborative project between a major electronic medical record company and multiple large healthcare systems, as well as the lessons learned in the technology and healthcare delivery industries.

Surgical and Perioperative Palliative Care: Updates from 2018 (TH307)

•Cite recently published literature on evidence and best practices for palliative care interventions in surgical patients.•Discuss areas of active surgical palliative care investigation in the context of common treatment dilemmas faced while caring for seriously ill patients with surgical disease.•Describe the application of surgical palliative care research and its impact on patient, family, and caregiver outcomes using concrete examples. Recent years have seen rapid expansion of the evidence base supporting the implementation of palliative care programs across health systems, ranging from the community to the intensive care unit. Surgical patients face uniquely complex decisions, significant symptom burden, and prognostic uncertainty, and their needs warrant surgery-specific palliative care delivery. Different models have been developed to address these needs, including communication training for surgical providers, embedded inpatient and outpatient surgical palliative care programs, improved prognostication models, and advanced care planning interventions. The core principles of surgery and anesthesiology closely mirror those of palliative care, and the intersection between them is characterized by an increasing annual volume of emerging research. This session will summarize landmark peer-reviewed papers on surgical palliative care published in 2018. The authors will search PubMed and hand-review key journals in surgery, anesthesiology, critical care, and palliative medicine to identify and select articles for inclusion based on journal impact factor and broad interest to the AAHPM/HPNA audience. Using a case-based format to provide clinical context, the panel will present literature drawn from the following topic domains: communication around surgical decision-making, frailty and surgical risk assessment, perioperative advanced care planning, specialty palliative care triggers and delivery models for surgical patients, innovative caregiver and clinician education strategies, and novel symptom management approaches applicable to surgical patient populations. The presenters consist of an HPM fellowship-trained practicing general surgeon and HPM-focused anesthesiologist, an HPM social worker with a specialized practice in surgical oncology and critical care, and an HPM physician whose clinical and academic interests are focused on surgical patient populations. The cross-specialty representation of the panelists ensures a diversity of perspectives that will enrich the audience’s appreciation for the role of surgical palliative care research in improving the outcomes of patients and families facing surgical illness across an array of care settings.

Analog Care in a Digital World: Telemedicine in Outpatient Palliative Care (SA508)

•Compare between an ambulatory in-person palliative care visit and a telemedicine palliative care visit conducted between two clinical sites.•Describe how clinicians can promote a therapeutic alliance within a telemedicine visit.•Deepen knowledge of oncology patient’s perception of telemedicine visits. Interest in telemedicine continues to rise in conjunction with advancements in technology, improving reimbursement, and growing demands by patients and families. For patients with life limiting illnesses, additional clinician visits separated in time and location can represent a significant burden to quality of life. The use of telemedicine in outpatient palliative care holds the promise of improving access to palliative care while allowing patients to stay closer to home. Understanding patient’s perceptions regarding satisfaction and acceptability are the first steps for meaningful expansion of telemedicine. While prior work in telemedicine has focused on deploying this technology to patients in rural or remote areas, patients within an urban metropolitan area can experience difficulty in accessing palliative care specialists. Memorial Sloan Kettering Cancer Center has an expansive regional network in Westchester County, Long Island, and New Jersey. Patients who live in these regions are required to travel into Manhattan to receive ambulatory palliative care. In this concurrent session, we will share how we created an outpatient telemedicine palliative care program within our regional network that complements our current in-person ambulatory practice. Our physicians and nursing staff will share their perspectives on providing empathetic care within a digital space. We will describe the fundamental differences between telemedicine and in-person ambulatory visits from both a patient and clinician perspective. Utilizing data from patient surveys we will also examine whether these differences affect the patient’s overall experience with telemedicine. Understanding patient’s acceptability and satisfaction with telemedicine visits was key in the development of our current program and we will share our most up to date patient data. Lastly, we will consider the feasibility factors that should be kept in mind when thinking about expansion of telemedicine within your own institution.

Impact of Interdisciplinary Outpatient Specialty Palliative Care on Survival and Quality of Life in Adults With Advanced Cancer: A Meta-Analysis of Randomized Controlled Trials.

In advanced cancer, patients want to know how their care options may affect survival and quality of life, but the impact of outpatient specialty palliative care on these outcomes in cancer is uncertain. To estimate the impact of outpatient specialty palliative care programs on survival and quality of life in adults with advanced cancer. Following PRISMA guidelines, we conducted a systematic review and meta-analysis of randomized controlled trials comparing outpatient specialty palliative care with usual care in adults with advanced cancer. Primary outcomes were 1 year survival and quality of life. Analyses were stratified to compare preliminary studies against higher-quality studies. Secondary outcomes were survival at other endpoints and physical and psychological quality-of-life measures. From 2,307 records, we identified nine studies for review, including five high-quality studies. In the three high-quality studies with long-term survival data (n = 646), patients randomized to outpatient specialty palliative care had a 14% absolute increase in 1 year survival relative to controls (56% vs. 42%, p < .001). The survival advantage was also observed at 6, 9, 15, and 18 months, and median survival was 4.56 months longer (14.55 vs. 9.99 months). In the five high-quality studies with quality-of-life data (n = 1,398), outpatient specialty palliative care improved quality-of-life relative to controls (g = .18, p < .001), including for physical and psychological measures. Patients with advanced cancer randomized to receive outpatient specialty palliative care lived longer and had better quality of life. Findings have implications for improving care in advanced cancer.

A Process Evaluation of an Outpatient Palliative Care Program: A Quality Improvement Project.

Palliative care has evolved from providing care for patients near end of life into a specialized discipline focused on addressing the physical, emotional, social, and spiritual needs of patients throughout the trajectory of an illness. For patients with metastatic cancer, timely referrals to palliative care are essential in order to have a meaningful impact on their quality of life. Recommendations for screening patients for palliative care have been offered by professional organizations; however, screening all patients with metastatic cancer poses many challenges. This quality improvement project conducted a process evaluation of an outpatient palliative care program and evaluated the feasibility of utilizing a screening tool in an effort to readily identify patients with metastatic cancer who have palliative care needs in an outpatient cancer center. Although nurses' compliance with the screening tool was less than expected, screening for palliative care needs in this setting resulted in more referrals to palliative care compared with physician referrals. Improvements in quality of life were found in patients who received a palliative care consultation, and patients were very satisfied with the care provided by palliative care. The potential for financial improvements was observed as a result of this project.

Filling the Gap: Creating an Outpatient Palliative Care Program in Your Institution.

Well-designed, randomized trials demonstrate that outpatient palliative care improves symptom burden and quality of life (QOL) while it reduces unnecessary health care use in patients with cancer. Despite the strong evidence of benefit and ASCO recommendations, implementation of outpatient palliative care, especially in community oncology settings, faces considerable hurdles. This article, which is based on published literature and expert opinion, presents practical strategies to help oncologists make a strong clinical and fiscal case for outpatient palliative care. This article outlines key considerations for how to build an outpatient palliative care program in an institution by (1) defining the scope and benefits; (2) identifying strategies to overcome common barriers to integration of outpatient palliative care into cancer care; (3) outlining a business case; (4) describing successful models of outpatient palliative care; and (5) examining important factors in design and operation of a palliative care clinic. The advantages and disadvantages of different delivery models (e.g., embedded vs. independent) and different methods of referral (triggered vs. physician discretion) are reviewed. Strategies to make the case for outpatient palliative care that align with institutional values and/or are supported by local institutional data on cost savings are included.

Building a Palliative Care Clinic: Lessons from Real Life (P11)

•Compare different examples of successful palliative care clinics in order to design a model suited to your practice setting.•Describe essential aspects of operating a palliative care clinic including: a business plan, marketing strategy, opioid and prescribing policies, clinic workflow and staffing.•Apply appropriate methods of billing & coding to maximize productivity. As the benefits of early palliative care are increasingly recognized, expanding into the outpatient arena is a logical next step for many programs. However, palliative care remains far less prevalent in the ambulatory setting than in the hospital, and practice models vary widely (Hui et al., 2010). Drawing on the real-life challenges and successes of several programs that employ different models of care and operate in a variety of healthcare settings, this workshop will equip participants with the tools to build or expand a palliative care clinic practice. The workshop will focus on the core considerations needed to design, implement and expand a successful outpatient palliative care program. The models discussed will include academic & non-academic programs, and embedded, co-located & free-standing clinics. The first half of the workshop will use didactic and interactive teaching methods to review basic information for determining the optimal practice model and location of the clinic, engaging key stakeholders, the basics of creating the business proposition, anticipating staffing and productivity expectations (including utilizing a multidisciplinary team) and considerations for integrating into the broader healthcare system. The second half of the workshop will use a small group format and participants will rotate through 3 of 6 stations, which will offer a more in-depth discussion of staffing, clinic management principles (including referral management and creation of policies & procedures), measuring success, and managing clinic expansion. All participants will be provided with information for each of the stations, and by the end of the workshop will have an actionable resource toolkit to take back to their home institution. The final portion of the workshop will include a session on billing and coding, and facilitators from established outpatient palliative care programs will share their successes and challenges.

Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care

ContextPediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life care, and their families. ObjectivesThis study examines the psychometrics of and respondents' perceptions about the PCNeeds. MethodsParents of children in four outpatient pediatric palliative care programs completed the PCNeeds and the World Health Organization Quality of Life–Brief tool (WHOQOL-BREF). Parents answered questions about demographics and the experience of completing the PCNeeds. Internal scale reliability was measured with Cronbach's alpha. Validity was assessed by correlating the PCNeeds total and subscale scores with the WHOQOL-BREF subscales. Additional respondent perceptions were obtained via written comments and analyzed using content analysis. ResultsThe 93 respondents were predominantly female (n = 69, 74%); white (n = 79, 85%); college graduates (n = 71, 76%); and married or partnered (n = 75, 81%). Internal reliability was acceptable (Cronbach's α = 0.83), and validity correlations with the WHOQOL-BREF subscales were consistent with theoretical expectations (moderate negative correlations ranging from −0.36 to −0.51). The most frequently cited need not addressed by our survey was sibling impact (n = 17, 18%). Twelve parents (13%) indicated that no content was missing. The least met needs were financial impact, family impact, and the child's physical problems besides pain. Sixty-eight percent of parents (n = 63) rated completion of the survey as “easy” or “very easy.” ConclusionInitial psychometric analysis of the PCNeeds is encouraging, but further study of reliability and validity with more diverse respondents is needed.

Hospitalization Rates and Predictors of Rehospitalization Among Individuals With Advanced Cancer in the Year After Diagnosis.

Purpose Among individuals with advanced cancer, frequent hospitalization increasingly is viewed as a hallmark of poor-quality care. We examined hospitalization rates and individual- and hospital-level predictors of rehospitalization among individuals with advanced cancer in the year after diagnosis. Methods Individuals diagnosed with advanced breast, colorectal, non-small-cell lung, or pancreatic cancer from 2009 to 2012 (N = 25,032) were identified with data from the California Cancer Registry (CCR). After linkage with inpatient discharge data, multistate and log-linear Poisson regression models were used to calculate hospitalization rates and to model rehospitalization in the year after diagnosis, accounting for survival. Results In the year after diagnosis, 71% of individuals with advanced cancer were hospitalized, 16% had three or more hospitalizations, and 64% of hospitalizations originated in the emergency department. Rehospitalization rates were significantly associated with black non-Hispanic (incidence rate ratio [IRR], 1.29; 95% CI, 1.17 to 1.42) and Hispanic (IRR, 1.11; 95% CI, 1.03 to 1.20) race/ethnicity; public insurance (IRR, 1.37; 95% CI, 1.23 to 1.47) and no insurance (IRR, 1.17; 95% CI, 1.02 to 1.35); lower socioeconomic status quintiles (IRRs, 1.09 to 1.29); comorbidities (IRRs, 1.13 to 1.59); and pancreatic (IRR, 2.07; 95% CI, 1.95 to 2.20) and non-small-cell lung (IRR, 1.69; 95% CI, 1.54 to 1.86) cancers versus colorectal cancer. Rehospitalization rates were significantly lower after discharge from a hospital that had an outpatient palliative care program (IRR, 0.90; 95% CI, 0.83 to 0.97) and were higher after discharge from a for-profit hospital (IRR, 1.33; 95% CI, 1.14 to 1.56). Conclusion Individuals with advanced cancer experience a heavy burden of hospitalization in the year after diagnosis. Efforts to reduce hospitalization and provide care congruent with patient preferences might target individuals at higher risk. Future work might explore access to palliative care in the community and related health care use among individuals with advanced cancer.

PROMOTING ADVANCE CARE PLANNING IN COPD

Purpose: Chronic Obstructive Pulmonary Disease (COPD) is one of the few causes of mortality and COPD patients are increasing especially aged 75 years and older in Japan. Advance care planning (ACP), which involves patients-provider communication about end-of-life care, is important for COPD patients to promote end-of-life discussion. This study reviewed completion rates of advance directives (AD) and related factors to ACP discussion in COPD patients. Methods: A systematic review was conducted searching of PubMed and CINAHL from 1992 to 30 June 2016. Keywords such as “Chronic Obstructive Pulmonary Disease (COPD)”, “advance care planning”, “advance directives”, “completion”, “factors”, and “predictors” were used to select the articles. Abstracts of the search results were reviewed according to inclusion criteria which described completion rates of AD and factors related to ACP process. Results: Ten articles were included for the review regarding the study purpose. Qualitative research design was used 5 studies of 10. Completion rates of AD were from 17% to 61%. A study of outpatient palliative care program for COPD reported that documented advance care plan at the initial appointment 0% changed 61% at follow-up. A multicenter, prospective, longitudinal study showed preferences regarding CPR or MV changed in 38.3% of the patients during the follow-up period, and related factors were generic health status, mobility, symptoms of anxiety and depression. Conclusion: AD Completion rates and factors related to ACP process were well-not examined in COPD. Professional support to COPD patients is important, therefore, respiratory practitioners must choose the right time to promote ACP discussion.