Background: Early referral of cancer patients for palliative care significantly improves the quality of life. It is not clear which patients can benefit from an early referral, and when the referral should occur. A Delphi Panel study proposed 11 major criteria for an outpatient palliative care referral.
Objective: To operationalize major Delphi criteria in a cohort of lung cancer patients, using a prospective approach, by linking health administrative data.
Design: Population-based observational cohort study.
Setting/Subjects: The study population comprised 38,851 cases of lung cancer in the Ontario Cancer Registry, diagnosed from January 1, 2012, to December 31, 2016.
Measurements: We operationalized 6 of the 11 major criteria (4 diagnosis or prognosis based and 2 symptom based). Patients were considered eligible (index event) for palliative care if they qualified for any criterion. Among eligible patients, we identified those who received palliative care.
Results: Twenty-eight thousand one hundred sixty-four patients were eligible for palliative care by qualifying for either the diagnosis- or prognosis-based criteria (n = 21,036, 76.5%), or for symptom-based criteria (n = 7128, 23.5%). A total of 23,199 (82.4%) patients received palliative care. The median time from palliative care eligibility to the receipt of first palliative care or death or maximum study follow-up was 56 days (range = 17–348).
Conclusions: We operationalized six major criteria that identified the majority of lung cancer patients who were eligible for palliative care. Most eligible patients received the palliative care before death. Future research is warranted to test these criteria in other cancer populations.
PURPOSE: Guidelines recommend earlier advance care planning discussions focused on goals and values (serious illness communication) among oncology patients. We conducted a prospective, cross-sectional quality improvement evaluation of patients who had a serious illness conversation (SIC) with an oncology clinician using the Serious Illness Conversation Guide to understand patient perceptions of conversations using a structured guide.
METHODS: We contacted 66 oncology patients with an SIC documented in the electronic health record. Thirty-two patients (48%) responded to survey and/or structured interview questions by telephone. We used summary statistics and thematic analysis to analyze results.
RESULTS: Twenty-eight respondents (90%) reported that the SIC was worthwhile. Seventeen respondents (55%) reported that the conversation increased their understanding of their future health, and 18 (58%) reported that the conversation increased their sense of closeness with their clinician. Although the majority of respondents (28 [90%]) reported that the conversation increased (13 [42%]) or had no effect (15 [48%]) on their hopefulness, a small minority (3 [10%]) reported a decrease in hopefulness. Qualitative analysis revealed 6 themes: clinician-patient relationship, impact on well-being, memorable characteristics of the conversation, improved prognostic understanding, practical planning, and family communication.
CONCLUSION: SICs are generally acceptable to oncology patients (nonharmful to the vast majority, positive for many). Our qualitative analysis suggests a positive impact on prognostic understanding and end-of-life planning, but opportunities for improvement in the delivery of prognosis and preparing patients for SICs. Our data also identify a small cohort who responded negatively, highlighting an important area for future study.
INTRODUCTION: A high outpatient clinic no-show rate affects clinical outcomes, increases healthcare costs, and reduces both access to care and provider productivity. In an effort to reduce the no-show rate at a busy palliative medicine outpatient clinic, a quality improvement project was launched consisting of a telephone call made by clinic staff prior to appointments. The study aimed to determine the effect of this intervention on the no-show rate, and assess the financial impact of a decreased no-show rate.
METHODS AND MATERIALS: The outpatient clinic no-show rate was measured from September 1 to December 31, 2015. Data from the first 8 months of the calendar year was removed since these could not be verified. Starting January 1, 2016, patients received a telephone call reminder 24 hours prior to their scheduled outpatient appointment for confirmation. No-show rate was again measured for the calendar year 2016. Opportunity costs were calculated for unfulfilled clinic visits.
RESULTS: Of the 1224 completed visits from September 1 to December 31, 2015, 271 were no-shows with an average rate of 11.8%. After the intervention, there were 4368 completed visits and 562 no-shows. The no-show rate for 2016 averaged 6.9% (p < 0.001), down 4.9% from the last 4 months of 2015. Estimated opportunity costs were about 396 no-show visits avoided, equivalent to an annual savings of about $79,200.
CONCLUSION: A telephone call reminder to patients 24 hours prior to their appointment decreased the no-show rate in an outpatient palliative medicine clinic. Avoiding unfulfilled visits resulted in substantial opportunity costs.
Background: Early integration of palliative care (PC) for patients with heart failure (HF) improves patient outcomes and decreases health care utilization. PC provided outside of an acute hospitalization is not well understood.
Objective: To synthesize the literature of outpatient PC in HF to identify the current landscape, the impact on patient health outcomes, key stakeholders' perspectives, and future implications for research and practice.
Design: A systematic search of PubMed, Embase, CINAHL, Cochrane, and Web of Science was conducted from inception to February 2019 for studies of outpatient PC in adults with HF. Each study was analyzed to describe study characteristics, location of PC, types of providers involved, participant characteristics, and main findings, and to characterize domains of PC addressed.
Results: Most studies (N = 19) employed a quantitative design and were conducted in the United States. The most common locations of PC were the home or PC clinic and providers were mainly PC specialists. Outpatient PC improved quality of life, alleviated symptoms, and decreased rehospitalizations for patients with HF. No study addressed all eight domains of PC. The structural, physical, and psychological domains were commonly addressed, whereas, least commonly addressed domains were the cultural and ethical/legal domain. Women and ethnic minorities were underrepresented in the majority of samples.
Conclusions: This integrative review highlights the need to promote primary PC and future PC research focusing on a holistic, integrated, team-based approach addressing all domains of PC in representative samples.
Background: Although outpatient palliative care clinics (OPCCs) provide a venue for early, pre-emptive referral to palliative care on a routine basis, some patients will continue to require urgent referrals. The purpose of this study was to characterise these urgent referrals to determine whether they reflect clinical need or convenience.
Methods: We retrospectively compared new patients in an OPCC who were seen urgently versus those seen at routine appointments. Descriptive statistics compared the two groups in terms of clinical characteristics, referring teams, symptoms, performance status and outcomes. Logistic regression was used to identify factors associated with urgent referral to the OPCC. Overall survival was compared using the log-rank test.
Results: Between January 2016 and December 2017, a total of 113 urgent referrals were reviewed in the OPCC; these were compared with a random sample of 217 routine referrals. Patients seen urgently were more likely to be referred by surgical oncology, and to report worse symptom scores for pain (p=0.0007), tiredness (p=0.02), well-being (p=0.001), constipation (p=0.02) and sleep (p=0.01). More patients seen urgently required direct admission to hospital following the visit (17.7% vs 0.9%, p<0.001). Median survival was shorter for patients seen urgently (4.3 months, 95% CI 3.4 to 7.8) versus routinely (8.1 months, 95% CI 7.2 to 9.5).
Conclusions: Compared with routine referrals, new patients seen urgently in the OPCC had higher symptom burden, shorter median survival and a greater chance of direct admission to hospital. Palliative care clinics should consider how best to accommodate urgent referrals.
Background: Chronic breathlessness is a disabling syndrome that profoundly impacts patients’ and caregivers’ lives. Driving is important for most people, including those with advanced disease. Regular, low-dose, sustained-release morphine safely reduces breathlessness, but little is known about its impact on driving.
Aim: To understand patients’ and caregivers’ (1) perspectives and experiences of driving with chronic breathlessness; and (2) perceived impact of regular, low-dose, sustained-release morphine on driving.
Design: A qualitative study embedded in a pragmatic, phase III, randomised, placebo-controlled trial of low-dose, sustained-release morphine (<=32 mg/24 h) for chronic breathlessness. Semi-structured interviews were conducted immediately after participants withdrew or completed the randomised, placebo-controlled trial. Informed by grounded theory, a constant comparative approach to analysis was adopted.
Setting/participants: Participants were recruited from an outpatients palliative care service in Adelaide, Australia. Participants included patients (n = 13) with severe breathlessness associated with chronic obstructive pulmonary disease and their caregivers (n = 9).
Results: Participants were interviewed at home. Eleven received morphine 8–32 mg. Three themes emerged: (1) independence; (2) breathlessness’ impact on driving; and (3) driving while taking regular, low-dose, sustained-release morphine.
Conclusion: Driving contributed to a sense of identity and independence. Being able to drive increased the physical and social space available to patients and caregivers, their social engagement and well-being. Patients reported breathlessness at rest may impair driving skills, while the introduction of sustained-release morphine seemed to have no self-reported impact on driving. Investigating this last perception objectively, especially in terms of safety, is the subject of ongoing work.
Background: Integrated pediatric palliative oncology (PPO) outpatient models are emerging to assist oncologists, children, and families throughout their course with cancer. Significant time is devoted to care coordination (“nonbillable” time), but the scope, time per patient, and ratio of nonbillable to billable (NB:B) minutes are unknown. This information is crucial to designing new PPO outpatient clinics and advocating for appropriate personnel, physician time, and resources. Our objectives were to quantify nonbillable time and evaluate demographic or disease-based associations.
Methods: A single-institution one-day PPO clinic was started in July 2017. All encounters were tracked for 11 months. Administrative and PPO inpatient time were excluded. Billable and nonbillable minutes were recorded daily. Ratios of NB:B minutes by patient demographics and clinical factors were calculated using descriptive statistics and multivariate modeling.
Results: Ninety-five patients were included [solid tumors (42, 44%), brain tumors (33, 35%), and leukemia/lymphoma (20, 21%)]. PPO completed billable visits on 52 of 95 (55%) patients and assisted without billing in the care of 43 patients (45%). Twenty-four (25%) patients were deceased. Overall NB:B ratio was 1.04 and differed among diagnoses (leukemia/lymphoma 2.5, solid tumor 0.9, and brain tumor 0.8). Deceased patients had a higher ratio of NB:B minutes than alive patients (1.9 vs. 0.8, p = 0.012). Billable and nonbillable minutes both increased over time.
Conclusions: Care coordination in a PPO clinic is time intensive and grows with clinic volume. When devising a PPO outpatient program, this NB:B ratio should be accounted for in clinician time and personnel devoted to patient and family assistance.
Context: Limited access to opioids for cancer patients has been reported as a potential unintended consequence of recent regulations restricting opioid use and prescribing practices. To our knowledge, there are a limited number of peer-reviewed studies that evaluate cancer patients’ perceived difficulties when filling their opioid prescription. To understand these difficulties, we surveyed patients receiving opioids in our outpatient Supportive Care Center (SCC).
Objectives: The primary objective of this study was to evaluate cancer patients’ perceptions of overall difficulties when filling their opioid prescription. Secondary objectives included determining associations between patient characteristics and difficulty, and comparing difficulty between filling opioid and non-opioid prescriptions.
Methods: Cancer patients receiving opioids that had been seen two times or more at our SCC were asked to complete a survey. The information collected included patient demographics, clinical characteristics, and patients’ experiences filling their opioid prescription.
Results: The patients’ median age was 60 years; 54% were female and 69% were white. Forty-four patients (32%) reported that they have experienced difficulty filling their opioid prescription. More than 25% of those 44 patients perceived difficulty from interactions with the pharmacy/pharmacist. Forty-six patients (33%) reported more difficulty filling their opioid prescriptions than filling their non-opioid prescriptions.
Conclusions: This study provides evidence that patients with cancer visiting our SCC perceived difficulties obtaining their opioid prescriptions. The results suggest that negative interactions with the pharmacy/pharmacist contributes to their perceived difficulty. Additional research is needed to further characterize the contributors of the difficulties cancer patients face in filling their opioid prescriptions.
BACKGROUND: General practitioners (GPs) are important providers and coordinators of palliative home care (PHC). Through this double role, their perspectives and their treatment decisions influence PHC fundamentally. This study aims to gain deeper insights into GPs' perspectives regarding PHC in North Rhine, Germany.
METHODS: An explorative, semistructured focus group was conducted with 7 doctors. The researchers performed content analysis. Main topics were GPs' role definition in PHC and GPs' medical activities in PHC.
RESULTS: Participating GPs describe their role in PHC, based on high motivation and positive attitudes toward PHC as a hybrid role: coordinator, provider (mostly in general PHC), and referrer (gateway to palliative care [PC] specialists). According to GPs' medical activity, participants describe moderate expertise, demanding tasks, and elaborate PHC provision for GPs. Participants stressed the importance of PC in GPs' work. But also PC is a small field in general practice. GPs' PHC benefits from the deep trust resulting from the often close and long-term GP-patient relationship. Complexity and bureaucracy of PHC structures as well as the lack of resources and multidisciplinary cooperation are named as barriers for providing PHC. The highest level of care is reached in specialized PHC, which only very few, severely impaired patients need.
CONCLUSIONS: Participating GPs see themselves as important PHC providers as well as referrers and coordinators. Complexity and discontinuity in PC arrangements create challenges for their provision. Therefore, they long for reduced bureaucratic burdens.
Outpatient palliative care (PC) improved quality of life and symptoms among patients with Parkinson disease and related disorders in a trial in JAMA Neurology.
The study’s 210 patients and 175 caregivers were randomly assigned to outpatient integrative PC or to standard care. Every 3 months for a year, participants received PC visits either in person or via telemedicine from a neurologist, social worker, chaplain, and nurse with guidance from a palliative medicine specialist. Standard care was provided by a neurologist and a primary care clinician.
Objective: Women with advanced gynecologic cancer and malignant bowel obstruction (MBO) undergo repeated hospitalizations, experience feelings of isolation and abandonment, and often die in acute settings. Innovative outpatient models of care are needed to address the unmet needs of this population at the end-of-life. We implemented a novel supported self-management (SMS) program focused on increasing patients' skill and confidence in managing MBO proactively in the ambulatory setting.
Methods: We performed a qualitative descriptive study embedded in a prospective single-arm evaluative trial (Clinicaltrials.gov ID: NCT03260647) to understand the impact of this program on patients' sense of support, degree of distress, quality of care, and capacity to self-manage. Semi-structured interviews were completed and analysed using the Chronic Care Model as a theoretical framework. Data saturation was confirmed after 15 interviews.
Results: Fifteen patients (age range: 47–82) with diagnoses of advanced ovarian, endometrial, and cervical cancer were interviewed; 10 had died by end of follow-up, with a median interval from interview to death of 5 months. Patients were able to self-manage the: (i) medical aspects; (ii) psychological consequences, and (iii) changes in life roles and expectations resulting from their condition. Patients felt greatly supported, less isolated, and secure in their knowledge and ability to access care due to SMS. While patients understood their disease was not curative they did not fully appreciate that MBO signalled a significantly poorer prognosis.
Conclusion: Outpatient SMS interventions can be successfully implemented even for rapidly fatal conditions at the end-of-life and offer significant benefit to gynecologic cancer patients with MBO. Counselling should focus on the specific trajectory of MBO, and early palliative care referrals should be standard practice.
Objective: Meeting the preferences of patients is considered an important palliative care outcome. Prior studies reported that more than 80% of patients with terminally ill cancer prefer to die at home. The purpose of this study was to determine place-of-death preference among palliative care patients in the outpatient centre and the palliative care unit (PCU) of a comprehensive cancer centre.
Methods: A cross-sectional anonymous questionnaire was administered to patients with advanced cancer and caregivers (PCU and outpatient centre) between August 2012 and September 2014. PCU patients responded when there was no delirium and the primary caregiver responded when the patient was unable to respond. In the case of outpatients, dyads were assessed. The survey was repeated 1 month later.
Results: Overall, 65% preferred home death. There was less preference for home death among PCU patients (58%) than among outpatients (72%). Patient and caregiver agreement regarding preferred place of death for home was 86%. After 1 month, outpatients were significantly more likely than PCU patients to have the same preferred place of death as they had 1 month earlier (96% vs 83%; p=0.003).
Conclusions: Although home was the preferred place of death in our group of patients with advanced cancer and their caregivers, a substantial minority preferred hospital death or had no preference. We speculate that PCU patients’ higher preference for hospital death is likely related to more severe distress because they had already tried home care. Personalised assessment of place of death preference for both patient and caregiver is needed.
Introduction: Early access to cancer palliative care is recommended. Descriptions of structures and processes of outpatient palliative care clinics operated within smaller hospitals are scarce. This paper presents the development and operation of a fully integrated cancer and palliative care outpatient clinic at a local hospital in a rural region of Mid-Norway offering palliative care concurrent with cancer treatment. A standardized care pathway was applied.
Methods: Palliative care is in Norway part of the public healthcare system. Official recommendations recent years point out action points to improve delivery of palliative care. An integrated cancer and palliative care outpatient clinic at a local hospital and an innovative care delivery model was developed and operated in this setting. Patients were recruited for a descriptive study of the patient population. Clinical data were collected by clinical staff and 13 symptom intensities were reported by the patients.
Results: Cancer and palliative care were provided by one team of healthcare professionals trained in both fields. There was a close collaboration with the other departments at the hospital, with its affiliated tertiary hospital, and with community health and care services to provide timely referral, enhanced continuity, and improved coordination of care. Eighty-eight patients were included. Mean age was 65.6 years, the most common cancer diagnoses were digestive organs (22.7%), male genital organs (20.5%) or breast (25.0%), 75.0% had metastatic or locally advanced cancer, 59.1% were treated with non-curative intention and 93.1% had Karnofsky Performance Status = 80%. Median scores of individual symptoms ranged from 0 to 3 (numerical rating scale, 0–10) and 61.0% reported at least one clinically significant symptom rating (= 4).
Conclusion: This delivery model of integrated outpatient cancer and palliative care is particularly relevant in rural regions allowing cancer patients access to palliative care earlier in the disease trajectory and closer to home
PURPOSE: The median overall survival (OS) for metastatic pancreatic ductal adenocarcinoma (mPDAC) is < 1 year. Factors that contribute to quality of life during treatment are critical to quantify. One factor-time spent obtaining clinical services-is understudied. We quantified total outpatient time among patients with mPDAC receiving palliative systemic chemotherapy.
METHODS: We conducted a retrospective analysis using four patient-level time measures calculated from the medical record of patients with mPDAC receiving 5-fluorouracil infusion, leucovorin, oxaliplatin, and irinotecan; gemcitabine/nab-paclitaxel; or gemcitabine within the University of Pennsylvania Health System between January 1, 2011 and January 15, 2019. These included the total number of health care encounter days (any day with at least one visit) and total visit time. Total visit time represented the time spent receiving care (care time) plus time spent commuting and waiting for care (noncare time). We performed descriptive statistics on these outpatient time metrics and compared the number of encounter days to OS.
RESULTS: A total of 362 patients were identified (median age, 65 years; 52% male; 78% white; 62% received gemcitabine plus nab-paclitaxel). Median OS was 230.5 days (7.6 months), with 79% of patients deceased at the end of follow-up. On average, patients had 22 health care encounter days, accounting for 10% of their total days survived. Median visit time was 4.6 hours, of which 2.5 hours was spent commuting or waiting for care.
CONCLUSION: On average, patients receiving palliative chemotherapy for mPDAC spend 10% of survival time on outpatient health care. More than half of this time is spent commuting and waiting for care. These findings provide an important snapshot of the patient experience during ambulatory care, and efforts to enhance efficiency of care delivery may be warranted.
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.
INTRODUCTION: Equitable delivery of advance care planning and symptom management among patients is crucial to improving cancer care. Existing interventions to improve the uptake of these services have predominantly occurred in clinic settings and are limited in their effectiveness, particularly among low-income and minority populations.
METHODS: The "Lay health worker Educates Engages and Activates Patients to Share (LEAPS)" intervention was developed to improve advance care planning and symptom management among low-income and minority hourly-wage workers with cancer, in two community settings. The intervention provides a lay health worker to all patients newly diagnosed with cancer and aims to educate and activate patients to engage in advance care planning and symptom management with their oncology providers. In this randomized clinical trial, we will evaluate the effect on quality of life (primary outcome) using the validated Functional Assessment of Cancer Therapy - General Survey, at enrollment, 4- and 12- months post-enrollment. We will examine between-group differences on our secondary outcomes of patient activation, patient satisfaction with healthcare decision-making, and symptom burden (at enrollment, 4- and 12-months post-enrollment), and total healthcare use and healthcare costs (at 12-months post-enrollment).
DISCUSSION: Multilevel approaches are urgently needed to improve cancer care delivery among low-income and minority patients diagnosed with cancer in community settings. The current study describes the LEAPS intervention, the study design, and baseline characteristics of the community centers participating in the study.
PURPOSE: Online programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www.prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics.
METHODS: We undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement.
RESULTS: In total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations.
CONCLUSIONS: Implementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.
Chronic respiratory diseases are progressive and often life-limiting illnesses. Patients experience debilitating and troubling symptoms that impact on their quality of life. Despite this, there is under-recognition of patients who may be entering the final year of their life and require palliative care services. The Royal Wolverhampton NHS Trust in partnership with Compton Care has established chronic respiratory disease multidisciplinary team meetings and a combined respiratory and palliative care outpatient clinic to address these issues. This article presents the impact of this service, now in to its fourth year, of delivering palliative care services to patients with chronic respiratory disease.
BACKGROUND: Decision-making in palliative care can be complex due to the uncertain prognosis and general fear surrounding decisions. Decision-making in palliative care may be influenced by spiritual and cultural beliefs or values. Determinants of the decision-making process are not completely understood, and spirituality is essential for coping with illness. Thus, this study aims to explore the influence of spirituality on the perception of healthcare decision-making in palliative care outpatients.
METHODS: A cross-sectional study was developed. A battery of tests was administered to 95 palliative outpatients, namely: sociodemographic questionnaire (SQ), Decisional Conflict Scale (DCS), Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being scale (FACIT-Sp), and a semi-structured interview (SSI) to study one's perception of spirituality and autonomy in decision-making. Statistical analyses involved descriptive statistics for SQ and SSI. The Mann-Whitney test was used to compare scale scores between groups and correlations were used for all scales and subscales. The analysis of patients' definitions of spirituality was based on the interpretative phenomenological process.
RESULTS: Spiritual wellbeing significantly correlated with greater levels of physical, emotional and functional wellbeing and a better quality of life. Greater spiritual wellbeing was associated with less decisional conflict, decreased uncertainty, a feeling of being more informed and supported and greater satisfaction with one's decision. Most patients successfully implemented their decision and identified themselves as capable of early decision-making. Patients who were able to implement their decision presented lower decisional conflict and higher levels of spiritual wellbeing and quality of life. Within the 16 themes identified, spirituality was mostly described through family. Patients who had received spiritual care displayed better scores of spiritual wellbeing, quality of life and exhibited less decisional conflict. Patients considered spirituality during illness important and believed that the need to receive spiritual support and specialised care could enable decision-making when taking into consideration ones' values and beliefs.
CONCLUSION: The impact of spiritual wellbeing on decision-making is evident. Spirituality is a key component of overall wellbeing and it assumes multidimensional and unique functions. Individualised care that promotes engagement in decision-making and considers patients' spiritual needs is essential for promoting patient empowerment, autonomy and dignity.
Importance: Parkinson disease and related disorders (PDRD) have consequences for quality of life (QoL) and are the 14th leading cause of death in the United States. Despite growing interest in palliative care (PC) for persons with PDRD, few studies are available supporting its effectiveness.
Objective: To determine if outpatient PC is associated with improvements in patient-centered outcomes compared with standard care among patients with PDRD and their caregivers.
Design, Setting, and Participants: This randomized clinical trial enrolled participants at 3 academic tertiary care centers between November 1, 2015, and September 30, 2017, and followed them up for 1 year. A total of 584 persons with PDRD were referred to the study. Of those, 351 persons were excluded by phone and 23 were excluded during in-person screenings. Patients were eligible to participate if they had PDRD and moderate to high PC needs. Patients were excluded if they had urgent PC needs, another diagnosis meriting PC, were already receiving PC, or were unable or unwilling to follow the study protocol. Enrolled participants were assigned to receive standard care plus outpatient integrated PC or standard care alone. Data were analyzed between November 1, 2018, and December 9, 2019.
Interventions: Outpatient integrated PC administered by a neurologist, social worker, chaplain, and nurse using PC checklists, with guidance and selective involvement from a palliative medicine specialist. Standard care was provided by a neurologist and a primary care practitioner.
Main Outcomes and Measures: The primary outcomes were the differences in patient quality of life (QoL; measured by the Quality of Life in Alzheimer Disease scale) and caregiver burden (measured by the Zarit Burden Interview) between the PC intervention and standard care groups at 6 months.
Results: A total of 210 patients with PDRD (135 men [64.3%]; mean [SD] age, 70.1 [8.2] years) and 175 caregivers (128 women [73.1%]; mean [SD] age, 66.1 [11.1] years) were enrolled in the study; 193 participants (91.9%) were white and non-Hispanic. Compared with participants receiving standard care alone at 6 months, participants receiving the PC intervention had better QoL (mean [SD], 0.66 [5.5] improvement vs 0.84 [4.2] worsening; treatment effect estimate, 1.87; 95% CI, 0.47-3.27; P = .009). No significant difference was observed in caregiver burden (mean [SD], 2.3 [5.0] improvement vs 1.2 [5.6] improvement in the standard care group; treatment effect estimate, -1.62; 95% CI, -3.32 to 0.09; P = .06). Other significant differences favoring the PC intervention included nonmotor symptom burden, motor symptom severity, completion of advance directives, caregiver anxiety, and caregiver burden at 12 months. No outcomes favored standard care alone. Secondary analyses suggested that benefits were greater for persons with higher PC needs.
onclusions and Relevance: Outpatient PC is associated with benefits among patients with PDRD compared with standard care alone. This study supports efforts to integrate PC into PDRD care. The lack of diversity and implementation of PC at experienced centers suggests a need for implementation research in other populations and care settings.
Trial Registration ClinicalTrials.gov Identifier: NCT02533921