A qualitative analysis of algorithm-based decision support usability testing for symptom management across the trajectory of cancer care: one size does not fit all.

BACKGROUND: Adults with cancer experience symptoms that change across the disease trajectory. Due to the distress and cost associated with uncontrolled symptoms, improving symptom management is an important component of quality cancer care. Clinical decision support (CDS) is a promising strategy to integrate clinical practice guideline (CPG)-based symptom management recommendations at the point of care. METHODS: The objectives of this project were to develop and evaluate the usability of two symptom management algorithms (constipation and fatigue) across the trajectory of cancer care in patients with active disease treated in comprehensive or community cancer care settings to surveillance of cancer survivors in primary care practices. A modified ADAPTE process was used to develop algorithms based on national CPGs. Usability testing involved semi-structured interviews with clinicians from varied care settings, including comprehensive and community cancer centers, and primary care. The transcripts were analyzed with MAXQDA using Braun and Clarke's thematic analysis method. A cross tabs analysis was also performed to assess the prevalence of themes and subthemes by cancer care setting. RESULTS: A total of 17 clinicians (physicians, nurse practitioners, and physician assistants) were interviewed for usability testing. Three main themes emerged: (1) Algorithms as useful, (2) Symptom management differences, and (3) Different target end-users. The cross-tabs analysis demonstrated differences among care trajectories and settings that originated in the Symptom management differences theme. The sub-themes of "Differences between diseases" and "Differences between care trajectories" originated from participants working in a comprehensive cancer center, which tends to be disease-specific locations for patients on active treatment. Meanwhile, participants from primary care identified the sub-theme of "Differences in settings," indicating that symptom management strategies are care setting specific. CONCLUSIONS: While CDS can help promote evidence-based symptom management, systems providing care recommendations need to be specifically developed to fit patient characteristics and clinical context. Findings suggest that one set of algorithms will not be applicable throughout the entire cancer trajectory. Unique CDS for symptom management will be needed for patients who are cancer survivors being followed in primary care settings.

Pharmacologic Pain Management: What Radiation Oncologists Should Know.

Individuals with cancer experience a host of symptoms, especially when the malignancy is advanced. Pain occurs from the cancer itself or related treatments. Undertreated pain contributes to patient suffering and lack of engagement in cancer-directed therapies. Adequate pain management includes thorough assessment; treatment by radiotherapists or anesthesia pain specialists; anti-inflammatory medications, oral or intravenous opioid analgesics, and topical agents; and attention to the emotional and functional effects of pain, which may involve social workers, psychologists, speech therapists, nutritionists, physiatrists and palliative medicine providers. This review discusses typical pain syndromes arising in cancer patients undergoing radiotherapy and provides concrete recommendations for pain assessment and pharmacologic treatment.

Experiences of Medical Interpreters During Palliative Care Encounters With Limited English Proficiency Patients: A Qualitative Study.

Background: There are many challenges in communication and cultural barriers for patients with limited English proficiency (LEP) who suffer from serious illnesses. Palliative care utilization among this population remains limited and the experiences of medical interpreters during palliative care encounters remain understudied. Methods: We conducted semistructured video interviews with interpreters working at an academic medical center. Interview questions explored interpreters' observations and experiences during palliative care encounters with LEP patients. We performed thematic analysis of the interview contents. Results: Our study included 20 interpreters who interpret in 9 languages with a mean experience of 16.3 years. We identified four themes from the interviews that shed light on the challenges of incorporating palliative care into the care of patients with LEP: (1) lack of a verbatim interpretation for the term "palliative care," (2) poor patient understanding of their treatment goals, (3) suboptimal timing of palliative care involvement, and (4) fears and misconceptions related to palliative care. Owing to challenges in word choice, the timing of palliative care involvement, and poor understanding of palliative care, interpreters observed that many patients with LEP declined palliative care involvement in their treatment plan. Conclusions: In this study, we identified several actionable barriers interpreters noted to incorporating palliative care into care of patients with LEP. Interventions directed toward providing LEP patients with standardized culturally appropriate information on palliative care are needed.

Top Ten Tips Palliative Care Clinicians Should Know About Working with Medical Interpreters.

Medical interpreters are the primary facilitators of effective communication between clinical providers and patients with limited English proficiency. They can assist in managing complex meetings in which patients, families, and clinicians decide on next steps in care. Palliative care (PC) clinicians inherently work in an interdisciplinary manner, which enables them to learn and model the effective integration of medical interpreters into the PC team. Rather than using an interpreter as a language tool, this article encourages PC clinicians to cultivate a partnership with the interpreter as a team member. We describe 10 tips for effective partnering with interpreters: the importance of including the interpreters in preencounter huddles and post-encounter debriefs, agreeing on strategies for interpreting "untranslatable" words and managing the encounters, using the "teach back" method to ensure understanding, acknowledging interpreters as cultural mediators, understanding the potential emotional impact of family meetings on interpreters, and enhancing follow-up with the PC team by providing contact information for PC staff to patients.

Establishing metastatic prostate cancer quality indicators using a modified Delphi approach.

BACKGROUND: There is variation in the care provided to men with metastatic prostate cancer (mPCa). There has been no previous set of quality indicators (QIs) regarding the management of men with mPCa. The objective of this study is to develop a set of international mPCa-specific QIs, which will enable global benchmarking of quality of care. MATERIALS AND METHODS: Potential QIs were identified through a literature review. Fourteen multidisciplinary mPCa experts (representing medical and radiation oncology, nursing, psychology, palliative care and urology) from eight countries participated in a modified Delphi process, which consisted of two online surveys, one face-to-face meeting and two teleconferences. Panelists were asked to rate each indicator's importance and feasibility on a Likert scale from 1 to 9. Indicators that received median importance and median feasibility scores ≥ 7.5, and a disagreement index <1 for both measures, on the final round of voting were included in the final set. RESULTS: There was consensus on 23 QIs out of total of 662. Four regarding "general management", 12 "therapies", three "complications" and four "patient-reported quality of life". One of the inherent limitations of the Delphi process is that there is a small expert panel involved. CONCLUSION: The quality indicator set defined by our process for management of men with mPCa will enable greater understanding of the standard and variation of care globally and will promote consistency of good practice. Future directions will include retrospective evaluation for compliance with these indicators, as well as prospective monitoring.

Clinical Decision Support for Symptom Management in Lung Cancer Patients: A Group RCT.

CONTEXT: Clinical guidelines are available to enhance symptom management during cancer treatment but often are not used in the practice setting. Clinical decision support can facilitate the implementation and adherence to clinical guidelines. and improve the quality of cancer care. OBJECTIVES: Clinical decision support offers an innovative approach to integrate guideline-based symptom management into oncology care. This study evaluated the effect of clinical decision support-based recommendations on clinical management of symptoms and health-related quality of life (HR-QOL) among outpatients with lung cancer. METHODS: Twenty providers and 179 patients were allotted in group randomization to attention control (AC) or Symptom Assessment and Management Intervention (SAMI) arms. SAMI entailed patient-report of symptoms and delivery of recommendations to manage pain, fatigue, dyspnea, depression, and anxiety; AC entailed symptom reporting prior to the visit. Outcomes were collected at baseline, two, four and six-months. Adherence to recommendations was assessed through masked chart review. HR-QOL was measured by the Functional Assessment of Cancer Therapy-Lung questionnaire. Descriptive statistics with linear and logistic regression accounting for the clustering structure of the design and a modified chi-square test were used for analyses. RESULTS: Median age of patients was 63 years, 58% female, 88% white, and 32% ≤high school education. Significant differences in clinical management were evident in SAMI vs. AC for all target symptoms that passed threshold. Patients in SAMI were more likely to receive sustained-release opioids for constant pain, adjuvant medications for neuropathic pain, opioids for dyspnea, stimulants for fatigue and mental health referrals for anxiety. However, there were no statistically significant differences in HR-QOL at any time point. CONCLUSION: SAMI improved clinical management for all target symptoms but did not improve patient outcomes. A larger study is warranted to evaluate effectiveness.

What's Lost in Translation: A Dialogue-Based Intervention That Improves Interpreter Confidence in Palliative Care Conversations.

BACKGROUND: For US patients with limited English proficiency (LEP), diversity of language and culture can create potential health care disparities in discussions of prognosis and goals of care. Although professional medical interpreters are often thought of as language conduits, they are also trained as clarifiers and mediators of cultural barriers between providers, patients and their families. Identifying interpreter challenges in Palliative Care (PC) conversations and brainstorming and rehearsing solutions could improve their confidence interpreting PC encounters and being cultural mediators. MEASURES: Pre- and Pre/Postintervention PC confidence questionnaires. INTERVENTION: six-session monthly dialogue-based course. OUTCOMES: Interpreters showed significant increases in postintervention confidence in PC communication compared with pre-intervention (z = -5.646, P< 0.000). CONCLUSIONS/LESSONS LEARNED: This dialogue-based intervention eliciting ongoing interpreter challenges, with PC social work facilitation and role-play with PC clinicians in a mutually respectful environment, significantly improved interpreter confidence in partnering with clinicians in PC conversations.

Development of a Palliative Care Toolkit for the COVID-19 Pandemic.

The Coronavirus disease 2019 (COVID-19) pandemic has led to high numbers of critically ill and dying patients in need of expert management of dyspnea, delirium, and serious illness communication. The rapid spread of severe acute respiratory syndrome-Coronavirus-2 creates surges of infected patients requiring hospitalization and puts palliative care programs at risk of being overwhelmed by patients, families, and clinicians seeking help. In response to this unprecedented need for palliative care, our program sought to create a collection of palliative care resources for nonpalliative care clinicians. A workgroup of interdisciplinary palliative care clinicians developed the Palliative Care Toolkit, consisting of a detailed chapter in a COVID-19 online resource, a mobile and desktop Web application, one-page guides, pocket cards, and communication skills training videos. The suite of resources provides expert and evidence-based guidance on symptom management including dyspnea, pain, and delirium, as well as on serious illness communication, including conversations about goals of care, code status, and end of life. We also created a nurse resource hotline staffed by palliative care nurse practitioners and virtual office hours staffed by a palliative care attending physician. Since its development, the Toolkit has helped us disseminate best practices to nonpalliative care clinicians delivering primary palliative care, allowing our team to focus on the highest-need consults and increasing acceptance of palliative care across hospital settings.

Palliative Care Skills and New Resources for Oncology Practices: Meeting the Palliative Care Needs of Patients With Cancer and Their Families.

In its 2017 guideline, ASCO challenged members to integrate palliative care into their standard oncology practices for all patients, throughout their cancer trajectory. However, partnering with palliative care experts alone will not be enough to achieve that goal; there are too few experts now, and there will not be enough in the future to meet the needs of patients with cancer and their families. Other strategies are required. Oncologists can develop new communication skills that were not included in their fellowship curricula, skills that integrate into their visits the subjects that palliative care clinicians discuss routinely with patients referred to them. In this review, Dr. Back offers three questions matched to communication skills that can help oncologists explore key areas: (1) What is happening? (2) How do you (and I) feel? and (3) What is important? and discusses the "REMAP" strategy for making urgent medical decisions. Dr. Friedman reviews the impact of community-based palliative care resources and telehealth on care quality, patient centeredness, and reducing costs. Community-based palliative care services and telehealth are available to patients and families at home, during active treatment. Dr. Abrahm reviews how patient-reported outcomes (PROs) completed at home can enhance patients' symptom control, quality of life, and toleration of treatment and decrease unplanned emergency visits by alerting clinicians to patients' severe symptoms, making appropriate referrals, or suggesting patients contact their oncology team. She also provides an update on using PROs and natural language processing with clinical decision support to create sophisticated palliative care assessments and treatment options in the electronic health record during patients' office visits.

Dexmedetomidine: A Novel Strategy for Patients with Intractable Pain, Opioid-Induced Hyperalgesia, or Delirium at the End of Life.

Dexmedetomidine, a selective alpha2 agonist, is traditionally used briefly for perioperative anesthesia and sedation of mechanically ventilated patients. Reports of its use in patients with opioid-induced hyperalgesia1 and intractable pain and delirium2 suggested it for patients who otherwise may have required palliative sedation to relieve suffering. We present the protocol developed by the interdisciplinary team in our intensive palliative care unit that allows for safe titrated administration without required vital sign monitoring outside the intensive care unit (ICU) (Supplementary Appendix SA1). We describe its efficacy in eight patients who were receiving comfort-focused care.

The Physician's Role in Responding to Existential Suffering: What Does It Mean to Comfort Always?

Existential suffering is commonly experienced by patients with serious medical illnesses despite the advances in the treatment of physical and psychological symptoms that often accompany incurable diseases. Palliative care (PC) clinicians wishing to help these patients are faced with many barriers including the inability to identify existential suffering, lack of training in how to address it, and time constraints. Although mental health and spiritual care providers play an instrumental role in addressing the existential needs of patients, PC clinicians are uniquely positioned to coordinate the necessary resources for addressing existential suffering in their patients. With this article, we present a case of a patient in existential distress and a framework to equip PC clinicians to assess and address existential suffering.

Assessment and Management of Patients With Metastatic Spinal Cord Compression: A Multidisciplinary Review.

PURPOSE: Metastatic spinal cord compression (MSCC) can be a catastrophic manifestation of advanced cancer that causes immobilizing pain and significant neurologic impairment. Oncologists can protect their patients by having a high index of suspicion for MSCC when patients present with new or worsening back pain before motor, sensory, bowel, or bladder deficits develop. We provide an updated, evidence-based narrative review of the presentation, diagnosis, and treatment of MSCC. METHODS: This narrative review was conducted by searching MEDLINE and Cochrane Database of Systematic Reviews for relevant literature on the presentation, diagnosis, and treatment of patients with MSCC. The article addresses the key elements of MSCC management germane to the medical oncologist, with special attention given to pain and symptom management, decision making with regard to surgery and radiation therapy, the importance of rehabilitative care, and the value of a multidisciplinary approach. RESULTS: Magnetic resonance imaging of the entire spine is recommended for the diagnosis of MSCC. Treatment includes glucocorticoid therapy, pain management, radiation therapy with or without surgery, and specialized rehabilitation. When formulating a treatment plan, clinicians should consider the patient's care goals and psychosocial needs. CONCLUSION: Prompt diagnosis and treatment of MSCC can reduce pain and prevent irreversible functional loss. Regular collaboration among multidisciplinary providers may streamline care and enhance achievement of treatment goals.

Communication Challenges at the Crossroads of Oncology and Palliative Care: Finding a Way Forward When Clinicians Differ on Prognosis.

In this article, we present a dialogue between a junior and a seasoned palliative care attending on approaching situations in which clinicians have differing opinions about patients' prognoses. In such situations, we may find a way forward by identifying common ground and exploring patients' and clinicians' values. Specifically, we can ask what constitutes a reasonable quality of life for our patients, and we can explore our colleagues' hopes, worries, and values using familiar communication techniques. Ultimately, we can support and align with both our patients and colleagues and work toward reframing a difficult situation.

Adding Silver to the Rainbow: Palliative and End-of-Life Care for the Geriatric LGBTQ Patient.

Lesbian, gay bisexual, transgender, and queer or questioning (LGBTQ) older adults have unique health care needs, especially in the palliative care and hospice setting. In this article, we present a male patient with metastatic ovarian cancer, admitted with worsening dyspnea, now at the end of life. Only his wife was aware of his identified gender, and nondisclosure was very important to him. As he continued to decline, the team navigated LGBTQ-sensitive care within the health care setting, insurance inequalities, and support and communication to his family. This case study summarizes clinical recommendations for the LGBTQ individual in the hospice and palliative care setting, suggesting how our patient's care may have been improved. With the changes in social acceptance and attitudes, the LGBTQ community has become more visible and their numbers appear to be growing. It is important, therefore, that hospice and palliative care providers be educated on their needs to provide competent and inclusive health care.

Algorithm-based decision support for symptom self-management among adults with Cancer: results of usability testing.

BACKGROUND: It is essential that cancer patients understand anticipated symptoms, how to self-manage these symptoms, and when to call their clinicians. However, patients are often ill-prepared to manage symptoms at home. Clinical decision support (CDS) is a potentially innovative way to provide information to patients where and when they need it. The purpose of this project was to design and evaluate a simulated model of an algorithm-based CDS program for self-management of cancer symptoms. METHODS: This study consisted of three phases; development of computable algorithms for self-management of cancer symptoms using a modified ADAPTE process, evaluation of a simulated model of the CDS program, and identification of design objectives and lessons learned from the evaluation of patient-centered CDS. In phase 1, algorithms for pain, constipation and nausea/vomiting were developed by an expert panel. In phase 2, we conducted usability testing of a simulated symptom assessment and management intervention for self-care (SAMI-Self-Care) CDS program involving focus groups, interviews and surveys with cancer patients, their caregivers and clinicians. The Acceptability E-scale measured acceptability of the program. In phase 3, we developed design objectives and identified barriers to uptake of patient-centered CDS based on the data gathered from stakeholders. RESULTS: In phase 1, algorithms were reviewed and approved through a consensus meeting and majority vote. In phase 2, 24 patients & caregivers and 13 clinicians participated in the formative evaluation. Iterative changes were made in a simulated SAMI-Self-Care CDS program. Acceptability scores were high among patients, caregivers and clinicians. In phase 3, we formulated CDS design objectives, which included: 1) ensure patient safety, 2) communicate clinical concepts effectively, 3) promote communication with clinicians, 4) support patient activation, and 5) facilitate navigation and use. We identified patient barriers and clinician concerns to using CDS for symptom self-management, which were consistent with the chronic care model, a theoretical framework used to enhance patient-clinician communication and patient self-management. CONCLUSION: Patient safety and tool navigation were critical features of CDS for patient self-management. Insights gleaned from this study may be used to inform the development of CDS resources for symptom self-management in patients with other chronic conditions.