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A Descriptive Analysis of an Ambulatory Kidney Palliative Care Program.

ABSTRACT: Background: Many patients with serious kidney disease have an elevated symptom burden, high mortality, and poor quality of life. Palliative care has the potential to address these problems, yet nephrology patients frequently lack access to this specialty. Objectives: We describe patient demographics and clinical activities of the first 13 months of an ambulatory kidney palliative care (KPC) program that is integrated within a nephrology practice. Design/Measurements: Utilizing chart abstractions, we characterize the clinic population served, clinical service utilization, visit activities, and symptom burden as assessed using the Integrated Palliative Care Outcome Scale-Renal (IPOS-R), and patient satisfaction. Results: Among the 55 patients served, mean patient age was 72.0 years (standard deviation [SD]?=?16.7), 95% had chronic kidney disease stage IV or V, and 46% had a Charlson Comorbidity Index >8. The mean IPOS-R score at initial visit was 16 (range?=?0-60; SD?=?9.1), with a mean of 7.5 (SD?=?3.7) individual physical symptoms (range?=?0-15) per patient. Eighty-seven percent of initial visits included an advance care planning conversation, 55.4% included a medication change for symptoms, and 35.5% included a dialysis decision-making conversation. Overall, 96% of patients who returned satisfaction surveys were satisfied with the care they received and viewed the KPC program positively. Conclusions: A model of care that integrates palliative care with nephrology care in the ambulatory setting serves high-risk patients with serious kidney disease. This KPC program can potentially meet documented gaps in care while achieving patient satisfaction. Early findings from this program evaluation indicate opportunities for enhanced patient-centered palliative nephrology care.

SUBMITTER: Scherer JS

PROVIDER: S-EPMC6987731 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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A Descriptive Analysis of an Ambulatory Kidney Palliative Care Program.

Scherer Jennifer S JS Harwood Katherine K Frydman Julia L JL Moriyama Derek D Brody Abraham A AA Modersitzki Frank F Blaum Caroline S CS Chodosh Joshua J

Journal of palliative medicine 20190711 2

Background: Many patients with serious kidney disease have an elevated symptom burden, high mortality, and poor quality of life. Palliative care has the potential to address these problems, yet nephrology patients frequently lack access to this specialty. Objectives: We describe patient demographics and clinical activities of the first 13 months of an ambulatory kidney palliative care (KPC) program that is integrated within a nephrology practice. Design/Measurem ...[more]

PMID: 31295050

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Project description:BackgroundThe first and most recent nationwide audit of palliative care services in Uganda was conducted in 2009. Since then, Uganda has made great strides in palliative care development, including policy, education, and services implementation. This study provides an overview of the availability of palliative care services in the country and the challenges and gaps in Uganda prior to the global COVID-19 pandemic. This lays the foundation for better understanding the challenges and changes needed to support palliative care development and access in the wake of the pandemic.MethodsWe conducted a descriptive quantitative study of secondary data on nationwide morphine distribution, collated a list of accredited facilities, and analyzed key palliative care indicators collected through the mHealth surveillance project present at a subset of accredited facilities. Descriptive statistical analysis involved non-parametric tests using SPSS, mapping geographical distribution of available palliative care services using Geographic Information Systems software, and identification of challenges from the subset of accredited facilities.ResultsThere were 226 accredited palliative care facilities across Uganda's 135 districts in 2020. Thirty districts lacked any accredited palliative care facility. The estimated population coverage was 88.5%. The majority (68.1%) of accredited facilities were public, and private facilities received slightly more pain-relieving morphine. There was an alternating trend in the volumes of morphine delivered to public and private facilities. More than a third of the patients were diagnosed with non-communicable diseases, highlighting their significance alongside cancer and HIV/AIDS as conditions requiring palliative care. Palliative care accredited facilities offered six types of services: outreach, home visits, psychosocial, legal, bereavement, and spiritual support, but only for an average of 7 months a year due to lack of facilitation and transportation.ConclusionPalliative care in Uganda developed in quality, volume, and geographic coverage since 2009. The shift in palliative care patients' primary diagnosis from HIV/AIDS to non-communicable diseases marks an important epidemiologic transition. Although accredited facilities are present in most administrative districts, more research is needed to evaluate the actual accessibility of these services. The existing services, both private and public, are limited by the amount of pain-relieving morphine, financial and transport resources. More quality data collected on key palliative care indicators is needed into geographical accessibility of palliative care services, morphine availability trends, and patient diagnoses in order to improve the provision of palliative care in Uganda.

Project description:BackgroundPediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care.MethodsA cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis. Investigators in programs that had taken part in a prior study were invited to participate. New programs that met the inclusion criteria were identified through snowball sampling within pediatric palliative care networks. Program data were obtained via surveys with coinvestigators, and health record reviews were used to obtain information about the children who received care through the programs.ResultsAll 13 programs identified, including 3 with a free-standing hospice, agreed to take part in the study. Of the 1401 children who received care, 508 (36.2%) were under 1 year of age, and 504 (36.0%) had a congenital illness or condition originating in the perinatal period. Of the 431 children who died in 2012, 105 (24.4%) died in a critical care setting. Programs with a hospice provided care to 517 children (36.9%). Children in this group tended to be older, more often had a neurologic illness and received care for a longer time than those who received care from programs without a hospice. Overall, 18.6% (95% confidence interval 17.1%-20.3%) of deceased children who might have benefitted from specialized pediatric palliative care based on diagnosis received such care, with 110 (25.2%) receiving care for less than 8 days.InterpretationProgram growth and changes in patients' demographic and clinical characteristics indicate improved reach of programs. However, barriers remain that prevent most children with life-threatening conditions from receiving specialized pediatric palliative care services.

Project description:ObjectivesPatients with advanced cancer are often admitted to hospital as emergency cases. This may not always be medically indicated. Study objectives were to register the reasons for the emergency admissions, to examine interventions performed during hospitalisation and self-reported symptom intensity at admission and discharge, and to assess patients' opinions about the admission.DesignThis was a descriptive before-and-after study. Participating patients completed the Edmonton Symptom Assessment System (ESAS) twice, upon hospital admission and prior to discharge. All patients underwent a structured interview assessing their opinion about the emergency admission. Medical data were obtained from the hospital records.SettingThe study was performed in two Norwegian acute care secondary hospitals with urban catchment areas.Participants44 patients with cancer (men 27 and women 17; mean age 69.2, SD 9.2) representing 50 emergency admissions were included.ResultsMedian length of stay was 7 days (95% CI 7.4 to 11.4). Median survival was 50 days (95% CI 51 to 115). 90% were admitted from home, and 46% had been hospitalised less than 1 month earlier. Lung and gastrointestinal symptoms and pain were the most frequent reasons for admissions. Mean pain scores on ESAS were reduced by 50% from admission to discharge (p<0.01). Simple interventions such as hydration, bladder catheterisation and oxygen therapy were most frequent. Nearly one-third would have preferred treatment at another site, provided that the quality of care was similar. Home visits by the family doctor and specialised care teams were perceived by patients as important to prevent hospitalisation.ConclusionsIn most emergency admissions, relatively simple medical interventions are necessary. Specialised care teams with palliative care physicians, easier access to the family doctor and better lines of cooperation between hospitals and the primary care sector may make it possible to perform more of these procedures at home, thereby reducing the need for emergency admissions.

Dataset Information

A Descriptive Analysis of an Ambulatory Kidney Palliative Care Program.

Publications

A Descriptive Analysis of an Ambulatory Kidney Palliative Care Program.

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