Background: One challenge in caring for cancer patients with incurable disease is the adequate identification of those in need for specialized palliative care (SPC). The study's aim was to validate an easy to use phenomenological screening tool.
Methods: The German tool is based on the National Comprehensive Cancer Network (NCCN) Palliative Care guidelines and contains ten items in five domains that focus e.g. on diagnosis, functional status, complications, comorbidities, and palliative care relevant problems such as symptom management, distress, and support of family and team members. Sum score ranges from 0 to 14 (no need to great need). Assessment to identify SPC needs was done in university hospital wards between 1 and 08/2017 by health care professionals on admission of the patient if the disease was incurable and expected prognosis < 12 months. The Integrated Palliative Outcome Scale (IPOS, staff version), an outcome assessment instrument for palliative care that consists of ten items, served as external criterion; in sub samples inter-rater/test-retest were performed.
Results: Data from 208 patients with incurable disease and life expectancy < 12 months (54.8% female; average age 63.5 years, range 21-96) were assessed using the tool. The tool has good convergent validity; the correlation between the sum scores of IPOS and our tool showed a significant and substantial effect. The sum score was independent of the patient's age, gender and primary diagnosis. Patients who already were in contact with SPC had significantly higher screening scores than patients without. With a cut point of ≥ 5, 80.8% of the screened patients were in need for SPC. Cronbach's alpha was α = .600. Rater agreement (inter-rater, test-retest) varied between single items. Correlation coefficients showed significant substantial effects.
Conclusions: This is the first validation of a screening procedure in German language identifying SPC needs of adult patients with advanced cancer and the first using filter questions as a pre-screening. Proxy assessment of SPC needs by physicians in cancer care settings is feasible and the suggested tool presents a valid instrument to trigger a PC consultation.
Trial Registration: The study was not registered.
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http://dx.doi.org/10.1186/s12885-019-5809-8 | DOI Listing |
PLoS One
January 2025
Little Steps Association for Children with Duchenne Muscular Dystrophy and Becker Muscular Dystrophy, Kefar Saba, Israel.
For individuals with Duchenne or Becker muscular dystrophy (DMD and BMD, respectively), transitioning to adulthood presents significant challenges. Although considerable attention has been given to facilitating medical transitions due to the complexity of these conditions, less focus has been placed on other aspects of the transition, such as achieving independence. This study assessed the transition needs of people with DMD or BMD, exploring various domains including health, education, employment, living arrangements, transportation, daily activities, and independent personal life.
View Article and Find Full Text PDFJAMA Netw Open
January 2025
Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts.
Importance: Adolescent and young adult (AYA) patients with advanced cancer often die in hospital settings. Data characterizing the degree to which this pattern of care is concordant with patient goals are sparse.
Objective: To evaluate the extent of concordance between the preferred and actual location of death among AYA patients with cancer.
J Nephrol
January 2025
Department of Medicine, Division of Nephrology, Loma Linda University Medical Center, Loma Linda, CA, USA.
The increasing prevalence of kidney failure highlights the crucial need for effective patient-physician communication to improve health-related quality of life and ensure adherence to treatment plans. This narrative review evaluates communication practices in the context of advanced kidney disease, focusing on the frameworks of shared decision-making, advanced care planning, and communication skills training among nephrologists. The findings highlight the significant gaps in patient-physician communication, particularly in the domains of advanced care planning, shared decision-making, and dialysis withdrawal.
View Article and Find Full Text PDFChirurgie (Heidelb)
January 2025
Klinik für Allgemein-, Viszeral- und Transplantationschirurgie, LMU Klinikum München, Marchioninistraße 15, 81377, München, Deutschland.
Palliative surgery aims to improve the quality of life for patients with incurable diseases. This patient group is vulnerable due to the underlying illness, prior treatment and comorbidities, which increase the risk of complications that can negatively impact the course of the disease and quality of life. Palliative surgical interventions often provide effective long-term symptom control but are more invasive than conservative, interventional endoscopic or interventional radiological alternatives.
View Article and Find Full Text PDFPalliat Support Care
January 2025
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany.
Objectives: Wishes to hasten death (WTHDs) are common in patients with serious illness. The Schedule of Attitudes Toward Hastened Death (SAHD) is a validated 20-item instrument for measuring WTHD. Two short versions have also been developed based on statistical item selection.
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