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1.
PLoS One ; 18(11): e0294748, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38015918

RESUMO

INTRODUCTION: The handheld fan ('fan') is useful for chronic breathlessness management, however little is known about clinicians' implementation of the fan in clinical practice. AIM: To explore clinicians' experiences and views of fan implementation. METHODS: A qualitative approach, using semi-structured interviews. Participants were purposively sampled from clinicians who had completed an on-line fan implementation survey and were willing to participate. A topic guide was developed using the Theoretical Domains Framework (TDF). Data were analysed using an inductive approach informed by the TDF. FINDINGS: Twelve clinicians participated (doctors n = 4; nurses n = 4; allied health professionals n = 4) from respiratory and palliative care. Analysis generated three major themes: i) Clinician knowledge and skills in fan implementation, ii) environmental constraints on fan use and iii) clinician beliefs about the consequences of fan use. Implementation by clinicians was positively influenced by having a scientific rationale for fan use presented (mechanism of action). Clinicians believed that the fan relieved breathlessness and did not carry a significant infection risk. Opportunity for fan use varied across healthcare settings; key environmental influences were COVID-19 restrictions, lack of access to resources and funding to provide fans, particularly in acute and respiratory services. Clinicians commonly encountered scepticism among patients and colleagues who felt the fan was an implausible intervention for breathlessness. CONCLUSION: Implementation of the fan is motivated by clinician beliefs about patient-benefit, a scientific rationale to counter clinician and patient scepticism, and access to fans in clinic. Funding to allow patients to be supplied with and taught how to use a fan would support uptake. Research is needed to address concerns about infection risk.


Assuntos
COVID-19 , Médicos , Humanos , Dispneia/terapia , Cuidados Paliativos , Pesquisa Qualitativa
2.
Indian J Palliat Care ; 27(1): 54-61, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34035618

RESUMO

OBJECTIVES: Chronic breathlessness syndrome has been defined to help clinicians actively seek, and patients legitimately present with, persistent breathlessness, and to drive services and research. However, views from low- to middle-income countries were not included. We aimed to explore the views of hospital physicians regarding chronic breathlessness syndrome, its recognition and management. METHODS: This was a secondary analysis of qualitative data collected during a service development project. Three focus groups of physicians caring for patients with chronic breathlessness in a single tertiary hospital in South India were conducted in English, audio-recorded, transcribed, and subjected to thematic analysis. RESULTS: Fifteen physicians from oncology, palliative care, cardiology, and respiratory specialties participated. Three major themes (impact, invisibility, and purpose) were generated. Findings mirrored those in high-income countries. Chronic breathlessness, as defined, was seen as prevalent, with a major impact on patients, families, and physicians. Nonpalliative care physicians described therapeutic helplessness with poor awareness and/or ability to manage breathlessness accompanied by active avoidance. This helplessness, a perceived lack of assessment tools and lack of access to palliative care contributed to the "invisibility" of chronic breathlessness. Most participants agreed with the name of chronic breathlessness syndrome. All agreed that systematic identification would foster education regarding assessment and management and support service development and research. CONCLUSIONS: Chronic breathlessness syndrome is recognized in South India but, as in higher-income countries, risks being invisible due to the lack of awareness of therapeutic interventions. A named and defined syndrome was seen as a way to improve identification and management.

3.
Palliat Med ; 35(9): 1663-1670, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-33726609

RESUMO

BACKGROUND: Sleep, a multi-dimensional experience, is essential for optimal physical and mental wellbeing. Poor sleep is associated with worse wellbeing but data are scarce from multi-site studies on sleeping-related distress in palliative care populations. AIM: To evaluate patient-reported distress related to sleep and explore key demographic and symptom distress related to pain, breathing or fatigue. DESIGN: Australian national, consecutive cohort study with prospectively collected point-of-care data using symptoms from the Symptom Assessment Scale (SAS). SETTING/PARTICIPANTS: People (n = 118,117; 475,298 phases of care) who died while being seen by specialist palliative care services (n = 152) 2013-2019. Settings: inpatient (direct care, consultative); community (outpatient clinics, home, residential aged care). RESULTS: Moderate/severe levels of sleeping-related distress were reported in 11.9% of assessments, more frequently by males (12.7% vs 10.9% females); people aged <50 years (16.2% vs 11.5%); and people with cancer (12.3% vs 10.0% for other diagnoses). Sleeping-related distress peaked with mid-range Australia-modified Karnofsky Performance Status scores (40-60).Strong associations existed between pain-, breathing- and fatigue-related distress in people who identified moderate/severe sleeping-related distress, adjusted for age, sex and functional status. Those reporting moderate/severe sleeping-related distress were also more likely to experience severe pain-related distress (adjusted odds ratios [OR] 6.6; 95% confidence interval (CI) 6.3, 6.9); breathing-related distress (OR 6.2; 95% CI 5.8, 6.6); and fatigue-related distress (OR 10.4; 95% CI 9.99-10.8). CONCLUSIONS: This large, representative study of palliative care patients shows high prevalence of sleeping-related distress, with strong associations shown to distress from other symptoms including pain, breathlessness and fatigue.


Assuntos
Cuidados Paliativos , Sono , Austrália/epidemiologia , Estudos de Coortes , Feminino , Humanos , Masculino , Estudos Prospectivos
4.
Thorax ; 76(10): 989-995, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33593929

RESUMO

BACKGROUND: Malignant and non-malignant respiratory diseases account for >4.6 million deaths annually worldwide. Despite similar symptom burdens, serious inequities in access to palliative care persists for people with non-malignant respiratory diseases. AIM: To compare functional decline and symptom distress in advanced malignant and non-malignant lung diseases using consecutive, routinely collected, point-of-care national data. SETTING/PARTICIPANTS: The Australian national Palliative Care Outcomes Collaboration collects functional status (Australia-modified Karnofsky Performance Status (AKPS)) and symptom distress (patient-reported 0-10 numerical rating scale) in inpatient and community settings. Five years of data used Joinpoint and weighted scatterplot smoothing. RESULTS: In lung cancers (89 904 observations; 18 586 patients) and non-malignant end-stage respiratory diseases (14 827 observations; 4279 patients), age at death was significantly lower in people with lung cancer (73 years; IQR 65-81) than non-malignant end-stage respiratory diseases (81 years; IQR 73-87 years; p<0.001). Four months before death, median AKPS was 40 in lung cancers and 30 in non-malignant end-stage respiratory diseases (p<0.001). Functional decline was similar in the two groups and accelerated in the last month of life. People with non-malignant diseases accessed palliative care later.Pain-related distress was greater with cancer and breathing-related distress with non-malignant disease. Breathing-related distress increased towards death in malignant, but decreased in non-malignant disease. Distress from fatigue and poor sleep were similar for both. CONCLUSIONS: In this large dataset unlike previous datasets, the pattern of functional decline was similar as was overall symptom burden. Timely access to palliative care should be based on needs not diagnoses.


Assuntos
Neoplasias Pulmonares , Cuidados Paliativos , Austrália/epidemiologia , Humanos , Neoplasias Pulmonares/complicações
5.
Palliat Med ; 34(10): 1291-1304, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32720568

RESUMO

BACKGROUND: Chronic obstructive pulmonary disease and lung cancer are both life-limiting diseases that confer burden in the form of symptoms and affect functioning and quality of life. Comparing burden between these diseases is of interest to determine whether people with chronic obstructive pulmonary disease require improved access to Specialist Palliative Care. Access should be based on needs rather than diagnosis or prognosis but is limited for people with chronic obstructive pulmonary disease compared to lung cancer. AIM: The aim of this study was to synthesise research comparing burden from chronic obstructive pulmonary disease and lung cancer to estimate relative need for Specialist Palliative Care. DESIGN: A systematic review was conducted of observational quantitative studies published in English peer-reviewed journals comparing burden from chronic obstructive pulmonary disease and lung cancer (PROSPERO CRD42018108819). No limits were placed on disease stage. Meta-analyses were performed where studies used the same measure; otherwise, synthesis used a narrative approach. Risk of bias was assessed using the Agency for Healthcare Research and Quality tool. DATA SOURCES: Electronic databases were searched in September 2019. RESULTS: Of 790 articles returned, 13 were included, reporting 11 studies. Risk of bias was generally moderate. Except for pain, burden tended to be at least as substantial from chronic obstructive pulmonary disease as from lung cancer, with breathlessness and impacts on functioning being significantly worse. Longitudinal studies suggest that people with chronic obstructive pulmonary disease live with burden for longer. CONCLUSION: Efforts should be made to ensure that access to Specialist Palliative Care is commensurate with chronic obstructive pulmonary disease's substantial and long-lasting burden. Future research should clarify whether managing burden in chronic obstructive pulmonary disease and lung cancer requires different approaches.


Assuntos
Neoplasias Pulmonares , Doença Pulmonar Obstrutiva Crônica , Dispneia/etiologia , Humanos , Estudos Longitudinais , Doença Pulmonar Obstrutiva Crônica/terapia , Qualidade de Vida
6.
BMJ Support Palliat Care ; 9(4): 478-481, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31068332

RESUMO

OBJECTIVES: To examine whether use of a hand-held fan ('fan') improves breathlessness and increases physical activity. METHODS: A secondary exploratory analysis using pooled data from the fan arms of two feasibility randomised controlled trials in people with chronic breathlessness: (1) fan and activity advice vs activity advice, (2) activity advice alone or with the addition or the 'calming hand', or the fan, or both. Descriptive statistics and regression analysis to explore patient characteristics associated with benefit (eg age, sex, diagnosis, general self-efficacy). RESULTS: Forty-one participants were allocated the fan (73 years (IQR 65-76, range 46-88), 59% male, 20 (49%) chronic obstructive pulmonary disease (COPD), three (7%) heart failure, three (7%) cancer). Thirty-five (85%) reported that the fan helped breathing, and 22 (54%) reported increased physical activity.Breathlessness benefit was more likely in older people, those with COPD and those with a carer. However, due to the small sample size none of these findings were statistically significant. Those with COPD were more likely to use the fan than people with other diagnoses (OR 5.94 (95% CI 0.63 to 56.21, p=0.120)). CONCLUSIONS: These exploratory data support that the fan helps chronic breathlessness in most people and adds new data to indicate that the fan is perceived to increase people's physical activity. There is also a signal of possible particular benefits in people with COPD which is worthy of further study.


Assuntos
Dispneia/terapia , Ventilação , Idoso , Idoso de 80 Anos ou mais , Exercício Físico , Estudos de Viabilidade , Feminino , Insuficiência Cardíaca/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Doença Pulmonar Obstrutiva Crônica/terapia , Respiração
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