Survey of Health Care Workers Suggests Unmet Palliative Care Needs in Parkinson's Disease.
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SUBMITTER: Fox S
PROVIDER: S-EPMC6183248 | biostudies-literature | 2015 Jun
REPOSITORIES: biostudies-literature
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Survey of Health Care Workers Suggests Unmet Palliative Care Needs in Parkinson's Disease.
Fox Siobhan S Gannon Elizabeth E Cashell Alison A Kernohan W George WG Lynch Marie M McGlade Ciara C O'Brien Tony T O'Sullivan Sean S SS Sweeney Catherine C Timmons Suzanne S
Movement disorders clinical practice 20150427 2
The aim of this study was to investigate the knowledge, attitudes, and previous training of Irish health care workers (HCWs) in palliative care in end-stage Parkinson's disease (PD). A survey was distributed to HCWs, including neurologists, geriatricians, general practitioners, nurses, and allied health professionals, in acute and community settings in the Republic of Ireland. Three-hundred and six surveys were returned (32% average response rate). Most HCWs (90%) believed that people with PD ha ...[more]
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Project description:Objectives:Palliative care addresses the suffering of patients and families affected by progressive illness through the management of medical symptoms, psychosocial issues, and spiritual concerns. Although there is an emerging interest in applying palliative care to Parkinson's disease (PD), potential palliative care needs have not been systematically investigated in PD patients. Our primary objective was to determine the prevalence of clinically significant symptomatic, psychosocial, and spiritual issues in PD and understand their impact on health-related quality of life (HRQOL). Secondary objectives included comparing the level of palliative care needs of PD patients to advanced cancer patients and assessing preferences for advance care planning. Methods:Ninety PD patients and 47 patients with advanced cancer were surveyed regarding potential palliative care needs, including symptom burden, mood, anticipatory grief, and spiritual well-being. PD patients completed additional scales regarding HRQOL, motor symptoms, cognitive impairment, and preferences regarding advance care planning. Results:Potential palliative care needs, including high symptom burden and grief, were common in PD patients and contributed to HRQOL even when controlling for depression and motor severity. In all domains investigated, PD patients had similar or higher levels of palliative care needs as patients with advanced cancer. PD patients expressed a desire to complete advance directives early in the disease course and with a physician. Conclusions:Palliative care needs contribute to HRQOL in PD and are of similar severity as cancer patients. This study supports and helps focus efforts to integrate palliative care principles in PD care across the spectrum of the disease.
| S-EPMC6384178 | biostudies-literature
Project description:Among Veterans, it is estimated that 110,000 are living with Parkinson's disease (PD) in the United States. Whether or not Veterans living with PD are enrolled in the Veterans Health Administration (VHA), they may require special considerations when it comes to their care. We administered a survey to Parkinson's Foundation constituents with PD who had previously reported their Veteran status. Our goal was to identify areas where intervention can lead to improved health outcomes for Veterans living with Parkinson's disease. We specifically wanted to examine 1) the proportion of our Veteran constituents receiving services through the VHA, 2) the comprehensive care services that were utilized by Veterans living with PD, and 3) self-reported mental health and mobility status. We also wanted to compare those receiving care within and outside the VHA to see where there may be areas for improvement. With a response rate of 29.8% we received surveys from 409 United States Veterans with PD. As expected, mental health (MH) concerns in the previous 12 months were common with 36.0% of Veterans reporting concerns. Only 22.1% of respondents received care through VHA. Respondents with more falls and mental health concerns as well as those with higher levels of education and younger age were more likely to be seen at a VHA facility. In this sample, education level, household income, marital status, and VHA status were positively associated with increased health care utilization among Veterans. Those seen within the VHA were more likely to utilize MH and speech and language pathology consultation. This study highlights the importance of targeting educational outreach about care best practices for Veterans living with PD beyond VHA's current reach as well as the importance of access to good MH resources.
| S-EPMC9405651 | biostudies-literature
Project description:BackgroundIt is not known whether unmet palliative care needs are associated with an interest in palliative care services among patients with advanced cancer receiving ongoing oncology care.ObjectiveTo assess the association between unmet palliative care needs and patient interest in subspecialty palliative care services.DesignCross-sectional telephone survey.Subjects and settingOne hundred sixty-nine patients with advanced cancer receiving care from 20 oncologists at two academic cancer centers.MeasurementsSurveys assessed palliative care needs in six domains. Patients were read a description of palliative care and then asked three questions about their current interest in subspecialty palliative care services (perceived need, likelihood of requesting, willingness to see if their oncologist recommended; all outcomes on 0-10 Likert scale).ResultsThe vast majority of patients described unmet palliative care needs, most commonly related to psychological/emotional distress (62%) and symptoms (62%). In fully adjusted models accounting for clustering by oncologist, unmet needs in these domains were associated with a higher perceived need for subspecialty palliative care services (psychological/emotional needs odds ratio [OR] 1.30; 95% confidence interval [CI] 1.06-1.58; p=0.01; symptom needs OR 1.27; 95% CI 1.01-1.60; p=0.04). There was no significant association between unmet needs and likelihood of requesting palliative care services. Willingness to see palliative care if oncologist recommended was high (mean 8.6/10, standard deviation [SD] 2).ConclusionPatients with advanced cancer and unmet symptom and psychological/emotional needs perceive a high need for subspecialty palliative care services but may not request them. Efforts to increase appropriate use of subspecialty palliative care for cancer may require oncologist-initiated referrals.
| S-EPMC4039000 | biostudies-literature
Project description:ObjectiveTo determine the knowledge and practice patterns of a UK cohort of relevant healthcare professionals (HCPs) about delivering palliative care in cirrhosis, and to inform priorities for future research.DesignAn on-line questionnaire survey with closed and open responses.SettingHCPs identified from the mailing list of special interest groups in hepatology and gastroenterology (liver), general practice and specialist palliative care (SPC) across the UK.ResultsOf the 6181 potential contacts identified, 517 HCPs responded. Most believed a role exists for SPC in caring for people with cirrhosis, but many SPC HCPs felt ill prepared to provide good care to those facing death. Further training was needed in managing liver-related symptoms, symptom control and end of life issues. All HCP groups wished to increase community provision of palliative care support, but many general practitioners felt unable to manage advanced cirrhosis in the community. There were differences in the optimal trigger for SPC referral with liver HCPs less likely to refer at symptom deterioration. Prognostication, symptom management and service configuration were key areas identified for future research.ConclusionsAll who responded acknowledged the role of SPC in caring for those dying with cirrhosis and need for further training to improve confidence and enable joint working between SPC, general practice and liver teams. Low response rates make it difficult to generalise these findings, which require further validation.
| S-EPMC5369469 | biostudies-literature
Project description:IntroductionThe World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be provided even when curative attempts are being utilised. In Papua New Guinea, as in other low- and middle-income countries there is a lack of services and training on PPC. This study aims to describe the characteristics of children with palliative care needs and to assess the perspectives of their parents and health care workers.MethodsA descriptive qualitative study was carried out over 5 months in 2022 at the Port Moresby General Hospital children's wards. Clinical information was gathered from the admission charts of children with life threatening and life limiting conditions and a recorded interview was carried out with the children's parents. A focus group interview with 10 experienced nurses caring for these children was video recorded. The recorded interviews were subjected to thematic analysis.ResultsTwenty children and their parents were included in this study. Nine had a cancer diagnosis and 11 had a chronic progressive condition. The common clinical characteristics of children with palliative care needs were pain (n = 9) and shortness of breath (n = 9), and most children had more than one symptom. Several themes were identified in the parent interviews. Most parents could not name their child's diagnosis, but they were able to correctly describe their child's condition using their own terms. Most parents felt involved in their child's management and were satisfied with the care provided. Parents were psychologically affected by their child's situation but were hopeful that God and the medicines would heal their child. Ten nurses were involved in a focus-group interview. Most nurses' understanding of palliative care was from experience not from formal training, but most felt confident in identifying the physical, emotional, and spiritual needs of the children. Understanding of analgesia was limited, as was the availability of appropriate medications included in the WHO Analgesic Ladder.ConclusionThere is a need for a systematic approach to palliative care in Papua New Guinea. Palliative care can be integrated into an overall approach to quality of paediatric care. It is relevant to a broad section of children with severe chronic or malignant conditions and can be carried out with limited resources. It does require some resources, further training and education, and increased provision of basic drugs for symptom control.
| S-EPMC10249208 | biostudies-literature
Project description:Background/objectivesMedicare-certified home health agencies are required to offer family caregiver training, but little is known regarding the potential impact of this training on outcomes during home health care. We estimate the proportion of family caregivers assisting Medicare home health patients who have unmet training needs and examine whether these unmet training needs are associated with older adults' risk of acute care utilization during home health care.DesignObservational, nationally representative cohort study.SettingLinked National Health and Aging Trends Study, Outcome and Assessment Information Set (OASIS), Medicare Provider of Services file, and Medicare claims data from 2011 to 2016.ParticipantsThousand two hundred seventeen (weighted n = 5,870,905) community-living Medicare beneficiaries who received home health care between 2011 and 2016.MeasurementsFamily caregivers' unmet training needs measured from OASIS and Medicare claims; home health patients' acute care utilization (including emergency department use and hospitalization) measured from OASIS.ResultsRates of unmet need for training varied by activity, from 8.2% of family caregivers assisting with household chores to 16.0% assisting with self-care tasks. After controlling for older adult and home health provider characteristics, older adults whose family caregivers had an unmet need for training with any caregiving activity were twice as likely to incur acute care utilization during their home health episode (adjusted odds ratio [aOR]: 2.01, 95% confidence interval [CI]: 1.20-3.38). This relationship held across specific caregiving activities including household chores (aOR: 1.98; 95% CI: 1.13-3.46), medication management (aOR: 2.50; 95% CI: 1.46-4.26), patient supervision (aOR: 2.92; 95% CI: 1.36-6.24), and self-care tasks (aOR: 3.11; 95% CI: 1.62-6.00).Conclusions and relevanceUnmet training needs among family caregivers are associated with greater likelihood of acute care utilization among Medicare beneficiaries receiving home health care. Identifying and addressing family caregivers' training needs may reduce older adults' risk of acute care utilization during home health care.
| S-EPMC8273145 | biostudies-literature
Project description:BackgroundThere are increasing calls to establish heart failure (HF) clinics due to their effectiveness in the interdisciplinary management of people living with HF. However, although a recommendation exists for palliative care (PC) providers to be part of the interdisciplinary team, few of the established HF clinics include them in their teams. Therefore, in this qualitative study, we aimed to understand the unmet PC needs of patients with HF attending an already established HF clinic.MethodsSecondary qualitative analysis of structured interviews undertaken within a larger study to validate the German version of the Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF). The NAT: PD-HF is a tool that aims to assess unmet needs in patients with HF. The interviews took place between January and March 2020 with patients from the ambulatory HF Clinic of a University Hospital in Switzerland. For this analysis, we transcribed and thematically analyzed the longest and most content-rich interviews until we reached data saturation at 31 participants. The interviews lasted 31 min on average (24-48 min).ResultsParticipants (n = 31) had a median age of 64 years (IQR 56-77), the majority had reduced ejection fraction, were men, and were classified as having a New York Heart Association functional class II. Participants were in general satisfied with the treatment and information received at the HF clinic. However, they reported several unmet needs. We therefore identified three ambivalences as main themes: (I) "feeling well-informed but missing essential discussions", (II) "although feeling mostly satisfied with the care, remaining with unmet care needs", and (III) "fearing a referral to palliative care but acknowledging its importance".ConclusionAlthough patients who are receiving multidisciplinary management in ambulatory HF clinics are generally satisfied with the care received, they remain with unmet needs. These unmet needs, such as the need for advance care planning or the need for timely and tactful end-of-life discussions, can be fulfilled by PC providers. Including personnel trained in PC as part of the multidisciplinary team could help to address patients' needs, thus improving the quality of care and the quality of life of people living with HF.
| S-EPMC9195498 | biostudies-literature
Project description:BackgroundPalliative Care offers patient-centered, symptom-focused relief for patients with incurable disease, and early integration of palliative care ensures quality of life and death while reducing medical impoverishment. The Emergency Department is an ideal yet understudied, under-utilized location to initiate palliative care.ObjectiveTo evaluate the palliative care needs of patients with incurable disease and perceived barriers amongst healthcare providers in the Emergency Department of Kiruddu National Referral Hospital, Kampala, Uganda.MethodsA mixed methods survey of Emergency Department healthcare workers and patients was conducted. A crosse sectional survey of ninety-nine patients was conducted using the integrated Palliative Care Outcome Scale (IPOS). Eleven interviews were conducted with healthcare workers at Kiruddu Hospital, identified by purposive sampling. Descriptive and inferential statistics were used to analyze quantitative data.. Grounded theory approach was used to construct the in depth interview questions, code and analyze qualitative results and collapse these results into final themes.ResultsThe most common diagnoses were HIV/HIV-TB (32 %), heart disease (18 %), and sickle cell disease (14 %). The prevalence of unmet palliative care needs was substantial: more that 70 % of patients reported untreated symptoms e.g., pain, fatigue, difficulty breathing. Seventy-seven percent of the population reported severe or overwhelming pain. The main barriers to provision of palliative care in the Emergency Department as identified by healthcare workers were: (1) lack of adequate training in palliative care; (2) Challenges due to patient volume and understaffing; (3) the misconception that palliative care is associated with pain management alone; (4) Financial constraints as the greatest challenge faced by patients with incurable disease.ConclusionsWe report a high prevalence of unmet palliative care needs among patients in this urban Ugandan Emergency Department, and important barriers reported by emergency healthcare providers. Identification of these barriers offers opportunities to overcome them including harnessing novel mHealth interventions such as clinical support apps or telehealth palliative care consultants. Integration of palliative care in this setting would improve the care of vulnerable patients, provide healthcare workers with an additional care modality while likely adding value to the health system.
| S-EPMC10757186 | biostudies-literature
Project description:BACKGROUND:Longevity and population growth generate an increase in the number of people with dependency, who require homecare assistance to meet their health needs. Homecare support workers provide this care in Spain, and they may have unique insights into the unmet health needs of those receiving homecare assistance. The aim of this study was to determine the unmet health needs of people with dependency based on the perspective of homecare support workers. METHODS:Qualitative exploratory-descriptive study. Through convenience sampling, homecare support workers from a Spanish province were selected, following inclusion and exclusion criteria. Four focus groups, transcription and thematic analyses were performed using Atlas.ti. Coding triangulation was carried out, applying criteria for scientific rigour. RESULTS:The six themes obtained were classified into the material, psychoemotional, socioeconomical and psychosocial needs of people with dependency from the point of view of homecare support workers, along with the contributions of improvements and the need of these professionals for continuous training. CONCLUSIONS:People with dependency need complex technical assistance, materials, psychological attention due to their situation, and more effective assessments of their health and disability status. Homecare support workers perceive themselves to be essential in these assessments. They ask for psychological assistance, due to the emotional burden of their work, and believe this help would contribute to improving the quality of their service. Homecare support workers perceive that they are capable of performing their job, although they believe that some delegated activities are beyond their levels of competency.
| S-EPMC7246884 | biostudies-literature
Project description:IntroductionThe technologies used to treat the millions who receive care in intensive care unit (ICUs) each year have steadily advanced. However, the quality of ICU-based communication has remained suboptimal, particularly concerning for Black patients and their family members. Therefore we developed a mobile app intervention for ICU clinicians and family members called ICUconnect that assists with delivering need-based care.ObjectiveTo describe the methods and early experiences of a clustered randomized clinical trial (RCT) being conducted to compare ICUconnect vs. usual care.Methods and analysisThe goal of this two-arm, parallel group clustered RCT is to determine the clinical impact of the ICUconnect intervention in improving outcomes overall and for each racial subgroup on reducing racial disparities in core palliative care outcomes over a 3-month follow up period. ICU attending physicians are randomized to either ICUconnect or usual care, with outcomes obtained from family members of ICU patients. The primary outcome is change in unmet palliative care needs measured by the NEST instrument between baseline and 3 days post-randomization. Secondary outcomes include goal concordance of care and interpersonal processes of care at 3 days post-randomization; length of stay; as well as symptoms of depression, anxiety, and post-traumatic stress disorder at 3 months post-randomization. We will use hierarchical linear models to compare outcomes between the ICUconnect and usual care arms within all participants and assess for differential intervention effects in Blacks and Whites by adding a patient-race interaction term. We hypothesize that both compared to usual care as well as among Blacks compared to Whites, ICUconnect will reduce unmet palliative care needs, psychological distress and healthcare resource utilization while improving goal concordance and interpersonal processes of care. In this manuscript, we also describe steps taken to adapt the ICUconnect intervention to the COVID-19 pandemic healthcare setting.Enrollment statusA total of 36 (90%) of 40 ICU physicians have been randomized and 83 (52%) of 160 patient-family dyads have been enrolled to date. Enrollment will continue until the end of 2021.
| S-EPMC8330133 | biostudies-literature