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.

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.

Identifying education, knowledge and communication gaps in biomarker testing between YO-CRC patients, caregivers, and their medical team.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e16115-e16115
Author(s):  
Kim Lynn Newcomer ◽  
Danielle Peterson ◽  
Ronit Yarden ◽  
Keyword(s):  
Online Survey ◽  
Medical Information ◽  
Treatment Plan ◽  
Treatment Options ◽  
Stage Iv ◽  
Public Health Issue ◽  
Medical Team ◽  
Cross Sectional ◽  
Patient Reported ◽  
Biomarker Testing

e16115 Background: The proportion of new young-onset colorectal cancer (YO-CRC) cases diagnosed in young people (20-49) had doubled over the past 3 decades, and it is becoming an alarming public health issue. YO-CRC patients face unique clinical challenges, as many are diagnosed at advanced stages of the disease and subjected to aggressive treatments. With the increase of targeted therapies and precision medicine available, NCCN and ASCO guidelines recommend that all stage IV, metastatic CRC patients be tested for 4 biomarkers in addition to MSI-H. However, not all eligible patients benefit from biomarker testing and biomarker-driven therapies. Methods: We conducted an online survey to assess patients, survivors and caregivers’ knowledge and understanding of biomarker testing and whether they feel empowered to discuss with their doctor different treatment options based on their unique tumor characteristics and their preferences. Results: The cross-sectional study was completed by patients and survivors (N = 885) and unrelated caregivers of YO-CRC patients (N = 203). The median age of patients and survivors was 42, and the median age of caregivers was also 42. The majority of the participants were college graduates. Although 82% of stage IV, YO-CRC patients felt informed before treatment began, only 70% indicated their tumor was tested for biomarkers, and 54% of them received biomarker testing before treatment initiation. Only 33% of patients reported they became aware of biomarkers by their medical team while others indicated resources such as internet searches, family and friends, or patient navigators. Many of the caregivers who reported that they served as a liaison between patients and medical information retrieval felt that they did not fully understand the critical aspects of the patients' medical treatment plan. Conclusions: Multiple studies have shown that patient-centered care improves patients’ outcomes. Our organization encourages patients and their families to use medical information to navigate their journey. Our patient-reported study suggests that there are gaps in patients’ and caregiver’s understanding of biomarker testing that may hinder patient's empowerment for reaching evidence-based shared-decision treatment plan together with their physicians.

scholarly journals How the Future of Sonography May Change the Outlook for Patients With Osteosarcoma

2018 ◽  
Vol 34 (5) ◽  
pp. 368-373
Author(s):  
Stacey Hoya ◽  
Linda Wogeman ◽  
Sara Allstadt ◽  
Glen King
Keyword(s):  
Quality Of Life ◽  
Focused Ultrasound ◽  
Treatment Plan ◽  
Treatment Options ◽  
Therapeutic Ultrasound ◽  
Bone Lesions ◽  
Pulsed Ultrasound ◽  
Low Intensity Pulsed Ultrasound ◽  
Ultrasound Applications

Sonography currently provides a variety of tools to support the diagnosis and treatment of osteosarcoma and, with the development of therapeutic ultrasound practices, could play an increasingly important role in the treatment of future patients with osteosarcoma. Currently, computed tomography, magnetic resonance imaging, and radiography are the preferred imaging modalities for bone lesions; treatment options for osteosarcoma primarily include highly toxic chemotherapies and surgeries that often result in limb loss. Unfortunately, osteosarcoma is rarely eliminated, and despite this, patients lose their lives after having a significant reduction in quality of life. Evolving therapies such as high-frequency focused ultrasound, ultrasound-enhanced delivery of photodynamic therapy, and low-intensity pulsed ultrasound may offer these patients an improved quality of life while also increasing efficacy of treatment. This canine case study illustrates the various ways in which sonography might contribute to the treatment plan for patients with osteosarcoma. It may provide a comparable model for the reimagining of treatment for future patients with osteosarcoma using a suite of therapeutic ultrasound applications.

scholarly journals Importance of Diagnostic Waxing in Oral Rehabilitation: Case Report

2020 ◽  
Vol 22 (2) ◽  
pp. 146-150
Author(s):  
Mariana Lima da Costa Valente ◽  
Marcela Silva Costa ◽  
Paulo Marcos Bérgamo ◽  
Denise Tornavoi de Castro
Keyword(s):  
Quality Of Life ◽  
Treatment Plan ◽  
Dental Restoration ◽  
Oral Rehabilitation ◽  
Correct Treatment ◽  
Life Planning ◽  
End Of Treatment ◽  
Patient Reported ◽  
And Function

Currently, aesthetics, and especially the smile, adds considerable social value. In this way, patients suffering from dental loss wish that their rehabilitation be performed quickly and safely. The aim of oral rehabilitation is to restore masticatory, phonetic, aesthetic and quality of life to the patient. The diagnostic step is one of the most important and relevant steps in establishing a correct treatment plan and, in this way, it is possible to obtain excellent results. The present study aimed to demonstrate the importance of diagnostic waxing in oral rehabilitation. Patient sought treatment at the Dental Prosthesis Specialization Course at Odonto School, due to complaints associated with aesthetics and function. To improve their quality of life, planning of case was carried out through diagnostic waxing and a prosthetic solution was proposed. At the end of treatment and during the follow-up of the case, the patient reported satisfaction and significant improvement in quality of life. It can be concluded that the diagnostic waxing presents customized solutions offering, through a previous study, an effective clinical resolution to the patient. Keywords: Mouth Rehabilitation. Dental Restoration, Temporary. Dental Restoration, Temporary. Resumo Atualmente, a estética, e em especial o sorriso, agregam um valor social considerável. Dessa forma, ao sofrerem a perda dental, os pacientes desejam que sua reabilitação seja realizada de forma rápida e segura. A reabilitação oral tem como objetivo devolver ao paciente a eficiência mastigatória, fonética, estética e a qualidade de vida. A etapa diagnóstica constitui um dos passos mais importantes e relevantes no estabelecimento de um correto planejamento do tratamento e, desta forma, torna-se possível obter resultados de excelência. O presente estudo teve como objetivo demonstrar a importância do enceramento diagnóstico na reabilitação oral. Paciente procurou tratamento no Curso de Especialização em Prótese Dentária da Odonto School, devido a queixas associadas a estética e função. Para melhorar sua qualidade de vida, foi realizado o planejamento do caso por meio do enceramento diagnóstico e uma solução protética foi proposta. Ao final do tratamento e durante o acompanhamento do caso, a paciente relatou satisfação e melhora significativa na qualidade de vida. Pode-se concluir que o enceramento diagnóstico apresenta soluções personalizadas oferecendo, por meio de estudo prévio, uma resolução clínica efetiva ao paciente. Palavras-chave: Reabilitação Bucal. Restauração Dentária Temporária. Prótese Dentária Temporária.

scholarly journals Neuroendocrine tumours: what gastroenterologists need to know

2020 ◽  
pp. flgastro-2020-101431
Author(s):  
Mohid S Khan ◽  
D Mark Pritchard
Keyword(s):  
Quality Of Life ◽  
Neuroendocrine Tumours ◽  
Comprehensive Evaluation ◽  
Treatment Options ◽  
Somatostatin Analogue ◽  
Low Grade ◽  
Multiple Treatment ◽  
Gastrointestinal Problems ◽  
Patient Reported

Gastroenterologists are intermittently involved in diagnosing and managing patients who have neuroendocrine tumours (NETs). However, few UK gastroenterologists have received extensive training about this topic. This article aims to provide a brief introduction to NETs; it is aimed at a general gastroenterologist audience.NETs present in diverse ways and many symptomatic patients unfortunately experience significant delays in diagnosis. Comprehensive evaluation of a patient with a possible NET involves assessing their symptoms, the tumour’s primary organ of origin, its differentiation status, grade and stage, whether the NET is secreting hormones and whether there is any underlying hereditary predisposition. Such assessment often needs specialist investigations such as nuclear medicine scans. All these factors influence patient management and prognosis, so a patient’s case and investigations should always be discussed by a fully constituted NET multidisciplinary team. Most localised tumours are considered for resection, but there are multiple treatment options for metastatic disease and many patients receive several different therapies during the course of their illness. The most common first line treatment in patients who have metastatic low grade NETs is monthly long acting somatostatin analogue injections. Prognosis is highly variable, but some patients who have inoperable metastases survive for many years on treatment with good quality of life. Gastroenterologists may also be involved in managing the non-tumour associated chronic gastrointestinal problems that some patients experience. Their involvement has been shown to improve patient-reported outcomes and quality of life.

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.

Implementing value-based cancer care: A multidisciplinary approach to defining breast cancer outcomes.

2016 ◽  
Vol 34 (7_suppl) ◽  
pp. 16-16
Author(s):  
Oluwadamilola M. Fayanju ◽  
Tinisha L. Mayo ◽  
Tracy E. Spinks ◽  
Seohyun Lee ◽  
Carlos Hernando Barcenas ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Performance Improvement ◽  
Cancer Care ◽  
Treatment Options ◽  
The United States ◽  
Multidisciplinary Teams ◽  
Patient Portal ◽  
Breast Cancer Patients ◽  
Patient Centered ◽  
Patient Reported

16 Background: Value in healthcare (patient-centered outcomes achieved per dollar spent) unifies performance improvement goals with health outcomes of importance to patients. We describe the process through which value-based measures for breast cancer patients and dynamic capture of these metrics via our new electronic health record (EHR) were developed at our institution. Methods: A review of the breast cancer literature was conducted on treatment options as well as expected outcomes and potential treatment complications. Patient perspective was obtained via focus groups. Multidisciplinary teams met to inform a 3-phase process of (1) concept development, (2) measure specification, and (3) implementation via EHR integration, planned for spring 2016. Results: Outcomes were divided into 3 previously defined tiers (NEJM 2010; 363:2477-2481) that reflect the entire cycle of care (Table).Within these tiers, 22 patient-centered outcomes were defined with inclusion/exclusion criteria, specifications for reporting, and sources for data including the EHR and validated patient-reported outcome questionnaires (e.g., FACT-B+4) administered via our patient portal. Conclusions: A value-based approach to cancer care with transparently reported patient outcomes not only creates opportunity for performance improvement but also enables benchmarking within and across providers, healthcare systems, and even countries. Our value-based framework for breast cancer is the first of its kind in the United States, with a similar model being pursued internationally as well. [Table: see text]

What are patients’ biggest concerns? A patient reported outcome case-management system.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 6572-6572 ◽  
Author(s):  
Rahma M. Warsame ◽  
Carrie A. Thompson ◽  
Joleen Marie Hubbard ◽  
Amie L. Fonder ◽  
Miriam A. Hobbs ◽  
...  
Keyword(s):  
Current Practice ◽  
Stem Cell Transplant ◽  
Treatment Plan ◽  
Gynecologic Cancer ◽  
Patient Reported Outcome ◽  
Cell Transplant ◽  
Self Assessment ◽  
Patient Reported ◽  
Patient Concerns

6572 Background: Cancer patients (pts) receive complex care that may cause physical, emotional, & financial sequelae. Current practice limits clinician time to address patient concerns. The Patient Reported Outcome Quality Of Life (PROQOL) system was developed as a self-reported electronic questionnaire to assess symptoms, QOL and provide data about bothersome issues. Our aim was to determine if the PROQOL system improves QOL without negatively impacting routine clinic workflow. Methods: Eligible pts had multiple myeloma, amyloidosis, head & neck or gynecologic cancer seen in Hematology/Oncology clinics at Mayo Clinic, and were stratified by stem cell transplant and active treatment status. Pts were randomized 2:1 to PROQOL system or usual care. PROQOL system was offered prior to every visit. Pts select from various categories about their single biggest concern, and receive a printed list of actionable resources based on selected concern. Clinicians also receive the PROQOL results to review with pts. Providers and pts randomized to PROQOL completed a “was it worth it survey” (WIWI). An 8 item Linear Analogue Self-Assessment was used to assess QOL. The study was powered to detect a 0.5 standard deviation difference in QOL between groups. Herein we report the planned results of first 6 months. Results: Among the first 118 pts accrued, 55% were female, median age was 63 (32-86), & 93% were on therapy. Median time from diagnosis to PROQOL was 26 months. The PROQOL system took 3.6 minutes to complete. Baseline median QOL (range) was 7 (3-10) for both groups. The most common PROQOL issue selected was “cancer & diagnosis” (36.5%) followed by “physical health” (35.3%). Specific concerns were related to treatment plan, prognosis, fatigue, sleep, and neuropathy. WIWI showed: 71% of pts thought it was worthwhile, 83% would participate again, 80% would recommend it, & 65% used resources provided. 80% of providers reported the PROQOL did not interfere with care & 75% believed the pt wellbeing may improve. Conclusions: Notably treatment plan & prognosis remain pts' greatest concern despite being over 2 year from diagnosis.The PROQOL system demonstrates integrated PRO reporting in clinic is quick & worthwhile to pts & providers.

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.

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