The cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden.

INTRODUCTION: The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time. METHODS: A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations. RESULTS: Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective). CONCLUSIONS: Cancer caregiving is dynamic; CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services.

Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit.

BACKGROUND: The engagement of family caregivers in oncology is not universal or systematic. OBJECTIVE: We implemented a process intervention (ie, patient-caregiver portal system) with an existing patient portal system to (1) allow a patient to specify their caregiver and communication preferences with that caregiver, (2) connect the caregiver to a unique caregiver-specific portal page to indicate their needs, and (3) provide an electronic notification of the dyad's responses to the care team to inform clinicians and connect the caregiver to resources as needed. METHODS: We assessed usability and satisfaction with this patient-caregiver portal system among patients with cancer receiving palliative care, their caregivers, and clinicians. RESULTS: Of 31 consented patient-caregiver dyads, 20 patients and 19 caregivers logged in. Further, 60% (n=12) of patients indicated a preference to communicate equally or together with their caregiver. Caregivers reported high emotional (n=9, 47.3%), financial (n=6, 31.6%), and physical (n=6, 31.6%) caregiving-related strain. The care team received all patient-caregiver responses electronically. Most patients (86.6%, 13/15 who completed the user experience interview) and caregivers (94%, 16/17 who completed the user experience interview) were satisfied with the system, while, of the 6 participating clinicians, 66.7% agreed "quite a bit" (n=1, 16.7%) or "very much" (n=3, 50%) that the system allowed them to provide better care. CONCLUSIONS: Our findings demonstrate system usability, including a systematic way to identify caregiver needs and share with the care team in a way that is acceptable to patients and caregivers and perceived by clinicians to benefit clinical care. Integration of a patient-caregiver portal system may be an effective approach for systematically engaging caregivers. These findings highlight the need for additional research among caregivers of patients with less advanced cancer or with different illnesses.

Interventional pain management in cancer patients-a scoping review.

BACKGROUND: Pain is the most prevalent symptom in cancer patients. To improve pain care, World Health Organization (WHO) Pain ladder was introduced in 1986 as a template for choosing pain medications in oncological settings. Since then, advancements in oncological treatments have improved the survival of cancer patients, requiring prolonged analgesia in various treatment stages. Additionally, there have been newer challenges in pain management with opioid epidemic and associated opioid use disorders. This has shifted the focus from WHO Pain Ladder and brought new importance to the rapidly evolving realm of interventional pain modalities for cancer pain management. This article reviews such interventional pain and minimally invasive neurosurgical options for pain management in cancer patients. METHODS: Systemic literature search in PubMed, Cochrane, and Embase. This included review articles, randomized controlled trials, non-randomized clinical trials (RCTs), and case series. RESULTS: A large array of interventional pain modalities are available for oncological pain management. These modalities carry relatively lower risk and provide effective analgesia while reducing concerns related to opioid use disorder. They target various areas in the anatomical and physiological pain pathways and provide more focused options for pain management at various stages of cancer and survivorship. Additionally, with improved sterile techniques, better imaging modalities, and growing technical and clinical expertise, interventional pain modalities offer a safe and often more efficacious method of pain management nowadays. Procedural modalities like intrathecal (IT) pumps, neuromodulation, kyphoplasty, and newer more targeted ablative techniques are now increasingly finding more roles and indications in cancer population. CONCLUSIONS: Interventional pain techniques are rapidly evolving and have become an integral part of cancer pain management. They can provide an additional option for cancer pain management, and can help reduce opioid consumption, and associated opioid side effects. With improvement in imaging modalities, procedural techniques, hardware, and infection control, they have a good safety profile and provide a rapid and efficacious approach for cancer pain management. This review articles aims to provide a basic understanding of various interventional pain modalities, their indications, efficacy, safety data, and associated complications.

Should Buprenorphine Be Considered a First-Line Opioid for the Treatment of Moderate to Severe Cancer Pain?

Cancer pain remains a significant problem worldwide, affecting more than half of patients receiving anti-cancer treatment and most patients with advanced disease. Opioids remain the cornerstone of therapy, and morphine, given its availability, multiple formulations, price, and evidence base, is typically considered the first-line treatment for moderate to severe cancer pain. Buprenorphine has emerged in recent decades as an alternative opioid for treating chronic pain and substance use disorder (SUD). However, it remains controversial whether buprenorphine should be considered a first-line opioid for moderate to severe cancer pain. In this "Controversies in Palliative Care" article, three expert clinicians independently answer this question. Specifically, each group provides a synopsis of the key studies that inform their thought process, share practical advice on their clinical approach, and highlight the opportunities for future research. All three groups agree that there is a place for the use of buprenorphine as a first-line opioid in cancer pain. Specifically, they mention populations of elderly patients, patients with renal failure, and those with (SUD). They also underscore many unique and favorable characteristics of buprenorphine, such as the low risk for respiratory depression, lack of adverse effects on testosterone levels in men, no risk of serotonin syndrome when combined with antidepressants, and ease of use given its transdermal, transmucosal, and sublingual formulations. However, further studies are needed to guide the use of buprenorphine for cancer pain-primarily randomized clinical trials (RCTs) comparing buprenorphine with other opioids in various pain syndromes.

ADCC's Improving Goal Concordant Care Initiative: Implementing Primary Palliative Care Principles.

BACKGROUND: High-quality, timely goals of care communication (GOCC) may improve patient and caregiver outcomes and promote care that is consistent with patient preferences. PROBLEM: Cancer patients, and their loved ones, appreciate GOCC; however, oncologists often lack formal communication training, institutional support and structures necessary to promote the delivery, documentation, and longitudinal follow-up of GOCC. PROPOSED SOLUTION: The Alliance of Dedicated Cancer Centers (ADCC), representing 10 U.S. academic cancer hospitals, undertook the Improving Goal Concordant Care Initiative (IGCC). This national, 3-year implementation initiative was designed in Fall 2019 by a workgroup of quality, oncology, and palliative care leaders, as well as patient and family advisory committee members (PFAC). IGCC addresses systemic gaps by requiring four core components for participation: 1) Implementation of a formal communication skills training (CST) program, 2) Structured GOCC documentation in the electronic medical record that is visible to all clinicians, 3) Expectations regarding the timing and patient populations for GOCC, and 4) Implementation of a measurement framework. METHOD: Dyads of palliative and oncology leaders committed to attend regularly scheduled, ADCC-led, virtual meetings during the design and implementation phase, incorporating PFAC feedback at every stage. Using the RE-AIM framework, we describe process and outcome evaluation measures defined by implementation and measures workgroups and collected routinely, including: CST completion; trainee evaluation response rate, trainee-reported quality of CST, trainee changes in self-efficacy and distress; percent of high-priority patients participating in GOCC, and patient-reported response to the "Heard and Understood" scale (HU). IGCC's impact will be assessed using claims-based utilization metrics near the end of life (EOLM) and followed longitudinally. Qualitative evaluations near the completion of IGCC will provide insight into perceived barriers, enabling factors, and sustainability. OUTCOMES: Implementation of all IGCC components has begun at all sites. ADCC-wide, 35% of MD/DOs have completed CST (range by site: 8%-100%). CST is highly rated; in Quarter 3, 2022, 93%-100%, 90%-100% and 87%-100% of respondents reported above average to excellent CST quality, likelihood to use the skills and likelihood to recommend CST to others, respectively. Clinician self-efficacy and distress ratings are expected in late 2023. All sites have identified patient populations and continue to refine automated triggers and timelines; uptake of GOCC documentation has been slow. Eight of 10 sites have submitted patient-reported HU data. EOLM data are expected for all sites in early 2024. LESSONS LEARNED: Flexibility in implementation with shared definitions, measures, and learnings about approaches optimizes the ability of all centers to collaborate and make progress in improving GOCC. Flexibility adds to the complexity of understanding intervention effectiveness, the critical intervention components and the fidelity necessary to achieve specific outcomes.

A Pilot Study of a Collaborative Palliative and Oncology Care Intervention for Patients with Head and Neck Cancer.

Background: Palliative care improves symptoms and coping in patients with advanced cancers, but has not been evaluated for patients with curable solid malignancies. Because of the tremendous symptom burden and high rates of psychological distress in head and neck cancer (HNC), we evaluated feasibility and acceptability of a palliative care intervention in patients with HNC receiving curative-intent chemoradiation therapy (CRT). Methods: This was a prospective single-arm study in HNC patients receiving CRT at a single center in the United States. The intervention entailed weekly palliative care visits integrated with oncology care with a focus on symptoms and coping. The primary outcome was feasibility, defined as a >50% enrollment rate with >70% of patients attending at least half of the visits. To assess acceptability, we collected satisfaction ratings post-intervention. We also explored symptom burden, mood, and quality of life (QOL). Results: We enrolled 91% (20/22) of eligible patients. Patients attended 133 of 138 palliative care visits (96%); all 20 attended >85% of visits. Eighteen of 19 (95%) found the intervention "very helpful" and would "definitely recommend" it. QOL and symptom burden worsened from baseline to week 5, but subsequently improved at one-month post-CRT. Overall, patients valued the one-on-one format of the intervention and receipt of additional care. Conclusions: Our palliative care intervention during highly morbid CRT was feasible and acceptable with high enrollment, excellent intervention compliance, and high patient satisfaction. Future randomized studies will further explore the impact on patient-reported outcomes and health care utilization.

Developing an Integrated Caregiver Patient-Portal System.

We have developed an integrated caregiver patient-portal system (i.e., patient-caregiver portal) that (1) allows a patient to identify their primary caregiver and their communication preferences with that caregiver in the healthcare setting; (2) connects the caregiver to a unique portal page to indicate their needs; and (3) informs the healthcare team of patient and caregiver responses to aid in integrating the caregiver. The purpose of this manuscript is to report on the formative phases (Phases I and II) of system development. Phase I involved a pre-assessment to anticipate complexity or barriers in the system design and future implementation. We used the non-adaption, abandonment, scale-up, spread, and sustainability (NASSS) framework and rubric to conduct this pre-assessment. Phase II involved exploring reactions (i.e., concerns or benefits) to the system among a small sample of stakeholders (i.e., 5 palliative oncology patients and their caregivers, N = 10). The purpose of these two phases was to identify system changes prior to conducting usability testing among patient/caregiver dyads in palliative oncology (phase III). Completion of the NASSS rubric highlighted potential implementation barriers, such as the non-uniformity of caregiving, disparities in portal use, and a lack of cost-benefit (value) findings in the literature. The dyads' feedback reinforced several NASSS ratings, including the benefits of connecting caregivers and allowing for caregiver voice as well as the concerns of limited use of patient-portals by the patients (but not the caregivers) and the need for user assistance during stressful health events. One change that resulted from this analysis was ensuring that we provided research participants (users) with detailed guidance and support on how to log in and use a patient-caregiver portal. In future iterations, we will also consider allowing more than one caregiver to be included and incorporating additional strategies to enable caregivers to interact in the system as part of the care team (e.g., via email).

Palliative Care Clinicians' Perspectives of an Integrated Caregiver Patient-Portal System in Oncology.

Background: Despite recommendations and policies to integrate family caregivers into U.S. healthcare settings, caregivers are not systematically involved. Thus, we developed an Integrated Caregiver Patient-Portal system that (1) allows a patient to identify their primary caregiver and their communication preferences; (2) connects the caregiver to a unique portal page to indicate their needs; and 3) informs the care team of dyad responses to aid in integrating the caregiver. Objective: This formative research explored palliative care clinicians' perceptions of the system to inform refinements before usability testing. Methods: We conducted two focus groups with palliative care clinicians (N=11) at an NCI-designated cancer center. Transcripts were analyzed using an integrated approach to specify system benefits and concerns. Results: The most referenced benefits included: Learning information that they might not have known without the system; giving caregivers a voice or a way to express needs; and supporting an ideal model of care. Top concerns included lacking capacity to respond; needing to clarify clinician roles and expertise in responding to caregivers' needs; and ensuring ongoing system adaptability. Conclusions: The clinicians' feedback resulted in revisions including: (1) modifying the caregiver questions; (2) integrating social workers in the response; and (3) adding a text-based report to the care team. Implications for Practice: This formative research provided valuable feedback for portal development, and also contributes more broadly to recommendations related to integrating caregivers in healthcare. Foundational: This research provides practical and logistical relevance to the discussion on how to integrate caregivers into clinical care.

Development of a Web-Based Supportive Care Program for Patients With Head and Neck Cancer.

Patients undergoing radiation treatment for head and neck cancer experience significant side-effects that can impact a wide range of daily activities. Patients often report receiving insufficient information during and after treatment, which could impede rehabilitation efforts; they may also encounter practical and logistical barriers to receipt of supportive care. Thus, we developed a web-based program, My Journey Ahead, to provide information and strategies for managing symptom-focused concerns, which may be easily accessed from the patient's home. The purpose of this study was to evaluate patient acceptability and satisfaction with the My Journey Ahead program. In Phase 1, five patients with head and neck squamous cell carcinoma (HNSCC) reviewed the web-based program and provided initial feedback, which informed program modifications. In Phase 2, 55 patients were recruited to evaluate the program. Patient assessments were obtained prior to and after use of the web-based program, and included measures of psychological distress, self-efficacy in coping with cancer-related issues, and satisfaction with the website. Among the 55 patients enrolled, 44 logged in and viewed the web-based program. Participants reported high levels of satisfaction with the information received, and indicated that the website was interesting and easy to use. Older age and higher levels of self-efficacy in coping were each associated with higher levels of satisfaction with the website. In summary, the web-based program was well-received by patients, the majority of whom found it to be informative and useful. An easy-to-use web-based program, particularly for older patients who may have difficulty locating reliable evidence-based information on the internet, may be helpful in addressing survivors' needs in symptom management and coping with cancer. CLINICAL TRIAL REGISTRATION: https://clinicaltrials.gov/, NCT02442336.

Adult Cancer Pain, Version 3.2019, NCCN Clinical Practice Guidelines in Oncology.

In recent years, the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Adult Cancer Pain have undergone substantial revisions focusing on the appropriate and safe prescription of opioid analgesics, optimization of nonopioid analgesics and adjuvant medications, and integration of nonpharmacologic methods of cancer pain management. This selection highlights some of these changes, covering topics on management of adult cancer pain including pharmacologic interventions, nonpharmacologic interventions, and treatment of specific cancer pain syndromes. The complete version of the NCCN Guidelines for Adult Cancer Pain addresses additional aspects of this topic, including pathophysiologic classification of cancer pain syndromes, comprehensive pain assessment, management of pain crisis, ongoing care for cancer pain, pain in cancer survivors, and specialty consultations.

Recent advances in understanding and managing cancer pain.

Cancer pain remains a significant clinical problem worldwide. Causes of cancer pain are multifactorial and complex and are likely to vary with an array of tumor-related and host-related factors and processes. Pathophysiology is poorly understood; however, new laboratory research points to cross-talk between cancer cells and host's immune and neural systems as an important potential mechanism that may be broadly relevant to many cancer pain syndromes. Opioids remain the most effective pharmaceuticals used in the treatment of cancer pain. However, their role has been evolving due to emerging awareness of risks of chronic opioid therapy. Despite extensive research efforts, no new class of analgesics has been developed. However, many potential therapeutic targets that may lead to the establishment of new pharmaceuticals have been identified in recent years. It is also expected that the role of non-pharmacological modalities of treatment will grow in prominence. Specifically, neuromodulation, a rapidly expanding field, may play a major role in the treatment of neuropathic cancer pain provided that further technological progress permits the development of non-invasive and inexpensive neuromodulation techniques.

Management of chronic pain in cancer survivors.

Chronic pain is a frequent complication of cancer and its treatments and is often underreported, underdiagnosed, and undertreated. Pain in cancer survivors is caused by residual tissue damage from the cancer and/or the cancer therapy. This pain can be divided into 3 pathophysiologic categories: somatic, visceral, and neuropathic. The most common treatment-induced chronic pain syndromes are neuropathies secondary to surgery, radiation therapy, and chemotherapy. Comfort and function are optimized in cancer survivors by a multidisciplinary approach using an individually tailored combination of opioids, coanalgesics, physical therapy, interventional procedures, psychosocial interventions, and complementary and alternative modalities. Management of chronic pain must be integrated into comprehensive cancer care so that cancer patients can fully enjoy their survival.