Communicating Oncologic Prognosis with Empathy (COPE) Pilot Study.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 11613-11613
Author(s):  
Boone W. Goodgame ◽  
Farya Phillips ◽  
Wenhui Vivian Zhang ◽  
Barbara L. Jones
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Healthcare Team ◽  
Patient Support ◽  
Patient Centered ◽  
Incurable Cancer ◽  
Patient Reported ◽  
Post Test ◽  
Perception Survey

11613 Background: Multiple studies show that patients with advanced cancer often believe the goal of treatment is cure. Our interprofessional team designed the Communicating Oncologic Prognosis with Empathy (COPE) guide to enhance communication for patients, families, and the healthcare team. This unique, single-page tool allows treating physicians to estimate prognosis for patients, including likelihood of living 6 mo, 1y, 2y, and 5y, with or without treatment. Methods: Patients with incurable cancer were enrolled at one oncology clinic. Using a pre/post-test design, participants completed the validated prognosis and treatment perception survey (PTPQ) then met with their oncologist. The COPE guide was used for the discussion and the patient received a copy of the completed COPE. The COPE guide was placed in the patient chart and the healthcare team (social work, spiritual care etc.) used it to provide patient support and explore the patient’s response to the information. Post-test was completed 4-8 weeks later. Qualitative exit interviews were used to assess patient reported impact on communication with medical team, caregivers and family, and quality of life. Results: 43 patients were enrolled and 25 completed all study measures. All patients had advanced cancer with 96% of patients (24) extremely unlikely to be cured ( < 1% chance). Oncologist’s treatment goals were better quality of life and longer life. All participants completing the study found the communication guide helpful, scoring 9-10 out of 10. 95% of patients enrolled wanted to hear details about their prognosis. Pre-intervention, 28% (7) of patients reported their primary goal of treatment as cure (n = 7; 28%) or to extend life as long as possible (n = 7; 28%). Pre-intervention, patient’s perceptions of their oncologist’s goals of treatment were cure (n = 11; 44%) or extend life (n = 8; 32%). At post-test, 8% of participants (2) inaccurately reported goal of treatment as cure (p < 0.05). Conclusions: These findings highlight major gaps in patients’ understanding of their prognosis. COPE is a promising mechanism to enhance patient-centered communication about prognosis and treatment for patients with incurable cancer.

Communicating Oncologic Prognosis with Empathy (COPE).

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 38-38
Author(s):  
Farya Phillips ◽  
Boone W Goodgame ◽  
Barbara L Jones
Keyword(s):  
Treatment Plan ◽  
Treatment Options ◽  
Accurate Information ◽  
Healthcare Team ◽  
Medical Team ◽  
Patient Centered ◽  
Incurable Cancer ◽  
Patient Reported ◽  
Post Test

38 Background: Clear communication between patients and providers is imperative to maximize patient outcomes, particularly for patients with incurable cancer who require prompt engagement in decision-making. In response to the need to engage in quality patient-centered communication, an interprofessional team, representing medicine, nursing, social work, and spiritual care developed a simple, single-page tool that summarizes the prognosis and treatment plan for patients with incurable cancers. This pilot study evaluates the communication guide, Communicating Oncologic Prognosis with Empathy (COPE), for discussing prognosis and treatment options for cancer patients. Methods: A pilot test of 30 participants with incurable cancer was completed at an oncology clinic. The communication guide was evaluated using a pre- and post-test design, participants completed a prognosis and treatment perception survey (PTPQ) prior to their first oncology appointment. Patients then met with their oncologist and the COPE guide was used to guide the discussion and patients received a copy of the COPE guide. The COPE guide was placed in the patient chart and other members of the healthcare team were able to use the tool to provide the patient with support and explore the patient’s response to information received. Patients completed the post-test PTPQ at 4 week follow up and completed exit interviews to assess patient reported impact on communication with medical team, caregivers, and quality of life. Results: Key findings revealed participants prefer receiving detailed information about prognosis and have differing perceptions about goals of treatment compared to the oncology team. The tool seemed to facilitate mostly accurate information recall regarding prognosis and treatment options. Conclusions: Despite the high value patients placed on knowing about prognosis and quality of communication with their medical team, the majority reported incongruent goals of treatment and likelihood of cure compared with their oncologist, highlighting major gaps in patients’ understanding of their prognosis. The COPE guide serves as a promising mechanism to enhance patient-centered communication about prognosis and treatment for patients with incurable cancer.

Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual

1999 ◽  
Vol 17 (11) ◽  
pp. 3603-3611 ◽  
Author(s):  
Dympna Waldron ◽  
Ciaran A. O'Boyle ◽  
Michael Kearney ◽  
Michael Moriarty ◽  
Desmond Carney
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Internal Validity ◽  
Semistructured Interview ◽  
Incurable Cancer ◽  
Life Measurement ◽  
The Difference ◽  
The Individual ◽  
Very High

PURPOSE: Despite the increasing importance of assessing quality of life (QoL) in patients with advanced cancer, relatively little is known about individual patient's perceptions of the issues contributing to their QoL. The Schedule for the Evaluation of Individual Quality of Life (SEIQoL) and the shorter SEIQoL–Direct Weighting (SEIQoL-DW) assess individualized QoL using a semistructured interview technique. Here we report findings from the first administration of the SEIQoL and SEIQoL-DW to patients with advanced incurable cancer. PATIENTS AND METHODS: QoL was assessed on a single occasion using the SEIQoL and SEIQoL-DW in 80 patients with advanced incurable cancer. RESULTS: All patients were able to complete the SEIQoL-DW, and 78% completed the SEIQoL. Of a possible score of 100, the median QoL global score was as follows: SEIQoL, 61 (range, 24 to 94); SEIQoL-DW, 60.5 (range, 6 to 95). Psychometric data for SEIQoL indicated very high levels of internal consistency (median r = .90) and internal validity (median R2 = 0.88). Patients' judgments of their QoL were unique to the individual. Family concerns were almost universally rated as more important than health, the difference being significant when measured using the SEIQoL-DW (P = .002). CONCLUSION: Patients with advanced incurable cancer were very good judges of their QoL, and many patients rated their QoL as good. Judgments were highly individual, with very high levels of consistency and validity. The primacy given to health in many QoL questionnaires may be questioned in this population. The implications of these findings are discussed with regard to clinical assessment and advance directives.

scholarly journals Patients’ Experiences With Staphylococcus aureus and Gram-negative Bacterial Bloodstream Infections: A Qualitative Descriptive Study and Concept Elicitation Phase To Inform Measurement of Patient-reported Quality of Life

2020 ◽  
Author(s):  
Heather A King ◽  
Sarah B Doernberg ◽  
Julie Miller ◽  
Kiran Grover ◽  
Megan Oakes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Staphylococcus Aureus ◽  
Bloodstream Infection ◽  
Bloodstream Infections ◽  
Patient Centered ◽  
Gram Negative ◽  
Concept Elicitation ◽  
Patient Reported ◽  
Disease Specific

Abstract Background Although Staphylococcus aureus and gram-negative bacterial bloodstream infections (SAB/GNB) cause substantial morbidity, little is known regarding patient perceptions’ of their impact on quality of life (QOL). Guidance for assessing QOL and disease-specific measures are lacking. We conducted a descriptive qualitative study to gain an in-depth understanding of patients’ experiences with SAB/GNB and concept elicitation phase to inform a patient-reported QOL outcome measure. Methods We conducted prospective one-time, in-depth, semi-structured, individual, qualitative telephone interviews 6– 8 weeks following bloodstream infection with either SAB or GNB. Patients were enrolled in an institutional registry (tertiary academic medical center) for SAB or GNB. Interviews were audio-recorded, transcribed, and coded. Directed content analysis identified a priori and emergent themes. Theme matrix techniques were used to facilitate analysis and presentation. Results Interviews were completed with 30 patients with SAB and 31 patients with GNB. Most patients were at or near the end of intravenous antibiotic treatment when interviewed. We identified 3 primary high-level concepts: impact on QOL domains, time as a critical index, and sources of variability across patients. Across both types of bloodstream infection, the QOL domains most impacted were physical and functional, which was particularly evident among patients with SAB. Conclusions SAB/GNB impact QOL among survivors. In particular, SAB had major impacts on multiple QOL domains. A combination of existing, generic measures that are purposefully selected and disease-specific items, if necessary, could best capture these impacts. Engaging patients as stakeholders and obtaining their feedback is crucial to conducting patient-centered clinical trials and providing patient-centered care.

Automatic inpatient palliative care consultation (PCC): Too little, too late to impact quality of life for advanced cancer patients?

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. e20565-e20565
Author(s):  
Gabrielle Betty Rocque ◽  
Toby Christopher Campbell ◽  
Anne Elizabeth Barnett ◽  
Renae M Quale ◽  
Jens C. Eickhoff ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Services ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Primary Outcome ◽  
Intervention Group ◽  
Control Group ◽  
Patient Reported ◽  
Small Patient Population

e20565 Background: Patients with advanced cancer who are hospitalized have high symptom burden and a short life expectancy, which may warrant PCC. Methods: Using sequential cohorts, we prospectively assessed implementation of automatic PCC for hospitalized cancer patients. The primary outcome was hospice utilization. Secondary outcomes included evaluation of changes in quality of life (FACIT-PAL), symptoms (ESAS), satisfaction (FAMCARE), and anxiety and depression (HADS). Surveys were administered at baseline, 2 weeks and 3 months post-hospitalization. Chart abstraction was utilized to assess demographics, resource use, and survival information. Results: Patients were evaluated consecutively (65 in the control group, 70 in the intervention). At admission, 91% reported uncontrolled symptoms: 52% pain; 15% dyspnea. 60% of intervention patients received PCC during their first admission. 54 patients completed surveys (29 control group, 25 PCC group), 64 patients declined or were unable to complete surveys, 16 patients were excluded due to language barriers, physician preference, or not receiving surveys. Using an intent-to-treat analysis, there was no difference between patients in the control and the intervention group in FACIT-PAL (119 ± 29 vs 123 ± 30, p = 0.68 ), ESAS (28 ± 14 vs 26 ± 15, p = 0.74) HADS (13 ± 6.6 vs. 12.± 4.7, p = 0.58), or FAMCARE (58 ± 9.1 vs 59 ± 8.6, p = 0.61). In both groups, patients had modest worsening of symptoms and quality of life over the course of the study. Survival and Health Services data analysis, including hospice referral, is proceeding. Conclusions: Automatic PPC had little impact on patient-reported symptoms and quality of life. Limitations included: small patient population; high rate of incomplete surveys, likely due to illness burden; penetration of the PCC was limited to 60% by patient or provider preference and consultant availability. Our primary outcome analysis (hospice utilization) is forthcoming, as are data on survival and Health Services outcomes.

scholarly journals Prevalence of Low-Value Care and Its Associations with Patient-Centered Outcomes in Dementia

2021 ◽  
pp. 1-13
Author(s):  
Moritz Platen ◽  
Steffen Flea ◽  
Anika Rädke ◽  
Diana Wucherer ◽  
Jochen René Thyrian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Models Of Care ◽  
Adverse Outcomes ◽  
Future Research ◽  
Patient Centered ◽  
Treatment Pathways ◽  
Patient Reported ◽  
Evidence Based Treatments ◽  
Related Quality

Background: Low-value care (LvC) is defined as care unlikely to provide a benefit to the patient regarding the patient’s preferences, potential harms, costs, or available alternatives. Avoiding LvC and promoting recommended evidence-based treatments, referred to as high-value care (HvC), could improve patient-reported outcomes for people living with dementia (PwD). Objective: This study aims to determine the prevalence of LvC and HvC in dementia and the associations of LvC and HvC with patients’ quality of life and hospitalization. Methods: The analysis was based on data of the DelpHi trial and included 516 PwD. Dementia-specific guidelines, the “Choosing Wisely” campaign and the PRISCUS list were used to indicate LvC and HvC treatments, resulting in 347 LvC and HvC related recommendations. Of these, 77 recommendations (51 for LvC, 26 for HvC) were measured within the DelpHi-trial and finally used for this analysis. The association of LvC and HvC treatments with PwD health-related quality of life (HRQoL) and hospitalization was assessed using multiple regression models. Results: LvC was highly prevalent in PwD (31%). PwD receiving LvC had a significantly lower quality of life (b = –0.07; 95%CI –0.14––0.01) and were significantly more likely to be hospitalized (OR = 2.06; 95%CI 1.26–3.39). Different HvC treatments were associated with both positive and negative changes in HRQoL. Conclusion: LvC could cause adverse outcomes and should be identified as early as possible and tried to be replaced. Future research should examine innovative models of care or treatment pathways supporting the identification and replacement of LvC in dementia.

Defining the elements of early palliative care (PC) that are associated with patient-reported outcomes (PROs) and the delivery of end-of-life (EOL) care.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 154-154 ◽  
Author(s):  
Michael Hoerger ◽  
Jennifer S. Temel ◽  
Vicki Jackson ◽  
Elyse Park ◽  
William F. Pirl ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Depression Scale ◽  
Treatment Decisions ◽  
Study Cohort ◽  
Care Planning ◽  
Patient Reported ◽  
Oncology Care ◽  
Eol Care

154 Background: Early PC integrated with oncology care improves quality of life, mood and the delivery of EOL care among patients with advanced cancer, but little is known about which elements of PC practice are associated with such outcomes. The goals of this study were to describe the key elements of early PC across the illness trajectory and examine whether variation in visit content was associated with changes in PROs and the delivery of EOL care. Methods: The study cohort included patients with incurable lung or non-colorectal gastrointestinal cancer who were randomized to early PC integrated with oncology care (n = 171). Patients completed measures of quality of life (Functional Assessment of Cancer Therapy-General, FACT-G) and mood (Hospital Anxiety and Depression Scale, HADS; Patient Health Questionnaire–9, PHQ-9) at baseline and 24 weeks. PC clinicians completed electronic post-visit surveys documenting PC visit content. Data on EOL care were abstracted from electronic health records. We examined variation in visit content over time and used linear and logistic regression to identify whether the percentage of visits emphasizing a given content area was associated with PROs and EOL care. Results: We analyzed 2,921 PC visits, most of which focused on coping (64.2%) and symptom management (74.5%). By 24 weeks, patients who had a higher percentage of visits focused on coping experienced improved quality of life (p = .02) and depression (HADS: p = .002; PHQ-9: p = .005). Having a higher percentage of visits focused on treatment decisions was associated with a reduced odds of new chemotherapy (p = .02), hospitalization (p = .001), and ED admission (p = .04) in the 60 days prior to death. Focusing on advance care planning was associated with an increased odds of receiving hospice care (p = .01) and dying at home (p = .03). Conclusions: PC clinicians’ attention to coping is associated with improvements in PROs, and the focus on treatment decisions and advanced care planning is associated with higher quality EOL care. This study defines the key elements of early PC for patients with advanced cancer and furthers the development and dissemination of this integrated model of care. Clinical trial information: NCT01401907.

Hits and misses: A longitudinal examination of congruence between patient-reported quality-of-life concerns in advanced cancer and discussions with oncologists.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 22-22
Author(s):  
Karen Marie De Sola-Smith ◽  
Janice Bell ◽  
Daniel J Tancredi ◽  
Richard L Kravitz ◽  
Paul Duberstein ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Therapeutic Alliance ◽  
Advanced Cancer ◽  
Secondary Analysis ◽  
Care Needs ◽  
Patient Reported ◽  
The Voice ◽  
Longitudinal Examination

22 Background: Quality of life (QOL) support is critical to high quality advanced cancer care and is associated with improved patient outcomes, but most patients report unmet supportive care needs. To understand supportive care provision in routine oncology, we examined the agreement, or congruence, between patients’ self-reported symptoms and topics discussed with oncologists over an extended interval of care. Prior research suggests that patient-provider rapport and overall QOL influence discussion of patient concerns, therefore we estimated effects of two predictors of interest: therapeutic alliance between patient and oncologist, and global QOL. Methods: We conducted a secondary analysis of data collected in the VOICE study. Patients with advanced cancer (n=196) completed measures of symptoms (e.g., pain, nausea, emotional concerns) and QOL, as well as an inventory of topics discussed with oncologists over the prior 3 months. Data were collected at quarterly intervals for up to 48 months, resulting in 901 paired reports of patients’ symptoms and discussions with oncologists. We constructed congruence as a multinomial outcome with four discrete categories: congruence (symptom reported/discussed), unaddressed concern (symptom reported/not discussed), surveillance (symptom not reported/discussed), and no supportive care concern (symptom not reported/not discussed). We then estimated effects of global QOL and therapeutic alliance using multi-level logistic regression. Results: Congruence was most common for pain (49.9%), while emotional concerns were most likely to be unaddressed (50.5%). Higher therapeutic alliance with oncologists was associated with lower odds of unaddressed pain (OR 0.94, CI 0.89-1.00) and emotional concerns (OR 0.95, CI 0.91-0.98). Higher global QOL was associated with higher odds of unaddressed emotional concerns (OR 1.11, CI 1.02-1.20). Congruence outcomes were stable over time. Conclusions: Oncologists may improve congruence by strengthening therapeutic alliance, by more consistently discussing emotional concerns, and by prioritizing topics for discussion according to patients’ needs.

A digital oncology patient-reported outcomes platform: Building innovative electronic patient symptom assessments in epic mychart to improve the quality of life and survival of patients with advanced cancer.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e18312-e18312 ◽  
Author(s):  
Sidharth Anand ◽  
Anne Margaret Walling ◽  
Sarah F. DAmbruoso ◽  
Neil Wenger ◽  
Jennifer Singer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Overall Survival ◽  
Advanced Cancer ◽  
Patient Reported Outcomes ◽  
Best Practice ◽  
Response Rate ◽  
Assessment System ◽  
Patient Reported ◽  
Practice Advisory

e18312 Background: Establishing a system to monitor patient reported outcomes (“PRO”) has been demonstrated to be essential for a well-functioning cancer system. Studies have shown that routine collection of PROs allows providers to address medical issues earlier and impacts a patient’s overall survival. Unmet needs for symptom management are prevalent in the cancer population, especially patients with advanced cancer. Approximately 35% of UCLA Hematology-Oncology patients with advanced cancer in 2016 presented to Emergency Rooms for symptom-related complaints such as nausea, pain, constipation, dehydration, and fatigue. We hypothesize that the creation of an electronic PRO platform through EPIC MyChart will ensure patients receive timely evaluation of their symptoms, resulting in improved quality of life, and decreased ER and hospital utilization. Methods: We developed an innovative PRO platform through Epic MyChart along with a Best Practice Advisory alert system to identify patients at risk for worsening symptoms, ER visits, and inpatient admissions. We then built an electronic version of the Edmonson Symptoms Assessment System, which providers can push to patients through Epic MyChart, with results stored within the Flowsheets section of Epic. We also built a passive alert using Epic’s Best Practice Advisory (“BPA”) system, to notify providers when a patient’s MyChart ESAS Assessment Scores have exceeded a defined threshold. Results: Preliminary data from surveys sent to a series of advanced cancer patients seen in an outpatient palliative oncology clinic over 1 month, demonstrated a 100% response rate (6/7) surveys completed when sent one week prior to patient’s being seeing in clinic, and 17% response rate (1/6) when sent two to three weeks prior to clinic visit. The average total ESAS score reported was 40, with average individual score of 4/10 for any given symptom. Conclusions: We will implement this electronic PRO platform in multiple oncology clinics at UCLA, and measure provider and patient satisfaction, completion rates, and monitor outcomes such as ED visits and inpatient admissions. We hope this system will lead to an overall survival benefit. This project demonstrates the potential of developing innovative PRO platforms through Epic MyChart and the importance of clinical workflows in the implementation process.

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