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.

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.

Clinician perspectives on symptom and quality of life experiences of patients during cancer therapies: Implications for eHealth.

OBJECTIVE: The purpose of this study was to explore clinician experiences with cancer symptom and quality of life (SQL) management from diagnosis throughout therapy in the ambulatory setting, plus identify preferences for a future SQL decision support system. METHODS: Eligible clinicians worked in ambulatory cancer care with responsibility for direct patient care. Focus groups were conducted to discuss symptom management throughout the treatment experience and features desired in a future decision support system. Each group was audio-recorded, transcribed, de-identified, and entered into NVivo 9 for analysis. Open and axial coding was completed, grouping common concepts into nodes; large constructs among the nodes were identified and main messages were synthesized. RESULTS: A total of 118 clinicians were contacted by email resulting in a final sample of 51 attending 1 of 9 focus groups. Clinicians described a standard face-to-face approach to assessment of SQL, before and throughout therapy. Preparing patients for expected symptoms and approaches to management included paper-based patient education materials and referrals. Communicating with patients between visits was covered in detail, notably use of telephone and email. Future system features desired by the clinicians included an electronic, Web-based system with real-time, trended data, reasonable alerts, and tailored information for patients. CONCLUSIONS: Cancer care specialists reported strategies to assess and manage cancer SQL in ambulatory care including patient-reported outcome measures, contact communication modes, face-to-face interviews, and paper-based patient education materials. Future system features desired by clinicians included an electronic, Web-based system with real-time, trended data, reasonable alerts, and tailored information for patients.

Patient and caregiver perspectives on decision support for symptom and quality of life management during cancer treatment: Implications for eHealth.

OBJECTIVES: Adequate symptom and quality-of-life (SQL) management is a priority during cancer treatment. eHealth is a timely way to enhance patient-engagement, facilitate communication, and improve health outcomes. The objectives of this study were to describe patient and caregivers' perspectives for providing, processing, and managing SQL data to enhance communication and identify desired components for decision support. METHODS: Data were collected from 64 participants through questionnaires and focus groups. Analysis was conducted using NVivo. Open and axial coding was completed, grouping commonalities and large constructs into nodes to identify and synthesize themes. RESULTS: Face-to-face meetings with clinicians were the prime time to communicate, and patients strove to understand treatment options and the effect on SQL by bringing caregivers to their visits, taking notes, tracking symptoms, and creating portable health records. Patients/caregivers struggled to self-manage their symptoms and were uncertain when to contact clinicians when experiencing uncontrolled symptoms. Most participants identified eHealth solutions for decision support. However, 38% of participants (n = 24) rarely used computers and identified non-eHealth options for decision support. Core components for both eHealth and non-eHealth systems were access to (1) cancer information, (2) medical records, (3) peer support, and (4) improved support and understanding on when to contact clinicians. CONCLUSIONS: Patients were faced with an overwhelming amount of information and relied on their caregivers to help navigate the complexities of cancer care and self-manage SQL. Health technologies can provide informational support; however, decision support needs to span multiple venues to avoid increasing disparities caused by a digital divide.

Defining a standard set of patient-centred outcomes for lung cancer.

In lung cancer, outcome measurement has been mostly limited to survival. Proper assessment of the value of lung cancer treatments, and the performance of institutions delivering care, requires more comprehensive measurement of standardised outcomes.The International Consortium for Health Outcomes Measurement convened an international, multidisciplinary working group of patient representatives, medical oncologists, surgeons, radiation oncologists, pulmonologists, palliative care specialists, registry experts and specialist nurses to review existing data and practices. Using a modified Delphi method, the group developed a consensus recommendation ("the set") on the outcomes most essential to track for patients with lung cancer, along with baseline demographic, clinical and tumour characteristics (case-mix variables) for risk adjustment.The set applies to patients diagnosed with nonsmall cell lung cancer and small cell lung cancer. Our working group recommends the collection of the following outcomes: survival, complications during or within 6 months of treatment and patient-reported domains of health-related quality of life including pain, fatigue, cough and dyspnoea. Case-mix variables were defined to improve interpretation of comparisons.We defined an international consensus recommendation of the most important outcomes for lung cancer patients, along with relevant case-mix variables, and are working to support adoption and reporting of these measures globally.

Advances in palliative medicine and end-of-life care.

Palliative care improves the quality and cost-effectiveness of adult and pediatric patient care, and it decreases unwanted hospitalizations and aggressive care at the end of life. National palliative care quality standards and preferred practices can be used for benchmarking by institutions, health care systems, and accrediting bodies. Pain and symptom management and the management of delirium for patients is now possible for the vast majority of patients, even those with advanced disease. However, because of shortages of specialists providing "tertiary" palliative care, significant improvements are needed in generalist-level palliative care among oncologists, intensivists, and specialists caring for patients with advanced cardiac, pulmonary, renal, and hepatic diseases. POLST (Physician Orders for Life-Sustaining Treatment) forms are a major advance in end-of-life care. They enable patients' advance directives to be valid wherever they are cared for (home, hospital, or nursing facility).

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.

Integrating palliative care into comprehensive cancer care.

While there are operational, financial, and workforce barriers to integrating oncology with palliative care, part of the problem lies in ourselves, not in our systems. First, there is oncologists' "learned helplessness" from years of practice without effective medications to manage symptoms or training in how to handle the tough communication challenges every oncologist faces. Unless they and the fellows they train have had the opportunity to work with a palliative care team, they are unlikely to be fully aware of what palliative care has to offer to their patients at the time of diagnosis, during active therapy, or after developing advanced disease, or may believe that, "I already do that." The second barrier to better integration is the compassion fatigue many oncologists develop from caring for so many years for patients who, despite the oncologists' best efforts, suffer and die. The cumulative grief oncologists experience may go unnamed and unacknowledged, contributing to this compassion fatigue and burnout, both of which inhibit the integration of oncology and palliative care. Solutions include training fellows and practicing oncologists in palliative care skills (eg, in symptom management, psychological disorders, communication), preventing and treating compassion fatigue, and enhancing collaboration with palliative care specialists in caring for patients with refractory distress at any stage of disease. As more oncologists develop these skills, process their grief, and recognize the breadth of additional expertise offered by their palliative care colleagues, palliative care will become integrated into comprehensive cancer care.

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.

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.

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.

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.

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 for the patient with mesothelioma.

The role of palliative care in the medical management of malignant mesothelioma is multifaceted, requiring proficiency in multiple disciplines. Pain management is a key aspect of this care. The most common sources of pain are postthoracotomy syndrome, chemotherapy-induced peripheral neuropathy, involvement of the intercostal nerves by tumor invading the chest wall, and dyspnea. The palliative care provider also must be prepared to recognize and treat psychological disorders, to identify other social and spiritual sources of distress, including anxiety and depression, and to provide or arrange for counseling to patient and family for advance care planning, as well as grief and bereavement.

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.

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.

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.

Spinal cord compression in patients with advanced metastatic cancer: "all I care about is walking and living my life".

As 1 of the 12,700 US cancer patients who, each year, develops metastatic spinal cord compression, Ms H wishes to walk and live her life. Sadly, this wish may be difficult to fulfill. Before diagnosis, 83% to 95% of patients experience back pain, which often is referred, obscuring the site(s) of the compression(s). Prediction of ambulation depends on a patient's ambulatory status before therapy and time between developing motor defects and starting therapy. Ambulatory patients with no visceral metastases and more than 15 days between developing motor symptoms and receiving therapy have the best rate of survival. To preserve ambulation and optimize survival, magnetic resonance imaging should be performed for cancer patients with new back pain despite normal neurological findings. At diagnosis, counseling, pain management, and corticosteroids are begun. Most patients are offered radiation therapy. Surgery followed by radiation is considered for selected patients with a single high-grade epidural lesion caused by a radioresistant tumor who also have an estimated survival of more than 3 months. Team discussions with the patient and support network help determine therapy options and include patient goals; assessment of risks, benefits, and burdens of each treatment; and discussion of the odds of preserving prognosis of ambulation and of the effect of therapy on the patient's overall prognosis. Rehabilitation improves impaired function and its associated depression. Clinicians can help patients cope with transitions in self-image, independence, family and community roles, and living arrangements and can help patients with limited prognoses identify their end-of-life goals and preferences about resuscitation and entering hospice.