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1.
Aust Health Rev ; 47(5): 574-585, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37704436

RESUMO

Objectives To describe current and planned processes and outcome measures to address implementation of the six end-of-life actions in the National Safety and Quality Health Service (NSQHS) Standards (2nd edn) and explore associated barriers and enablers. Methods This study used an exploratory mixed methods national survey of acute healthcare facilities between September 2018 and March 2019. This study involved public and private facilities (N = 765) that provided end-of-life care, which are required to be accredited to the NSQHS Standards. Participants include those responsible for reporting implementation of end-of-life care actions at a facility providing end-of-life care. Participants were asked what processes and outcome measures were implemented or being planned to address the end-of-life care actions, and the associated barriers and enablers. Results Fifty respondents (6.5% response rate) from across Australia contributed data, reporting greater confidence in addressing Actions 5.16: Clinicians have access to Specialist Palliative Care Services; 5.17: Advance care plans can be received from patients and stored in medical records; and 5.18: Supervision and support is available for workforce providing end-of-life care. Barriers associated with the actions that were the most challenging to address included: competing clinical priorities, and insufficient resources to provide best practice end-of-life care; and the burdensome nature of conducting audits. Enablers included: (1) local, jurisdictional, and national strategic plans and policies; (2) support from Specialist Palliative Care Services; (3) access to resources and data; (4) standardised approaches to implementation and measuring outcomes; and (5) clinician, consumer and community engagement and education on end-of-life care. Conclusion Enablers and barriers in implementing the six end-of-life care actions were identified. Respondents reported that high-level support and direction, system-wide approaches, practical clinical support, and widespread community and clinician engagement would enable their facility to better address the end-of-life actions.

2.
J Ren Care ; 2023 Aug 13.
Artigo em Inglês | MEDLINE | ID: mdl-37573481

RESUMO

BACKGROUND: Living with chronic kidney disease is stressful as the disease and its treatments impact on everyday physical, psychological, and social activities. As this disease has a long trajectory, it is important to understand everyday life experiences of those at different points along this trajectory. OBJECTIVES: To explore the impact of chronic kidney disease and its treatment on everyday life. DESIGN: Descriptive qualitative design PARTICIPANTS: Twenty-five adults with chronic kidney disease across various grades were purposively recruited. APPROACH: Data were collected using semistructured interviews. Deductive content analysis informed by the revised Wilson and Cleary model was used to analyse data. FINDINGS: There were four themes. Theme 1, experiencing deterioration of kidney function, reflected the physical and psychological problems experienced by participants. Theme 2, changes that happened to me and my family, explained the subsequent limitations in their physical, social and role functioning. Theme 3, responding to a new normal, identified adjustments needed in everyday life to cope with the disease and its treatments. The final theme, thinking ahead and making a decision, captured the future plans and decisions needed while living with chronic kidney disease. CONCLUSIONS: People with chronic kidney disease experience complex challenges such as greater symptom burden and functional limitations across the disease grades which impact on their everyday life. Nurses' recognition of these challenges is crucial for identifying and addressing unmet needs. Early individualised interventions, such as routine symptom assessment and management strategies that improve the wellbeing of people are needed.

3.
Palliat Med ; 37(8): 1232-1240, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37306096

RESUMO

BACKGROUND: Understanding patterns of health care use in the last year of life is critical in health services planning. AIM: To describe hospital-based service and palliative care use in hospital in the year preceding death for patients who died of heart failure or cardiomyopathy in Queensland from 2008 to 2018 and had at least one hospitalisation in the year preceding death. DESIGN: A retrospective data linkage study was conducted using administrative health data relating to hospitalisations, emergency department visits and deaths. PARTICIPANTS AND SETTING: Participants included were those aged ⩾60 years, had a hospitalisation in their last year of life and died of heart failure or cardiomyopathy in Queensland, Australia. RESULTS: Of the 4697 participants, there were 25,583 hospital admissions. Three quarters (n = 3420, 73%) of participants were aged ⩾80 years and over half died in hospital (n = 2886, 61%). The median number of hospital admissions in the last year of life was 3 (interquartile range [IQR] 2-5). The care type was recorded as 'acute' for 89% (n = 22,729) of hospital admissions, and few (n = 853, 3%) hospital admissions had a care type recorded as 'palliative.' Of the 4697 participants, 3458 had emergency department visit(s), presenting 10,330 times collectively. CONCLUSION: In this study, patients who died of heart failure or cardiomyopathy were predominantly aged ⩾80 years and over half died in hospital. These patients experienced repeat acute hospitalisations in the year preceding death. Improving timely access to palliative care services in the outpatient or community setting is needed for patients with heart failure.


Assuntos
Cardiomiopatias , Insuficiência Cardíaca , Assistência Terminal , Humanos , Idoso , Estudos Retrospectivos , Web Semântica , Cuidados Paliativos , Hospitais , Hospitalização , Serviço Hospitalar de Emergência
4.
J Clin Nurs ; 32(13-14): 3445-3455, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-35739638

RESUMO

AIMS AND OBJECTIVES: To test whether the revised Wilson and Cleary model could identify which factors contribute to health-related quality of life in chronic kidney disease. BACKGROUND: Chronic kidney disease affects a person's health-related quality of life detrimentally although nursing practice informed by theory is only beginning to emerge. DESIGN: A cross-sectional study reported using the STROBE guidelines. METHODS: About 886 participants with chronic kidney disease (varying grades) completed validated measures of symptoms (renal version of the Integrated Palliative care Outcome Scale), and general health perceptions and health-related quality of life (European Quality of Life five-dimension three-level). Socio-demographic and renal characteristics were also collected. Data were analysed using descriptive statistics and structural equation modelling. RESULTS: Biological function (decreased kidney function and haemoglobin and greater number of comorbidities), directly contributed to increased symptom burden. Symptoms demonstrated strong negative relationships with both general health perceptions and health-related quality of life. General health perceptions had a direct positive relationship with health-related quality of life. As age increased, health-related quality of life decreased. The only environmental characteristic of significance was the distance between home and hospital although it was not directly associated with health-related quality of life. Overall, the model explained approximately half of the deterioration in health-related quality of life. CONCLUSIONS: The model demonstrated how various factors influence alteration of health-related quality of life in people with chronic kidney disease. Early identification of these factors could assist nurses to introduce effective management strategies into patient care plans proactively. RELEVANCE TO CLINICAL PRACTICE: Comprehensive symptom assessment needs to occur not only in kidney failure but in earlier chronic kidney disease grades to enable timely interventions targeted at improving people's wellbeing. PATIENT OR PUBLIC CONTRIBUTION: Validated interviewer administered questionnaires were completed by participants with chronic kidney disease in this study.


Assuntos
Qualidade de Vida , Insuficiência Renal Crônica , Humanos , Análise de Classes Latentes , Estudos Transversais , Cuidados Paliativos/métodos
5.
J Nurs Scholarsh ; 55(1): 365-377, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36264005

RESUMO

PURPOSE: To identify the clinical indicators of acute deterioration in residents and the factors that influence residential aged care facility staff's identification of these. DESIGN: Rapid review and narrative synthesis. METHODS: The WHO and Cochrane Rapid Review Methods Group recommendations guided the review processes. CINAHL, Medline, PubMed, and the Cochrane Library were searched from 2000 to January 2022. Data related to clinical indicators of deterioration were categorized using the Airway, Breathing, Circulation, Disability, Exposure assessment framework, and factors influencing detection were grouped as consumer (resident and family), aged care workforce, and organization factors. RESULTS: Twenty publications were included of which 14 informed clinical indicators; nine highlighted factors that influence staff's identification of these and three informed both. Included article were collectively below moderate quality. Most clinical indicators were grouped into the 'Disability' category with altered level of consciousness, behavior, and pain identified most frequently. Few studies reported more traditional indicators of deterioration used in the general population - changes in vital signs. The most common factors influencing the detection of acute deterioration were organizational and workforce-related including resource, knowledge, and confidence deficits. CONCLUSION: Findings suggest subtle changes in resident's health status, rather than focusing primarily on physiologic parameters used in early warning tools for acute care settings, should be recognized and considered in the design of early warning tools for residential aged care facilities. CLINICAL RELEVANCE: Early warning tools sensitive to the unique needs of residents and support for aged care facility staff are recommended to improve the capacity of aged care facility care staff to identify and manage acute deterioration early to avoid hospitalization.


Assuntos
Instituição de Longa Permanência para Idosos , Hospitalização , Idoso , Humanos , Cuidados Críticos , Recursos Humanos , Organização Mundial da Saúde , Instituições Residenciais
6.
BMC Womens Health ; 22(1): 350, 2022 08 18.
Artigo em Inglês | MEDLINE | ID: mdl-35982431

RESUMO

BACKGROUND: The study sought to understand the supportive care needs of women with advanced breast cancer from the perspectives of healthcare professionals (HCPs) and key informants of charitable/non-governmental organisations (NGOs), that provide supportive care services to women with advanced breast cancer, in Ghana. METHODS: A qualitative descriptive approach was employed via one-to-one semi-structured interviews with 13 HCPs and key informants of charitable/NGOs in Ghana that provide supportive care services to women with advanced breast cancer. The study was underpinned by Bradshaw's taxonomy of social needs and Fitch's supportive care framework. The data were analysed using a deductive content analysis approach. RESULTS: Healthcare providers and key informants perceived that women with advanced breast cancer in Ghana have numerous and complex supportive care needs in key areas that align with Fitch's supportive care framework, including informational, psychological, emotional, physical, practical, social, sexuality and spiritual needs. CONCLUSION: Participants perceived that women who have advanced breast cancer in Ghana require ongoing information about their condition, treatments and related effects, as well as spiritual support and guidance particularly due to the fatalistic beliefs they often associate with the condition. Tailored supportive care interventions and services, which address the unique sociocultural circumstances for this cohort, are required. Additional research is needed to explore how multidisciplinary teams can work collaboratively to provide comprehensive support to women in addressing their needs.


Assuntos
Neoplasias da Mama , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Feminino , Gana , Pessoal de Saúde , Humanos , Estudos Longitudinais , Pesquisa Qualitativa
7.
Eur J Oncol Nurs ; 58: 102142, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35439696

RESUMO

PURPOSE: Most women with breast cancer in Ghana are initially diagnosed with advanced disease, however, there is limited research about Ghanaian women's experiences of living with advanced breast cancer. The study aimed to understand the perceived (felt) and expressed needs of women with advanced breast cancer. METHODS: Using a cross-sectional design, this study assessed the supportive care and spiritual needs, as well as the supportive care service use, of women diagnosed with advanced breast cancer (n = 176) with the Supportive Care Needs Survey-Long Form, the Spiritual Need Assessment for Patients and the modified Client Service Receipt Inventory. RESULTS: Most participants (96.6%) had financial needs and needs in relation to having access to professional counselling. The most prevalent supportive care needs reported were related to health system issues and information needs (90.3%-96.6%). Compared to older women (51.7%), younger women (48.3%) reported greater psychological (p = 0.002) and sexuality needs (p < 0.001) and less religious needs (p = 0.048). Most participants (92.1%) had at least one spiritual need. Many of the available outpatient services were not accessed by the majority of participants (>63%). CONCLUSIONS: The study participants reported high supportive care needs even so, most did not access available relevant services. Study findings indicate that most of the participants were unaware of the health and supportive care services that were available to them or that these services were not easily accessible due to their financial status or geographical location. Targeted interventions are needed to assist the women to address their supportive care, spiritual and service needs.


Assuntos
Neoplasias da Mama , Idoso , Neoplasias da Mama/psicologia , Estudos Transversais , Feminino , Gana , Necessidades e Demandas de Serviços de Saúde , Humanos , Avaliação das Necessidades , Apoio Social , Inquéritos e Questionários
8.
Am J Hosp Palliat Care ; 39(4): 487-493, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-34189956

RESUMO

OBJECTIVE: The COVID-19 pandemic has resulted in health professionals facing unprecedented challenges and changes in practice. Responding to humanitarian crises involves saving lives and reducing suffering and as such, palliative care is an essential component of the response to COVID-19. This study aimed to explore health professionals' perspectives of the role of palliative care during the COVID-19 pandemic by analyzing their views and experiences expressed in articles and blogs located via Twitter. METHOD: Qualitative content analysis of 33 online articles and blogs written by health professionals from 1 February 2020 to 30 June 2020. Online articles and blogs were included if the URL was posted on Twitter. The consolidated criteria for reporting qualitative research (COREQ) guided data collection and reporting. RESULTS: The health professionals whose viewpoints were analyzed were from Europe, North America, Oceania and Asia. The themes derived from content analysis were (a) the recognized value of palliative care during the pandemic, (b) positioning palliative care as every health professional's responsibility and (c) specialist palliative care supporting and guiding health professionals. CONCLUSIONS: This study utilizes a unique approach to exploring the perspectives of health professionals from several countries during a global pandemic. The study emphasizes the value of palliative care and identifies gaps in end-of-life care provision including resource allocation. This brings to light the urgent need to equip all health professionals with palliative care knowledge and skills, including discussing and planning care. Specialist palliative care teams are well placed to support health professionals to provide quality care.


Assuntos
COVID-19 , Mídias Sociais , Pessoal de Saúde , Humanos , Cuidados Paliativos , Pandemias , Pesquisa Qualitativa , SARS-CoV-2
9.
J Clin Nurs ; 30(11-12): 1787-1796, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33656217

RESUMO

AIMS AND OBJECTIVES: To compare symptoms and health-related quality of life and to examine the relationship between these as kidney function deteriorates. BACKGROUND: Chronic kidney disease is a global health problem, and while knowledge of symptom burden and health-related quality of life is understood in kidney failure (previously end-stage kidney disease), there is limited understanding about symptoms and health-related quality of life across the chronic kidney disease trajectory. DESIGN: Cross-sectional design reported using the STROBE guidelines. METHODS: Eight hundred eighty-six adults with varying levels of kidney function (chronic kidney disease grades 3b-5 including those receiving dialysis) completed the renal version of the Integrated Palliative care Outcome Scale and the Quality of Life Short Form-36 version 2. Socio-demographic and renal characteristics were also collected. Data were analysed using descriptive and inferential statistics. RESULTS: Participants had a mean age of 57 years and were mostly male. Regardless of chronic kidney disease grade, pain, poor mobility, weakness, anxiety and depression were the most prevalent and severe symptoms reported. Health-related quality of life was significantly associated with physical and psychological symptom scores. As kidney function deteriorated, both physical and mental health-related quality of life decreased, and prevalence and severity of symptoms increased. CONCLUSIONS: There is substantial symptom burden irrespective of chronic kidney disease grade, which overwhelmingly affects health-related quality of life. Early identification by nurses would enable proactive management plans to be implemented. RELEVANCE TO CLINICAL PRACTICE: Nurses, whether in specialist renal services or in primary healthcare, are ideally placed to regularly assess symptoms and health-related quality of life in those with chronic kidney disease. Timely assessment could assist in the targeting of earlier interventions designed to reduce symptom burden and to increase health-related quality of life.


Assuntos
Qualidade de Vida , Diálise Renal , Adulto , Estudos Transversais , Feminino , Humanos , Recém-Nascido , Rim , Masculino , Cuidados Paliativos
10.
J Pain Symptom Manage ; 62(2): 425-437.e2, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33276045

RESUMO

CONTEXT: End-of-life communication in acute care settings can be challenging and many patients and families have reported low satisfaction with those conversations. OBJECTIVE: To explore existing guidelines around palliative care to increase current understanding of end-of-life communication processes applicable to the acute care setting. METHODS: A scoping review following the method of Arksey and O'Malley was undertaken to identify eligible documents and thematically summarize findings. Web sites of government authorities, departments, and ministries of health as well as palliative care organizations were searched as were MEDLINE, CINAHL (EBSCOhost), EMBASE, Cochrane Library, Joanna Briggs Institute, and PsycINFO databases. Searches were limited to documents published between January 2009 and August 2019 that were nondisease specific and applicable to the acute care setting. RESULTS: Thirteen guidelines from nine different countries were identified. Thematic analysis produced eight themes: 1) The purpose and process of end-of-life communications, 2) cognitive understanding and language in end-of-life communication, 3) legal aspects of end-of-life communication, 4) conflicts and barriers related to end-of-life care, 5) end-of-life communication related to medical record documentation, 6) healthcare professionals' responsibilities and collaboration, 7) education and training, and 8) policies, guidelines, and tools for end-of-life communications. CONCLUSIONS: Palliative and end-of-life guidelines applicable to acute care settings outline the purpose of end-of-life communication and address how, when, and by whom such conversations are best initiated and facilitated. How guidelines are developed and what aspects of communications are included and emphasized may differ across countries related to role differences of physicians and nurses and national laws and regulations.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Comunicação , Morte , Humanos , Cuidados Paliativos
11.
J Ren Care ; 46(2): 74-84, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31680483

RESUMO

BACKGROUND: People with chronic kidney disease (CKD) experience a wide range of symptoms due to reduced kidney function. As the disease progresses these symptoms become more burdensome and often negatively affect a person's health-related quality of life (HRQoL). OBJECTIVE: To examine the evidence of symptoms and HRQoL in CKD stages 1-5 and the relationships between these. METHODS: Studies published in English from January 2008 to July 2018 using six databases (PubMed, MEDLINE, CINAHL, PsycINFO, Cochrane Library and JBI Library) were searched. RESULTS: Thirteen studies were included in this review although only three had interventional designs. By considering symptom experience and HRQoL together, four studies found that HRQoL decreased when symptoms increased. Feeling washed out, fatigue and drowsiness were found to be the most common symptoms reported. Only two studies reported follow-up measurements although six studied how symptoms change over time. None of the studies examined the change of symptoms over time across the different CKD stages. The majority of studies showed a decline in physical HRQoL and improvement in mental HRQoL over time. Nutritional and exercise interventions showed some improvements in symptom experience and HRQoL. CONCLUSIONS: Only four studies were found that reported the relationship between symptoms and HRQoL of those with CKD. Of these, in view of symptom experience and HRQoL together, HRQoL decreased when symptoms increased. However, more research is warranted to establish a clear understanding of the relationship between symptoms and HRQoL in CKD to enable the design of appropriate interventions.


Assuntos
Qualidade de Vida/psicologia , Insuficiência Renal Crônica/complicações , Humanos , Insuficiência Renal Crônica/psicologia
12.
J Clin Nurs ; 28(13-14): 2486-2498, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-30811715

RESUMO

AIMS AND OBJECTIVE: To synthesise the evidence on the use of evaluation frameworks by nurses and midwives in research designed to improve healthcare services and practice. A secondary aim was to identify the attributes and elements of evaluation frameworks. BACKGROUND: Evaluation is an integral component of any initiative to improve outcomes or change clinical practice. Yet often an evaluation may not yield the information required to sustain or integrate an initiative into practice. Evaluation frameworks can support effective evaluations, but there is a lack of consensus regarding elements and attributes of frameworks that support use. METHODS: We undertook an integrative review to synthesise the use of evaluation frameworks in practice guided by the Preferred Reporting Items for Systematic review and Meta-Analysis flow diagram and checklist 2009 (Supporting Information File 4). The protocol was registered with PROSPERO (CRD42018087033). A broad range of electronic databases were systematically searched using keywords. FINDINGS: Twenty-five papers were included from a diverse range of clinical areas and across high-, middle- and low-income nations. Twenty of the research projects had used nine existing frameworks, and five had developed an evaluation specific to an initiative. Frameworks supported the processes of evaluation and made them more meaningful by simplifying a complex process (providing structure and guidance for the evaluation processes); identifying and including stakeholders; explaining reasons for outcomes; generating transferable lessons; and identifying the mechanisms driving or inhibiting change. CONCLUSION: Nurses and midwives reported that frameworks were useful in undertaking evaluations. Each framework had positive attributes and missing or confusing elements. When undertaking an evaluation, it is pertinent to review the elements and attributes of a framework to ensure it includes evaluation measures that are relevant to specific projects. RELEVANCE TO CLINICAL PRACTICE: Nurses are actively involved in evaluation of clinical practice. This review identifies important elements to consider when choosing a framework for evaluation.


Assuntos
Atenção à Saúde/normas , Pesquisa em Enfermagem/normas , Estudos de Avaliação como Assunto , Feminino , Humanos , Tocologia/métodos , Enfermagem/métodos , Avaliação de Resultados em Cuidados de Saúde/normas , Gravidez
14.
J Palliat Med ; 21(12): 1729-1740, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-30334690

RESUMO

BACKGROUND: Identifying people who are at risk of deteriorating and dying is essential to inform goals of care, appropriate treatment decisions, patient autonomy, and effective end-of-life care. Limited literature exists on predicting survival near the end of life for people with a hematological malignancy. OBJECTIVE: To identify the key clinical indicators that signal a person with a hematological malignancy is at high risk of deteriorating and dying. DESIGN, SETTING, PARTICIPANTS: Eleven clinical indicators identified in a Delphi approach were tested via a retrospective case-control study. Each indicator was assessed for at each in-patient admission between living (n = 236) and deceased (n = 120) people with a hematological malignancy who were admitted to a large tertiary hospital between 1st July 2014 and 31st December 2015. RESULTS: Six clinical indicators were independently associated with mortality in the final three months of life: declining performance status (Odds Ratio [OR] 7.153, 95% Confidence Intervals [CI] 3.281-15.597, p = < 0.001); treatment limitations of the hematological malignancy (OR 7.855, 95% CI 3.528-17.489, p = < 0.001); relapse, refractory or persistent disease (OR 3.749, 95% CI 1.749-8.039, p = 0.001); presence of two or more comorbidities (OR 2.991, 95% CI 1.319-6.781, p = 0.009); invasive fungal infections (OR 4.887, 95% CI 1.197-19.949, p = 0.027); and persistent infections (OR 6.072, 95% CI 2.551-14.457, p = < 0.001). CONCLUSIONS: This study has identified six clinical indicators that signal a person with a hematological malignancy is at high risk of deteriorating and dying and may benefit from an assessment of palliative needs and proactive planning, along-side appropriate treatment.


Assuntos
Progressão da Doença , Neoplasias Hematológicas/fisiopatologia , Assistência Terminal , Doente Terminal , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Casos e Controles , Técnica Delphi , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Medição de Risco/métodos , Fatores de Risco , Adulto Jovem
15.
BMC Palliat Care ; 17(1): 57, 2018 Apr 05.
Artigo em Inglês | MEDLINE | ID: mdl-29622009

RESUMO

BACKGROUND: Chronic kidney disease (CKD) is a growing global problem affecting around 10% of many countries' populations. Providing appropriate palliative care services (PCS) to those with advanced kidney disease is becoming paramount. Palliative/supportive care alongside usual CKD clinical treatment is gaining acceptance in nephrology services although the collaboration with and use of PCS is not consistent. METHODS: The goal of this study was to track and quantify the health service utilisation of people with CKD stages 3-5 over the last 12 months of life. Patients were recruited from a kidney health service (Queensland, Australia) for this prospective, longitudinal study. Data were collected for 12 months (or until death, whichever was sooner) during 2015-17 from administrative health sources. Emergency department presentations (EDP) and inpatient admissions (IPA) (collectively referred to as critical events) were reviewed by two Nephrologists to gauge if the events were avoidable. RESULTS: Participants (n = 19) with a median age of 78 years (range 42-90), were mostly male (63%), 79% had CKD stage 5, and were heavy users of health services during the study period. Fifteen patients (79%) collectively recorded 44 EDP; 61% occurred after-hours, 91% were triaged as imminently and potentially life-threatening and 73% were admitted. Seventy-four IPA were collectively recorded across 16 patients (84%); 14% occurred on weekends or public holidays. Median length of stay was 3 days (range 1-29). The median number of EDP and IPA per patient was 1 and 2 (range 0-12 and 0-20) respectively. The most common trigger to both EDP (30%) and IPA (15%) was respiratory distress. By study end 37% of patients died, 63% were known to PCS and 11% rejected a referral to a PCS. All critical events were deemed unavoidable. CONCLUSIONS: Few patients avoided using acute health care services in a 12 month period, highlighting the high service needs of this cohort throughout the long, slow decline of CKD. Proactive end-of-life care earlier in the disease trajectory through integrating renal and palliative care teams may avoid acute presentations to hospital through better symptom management and planned care pathways.


Assuntos
Atenção à Saúde/estatística & dados numéricos , Insuficiência Renal Crônica/terapia , Adulto , Idoso , Idoso de 80 Anos ou mais , Serviço Hospitalar de Emergência/organização & administração , Serviço Hospitalar de Emergência/estatística & dados numéricos , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Queensland , Encaminhamento e Consulta/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos
16.
J Ren Care ; 44(2): 115-122, 2018 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-29493102

RESUMO

BACKGROUND: There is increasing recognition of the clinical need for timely and coordinated supportive and palliative care for those with terminal organ failure. OBJECTIVE: To describe symptoms, quality of life and supportive care needs in the anticipated 12-month period prior to death in adults with chronic kidney disease (CKD) stages 4 or 5. METHOD: An observational, prospective, longitudinal design was used to follow 19 patients. The measures used were the Chronic Kidney Disease-Symptom Burden Index (CKD-SBI), the Australian Karnofsky Performance Scale (AKPS), the Functional Assessment of Chronic illness Therapy Palliative-14 (FACIT PAL-14), the Assessment of Quality of Life 6 Dimensions (AQoL-6D) and the Sheffield Profile for Assessment and Referral for Care (SPARC). Data were collected at study entry and three monthly until death or study end. RESULTS: Patients' median age was 78 years (range 42-90), most were male (63%), 10 were receiving dialysis and seven died during the study. The most prevalent symptoms reported differed from those that were most troublesome. The median AKPS score did not change over time (60). Quality of life remained steady over time [FACIT-PAL median range: 43.5-46; AQoL-6D means range: 0.66 (SD 0.19) to 0.75 (SD 0.2)]. Supportive care needs were few. CONCLUSION: We found a substantial symptom burden and slow functional decline in this group of patients. Regular assessment of both symptoms and QOL is warranted particularly if clinical experience indicates that the person is likely to be in their last year of life. Integrated supportive care programmes could assist with easing symptom burden during this time.


Assuntos
Cuidados Paliativos/psicologia , Qualidade de Vida/psicologia , Insuficiência Renal Crônica/complicações , Adulto , Idoso , Idoso de 80 Anos ou mais , Austrália , Efeitos Psicossociais da Doença , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Insuficiência Renal Crônica/psicologia
18.
BMC Cancer ; 17(1): 213, 2017 03 23.
Artigo em Inglês | MEDLINE | ID: mdl-28335744

RESUMO

BACKGROUND: Accurate prognosticating is needed when patients are nearing the end of life to ensure appropriate treatment decisions, and facilitate palliative care provision and transitioning to terminal care. People with a hematological malignancy characteristically experience a fluctuating illness trajectory leading to difficulties with prognosticating. The aim of this review was to identify current knowledge regarding 'bedside' prognostic factors in the final 3 months of life for people with a hematological malignancy associated with increased risk of mortality. METHODS: A systematic review of the literature was performed across: PubMed; CINAHL; PsycINFO; and Cochrane with set inclusion criteria: 1) prognostic cohort studies; 2) published 2004-2014; 3) sample ≥ 18 years; 4) >50% sample had a hematological malignancy; 5) reported 'bedside' prognostic factors; 6) median survival of <3 months; and 7) English language. Quality appraisal was performed using the Quality In Prognostic Studies (QUIPS) tool. Results are reported in line with PRISMA guidelines. RESULTS: The search returned 4860 studies of which 28 met inclusion criteria. Twenty-four studies were rated moderate quality, three were high quality and one study was deemed to be of low quality. Most studies were set in the ICU (n = 24/28) and were retrospective (n = 25/28). Forty 'bedside' prognostic factors were identified as associated with increased risk of mortality encompassing the following broad categories: 1) demographics; 2) physiological complications or conditions; 3) disease characteristics; 4) laboratory blood values; and 5) interventions. CONCLUSIONS: The literature on prognosticating in the final months of life was predominantly focused on people who had experienced acute physiological deterioration and were being treated aggressively in the in-patient setting. A significant gap in the literature exists for people who are treated less aggressively or are on a palliative trajectory. Findings did not report on, or confirm the significance of, many of the key prognostic factors associated with increased risk of mortality at the end of life in the solid tumour population, demonstrating key differences in the two populations. TRIAL REGISTRATION: This systematic review was not registered.


Assuntos
Neoplasias Hematológicas , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Neoplasias Hematológicas/diagnóstico , Neoplasias Hematológicas/epidemiologia , Neoplasias Hematológicas/metabolismo , Neoplasias Hematológicas/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Prognóstico , Adulto Jovem
19.
Oncol Nurs Forum ; 43(5): E178-87, 2016 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-27541560

RESUMO

PROBLEM IDENTIFICATION: Identifying people with hematologic cancer who are at risk of deteriorating and dying is essential to enable open, honest discussions, leading to appropriate decision making and effective end-of-life care.
. LITERATURE SEARCH: PubMed, CINAHL®, PsycINFO, and the Cochrane Central Register of Controlled Trials were searched from January 2005 to December 2015 for descriptive observational studies.
. DATA EVALUATION: Critique of the studies was guided by the Critical Appraisal Skills Programme Cohort Study Checklist.
. SYNTHESIS: Twelve studies were included. The majority of studies (n = 8) sampled patients from palliative populations, and most were retrospective (n = 11). A number of signs, symptoms, and characteristics associated with end of life in people with a hematolgic malignancy were identified, including pain, hematopoietic dysfunction, dyspnea, and reduced oral intake.
. CONCLUSIONS: The studies described a clinical scenario of deterioration, largely in a palliative population. Findings indicate that people with a hematologic malignancy share certain clinical signs of deterioration with other populations and receive a high level of medical interventions at the end of life.
. IMPLICATIONS FOR PRACTICE: Nurses are well positioned to identify many of the signs, symptoms, and characteristics found in this review and can play a key role in identifying when a person is nearing the end of life.


Assuntos
Neoplasias Hematológicas/enfermagem , Neoplasias Hematológicas/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Enfermagem Oncológica/métodos , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos
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