Journal of Pain and Symptom Management

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CONTEXT: Quality measures have been devised for end-of-life care of older adults with cancer, but are lacking for adolescents and young adults (AYAs). OBJECTIVE: We previously conducted interviews with AYAs, family caregivers, and clinicians to identify priority domains for high quality care of AYAs with advanced cancer. The goal of this study was to use a modified Delphi process to form consensus around the highest priority quality indicators. METHODS: A modified Delphi process was conducted with 10 AYAs with recurrent or metastatic cancer, 11 family caregivers, and 29 multidisciplinary clinicians, using small group web conferences...

INTRODUCTION: With the expansion of palliative care services in clinical settings, clinical decision support systems (CDSSs) have become increasingly crucial for assisting bedside nurses and other clinicians in improving the quality of care to patients with life-limiting health conditions. OBJECTIVE: To characterize palliative care CDSSs and explore end-users' actions taken, adherence recommendations, and clinical decision time. METHOD: The CINAHL, Embase, and PubMed databases were searched from inception to September 2022...

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CONTEXT: Acupressure is a popular non-pharmacological intervention that is increasingly proven to effectively alleviate symptoms in patients with cancer. However, the effects of self-acupressure on cancer symptom management are less clear. OBJECTIVES: This systematic review is the first to summarize the current experimental evidence on self-acupressure for symptom management in cancer patients. METHODS: Eight electronic databases were searched for experimental studies that examined self-acupressure for cancer patients with symptoms and published in peer-reviewed English or Chinese journals...

CONTEXT: Provider grief, i.e., grief related to the death of patients, often forms an ongoing and profound stressor impacting healthcare providers' ability to maintain their sense of well-being, avoid feeling overwhelmed, and sustain quality and compassionate patient care over time. OBJECTIVES: This narrative review presents findings on the types of interventions hospitals have offered to physicians and nurses to address provider grief. METHODS: Searches of PubMed and PsycINFO were conducted for articles (e...

CONTEXT: Caregivers managing symptoms of family members with cancer during home hospice care, often feel ill-prepared and need patient care coaching. OBJECTIVES: This study aimed to determine the efficacy of an automated mHealth platform that included caregiver coaching on patient symptom care and nurse notifications of poorly controlled symptoms. The primary outcome was caregiver perception of patients' overall symptom severity throughout hospice care and at weeks 1, 2, 4 and 8...

CONTEXT: Regret plays a central role in surrogate decision making. Research on decisional regret in family surrogates is scarce and lacks longitudinal studies to illustrate the heterogenous, dynamic evolution of decisional regret. OBJECTIVE: To identify distinct decisional-regret trajectories from end-of-life (EOL) decision making through the first 2 bereavement years among surrogates of cancer patients. METHODS: A prospective, longitudinal, observational study was conducted on a convenience sample of 377 surrogates of terminally ill cancer patients...

CONTEXT: Low recruitment rates in palliative care clinical trials amongst Black and rural individuals have been attributed to lack of trust and procedural barriers. Community engagement strategies have increased clinical trial participation of under-represented populations. OBJECTIVE: Describe a successful community-engaged recruitment strategy in an ongoing multi-site randomized clinical trial (RCT). STUDY DESIGN AND METHODS: Using community-based participatory research principles and input from a prior pilot study's community advisory group (CAG), we designed a novel recruitment strategy for Community Tele-Pal, a 3-site, culturally based palliative care tele-consult RCT for Black and White seriously ill inpatients and their family caregivers...

CONTEXT: Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as facilitate care coordination and transitions for children with serious illness. OBJECTIVES: This study aimed to characterize the national status of OPPC programmatic development and operationalization in the United States. METHODS: Utilizing a national report, freestanding children's hospitals with existing PPC programs were identified to query OPPC status...

CONTEXT: Clinical practice guidelines advocate for routine assessment of symptoms and adverse events during immunotherapy treatment of cancer. Outside the clinical trial setting, there are few examples of such assessment in practice. OBJECTIVES: To identify, appraise and synthesise the available literature regarding the assessment of immune-related symptoms and adverse events in patients with cancer beyond the clinical trial setting. Specifically, we aimed to identify the measurement instruments used, who completes these and when...

CONTEXT: Palliative care services are commonly provided to hospitalized patients, but accurately predicting who needs them remains a clinical challenge. OBJECTIVE: To assess the effectiveness on clinical outcomes of an artificial intelligence (AI)/machine learning (ML) decision support tool for predicting patient need for palliative care services in the hospital. METHODS: The study design was a pragmatic, cluster-randomized, stepped-wedge clinical trial in 12 nursing units at two hospitals over a 15-month period between August 19, 2019, and November 17, 2020...

CONTEXT: Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices. OBJECTIVES: To describe community-based program referrals from a PPC team, identifying factors associated with referral type, and potential misalignment between patient needs and referral received. METHODS: Chart abstraction of patients seen in 2017 by the PPC team of a large, urban children's hospital, followed for at least 6 months or until death, including clinical and demographic characteristics, and referrals to hospice and HBPC...

CONTEXT: Thirst and dry mouth are interlinked symptoms that frequently cause significant distress for patients with life-limiting conditions. OBJECTIVES: The objective of this rapid review was to identify and synthesise effective interventions that relieve perceptions of thirst and dry mouth of patients with palliative care and end-of-life care needs. METHODS: Eligible studies were undertaken in clinical settings, with patients experiencing thirst-related distress and/or dry mouth...

CONTEXT: This statement fills a significant gap in the efforts to demonstrate outcomes of the chaplaincy role in health care and to provide direction for quality measurement related to spiritual care as a key domain of serious illness care. OBJECTIVE: The objective of this project was to develop the first major consensus statement on the role and qualifications of health care chaplains in the US. METHOD: The statement was developed by a diverse panel of highly regarded professional chaplains and non-chaplain stakeholders...

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OBJECTIVE: Describe pediatric palliative care (PPC) patterns and treatment intensity during the last 48 hours of life among neonatal intensive care unit (NICU) patients in the Southern U.S. who received specialized PPC. DESIGN: Retrospective cohort analysis SETTING/ SUBJECTS: Infants who received PPC consultation in the NICU before death in two NICUs (in Alabama and Mississippi) from 2009-2017 (n=195). MEASUREMENTS: Medical record abstraction included: clinical characteristics of NICU infants, palliative and end-of-life care characteristics, patterns of PPC, and intensive medical treatments in the last 48 hours of life...

CONTEXT: Many cancer survivors experience a lingering symptom burden after chemotherapy. OBJECTIVES: In this sequential multiple assignment randomized trial, we tested optimal sequencing of two evidence-based interventions for symptom management. METHODS: Survivors of solid tumors (N=451) were interviewed at baseline and stratified as high or low need for symptom management based on comorbidity and depressive symptoms. High need survivors were randomized initially to the 12-week Symptom Management and Survivorship Handbook (SMSH, N=282) or 12-week SMSH with 8 weeks of Telephone Interpersonal Counseling (TIPC, N=93) added during weeks 1-8...

CONTEXT: Stigma is known to impact the care of patients with opioid use disorder (OUD). OBJECTIVES: This qualitative study seeks to understand how stigma is expressed in the medical chart by healthcare workers towards patients with cancer pain and OUD treated at an academic medical center. METHODS: This descriptive qualitative study utilized a thematic analysis approach to analyze the medical charts of 25 hospitalized patients with current or previous opioid use disorder and cancer with respect to their pain care in forty pain-related hospital admissions to a tertiary academic center from 2015-2020...

CONTEXT: Spiritual pain contributes to the suffering of cancer patients. However, it is unclear whether patients seen outside of palliative care report spiritual pain and its relationship with symptom burden. OBJECTIVES: Characteristics of patients reporting spiritual pain were examined, as well as the association of spiritual pain with symptom burden and how spiritual pain affected the factor structure of the Edmonton Symptom Assessment System (ESAS). METHODS: A retrospective chart review was conducted of integrative oncology patients who completed the PROMIS10 and a modified ESAS (ESAS-FS) including financial distress and spiritual pain (pain deep in your soul/being that is not physical)...