Journal of pain and symptom management最新文献

Context: A prenatal diagnosis of complex congenital heart disease (cCHD) introduces significant emotional, social, and financial stress for families. Uncertainty about the future is a central source of distress for parents, particularly surrounding management options and anticipated outcomes. Little is known about how fetal cardiologists present management options, address anticipated outcomes, and offer supportive services.

Objective: To examine how fetal cardiology clinicians discuss management options, anticipated outcomes, and supportive services with parents following a prenatal diagnosis of complex congenital heart disease (cCHD).

Methods: Initial fetal cardiology consultations were audio-recorded, transcribed, and analyzed qualitatively. Deductive coding focused on management options (e.g., invasive intervention, comfort care), anticipated outcomes (e.g., quality of life, mortality risk), and supportive services (e.g., social work, peer support, palliative care).

Results: Five fetal cardiology clinicians from one tertiary care institution participated in 19 initial consultations. Management options discussed included invasive intervention and comfort care. Clinicians frequently described anticipated outcomes involving quality of life and mortality risk but rarely used those terms specifically. Families were most engaged during quality-of-life discussions. Palliative care as a consulting service was selectively introduced, often when the CHD diagnosis carried a higher risk of mortality. The service was frequently described as additional support.

Conclusion: Fetal cardiology consultations offer an important opportunity to support families navigating uncertainty following a prenatal diagnosis of CHD. Clinicians approached these conversations with empathy and a focus on long-term outcomes, though discussions about management options varied. There is an opportunity for increased presentation and integration of palliative care consultants as a longitudinal, family-centered resource, regardless of mortality risk, which may enhance supports available to families during this highly emotional period. Ongoing efforts to improve family-centered counseling and resources, such as access to perinatal palliative care, may help ensure families receive comprehensive, values-aligned information across the spectrum of care pathways.

Palliative care, whether in the form of early Supportive Palliative Care or later in the course of illness with Hospice, serves not only the seriously ill patient, but the patient's family members. When the family includes children associated with the seriously ill patient, the needs of those children often go unmet, especially in adult palliative care. This paper focuses on the work done and the methods used by Certified Child Life Specialists (CCLSs) working in adult palliative care. Using the literature and our 15+ year experience integrating Child Life Services into both community and academic center Supportive Palliative Care services, we argue it is imperative that the core adult palliative care interdisciplinary team include Certified Child Life Specialists trained to help children of the seriously ill adult understand their loved adult's illness, and to help adults communicate effectively with and better support the child.

Context: Pediatric palliative care and complex care programs frequently collaborate when caring for a shared population of children with medical complexity (CMC), despite programmatic heterogeneity across institutions. Yet, scant literature exists documenting the nature of collaboration between these subspecialties.

Objectives: The aim of the present study is to explore perceived facilitators and challenges to collaboration among pediatric complex care and palliative care providers within a subset of Midwest medical institutions.

Methods: Eighteen pediatric complex care and palliative care providers across ten academic medical centers completed semi-structured interviews. In addition to perceived facilitators and challenges, providers were asked to comment on hypothetical changes they would make to enhance future collaboration. Audio recordings were transcribed and qualitatively analyzed using thematic analysis.

Results: Qualitative analysis of provider commentary revealed individual and institution-level facilitators and challenges to collaboration between both teams, descriptions of the collaborative process when facilitators are optimized, and visions for enhancing future collaboration.

Conclusion: Participant responses from both subspecialties identified similar facilitators and challenges to collaboration, and supported greater integration as a means of mitigating collaborative challenges, offering ideas such as embedded programs, shared staff, or merging of divisions, among other interdisciplinary care models Future research is needed to explore methods of capturing outcomes associated with different integrative models, ideally through the incorporation of patient and family voices as a means of evaluating how clinical care is received.

Context: The lack of valid methods to identify specialist palliative care (PC) delivery in population-level data impedes comprehensive understanding of its use.

Objective: To develop and validate a claims-based algorithm to identify receipt of specialist PC in Medicare beneficiaries with metastatic cancer.

Methods: We developed a claims-based algorithm to identify specialist PC, using a physician billing claim from a known PC clinician as the gold standard, retaining candidate variables with a positive predictive value (PPV) >60%. We evaluated algorithm performance and conducted simulation to measure bias resulting from algorithm use when examining the association between specialist PC and outcomes.

Results: We identified 1,384,750 claims from 68,121 patients. The prevalence of specialist PC was 3.8% on the claim-level and 26.8% on the patient-level. The provider specialty code for "hospice and palliative care" (PPV 80.4%) and the diagnosis code Z51.5 for "encounter for palliative care" (PPV 67.5%) were included, where claims were counted as specialist PC if they had either variable. PPV and sensitivity of the algorithm were 68.0% and 83.0% respectively on a claim-level, and 78.4% and 88.3% respectively on a patient-level. Percent bias differed by outcome (hospice 4.2%, hospice enrollment ≥3 days 5.3%, intensive care unit use in the last 30 days of life -1.7%, chemotherapy use in the last 14 days of life -1.3%).

Conclusions: A simple algorithm can identify receipt of specialist PC care in Medicare claims for patients with metastatic cancer with reasonable accuracy. Algorithm use results in potentially acceptable amounts of bias, depending on study aims.

Context: Depression is prevalent and often undertreated in people living with advanced cancer. Methylphenidate (MPH) has been proposed as a faster-acting pharmacologic intervention in this setting, yet evidence remains limited.

Objectives: To evaluate MPH's efficacy and safety for depression management in adults with advanced malignancies.

Methods: We conducted a pairwise systematic review and meta-analysis of double-blind, placebo-controlled randomized trials following Cochrane and PRISMA standards. PubMed, Embase, and CENTRAL were searched through April 04, 2025. The primary outcome was between-group change in depressive scores at 2 ± 1 weeks, expressed as standardized mean difference (SMD). Secondary outcomes included depression remission at 2 ± 1 weeks, expressed as risk ratio (RR) and risk difference (RD), and treatment-emergent adverse events (TEAEs). Random-effects models were applied.

Results: Three studies were included (MPH, n = 90; control, n = 99). Compared with placebo, MPH (10-45 mg/day as monotherapy or 10-20 mg/day as augmentation to conventional antidepressants) reduced depressive symptom severity (SMD, -0.81; 95%CI, -1.22 to -0.39; P < 0.001; I² = 32%). While relative risk for depression remission narrowly missed significance (RR, 1.69; 95%CI, 0.97 to 2.96; P = 0.07; I² = 50%), MPH increased the absolute probability of remission (RD, 0.22; 95%CI, 0.09 to 0.34; P < 0.001; I² = 0%; number needed to treat ≈ 5). Incidence of all analyzed TEAEs was similar between groups.

Conclusions: MPH may provide rapid, potentially meaningful improvement in depressive symptoms for people living with advanced cancer, while maintaining a favorable safety profile. Considering the small sample sizes and short follow-up durations across studies included in this exploratory meta-analysis, future large-scale trials are needed to confirm efficacy and define optimal candidates.

Context: Physician-assisted dying (PAD) is legal in a growing number of U.S. states, with access expanding nationally due to recent legislative changes. Despite this, how to address PAD in hospice and palliative medicine (HPM) fellowship programs remains undefined. The perspectives of HPM fellows regarding PAD education have not been studied.

Objectives: To assess HPM fellows' experiences and interest in a formal PAD curriculum, including preferred content areas and anticipated relevance to future practice.

Methods: An anonymous nine-item survey was sent to all HPM fellows (N = 21) at the Icahn School of Medicine at Mount Sinai. Survey domains included prior exposure to PAD, attitudes toward PAD education, and intention to provide PAD in future clinical practice.

Results: The response rate was 100%. Most fellows (81%) had no formal education on PAD. All respondents agreed that learning about PAD in fellowship is important. Topics of interest included ethical considerations (95%), legal criteria (86%), responding to requests in serious illness conversations (86%), navigating requests (76%), and pharmacology/modes of ingestion (71%). A majority (62%) were interested in an away elective with a PAD provider. While only 10% intended to provide PAD in future practice, 57% were unsure or had not thought about it, and 33% were not considering it.

Conclusion: Fellows unanimously supported including PAD education in HPM training, regardless of intent to participate in the practice. These findings underscore a clear educational need and may guide curriculum development. To our knowledge, this is the first survey assessing HPM fellows' views on PAD.

Context: Communication is critical to improving patient and family outcomes, yet clinicians remain undertrained. Effective communication training takes significant investments in personnel and programming. Little is known about what motivates and sustains clinician educators in such programs.

Objectives: This qualitative study aimed to learn more about 1) what motivates clinician communication skills educators (CSEs) to improve their own communication and educate others and 2) what sustains them in this work.

Methods: PedsTalk is a communication training program based on the VitalTalk model of small group role play within a single institution's Department of Pediatrics. We conducted a thematic analysis of one-on-one interviews of PedsTalk faculty CSEs focused on the experiences that motivated them to improve their own communication and commitment to teaching and sustaining these skills.

Results: Seventeen CSEs participated, representing eight specialties. The majority had seven or more years of experience in their field (post-training). Thematic content analysis revealed three major themes: Drive: My choices reflect what matters to me; Growth: My efforts have impact; and Connection: What sustains me. The relationship between communication and health equity was highlighted across themes. These themes that emerged mapped onto the primary sources of intrinsic motivation according to self-determination theory: autonomy, competence, and relatedness, respectively.

Conclusion: CSEs are intrinsically motivated by the drive to work on what matters to them, opportunities for growth as a communicator and educator, and their connection to others in this work. Educators and leaders can utilize these factors to build and sustain momentum in their programs.

Context: Previous studies have shown that bathing of terminal cancer patients led to significant immediate improvements in symptoms, but the earlier work had various limitations.

Objectives: This study aimed to determine the effects of bathing on physical and mental symptoms in terminal cancer patients in Japan.

Methods: This was a prospective, controlled, observational study involving terminal cancer patients in palliative care wards at multiple institutions in Japan. In routine care, nurses assisted participants who wished to take a warm bath (at 40%-45°C) lasting about 10 minutes during the day. The severity of seven symptoms, including pain, fatigue, sleepiness, unpleasant sleepiness, mood, anxiety, and lack of appetite, was self-assessed on a scale of 0-10 (0: none, 10: unbearable distress) on the day before bathing, day of bathing, morning and evening of the following day, and 30 minutes after bathing on the day of bathing only. Patient background, physical condition, drug information, and care environment before and after hospitalization were evaluated. Differences in scores before and after bathing, changes the day before and the day after, and comparisons between the bathing and nonbathing groups were evaluated; effect sizes were calculated; and logistic regression analysis was performed. This study involved a within-subject comparison design, evaluating each patient on a bathing day and a corresponding nonbathing day.

Results: A total of 146 terminal cancer patients (86 men; median age 78.5 ± 12.3 years) were evaluated. Significant symptom relief was seen not only on the day of bathing, but also continuing to the following day, especially for fatigue and mood.

Conclusion: Bathing is effective in ameliorating the symptoms of terminal cancer patients.

Context: Chronic and intractable hiccups are a debilitating symptom in palliative care, yet the evidence for their pharmacological management is sparse and of low certainty, as certain study designs are frequently excluded from traditional systematic reviews.

Objectives: To synthesize all available quantitative and qualitative evidence for the pharmacological management of chronic and intractable hiccups in adults receiving palliative care.

Methods: We conducted a mixed methods systematic review, including a rapid umbrella review, following a registered PROSPERO protocol (CRD42024514442) in accordance to the PRISMA and SWiM guidelines. Seven electronic databases, trial registries and grey literature sources were searched from inception until August 2025 for studies of any design and systematic reviews. Quantitative data on hiccup reduction or cessation following pharmacological use, and qualitative phenomena of interest on patient and clinician experiences were extracted. Studies were critically appraised via JBI and AMSTAR-2 tools, synthesized separately using a convergent segregated approach, and then integrated narratively. This was performed independently by two reviewers.

Results: A total of 88 primary studies (85 quantitative, two qualitative and one mixed methods) and six systematic reviews were included. The quantitative synthesis, comprising 156 patients, identified gabapentin and baclofen as the most frequently reported effective agents, alongside various dopamine antagonists, benzodiazepines, medication rotation, combination therapies and novel approaches. The qualitative synthesis revealed four themes: the profound psychosocial impact of hiccups, perceived treatment ineffectiveness, a disconnect between patient experience and clinical awareness, and a patient preference for symptom management over cure.

Conclusion: The evidence for management of chronic and intractable hiccups in palliative care is of very low certainty and likely subject to significant publication bias. Clinical goals should be reframed from cure to "palliative control", prioritizing functional improvement and a reduction in symptom burden.