Palliative & Supportive Care最新文献

Objectives: The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative Care (EORTC QLQ-C15-PAL) is designed to measure quality of life (QoL) in cancer patients receiving palliative care. The aim of this study was to translate and validate an Urdu version of the questionnaire, which was previously lacking.

Methods: Following formal approval from the EORTC, the QLQ-C15-PAL was translated into Urdu. Patients admitted under the palliative care service at a tertiary care center in Karachi, Pakistan, were enrolled in this cross-sectional study, and the Urdu QLQ-C15-PAL and the Edmonton Symptom Assessment Scale (ESAS) forms were administered. Performance status was assessed using the Palliative Performance Scale (PPS). Cronbach's alpha and Pearson correlation coefficients were determined to gauge reliability and validity. Concurrent and known-group validity were tested using ESAS responses and PPS assessments.

Results: One hundred patients with varying primary cancer sites were included. Cronbach's alpha for the overall questionnaire was 0.86 and was >0.8 for all subscales except fatigue, where it was 0.697. All correlations to indicate convergent validity had coefficients >0.8 and 87% of correlations between "unrelated" domains were weak, indicating discriminant validity. Known group validity was established and improved QoL was observed in the high PPS (>40) subgroup of patients across multiple domains. However, concurrent validity was not strongly established.

Significance of results: The Urdu QLQ-C15-PAL is a reliable and valid tool to measure QoL in cancer patients who speak Urdu. However, replication of our results in other settings is warranted.

Objective: To understand how the Go Wish Cards Game (GWCG) can support the expression of values, wishes, and preferences at the end of life among women living with advanced breast and/or gynecological cancer.

Methods: This descriptive qualitative study was conducted as part of a larger randomized clinical trial. Participants were recruited from a leading cancer center in Brazil and invited to sort the GWCG cards into three categories: "very important," "somewhat important," and "not important." The 10 cards rated as "very important" were discussed individually to explore their meanings. At the end of the session, participants were asked: "What did it mean for you to play the cards?" Narratives associated with the "very important" cards were analyzed using content analysis based on Bardin's methodological framework.

Results: Thirty-three women completed the GWCG. Participants described the game as a meaningful opportunity for reflection, communication, and expression of personal values and end-of-life wishes. Discussions of the "very important" cards elicited narratives focused on trust-based relationships, emotional and spiritual support, dignity, and relief from suffering. The most frequently selected cards included wishes such as "to have a doctor I trust and nurses who care about me" and "to have my family and friends with me," reflecting shared priorities across narratives. Values and wishes were organized into three overarching dimensions: emotional and existential connections; dignity and autonomy; and care and comfort at the end of life. The GWCG was perceived as a valuable tool for facilitating the expression of biopsychosocial and spiritual values.

Significance of results: The findings indicate that the GWCG supports reflection and the articulation of end-of-life values, wishes, and priorities, particularly those related to dignity, autonomy, comfort, and emotional connection. The tool shows potential to promote meaningful conversations and care aligned with what gives purpose and meaning to women living with advanced cancer.

Objective: Acute Palliative and Supportive Care Units (APSCUs) provide unique and tailored care to patients with advanced chronic illness. In an APSCU, patients receive intensive palliative care while remaining in an acute care hospital setting. This allows for physical and psychological suffering to be aggressively treated by a dedicated interdisciplinary team. In the case of our patient, the APSCU changed the trajectory of his expected outcome of in-hospital death to a successful discharge home.

Methods: We report the case of a patient with advanced colon cancer who suffered cardiac arrest in the emergency department and was expected to die soon after transition to comfort-oriented care.

Results: After terminal extubation, our patient continued to have agitated delirium and was transferred to our APSCU for aggressive symptom control. He stabilized and progressively became more responsive, prompting a change in his plan of care with a goal of discharge home with hospice. The APSCU's interdisciplinary team was able to adapt to the patient's unexpected clinical improvement and provide him and his family with the medical, psychosocial, and spiritual expertise to prepare him for a successful discharge home, where he ultimately died 6 weeks later.

Significance of results: The case report demonstrates that an APSCU, with its skilled interdisciplinary team in the acute care hospital, is an ideal setting to provide patient-centered care for seriously ill patients and their families.

Objectives: Patients with non-English language preference (NELP) face significant barriers to safe and effective communication in palliative and supportive care. These barriers compromise quality, delay care, and heighten the risk of unmet psychosocial needs, particularly when compounded by health literacy concerns and limited access to translated resources.

Methods: We describe two Spanish-speaking patients with advanced cancer whose inpatient and outpatient supportive care was complicated by language barriers, leading to communication gaps, including symptom misinterpretation and inadequate family discharge education. These factors contributed to significant distress and safety risks.

Results: Interdisciplinary interventions, including professional interpreter use, bilingual supportive care psychology, teach-back education, medication relabeling in Spanish, and culturally tailored communication, helped restore trust, alleviate suffering, and align care with patient and family values. In one case, a lack of validated Spanish versions of the Edmonton Symptom Assessment System within the electronic medical record (EMR) hindered symptom self-reporting and safety. Following multiple requests, the EMR team initiated development of a Spanish-language template to facilitate future integration.

Significance of the results: Structural gaps in language accessibility compound distress, reduce autonomy, and threaten safety. These cases underscore that interpreter services alone are insufficient. Integrating validated multilingual tools into EMRs, standardizing translated discharge instructions, and expanding access to in-person interpreters are critical steps toward equitable care. Institutionalizing linguistically responsive systems is essential for ensuring safety, equity, and dignity in palliative care for patients with NELP.

Background: Zinc is a micronutrient essential for taste perception and may be prescribed for dysgeusia in cancer patients undergoing treatment. However, overconsumption of zinc can lead to copper deficiency, which is likely under-recognized and can present as fatigue, nausea, anemia, and myelopathy.

Case presentation: A patient in his 70s with multiple myeloma and gastroparesis taking zinc supplementation to treat dysgeusia for the past 2 years presented with generalized fatigue, lightheadedness, nausea, neutropenia, anemia, gait disturbance, and worsening numbness and tingling in the bilateral lower extremities and hands. He was found to have hypocupremia in the setting of prolonged zinc supplementation and admitted for inpatient treatment with IV cupric chloride. His symptoms gradually improved over the course of approximately 5-6 weeks.

Conclusions: Clinicians should be vigilant about screening for copper deficiency symptoms in patients taking zinc supplementation and avoid prolonged courses or overprescribing of zinc. Hypocupremia should be promptly diagnosed and treated to prevent permanent neurological deficits.

Objective: This qualitative study explored nurses' experiences of facing death while caring for bedridden patients in palliative and long-term care settings. Nurses are the primary witnesses to the final phase of life, where technical competence and emotional endurance coexist. Understanding how nurses perceive death and how knowledge, time, and communication affect their caregiving can provide insights into improving end-of-life nursing practices.

Methods: The study was conducted with 70 primary nurse-caregivers of bedridden patients who were hospitalized in the palliative clinic of a university and an educational research hospital in Istanbul between April and August 2024. The research data were obtained through face-to-face interviews using a semi-structured interview form. The interviews were recorded on a voice recorder. The data obtained from the interviews were analysed thematically.

Results: Three main themes were identified: Deficits in Knowledge and Education, Time Management, and Communication and Coordination. Nurses expressed uncertainty and emotional tension when providing care for dying patients. Inadequate end-of-life education heightened their fear of making mistakes. Heavy workload and limited time constrained emotional presence at the bedside. Fragmented communication among healthcare professionals increased feelings of isolation and moral distress. Across these themes, nurses experienced a silent but persistent awareness of death that shaped their professional identity and coping strategies.

Significance of results: Nurses caring for bedridden patients constantly face death, balancing medical duties with human vulnerability. Including death education, emotional support, and effective interdisciplinary communication in nursing practice can improve nurses' resilience and the quality of end-of-life care.

Objectives: The importance of palliative care in cancer care is underscored, yet there is a significant gap in research specifically focusing on the role of social workers in palliative cancer care. This qualitative study aims to better articulate the specific roles of social workers within palliative oncology settings.

Methods: Data were collected by semi-structured Zoom interviews with social workers in palliative cancer care between November 2023 and January 2024. Thematic analysis was used to identify unique themes.

Results: Ten social workers in palliative cancer care were recruited for this study. Eight key themes related to social workers' role emerged from the interviews. These were the following: (1) mapping out holistic needs through a biopsychosocial-spiritual assessment, (2) providing individual and family counseling, (3) patient and family psychoeducation, (4) resource identification and referral, (5) building communication bridges between patients, families, and oncology teams, (6) promoting patient and family engagement and voice in shared decision-making in cancer care, (7) providing anticipatory grief and bereavement counseling, and (8) strengthening team resilience and fostering well-being.

Significance of results: This study builds upon prior work by focusing specifically on the roles of palliative care social workers in oncology. The findings highlight the multifaceted roles of social workers, demonstrating their capacity to deliver holistic care to cancer patients, families, and healthcare providers to enhance quality of care. The findings may help inform the development of training curricula and practice standards for the subspecialty of oncology-focused palliative social work.

Objective: This study aims to adapt and validate a Spanish (Argentina) version of the Caregiver Indirect and Informal Care Cost Assessment Questionnaire (CIIQ) to enable the measurement of informal care-related costs in the Argentine context, addressing the current lack of Spanish-language tools for assessing indirect costs.

Method: The CIIQ was translated, cross-culturally adapted, and validated for the Spanish-Argentine language and culture. Psychometric properties were evaluated in a purposive sample of relatives of patients with advanced chronic disease and limited life expectancy in Argentina. Missing data and internal consistency (Cronbach's α) were assessed, along with discriminant capacity, content, and construct validity. Construct validity was examined through principal component analysis (PCA) and confirmatory factor analysis (CFA).

Results: The translation and cultural adaptation process was completed without major difficulties. A total of 154 caregivers completed the baseline questionnaire and 90 completed the follow-up assessment, with missing data remaining below 10% across items. Internal consistency was high for the overall instrument (α = 0.802) and for the unpaid care cost domain (α = 0.866). The productivity loss domain showed moderate reliability (α = 0.362). Low correlations with unrelated domains (ρ < 0.2) supported adequate discriminant validity. PCA identified 2 components - informal care costs (51.5% of explained variance) and productivity loss costs (20.3%) - which were further supported by CFA.

Significance of results: The Spanish-Argentine version of the CIIQ is a reliable and culturally appropriate instrument for assessing the economic burden of informal care in Argentina. While the unpaid care items demonstrated strong psychometric performance, productivity-related items may require refinement to improve reliability in future applications.

Objectives: Clinical pharmacists are increasingly recognized as essential members of multidisciplinary palliative care teams, yet their specific roles and impact have not been comprehensively summarized. This scoping review aimed to systematically map and synthesize published evidence on the clinical roles, interventions, and professional contributions of pharmacists within multidisciplinary palliative care services for patients with non-communicable diseases.

Methods: A scoping review was conducted by searching PubMed, Embase, Web of Science, and Scopus from January 2000 to May 2024. Eligible studies reported clinical pharmacist interventions in palliative care. Data were extracted on study characteristics, pharmacist activities, and clinical outcomes.

Results: Twelve studies were included, predominantly from the United States. Pharmacist-led interventions encompassed medication reconciliation (91.7%), symptom management (83.3%), adverse drug event prevention (75.0%), patient and caregiver education (58.3%), and policy-level contributions (33.3%). High physician acceptance rates (≥90%) were consistently reported. Outcomes included improved symptom control, reduced drug-related problems, and enhanced patient-reported quality of life.

Significance of results: This scoping review synthesizes current evidence on the roles of clinical pharmacists in palliative care teams. The findings highlight their essential contributions to medication safety, symptom management, deprescribing, and opioid stewardship, reinforcing the need for pharmacist integration into multidisciplinary palliative care models to improve patient-centered outcomes. Future research should focus on implementation models, cost-effectiveness analyses, and service expansion in community-based settings.