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1.
Pract Radiat Oncol ; 2024 Apr 27.
Article in English | MEDLINE | ID: mdl-38685449

ABSTRACT

PURPOSE: We aimed to update the trend of hypofractionated whole-breast irradiation (HF-WBI) use over time in the US and examine factors associated with lack of HF-WBI adoption for patients with early-stage invasive breast cancer (IBC) or ductal carcinoma in situ (DCIS) undergoing a lumpectomy. METHODS AND MATERIALS: Among patients who underwent a lumpectomy, we identified 928,034 patients with early-stage IBC and 330,964 patients with DCIS in the 2004 to 2020 National Cancer Database. We defined HF-WBI as 2.5-3.33 Gy/fraction to the breast and conventionally fractionated WBI as 1.8-2.0 Gy/fraction. We evaluated the trend of HF-WBI utilization using a generalized linear model with the log link and binomial distribution. Factors associated with HF-WBI utilization were assessed using multivariable logistic regression in patients diagnosed between 2018 and 2020. RESULTS: Among patients with IBC, HF-WBI use has significantly increased from 0.7% in 2004 to 63.9% in 2020. Similarly, HF-WBI usage among patients with DCIS has also increased significantly from 0.4% in 2004 to 56.6% in 2020. Black patients with IBC were less likely than White patients to receive HF-WBI (adjusted odds ratio [AOR] 0.81; 95% CI, 0.77-0.85). Community cancer programs were less likely to administer HF-WBI to patients with IBC (AOR, 0.80; 95% CI, 0.77-0.84) and to those with DCIS (AOR, 0.87; 95% CI, 0.79-0.96) than academic/research programs. Younger age, positive nodes, larger tumor size, low volume programs, and facility location were also associated with lack of HF-WBI adoption in both patient cohorts. CONCLUSIONS: HF-WBI utilization among postlumpectomy patients has significantly increased from 2004 to 2020 and can finally be considered standard of care in the US. We found substantial disparities in adoption within patient and facility subgroups. Reducing disparities in HF-WBI adoption has the potential to further alleviate health care costs while improving patients' quality of life.

2.
ERJ Open Res ; 9(2)2023 Mar.
Article in English | MEDLINE | ID: mdl-37020840

ABSTRACT

Research question: Pulmonary rehabilitation is the best treatment for chronic breathlessness in COPD but there remains an unmet need to improve efficacy. Pulmonary rehabilitation has strong parallels with exposure-based cognitive behavioural therapies (CBT), both clinically and in terms of brain activity patterns. The partial N-methyl-d-aspartate (NMDA)-receptor agonist d-cycloserine has shown promising results in enhancing efficacy of CBT, thus we hypothesised that it would similarly augment the effects of pulmonary rehabilitation in the brain. Positive findings would support further development in phase 3 clinical trials. Methods: 72 participants with mild-to-moderate COPD were recruited to a double-blind pre-registered (ClinicalTrials.gov identifier: NCT01985750) experimental medicine study running parallel to a pulmonary rehabilitation course. Participants were randomised to 250 mg d-cycloserine or placebo, administered immediately prior to the first four sessions of pulmonary rehabilitation. Primary outcome measures were differences between d-cycloserine and placebo in brain activity in the anterior insula, posterior insula, anterior cingulate cortices, amygdala and hippocampus following completion of pulmonary rehabilitation. Secondary outcomes included the same measures at an intermediate time point and voxel-wise difference across wider brain regions. An exploratory analysis determined the interaction with breathlessness anxiety. Results: No difference between d-cycloserine and placebo groups was observed across the primary or secondary outcome measures. d-cycloserine was shown instead to interact with changes in breathlessness anxiety to dampen reactivity to breathlessness cues. Questionnaire and measures of respiratory function showed no group difference. This is the first study testing brain-active drugs in pulmonary rehabilitation. Rigorous trial methodology and validated surrogate end-points maximised statistical power. Conclusion: Although increasing evidence supports therapeutic modulation of NMDA pathways to treat symptoms, we conclude that a phase 3 clinical trial of d-cycloserine would not be worthwhile.

4.
NPJ Prim Care Respir Med ; 31(1): 25, 2021 05 10.
Article in English | MEDLINE | ID: mdl-33972569

ABSTRACT

Chronic breathlessness is a distressing symptom that is challenging to manage. The Breathing, Thinking, Functioning clinical model is an educational tool developed to support breathlessness management. Health professionals report that the model increases clinician and patient understanding of this complex symptom, and provides a simple and structured approach to personalised self-management.


Subject(s)
Dyspnea , Self-Management , Dyspnea/etiology , Dyspnea/therapy , Health Services , Humans
5.
Rheumatol Adv Pract ; 5(1): rkab019, 2021.
Article in English | MEDLINE | ID: mdl-33928213

ABSTRACT

OBJECTIVES: The aim was to investigate whether National Health Service (NHS) employees with SLE, for whom work disability and early retirement are high, are supported effectively in at work. METHODS: An online survey of 393 people with lupus was completed through the LUPUS UK website, investigating participants' experiences in maintaining employment. Quantitative and qualitative data were collected. Disease fluctuation, invisibility and fatigue were identified as having substantial negative impacts on employment. This study examined data from a large subgroup (n = 72, 18.74%) of current/previous NHS employees. Descriptive statistics and thematic analysis were used to explore and characterize the demography and experiences of participants. RESULTS: The NHS subgroup (n = 72) represented 18.74% of the whole cohort; 100% were female and of working age (18-64 years). Fifty-one were currently (70.8%) and 21 previously (29.2%) NHS employees. Forty-nine (60%) were clinicians. Twenty-one (29.16%) of this working-age subgroup had left any employment. Negative effects of SLE on employment were universal (including an impact on career choices, work disability, enforced part-time working, lower income and early retirement). NHS support for participants to maintain employment was inconsistent, with more negative experiences than positive. The impact of SLE on employment seemed to be poorly understood. CONCLUSION: A punitive approach to NHS employees with SLE was more common than a proactive, flexible, problem-solving one despite inclusive rhetoric, resulting in the loss of skills and experience to the service. Characterizing conditions such as SLE and long coronavirus disease 2019 as fluctuating, invisible conditions with constitutional symptoms highlights features with negative employment impact, potentially facilitating much-needed change in NHS organizations, with greater use of occupational health, vocational rehabilitation, redeployment and retraining opportunities, highlighting the need for evidence-based employment interventions and improved management of fatigue.

9.
Palliat Care Soc Pract ; 14: 2632352420953436, 2020.
Article in English | MEDLINE | ID: mdl-33111060

ABSTRACT

This is a personal account of using hypnosis as an adjunct to specialist palliative care (SPC) treatment approaches. After a brief systematic review of the literature, one clinician's experience is outlined illustrated by short, anonymized case histories. It argues that the approach is underused in SPC. The barriers currently restricting its routine adoption in SPC are discussed including (1) a lack of SPC clinical trials, (2) a misunderstanding of hypnosis leading to stigma, and (3) its absence from clinicians' training pathways. While the evidence base for the effectiveness of hypnosis in 'supportive care', for example, managing chemotherapy-induced vomiting, is appreciable, there is a gap in SPC. There is little data to guide the use of hypnosis in the intractable symptoms of the dying, for example, breathlessness or the distress associated with missed or late diagnosis. There are many people now 'living with and beyond cancer' with chronic symptomatic illness, 'treatable but not curable'. Patients often live with symptoms over a long period, which are only partially responsive to pharmacological and other therapies. Hypnosis may help improve symptom control and quality of life. SPC trials are needed so that this useful tool for self-management of difficult symptoms can be more widely adopted.

10.
ERJ Open Res ; 6(4)2020 Oct.
Article in English | MEDLINE | ID: mdl-33043056

ABSTRACT

Internet images associated with breathlessness and COPD are mainly aimed at clinicians, more likely to be negative, and are gender and culturally exclusive compared with other cardiorespiratory conditions https://bit.ly/2DMfs0r.

11.
BMC Med Educ ; 20(1): 90, 2020 Mar 30.
Article in English | MEDLINE | ID: mdl-32228544

ABSTRACT

BACKGROUND: Clinicians and people living with chronic breathlessness have expressed a need to better understand and manage this symptom. The aim of this study was to evaluate a 3-day health professional training workshop on the practical management of chronic breathlessness. METHODS: Workshop design and delivery were based on current understandings and clinical models of chronic breathlessness management, principles of transformative learning, and included sessions co-designed with people living with breathlessness. Registrants were invited to complete pre and post-workshop surveys. Pre and 1-week post-workshop online questionnaires assessed familiarity and confidence about workshop objectives (0[lowest]-10[highest] visual analogue scale), attitudes and practices regarding chronic breathlessness (agreement with statements on 5-point Likert scales). Post-workshop, participants were asked to describe implementation plans and anticipated barriers. Baseline familiarity and confidence were reported as mean (SD) and change examined with paired t-tests. Pre-post attitudes and practices were summarised by frequency/percentages and change examined non-parametrically (5-point Likert scale responses) or using a McNemar test of change (binary responses). RESULTS: Forty-seven of 55 registrants joined the study; 39 completed both pre and post-workshop questionnaires (35 female; 87% clinicians; median 8 years working with people with chronic breathlessness). Post-workshop, greatest gains in confidence were demonstrated for describing biopsychosocial concepts unpinning chronic breathlessness (mean change confidence = 3.2 points; 95% CI 2.7 to 4.0, p < 0.001). Respondents significantly changed their belief toward agreement that people are able to rate their breathlessness intensity on a scale (60 to 81% agreement) although only a minority strongly agreed with this statement at both time points (pre 11%, post 22%). The largest shift in attitude was toward agreement (z statistic 3.74, p < 0.001, effect size r = 0.6) that a person's experience of breathlessness should be used to guide treatment decisions (from 43 to 73% strong agreement). Participants' belief that cognitive behavioural strategies are effective for relief of breathlessness changed further toward agreement after the workshop (81 to 100%, McNemar test chi- square = 5.14, p = 0.02). CONCLUSION: The focus of this training on biopsychosocial understandings of chronic breathlessness and involvement of people living with this symptom were valued. These features were identified as facilitators of change in fundamental attitudes and preparedness for practice.


Subject(s)
Attitude of Health Personnel , Clinical Competence , Dyspnea/therapy , Health Personnel/education , Self Efficacy , Adult , Female , Humans , Male , Middle Aged , Program Evaluation , Surveys and Questionnaires
12.
J Pain Symptom Manage ; 59(5): 1059-1066.e2, 2020 05.
Article in English | MEDLINE | ID: mdl-32006612

ABSTRACT

CONTEXT: Breathlessness is common in people with lung cancer. Nonpharmacological breathlessness interventions reduce distress because of and increase mastery over breathlessness. OBJECTIVES: Identify patient characteristics associated with response to breathlessness interventions. METHODS: Exploratory secondary trial data analysis. Response defined as a one-point improvement in 0-10 Numerical Rating Scale of worst breathlessness/last 24 hours (response-worst) or a 0.5-point improvement in the Chronic Respiratory Questionnaire (CRQ) mastery (response-mastery) at four weeks. Univariable regression explored relationships with plausible demographic, clinical, and psychological variables followed by multivariable regression for associated (P < 0.05) variables. RESULTS: About 158 participants with intrathoracic cancer (mean age 69.4 [SD 9.35] years; 40% women) were randomized to one or three breathlessness training sessions. About 91 participants had evaluable data for response-worst and 107 for response-mastery. In the univariable analyses, the personality trait openness was associated with response-worst (odds ratio [OR] 1.99 [95% CI 1.08-3.67]; P = 0.028) and response-mastery (OR 1.84 [95% CI 1.04-3.23]; P = 0.035). Higher CRQ-fatigue (OR 0.61 [95% CI 0.41-0.91]; P = 0.015), CRQ-emotion (OR 0.68 [95% CI 0.47-0.96]; P = 0.030), and worse CRQ-mastery (OR 0.61 [95% CI 0.42-0.88]; P = 0.008), and the presence of metastases and fatigue were associated with reduced odds of response-mastery. In the adjusted response-mastery model, only openness remained (OR 1.73 [95% CI 0.95-3.15]; P = 0.072). CONCLUSION: Worse baseline health, worse breathlessness mastery, but not severity, and openness were associated with a better odds of response. Breathlessness services must be easy to access, and patients should be encouraged and supported to attend.


Subject(s)
Dyspnea , Lung Neoplasms , Aged , Dyspnea/therapy , Female , Humans , Lung Neoplasms/complications , Lung Neoplasms/therapy , Male , Personality , Surveys and Questionnaires
13.
Breathe (Sheff) ; 15(3): 198-215, 2019 Sep.
Article in English | MEDLINE | ID: mdl-31508158

ABSTRACT

Advanced respiratory disease imposes a greater symptom burden than many cancers but not does have comparable recognition of the need for supportive and palliative care or the infrastructure for its systematic delivery. Consequently, many people with advanced respiratory disease (and those closest to them) have a poor quality of life, disabled by chronic breathlessness, fatigue and other symptoms. They are socially isolated by the consequences of long-term illness and are often financially impoverished. The past decade has seen an increasing realisation that care for this group must improve and that symptom management must be prioritised. Clinical guidelines recommend person-centred care, including access to supportive and palliative care as needed, as part of standard medical practice. Advanced lung disease clinics and specialist breathlessness services (pioneered within palliative care) are developing within respiratory medicine services but are provided inconsistently. This review covers the comprehensive assessment of the patient with advanced respiratory disease, the importance of supporting carers and the current best practice in the management of breathlessness, fatigue and cough. It also suggests ways to incorporate person-centred care into the general respiratory clinic, assisted by better liaison with specialist palliative and primary care. Emerging evidence shows that excellent symptom management leads to better clinical outcomes and reduces inappropriate use of emergency medical services. KEY POINTS: People living with advanced respiratory disease and severe chronic breathlessness (and those closest to them) have a poor quality of life.Chronic breathlessness is a disabling symptom, and acute-on-chronic/episodic breathlessness is frightening to experience and observe.Chronic breathlessness imposes profound physical limitations and psychosocial burdens on those suffering from it or living with someone experiencing it.Fatigue and cough are two other cardinal symptoms of advanced respiratory disease, with very detrimental effects on quality of life.The impact of all these symptoms can be alleviated to a variable extent by a predominantly non-drug complex intervention.Many of the interventions are delivered primarily by allied health or nursing professionals.Doctors, nurses and other health professionals also need to play an active part in promoting quality of life as part of excellent medical care.A person-centred, psychologically informed approach is needed by all clinicians treating patients with advanced respiratory disease. EDUCATIONAL AIMS: To give specialist respiratory clinicians practical clinical tools to help improve the quality of life of their patients with advanced respiratory disease and chronic breathlessness.To outline the evidence base for these interventions with reference to definitive sources.To highlight the importance of person-centred care in people with respiratory disease at all stages of illness.

14.
BMJ Support Palliat Care ; 9(4): 478-481, 2019 Dec.
Article in English | MEDLINE | ID: mdl-31068332

ABSTRACT

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.


Subject(s)
Dyspnea/therapy , Ventilation , Aged , Aged, 80 and over , Exercise , Feasibility Studies , Female , Heart Failure/therapy , Humans , Male , Middle Aged , Pulmonary Disease, Chronic Obstructive/therapy , Respiration
15.
Palliat Med ; 33(6): 618-633, 2019 06.
Article in English | MEDLINE | ID: mdl-30848701

ABSTRACT

BACKGROUND: Chronic breathlessness is a neglected symptom of advanced diseases. AIM: To examine the effect of airflow for chronic breathlessness relief. DESIGN: Exploratory systematic review and meta-analysis. DATA SOURCES: Medline, CINAHL, AMED and Cochrane databases were searched (1985-2018) for observational studies or randomised controlled trials of airflow as intervention or comparator. Selection against predefined inclusion criteria, quality appraisal and data extraction was conducted by two independent reviewers with access to a third for unresolved differences. 'Before and after' breathlessness measures from airflow arms were analysed. Meta-analysis was carried out where possible. RESULTS: In all, 16 of 78 studies (n = 929) were included: 11 randomised controlled trials of oxygen versus medical air, 4 randomised controlled trials and 1 fan cohort study. Three meta-analyses were possible: (1) Fan at rest in three studies (n = 111) offered significant benefit for breathlessness intensity (0-100 mm visual analogue scale and 0-10 numerical rating scale), mean difference -11.17 (95% confidence intervals (CI) -16.60 to -5.74), p = 0.06 I2 64%. (2) Medical air via nasal cannulae at rest in two studies (n = 89) improved breathlessness intensity (visual analogue scale), mean difference -12.0 mm, 95% CI -7.4 to -16.6, p < 0.0001 I2 = 0%. (3) Medical airflow during a constant load exercise test before and after rehabilitation (n = 29) in two studies improved breathlessness intensity (modified Borg scale, 0-10), mean difference -2.9, 95% CI -3.2 to -2.7, p < 0.0001 I2 = 0%. CONCLUSION: Airflow appears to offer meaningful relief of chronic breathlessness and should be considered as an adjunct treatment in the management of breathlessness.


Subject(s)
Dyspnea/therapy , Oxygen Inhalation Therapy/methods , Pulmonary Disease, Chronic Obstructive/therapy , Adult , Aged , Aged, 80 and over , Cohort Studies , Female , Humans , Male , Middle Aged
16.
Chron Respir Dis ; 16: 1479973118816448, 2019.
Article in English | MEDLINE | ID: mdl-30789022

ABSTRACT

Chronic breathlessness is highly distressing for people with advanced disease and their informal carers, yet health services for this group remain highly heterogeneous. We aimed to generate evidence-based stakeholder-endorsed recommendations for practice, policy and research concerning services for people with advanced disease and chronic breathlessness. We used transparent expert consultation, comprising modified nominal group technique during a stakeholder workshop, and an online consensus survey. Stakeholders, representing multiple specialities and professions, and patient/carers were invited to participate. Thirty-seven participants attended the stakeholder workshop and generated 34 separate recommendations, rated by 74 online survey respondents. Seven recommendations had strong agreement and high levels of consensus. Stakeholders agreed services should be person-centred and flexible, should cut across multiple disciplines and providers and should prioritize breathlessness management in its own right. They advocated for wide geographical coverage and access to expert care, supported through skills-sharing among professionals. They also recommended recognition of informal carers and their role by clinicians and policymakers. Overall, stakeholders' recommendations reflect the need for improved access to person-centred, multi-professional care and support for carers to provide or access breathlessness management interventions. Future research should test the optimal models of care and educational strategies to meet these recommendations.


Subject(s)
Dyspnea , Expert Testimony/methods , Health Services Accessibility/organization & administration , Intersectoral Collaboration , Patient-Centered Care , Chronic Disease , Consensus , Delphi Technique , Disease Progression , Dyspnea/epidemiology , Dyspnea/etiology , Dyspnea/physiopathology , Dyspnea/therapy , Humans , Patient-Centered Care/methods , Patient-Centered Care/organization & administration , Patient-Centered Care/standards , Policy Making , Referral and Consultation/organization & administration , Severity of Illness Index , Stakeholder Participation , United Kingdom
17.
Palliat Med ; 33(4): 462-466, 2019 04.
Article in English | MEDLINE | ID: mdl-30764714

ABSTRACT

BACKGROUND: Holistic breathlessness services have been developed for people with advanced disease and chronic breathlessness, leading to improved psychological aspects of breathlessness and health. The extent to which patient characteristics influence outcomes is unclear. AIM: To identify patient characteristics predicting outcomes of mastery and distress due to breathlessness following holistic breathlessness services. DESIGN: Secondary analysis of pooled individual patient data from three clinical trials. Our primary analysis assessed predictors of clinically important improvements in Chronic Respiratory Questionnaire mastery scores (+0.5 point), and our secondary analysis predictors of improvements in Numerical Rating Scale distress due to breathlessness (-1 point). Variables significantly related to improvement in univariate models were considered in separate backwards stepwise logistic regression models. PARTICIPANTS: The dataset comprised 259 participants (118 female; mean (standard deviation) age 69.2 (10.6) years) with primary diagnoses of chronic obstructive pulmonary disease (49.8%), cancer (34.7%) and interstitial lung disease (10.4%). RESULTS: Controlling for age, sex and trial, baseline mastery remained the only significant independent predictor of improvement in mastery (odds ratio 0.57, 95% confidence intervals 0.43-0.74; p < 0.001), and baseline distress remained the only significant predictor of improvement in distress (odds ratio 1.64; 95% confidence intervals 1.35-2.03; p < 0.001). Baseline lung function, breathlessness severity, health status, mild anxiety and depression, and diagnosis did not predict outcomes. CONCLUSIONS: Outcomes of mastery and distress following holistic breathlessness services are influenced by baseline scores for these variables, and not by diagnosis, lung function or health status. Stratifying patients by levels of mastery and/or distress due to breathlessness appears appropriate for clinical trials and services.


Subject(s)
Dyspnea/etiology , Dyspnea/therapy , Holistic Health , Outcome Assessment, Health Care/methods , Palliative Care , Pulmonary Disease, Chronic Obstructive/complications , Aged , Female , Health Care Surveys , Humans , Male , Middle Aged , Prognosis
18.
Intern Med J ; 49(2): 252-256, 2019 Feb.
Article in English | MEDLINE | ID: mdl-30754086

ABSTRACT

As palliative oxygen therapy (POT) is beneficial only to a minority of patients with chronic breathlessness, it is no longer routinely recommended. This multi-national, online survey of respiratory and palliative medicine specialists, with 440 participants, identified that prescription of POT has decreased over the past decade; however a sizeable proportion of doctors, particularly within palliative care, still support and recommend POT. Further education and research regarding the optimal management of chronic breathlessness are required.


Subject(s)
Attitude of Health Personnel , Dyspnea/therapy , Oxygen Inhalation Therapy , Palliative Care/methods , Pulmonary Disease, Chronic Obstructive/therapy , Adult , Advance Care Planning/organization & administration , Aged , Dyspnea/etiology , Female , Humans , Internationality , Male , Middle Aged , Pulmonary Disease, Chronic Obstructive/complications , Surveys and Questionnaires
19.
Thorax ; 74(3): 270-281, 2019 03.
Article in English | MEDLINE | ID: mdl-30498004

ABSTRACT

BACKGROUND: Breathlessness is a common, distressing symptom in people with advanced disease and a marker of deterioration. Holistic services that draw on integrated palliative care have been developed for this group. This systematic review aimed to examine the outcomes, experiences and therapeutic components of these services. METHODS: Systematic review searching nine databases to June 2017 for experimental, qualitative and observational studies. Eligibility and quality were independently assessed by two authors. Data on service models, health and cost outcomes were synthesised, using meta-analyses as indicated. Data on recipient experiences were synthesised thematically and integrated at the level of interpretation and reporting. RESULTS: From 3239 records identified, 37 articles were included representing 18 different services. Most services enrolled people with thoracic cancer, involved palliative care staff and comprised 4-6 contacts over 4-6 weeks. Commonly used interventions included breathing techniques, psychological support and relaxation techniques. Meta-analyses demonstrated reductions in Numeric Rating Scale distress due to breathlessness (n=324; mean difference (MD) -2.30, 95% CI -4.43 to -0.16, p=0.03) and Hospital Anxiety and Depression Scale (HADS) depression scores (n=408, MD -1.67, 95% CI -2.52 to -0.81, p<0.001) favouring the intervention. Statistically non-significant effects were observed for Chronic Respiratory Questionnaire (CRQ) mastery (n=259, MD 0.23, 95% CI -0.10 to 0.55, p=0.17) and HADS anxiety scores (n=552, MD -1.59, 95% CI -3.22 to 0.05, p=0.06). Patients and carers valued tailored education, self-management interventions and expert staff providing person-centred, dignified care. However, there was no observable effect on health status or quality of life, and mixed evidence around physical function. CONCLUSION: Holistic services for chronic breathlessness can reduce distress in patients with advanced disease and may improve psychological outcomes of anxiety and depression. Therapeutic components of these services should be shared and integrated into clinical practice. REGISTRATION NUMBER: CRD42017057508.


Subject(s)
Dyspnea/therapy , Holistic Health , Palliative Care , Chronic Disease , Dyspnea/etiology , Dyspnea/psychology
20.
BMC Palliat Care ; 17(1): 115, 2018 Oct 15.
Article in English | MEDLINE | ID: mdl-30322397

ABSTRACT

BACKGROUND: Chronic obstructive pulmonary disease (COPD) guidelines recommend early access to palliative care together with optimal, disease-directed therapy for people with advanced disease, however, this occurs infrequently. This study explored the approaches of respiratory and palliative medicine specialists to palliative care and advance care planning (ACP) in advanced COPD. METHODS: An online survey was emailed to all specialists and trainees in respiratory medicine in Australia and New Zealand (ANZ), and to all palliative medicine specialists and trainees in ANZ and the United Kingdom. RESULTS: Five hundred seventy-seven (33.1%) responses were received, with 440 (25.2%) complete questionnaires included from 177 respiratory and 263 palliative medicine doctors. Most respiratory doctors (140, 80.9%) were very or quite comfortable providing a palliative approach themselves to people with COPD. 113 (63.8%) respiratory doctors recommended referring people with advanced COPD to specialist palliative care, mainly for access to: psychosocial and spiritual care (105, 59.3%), carer support (104, 58.5%), and end-of-life care (94, 53.1%). 432 (98.2%) participants recommended initiating ACP discussions. Palliative medicine doctors were more likely to recommend discussing: what palliative care is (p < 0.0001), what death and dying might be like (p < 0.0001) and prognosis (p = 0.004). Themes highlighted in open responses included: inadequate, fragmented models of care, with limited collaboration or support from palliative care services. CONCLUSIONS: While both specialties recognised the significant palliative care and ACP needs of people with advanced COPD, in reality few patients access these elements of care. Formal collaboration and bi-directional support between respiratory and palliative medicine, are required to address these unmet needs.


Subject(s)
Attitude of Health Personnel , Palliative Medicine , Pulmonary Disease, Chronic Obstructive , Pulmonary Medicine , Terminal Care , Adult , Advance Care Planning/organization & administration , Australia , Disease Progression , Female , Humans , Interdisciplinary Communication , Male , Needs Assessment , New Zealand , Palliative Medicine/methods , Palliative Medicine/standards , Pulmonary Disease, Chronic Obstructive/physiopathology , Pulmonary Disease, Chronic Obstructive/psychology , Pulmonary Disease, Chronic Obstructive/therapy , Pulmonary Medicine/methods , Pulmonary Medicine/standards , Qualitative Research , Quality Improvement , Terminal Care/ethics , Terminal Care/methods , Terminal Care/psychology , United Kingdom
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