Palliative care for lung disease: start early, stay late

Sorenson, Helen M.

doi:10.1016/s2213-2600(13)70083-3

Cited by 9 publications

(8 citation statements)

References 5 publications

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“…It causes substantial disability, anxiety and social isolation and is difficult to treat. [1][2][3][4] Globally, over 75 million people have breathlessness annually, including over 58 million people with severe lung disease, 5 more than 5 million people with incurable cancer and more than 12 million people with heart failure. 6,7 The high symptom burden and progressive nature of refractory breathlessness in advanced disease suggest that patients will require increasing help from professionals and family members.…”

Section: Introductionmentioning

confidence: 99%

Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis

et al. 2017

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Background:Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation. These result in high health-resource use, although this is not quantified.Aims:To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs.Design:A cross-sectional secondary analysis of data from a randomised controlled trial.Setting/participants:Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London.Results:Of 105 patients recruited, the mean cost of formal care was £3253 (standard deviation £3652) for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed <1%. When informal care was included, the total cost increased by >250% to £11,507 (standard deviation £9911). Increased patient disability resulting from breathlessness was associated with high cost (£629 per unit increase in disability score; p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients.Conclusion:Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness. Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group.

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Section: Introductionmentioning

confidence: 99%

Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis

et al. 2017

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“…However, patients with advanced COPD often do not receive palliative care until late in the course of treatment [9]. In a cross-sectional observational study, JANSSEN et al [10] found that only 1.9% of patients with advanced COPD were treated with strong opioids such as morphine and 57.1% reported severe dyspnoea.…”

Section: Introductionmentioning

confidence: 99%

Palliative care needs in COPD patients with or without cancer: an epidemiological study

Meffert

Hatami²,

Xander

et al. 2015

Eur Respir J

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Chronic obstructive pulmonary disease (COPD) is a growing cause of morbidity and mortality worldwide. However, many patients with severe COPD do not receive adequate palliative care. The main goals of our study were to identify the percentage of hospital patients with palliative care needs, particularly those who suffer from COPD.Data were collected prospectively from inpatients at the University Medical Centre Freiburg (Freiburg, Germany). Based on the World Health Organization definition of palliative care, the treating physician reported for each patient discharged whether the patient had palliative care needs or not. Data from 39 849 patients could be analysed, of which 1455 were suffering from COPD.Of all COPD patients, 9.1% had palliative care needs. In COPD patients with palliative care needs, hospital stay was significantly longer (13.7 versus 10.3 days) than in the group without palliative care needs, and significantly more patients died during their hospital stay (8.3% versus 3.7%). The presence of metastases was the highest risk factor for developing palliative care needs (OR 4.18). Furthermore, a main diagnosis of COPD implied an increased probability of palliative care needs (OR 1.87).Our results show that COPD patients have a high risk of developing palliative care needs. Further efforts are required to provide palliative care to COPD patients. @ERSpublicationsPatients with COPD as a main diagnosis or a comorbid condition have a high risk of developing palliative care needs

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“…Worldwide, >75 million people have breathlessness, including >90% of the 65 million people with severe lung disease [ 1 ], >50% of the 10 million with incurable cancer and 50% of the 23 million with heart failure [ 2 , 3 ]. More than two-thirds of those living with breathlessness have multimorbidities [ 4 ].…”

Section: Introductionmentioning

confidence: 99%

A randomised, controlled, feasibility trial of an online, self-guided breathlessness supportive intervention (SELF-BREATHE) for individuals with chronic breathlessness due to advanced disease

et al. 2023

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IntroductionSELF-BREATHE is a complex, transdiagnostic, supportive, digital breathlessness intervention co-developed with patients. SELF-BREATHE seeks to build capacity and resilience within health services by improving the lives of people with chronic breathlessness using nonpharmacological, self-management approaches. This study aimed to determine whether SELF-BREATHE is feasible to deliver and acceptable to patients living with chronic breathlessness.MethodsDesign: A parallel, two arm, single blind, single centre, randomised controlled mixed-methods feasibility trial with participants allocated to 1) intervention group (SELF-BREATHE) or 2) control group (usual NHS care).SettingLarge multisite NHS Foundation Trust in Southeast London.ParticipantsPatients living with chronic breathlessness due to advanced malignant or non-malignant disease(s).InterventionParticipants were randomly allocated (1:1) to an online, self-guided, breathlessness, supportive intervention (SELF-BREATHE) and usual care or usual care alone, over six weeks.A priori progression criteria≥30% of eligible patients given an information sheet consented to participate,≥60% of participants logged on and accessed SELF–BREATHE within 2 weeks, ≥70% of patients reported the methodology and intervention as acceptable.ResultsBetween January 2021 and January 2022, 52/110 (47%) eligible patients consented and were randomised. Of those randomised to SELF-BREATHE, 19/26 (73%) logged on and used SELF-BREATHE for a mean (sd, range) of 9 (8, 1–33) times over 6-weeks. Thirty-six of the 52 (70%) randomised participants completed and returned the end of study postal questionnaires. SELF-BREATHE users reported it to be acceptable. Post intervention qualitative interviews demonstrated that SELF-BREATHE was acceptable and valued, by users, improving breathlessness during daily life and at points of breathlessness crisis.ConclusionThese data support the feasibility of moving to a fully powered, efficacy, randomised controlled trial with minor modifications to minimise missing data (i.e., multiple methods for data collection, face-to-face, telephone, video assessment andviapost).

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Palliative care for lung disease: start early, stay late

Cited by 9 publications

References 5 publications

Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis

Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis

Palliative care needs in COPD patients with or without cancer: an epidemiological study

A randomised, controlled, feasibility trial of an online, self-guided breathlessness supportive intervention (SELF-BREATHE) for individuals with chronic breathlessness due to advanced disease

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