Smoking and home oxygen therapy: a review and consensus statement from a multidisciplinary Swedish taskforce.

BACKGROUND: Home oxygen therapy (HOT) improves survival in patients with hypoxaemic chronic respiratory disease. Most patients evaluated for HOT are former or active smokers. Oxygen accelerates combustion and smoking may increase the risk of burn injuries and fire hazards; therefore, it is considered a contraindication for HOT in many countries. However, there is variability in the practices and policies regarding this matter. This multidisciplinary Swedish taskforce aimed to review the potential benefits and risks of smoking in relation to HOT, including medical, practical, legal and ethical considerations. METHODS: The taskforce of the Swedish Respiratory Society comprises 15 members across respiratory medicine, nursing, medical law and ethics. HOT effectiveness and adverse risks related to smoking, as well as practical, legal and ethical considerations, were reviewed, resulting in five general questions and four PICO (population-intervention-comparator-outcome) questions. The strength of each recommendation was rated according to the GRADE (grading of recommendation assessment, development and evaluation) methodology. RESULTS: General questions about the practical, legal and ethical aspects of HOT were discussed and summarised in the document. The PICO questions resulted in recommendations about assessment, management and follow-up of smoking when considering HOT, if HOT should be offered to people that meet the eligibility criteria but who continue to smoke, if a specific length of time of smoking cessation should be considered before assessing eligibility for HOT, and identification of areas for further research. CONCLUSIONS: Multiple factors need to be considered in the benefit/risk evaluation of HOT in active smokers. A systematic approach is suggested to guide healthcare professionals in evaluating HOT in relation to smoking.

Knowledge, Beliefs, and Practices Related to Menstruation Among Female Students in Afghanistan.

Background: Menstruation is a universal, natural, unique, and physiological phenomenon. Despite the fact that menstruation is a natural fact of life, it is still considered taboo in Afghanistan and other developing countries. Objective: To assess knowledge, beliefs, and practices related to menstruation among female students of Kabul University of Medical Sciences (KUMS). Methods: A cross-sectional descriptive study design was conducted at KUMS in 2022, and a quota sampling technique was used. Results: In this study, 339 students participated out of the 346-sample size. The majority of participants (70.02%), were over 20 years of age. About (59.60%) of participants were aware of menstruation before menarche. The main source of their information was their mothers (37.50%). The average age of menarche was 13.5 years old. Above 70% of respondents had normal patterns of menstruation. More than half of them (51.90%) had dysmenorrhea. Frequent menstrual disorders were abdominal pain (58.1%), and backache (56.1%). The majority of respondents had good and acceptable knowledge of menstruation (33.6%), and (63.1%) respectively. A statistically significant relationship between knowledge and academic year was observed (P value = 0.005). The majority of respondents (92.6%) had poor menstrual beliefs. A statistically significant relationship between respondents' age and beliefs was observed (P value = 0.004). Mother education did not affect respondents' level of beliefs (P value = 0.4). In addition, respondents had good practice of menstruation (75%). Conclusion: In general participants had a good and acceptable level of knowledge with good practice related to menstruation. Despite the good knowledge and practice, the respondents' beliefs related to menstruation were poorer than what was expected from medical disciplines students. Their frequent source of information was their mothers, which highlights the provision of information and education for mothers and all females.

Breathlessness and exercise performance to predict mortality in long-term oxygen therapy - The population-based DISCOVERY study.

BACKGROUND: Patients with chronic respiratory failure treated with long-term oxygen therapy (LTOT) often have severe breathlessness, impaired exercise performance, and high but variable mortality that is difficult to predict. We aimed to evaluate breathlessness and exercise performance upon starting LTOT as predictors of overall and short-term mortality. METHODS: This was a longitudinal, population-based study of patients who initiated LTOT between 2015 and 2018 in Sweden. Breathlessness was measured using the Dyspnea Exertion Scale, and exercise performance using the 30s-Sit-To-Stand test. Associations with overall and three-month mortality were analyzed using Cox-regression. Subgroup analyses were performed for patients with chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD) respectively. The predictive capacity of models was assessed using a C-statistic. RESULTS: A total of 441 patients (57.6% female, aged 75.4 ± 8.3 years) were analyzed, of whom 141 (32%) died during a median follow-up of 260 (IQR 75-460) days. Both breathlessness and exercise performance were independently associated with overall mortality in the crude models, but only exercise performance remained independently associated with overall mortality when models were adjusted for other predictors, when short-term mortality was analyzed, or when breathlessness and exercise capacity were analyzed concurrently. The multivariable model including exercise performance but not breathlessness provided a relatively high predictive capacity for overall mortality, C-statistic 0.756 (95% CI 0.702-0.810). Similar results were seen in the COPD and ILD subgroups. CONCLUSION: Exercise performance as measured by the 30s-STS may be useful to identify patients with higher mortality on LTOT for optimized management and follow-up.

Agreement of the modified Medical Research Council and New York Heart Association scales for assessing the impact of self-rated breathlessness in cardiopulmonary disease.

BACKGROUND: The functional impact of breathlessness is assessed using the modified Medical Research Council (mMRC) scale for chronic respiratory disease and with the New York Heart Association Functional Classification (NYHA) scale for heart failure. We evaluated agreement between the scales and their concurrent validity with other clinically relevant patient-reported outcomes in cardiorespiratory disease. METHODS: Outpatients with stable chronic respiratory disease or heart failure were recruited. Agreement between the mMRC and NYHA scales was analysed using Cramér's V and Kendall's tau B tests. Concurrent validity was evaluated using correlations with clinically relevant measures of breathlessness, anxiety, depression, and health-related quality of life. Analyses were conducted for all participants and separately in chronic obstructive pulmonary disease (COPD) and heart failure. RESULTS: In a total of 182 participants with cardiorespiratory disease, the agreement between the mMRC and NYHA scales was moderate (Cramér's V: 0.46; Kendall's tau B: 0.57) with similar results for COPD (Cramér's V: 0.46; Kendall's tau B: 0.66) and heart failure (Cramér's V: 0.46; Kendall's tau B: 0.67). In the total population, the scales correlated in similar ways to other patient-reported outcomes. CONCLUSION: In outpatients with cardiorespiratory disease, the mMRC and NYHA scales show moderate to strong correlations and similar associations with other patient-reported outcomes. This supports that the scales are comparable when assessing the impact of breathlessness on function and patient-reported outcomes.

Indications and patterns of use of benzodiazepines and opioids in severe interstitial lung disease: a population-based longitudinal study.

BACKGROUND: Despite evidence that opioids might relieve chronic breathlessness, physicians may still be reluctant to prescribe them due to safety concerns. By contrast, benzodiazepine (BDZ) prescribing often seeks to reduce chronic breathlessness despite no evidence of net benefit. Prescribing patterns and indications for these medications in severe interstitial lung disease (ILD) are unknown. Here, our objective was to evaluate the indications, medications and temporal patterns of BDZ and opioid prescriptions in people with oxygen-dependent ILD. METHODS: This was an observational, population-based, longitudinal study of adults starting long-term oxygen therapy (LTOT) for ILD between 2005 and 2014 in the Swedish National Registry for Respiratory Failure (Swedevox). People dispensed BDZs (n=2000) and opioids (n=2000) from 6 months before start of LTOT throughout follow-up (first of death or study end) were analysed. RESULTS: Of 1635 included patients, 651 (39.8%) received BDZs and 710 (43.4%) received opioids during the study period; 373 (22.8%) patients received both. The most frequently prescribed BDZs and opioids were oxazepam (85.6%) and oxycodone (28.7%), respectively. Indications for breathlessness were uncommon for BDZs (1.4%) and opioids (6.4%). During the last year of life, opioid indications for breathlessness increased from 2.5% (12-10 months before death) to 10.2% in the last 3 months of life (p=0.048). CONCLUSIONS: In oxygen-dependent ILD, opioids are rarely prescribed for breathlessness even in the last months of life, when chronic breathlessness often increases in prevalence and intensity.

No gender-related bias in COPD diagnosis and treatment in Sweden: a randomised, controlled, case-based trial.

INTRODUCTION: COPD is a major cause of morbidity and mortality. The prevalence, morbidity and mortality of COPD among females have increased. Previous studies indicate a possible gender bias in the diagnosis and management of COPD. The present study aims to determine if there is gender bias in the management of COPD in Sweden. METHODS: This was a double-blind, randomised (1:1), controlled, parallel-group, web-based trial using the hypothetical case scenario of a former smoker (40 pack-years and quit smoking 3 years ago) who was male or female. The participants were blind to the randomisation and the purpose of the trial. The case progressively revealed more information with associated questions on how the physician would manage the patient. Study participants chose from a list of tests and treatments at each step of the case scenario. RESULTS: In total, 134 physicians were randomised to a male (n=62) or a female (n=72) case. There was no difference in initial diagnosis (61 (98%) male cases and 70 (97%) female cases diagnosed with COPD) and planned diagnostic procedures between the male and female cases. Spirometry was chosen by all the physicians as one of the requested diagnostic tests. The management of the hypothetical COPD case did not differ by sex of the responding physician. CONCLUSION: In Sweden, diagnosis and management of a hypothetical patient with COPD did not differ by the gender of the patient or physician.

Relating Experienced To Recalled breathlessness Observational (RETRO) study: a prospective study using a mobile phone application.

Background: Breathlessness, the subjective sensation of breathing discomfort, is common and appears in the daily life of people with cardiorespiratory diseases. Physicians often rely on patient's history based on symptom recall. The relation between recalled and experienced breathlessness is still poorly understood. This paper presents the protocol for a study primarily aimed at evaluating the relationship between experienced breathlessness and (1) recalled breathlessness and (2) predicted future breathlessness. Methods: A mobile phone application will be used to collect data during daily life. Medically stable participants, ≥18 years of age with mean daily breathlessness of Numerical Rating Scale (NRS) 3/10 and able to use a mobile phone with internet will rate their breathlessness intensity on a 0-10 NRS prompted the user several times daily for 1 week. Participants will recall their breathlessness each day and week. Multivariable random effects regression models will be used for statistical analyses. Results: Results of the study will be submitted for publication in peer-reviewed journals and presented at relevant conferences. Discussion: This protocol describes a study aimed at investigating previously unknown areas of the experience and recall of breathlessness using a new method of data collection. Registration details: Prospectively registered with ClinicalTrials.gov (Nr: NCT03468205). Ethics and dissemination: The study has received ethical approval from the Regional Ethical Review Board Lund (DNr 2017/149). After a general study information including that participation is entirely voluntary, participants will answer the eligibility criteria and be asked to consent to participate before entering the study questions. Written informed consent to participate will be obtained for participants in the clinical sub-cohort. Participation can be discontinued at the discretion of the participant in which case no further data will be collected.

REgistry-based randomized controlled trial of treatment and Duration and mortality in long-term OXygen therapy (REDOX) study protocol.

OBJECTIVE: Long-term oxygen therapy (LTOT) during 15 h/day or more prolongs survival in patients with chronic obstructive pulmonary disease (COPD) and severe hypoxemia. No randomized controlled trial has evaluated the net effects (benefits or harms) from LTOT 24 h/day compared with 15 h/day or the effect in conditions other than COPD. We describe a multicenter, national, phase IV, non-superiority, registry-based, randomized controlled trial (R-RCT) of LTOT prescribed 24 h/day compared with 15 h/day. The primary endpoint is all-cause-mortality at 1 year. Secondary endpoints include cause-specific mortality, hospitalizations, health-related quality of life, symptoms, and outcomes in interstitial lung disease. METHODS/DESIGN: Patients qualifying for LTOT are randomized to LTOT 24 h/day versus 15 h/day during 12 months using the Swedish Register for Respiratory Failure (Swedevox). Planned sample size in this pragmatic study is 2126 randomized patients. Clinical follow-up and concurrent treatments are according to routine clinical practice. Mortality, hospitalizations, and incident diseases are assessed using national Swedish registries with expected complete follow-up. Patient-reported outcomes are assessed using postal questionnaire at 3 and 12 months. DISCUSSION: The R-RCT approach combines the advantages of a prospective randomized trial and large clinical national registries for enrollment, allocation, and data collection, with the aim of improving the evidence-based use of LTOT. TRIAL REGISTRATION: Clinical Trial registered with www.clinicaltrials.gov , Title: REgistry-based Treatment Duration and Mortality in Long-term OXygen Therapy (REDOX); ID: NCT03441204.

Daily duration of long-term oxygen therapy and risk of hospitalization in oxygen-dependent COPD patients.

Introduction: Long-term oxygen therapy (LTOT) improves survival and may reduce hospital admissions in patients with chronic obstructive pulmonary disease (COPD) and severe hypoxemia, but the impact of daily duration of LTOT on hospitalization rate is unknown. We aimed to estimate the association between the daily duration of LTOT (24 vs 15 h/d) and hospital admissions in patients with LTOT due to COPD. Materials and methods: A population-based, cohort study included patients who started LTOT due to COPD between October 1, 2005 and June 30, 2009 in the Swedish national register for respiratory failure (Swedevox). Time to first hospitalization from all causes and from respiratory or nonrespiratory disease, using the National Patient Registry, was analyzed using Fine-Gray regression, adjusting for potential confounders. Results: A total of 2,249 patients with COPD (59% women) were included. LTOT 24 h/d was prescribed to 539 (24%) and LTOT 15-16 h/d to 1,231 (55%) patients. During a median follow-up of 1.1 years (interquartile range, 0.6-2.1 years), 1,702 (76%) patients were hospitalized. No patient was lost to follow-up. The adjusted rate of all-cause hospitalization was similar between LTOT 24 and 15-16 h/d (subdistribution hazard ratio [SHR] 0.96; [95% CI] 0.84-1.08), as was cause-specific hospitalizations analyzed for respiratory disease (SHR: 1.00; 95% CI: 0.86-1.17) and nonrespiratory disease (SHR: 0.92; 95% CI: 0.75-1.14). Conclusion: LTOT prescribed for 24 h/d was not associated with decreased hospitalization rates compared with LTOT for 15-16 h/d in patients with oxygen-dependent COPD. The results should be validated in a randomized controlled trial.

The burden of chronic breathlessness across the population.

PURPOSE OF REVIEW: Chronic breathlessness is a common and distressing symptom globally. It is associated with major adverse health outcomes. This review provides an overview of new evidence about the prevalence of chronic breathlessness in the population. RECENT FINDINGS: A literature search was conducted using MEDLINE database including studies on prevalence of chronic breathlessness and its impact on the community published between 2016 and 2018. Identified studies were divided into four themes: breathlessness in relation to sex, BMI, quality of life and age (the elderly). In the general population, breathlessness was twice as common in women as in men related to their smaller absolute lung volumes. Obesity was to be found an independent risk factor for chronic breathlessness. A strong association between chronic breathlessness and poor physical and mental health-related quality of life was found across all adult age groups. Among elderly people, breathlessness predicted activity of daily living decline over 5 years. SUMMARY: Interesting large population-based studies published recently have shed light on the association between chronic breathlessness and sex, obesity, quality of life and increasing age.

A nationwide structure for valid long-term oxygen therapy: 29-year prospective data in Sweden.

BACKGROUND: Long-term oxygen therapy (LTOT) improves prognosis in COPD with severe hypoxemia. However, adherence to criteria for eligibility and quality of LTOT is often insufficient and varies between countries. The aim of this study was to evaluate a national structure for prescription and management of LTOT over three decades in Sweden. METHODS: The study was a prospective, population-based study of 23,909 patients on LTOT from 1987 to 2015 in the Swedish National Register of Respiratory Failure (Swedevox). We assessed the prevalence, incidence, and structure of LTOT; completeness of registration in Swedevox; and validity of prescription and management of LTOT in Sweden according to seven published quality indicators. RESULTS: LTOT was prescribed by 48 respiratory or medicine units and managed mainly by specialized oxygen nurses. Swedevox had a stable completeness of 85% of patients starting LTOT since 1987. The national incidence of LTOT increased from 3.9 to 14.7/100,000 inhabitants over the time period. In 2015, 2,596 patients had ongoing therapeutic LTOT in the registry, a national prevalence of 31.6/100,000. Adherence to prescription recommendations and fulfillment of quality criteria was stable or improved over time. Of patients starting LTOT in 2015, 88% had severe hypoxemia (partial pressure of arterial oxygen [PaO2] <7.4 kPa) and 97% had any degree of hypoxemia (PaO2 <8.0 kPa); 98% were prescribed oxygen ≥15 hours/day or more; 76% had both stationary and mobile oxygen equipment; 75% had a mean PaO2 >8.0 kPa breathing oxygen; and 98% were non-smokers. CONCLUSION: We present a structure for prescription, management, and follow-up of LTOT. The national registry effectively monitored adherence to prescription recommendations and most likely contributed to improved quality of care.

Palliative oxygen for chronic breathlessness: what new evidence?

PURPOSE OF REVIEW: Supplemental oxygen improves survival in patients with chronic obstructive pulmonary disease (COPD) and severe hypoxaemia, but the effect of oxygen therapy in mild or moderate hypoxaemia to reduce symptomatic chronic breathlessness remains unclear. This review provides an overview of recent evidence about the role of oxygen therapy for the relief of chronic breathlessness in advanced illness. RECENT FINDINGS: In COPD, a recent Cochrane review strengthens earlier findings regarding the positive effect of supplemental oxygen compared with air during exercise test in the training setting. The novel analysis of effect of oxygen therapy on quality of life (QoL) showed no clear effect. Short-burst oxygen therapy given before exercise had no effect and should not be used. SUMMARY: Supplemental oxygen during exercise has been shown to reduce breathlessness in patients with COPD who have no or mild hypoxaemia, but it is not clear whether the reduction in breathlessness shown in the laboratory setting translates into a clinically important benefit. Further studies are needed to establish this.

Oxygen for breathlessness in patients with chronic obstructive pulmonary disease who do not qualify for home oxygen therapy.

BACKGROUND: Breathlessness is a cardinal symptom of chronic obstructive pulmonary disease (COPD). Long-term oxygen therapy (LTOT) is given to improve survival time in people with COPD and severe chronic hypoxaemia at rest. The efficacy of oxygen therapy for breathlessness and health-related quality of life (HRQOL) in people with COPD and mild or no hypoxaemia who do not meet the criteria for LTOT has not been established. OBJECTIVES: To determine the efficacy of oxygen versus air in mildly hypoxaemic or non-hypoxaemic patients with COPD in terms of (1) breathlessness; (2) HRQOL; (3) patient preference whether to continue therapy; and (4) oxygen-related adverse events. SEARCH METHODS: We searched the Cochrane Airways Group Register, the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE and Embase, to 12 July 2016, for randomised controlled trials (RCTs). We handsearched the reference lists of included articles. SELECTION CRITERIA: We included RCTs of the effects of non-invasive oxygen versus air on breathlessness, HRQOL or patient preference to continue therapy among people with COPD and mild or no hypoxaemia (partial pressure of oxygen (PaO2) > 7.3 kPa) who were not already receiving LTOT. Two review authors independently assessed articles for inclusion in the review. DATA COLLECTION AND ANALYSIS: Two review authors independently collected and analysed data. We assessed risk of bias by using the Cochrane 'Risk of bias tool'. We pooled effects recorded on different scales as standardised mean differences (SMDs) with 95% confidence intervals (CIs) using random-effects models. Lower SMDs indicated decreased breathlessness and reduced HRQOL. We performed subanalyses and sensitivity analyses and assessed the quality of evidence according to the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) approach. MAIN RESULTS: Compared with the previous review, which was published in 2011, we included 14 additional studies (493 participants), excluded one study and included data for meta-analysis of HRQOL. In total, we included in this review 44 studies including 1195 participants, and we included 33 of these (901 participants)in the meta-analysis.We found that breathlessness during exercise or daily activities was reduced by oxygen compared with air (32 studies; 865 participants; SMD -0.34, 95% CI -0.48 to -0.21; I2 = 37%; low-quality evidence). This translates to a decrease in breathlessness of about 0.7 points on a 0 to 10 numerical rating scale. In contrast, we found no effect of short-burst oxygen given before exercise (four studies; 90 participants; SMD 0.01, 95% CI -0.26 to 0.28; I2 = 0%; low-quality evidence). Oxygen reduced breathlessness measured during exercise tests (25 studies; 442 participants; SMD -0.34, 95% CI -0.46 to -0.22; I2 = 29%; moderate-quality evidence), whereas evidence of an effect on breathlessness measured in daily life was limited (two studies; 274 participants; SMD -0.13, 95% CI, -0.37 to 0.11; I2 = 0%; low-quality evidence).Oxygen did not clearly affect HRQOL (five studies; 267 participants; SMD 0.10, 95% CI -0.06 to 0.26; I2 = 0%; low-quality evidence). Patient preference and adverse events could not be analysed owing to insufficient data. AUTHORS' CONCLUSIONS: We are moderately confident that oxygen can relieve breathlessness when given during exercise to mildly hypoxaemic and non-hypoxaemic people with chronic obstructive pulmonary disease who would not otherwise qualify for home oxygen therapy. Most evidence pertains to acute effects during exercise tests, and no evidence indicates that oxygen decreases breathlessness in the daily life setting. Findings show that oxygen does not affect health-related quality of life.

Prescription of opioids for breathlessness in end-stage COPD: a national population-based study.

BACKGROUND: Low-dose opioids can relieve breathlessness but may be underused in late-stage COPD due to fear of complications, contributing to poor symptom control. OBJECTIVES: We aimed to study the period prevalence and indications of opioids actually prescribed in people with end-stage COPD. METHODS: The study was a longitudinal, population-based study of patients starting long-term oxygen therapy (LTOT) for COPD between October 1, 2005 and June 30, 2009 in Sweden. A random sample (n=2,000) of their dispensed opioid prescriptions was obtained from the national Prescribed Drugs Register from 91 days before starting LTOT until the first of LTOT withdrawal, death, or study end (December 31, 2009). We analyzed medication type, dispensed quantity, date of dispensing, and indications categorized as pain, breathlessness, other, or unknown. RESULTS: In total, 2,249 COPD patients (59% women) were included. During a median follow-up of 1.1 (interquartile range 0.6-2.0) years, 1,034 patients (46%) were dispensed ≥1 opioid prescription (N=13,722 prescriptions). The most frequently prescribed opioids were tramadol (23%), oxycodone (23%), morphine (16%), and codeine (16%). Average dispensed quantity was 9.3 (interquartile range 3.7-16.7) defined daily doses per prescription. In the random sample, the most commonly stated indication was pain (97%), with only 2% for breathlessness and 1% for other reasons. CONCLUSION: Despite evidence that supported the use of opioids for the relief of breathlessness predating this study, opioids are rarely prescribed to relieve breathlessness in oxygen-dependent COPD, potentially contributing to less-than-optimal symptom control. This study creates a baseline against which to compare future changes in morphine prescribing in this setting.

Long-Term Oxygen Therapy 24 vs 15 h/day and Mortality in Chronic Obstructive Pulmonary Disease.

Long-term oxygen therapy (LTOT) ≥ 15 h/day improves survival in hypoxemic chronic obstructive pulmonary disease (COPD). LTOT 24 h/day is often recommended but may pose an unnecessary burden with no clear survival benefit compared with LTOT 15 h/day. The aim was to test the hypothesis that LTOT 24 h/day decreases all-cause, respiratory, and cardiovascular mortality compared to LTOT 15 h/day in hypoxemic COPD. This was a prospective, observational, population-based study of COPD patients starting LTOT between October 1, 2005 and June 30, 2009 in Sweden. Overall and cause-specific mortality was analyzed using Cox and Fine-Gray regression, controlling for age, sex, prescribed oxygen dose, PaO2 (air), PaCO2 (air), Forced Expiratory Volume in one second (FEV1), WHO performance status, body mass index, comorbidity, and oral glucocorticoids. A total of 2,249 included patients were included with a median follow-up of 1.1 years (interquartile range, 0.6-2.1). 1,129 (50%) patients died and no patient was lost to follow-up. Higher LTOT duration analyzed as a continuous variable was not associated with any change in mortality rate (hazard ratio [HR] 1.00; (95% confidence interval [CI], 0.98 to 1.02) per 1 h/day increase above 15 h/day. LTOT exactly 24 h/day was prescribed in 539 (24%) patients and LTOT 15-16 h/day in 1,231 (55%) patients. Mortality was similar between the groups for all-cause, respiratory and cardiovascular mortality. In hypoxemic COPD, LTOT 24 h/day was not associated with a survival benefit compared with treatment 15-16 h/day. A design for a registry-based randomized trial (R-RCT) is proposed.

Prevalence of Sudden Death in Palliative Care: Data From the Australian Palliative Care Outcomes Collaboration.

CONTEXT: Advanced, life-limiting illnesses are likely to have a predictable functional decline through a terminal phase to death, but some patients may also die suddenly. To date, empirical evidence characterizing "sudden death" in hospice/palliative care is lacking. OBJECTIVES: The aim of this study was to determine prevalence and clinicodemographic predictors of sudden death in hospice/palliative care. METHODS: This is a longitudinal consecutive cohort study of prospectively collected national data in 104 specialist palliative care services from the Australian Palliative Care Outcomes Collaboration. Patients who died between July 1, 2013, and June 30, 2014, with one or more measurement of Australian-modified Karnofsky Performance Status (AKPS) in the last 30 days of life were included. "Sudden death" was defined as a lowest AKPS score of 50 or more in the last seven days of life and excluded anyone with "terminal phase" as their last phase before death. Predictors were defined using logistic regression. RESULTS: In total, 13,966 patients were included, mean age 73.6 (SD 13.6) years, 46% women, and 77% had cancer. During the seven days before death, there were 20,992 AKPS measurements; median 1 (interquartile range 1-2) per patient. Four percent of deaths (one of 25) were sudden, predicted independently by having lung cancer (odds ratio [OR] 2.64), cardiovascular disease (OR 1.94), other cancers (OR 1.63), being male (OR 1.23), younger, worse fatigue, and worse breathlessness. Sudden death was associated with higher rates of death at home (OR 3.2; 95% CI 2.9 to 3.6). CONCLUSION: This study quantifies rates of sudden death in hospice/palliative care and has implications for conversations about prognosis between clinicians, patients, and their families.

End-of-life care in oxygen-dependent ILD compared with lung cancer: a national population-based study.

RATIONALE: Advanced fibrosing interstitial lung disease (ILD) is often progressive and associated with a high burden of symptoms and poor prognosis. Little is known about the symptom prevalence and access to palliative care services at end of life (EOL). OBJECTIVES: Compare prevalence of symptoms and palliative treatments between patients dying with oxygen-dependent ILD and patients dying of lung cancer. METHODS: Nationwide registry-based cohort study of patients with oxygen-dependent ILD and patients with lung cancer who died between 1 January 2011 and 14 October 2013. Prevalence of symptoms and treatments during the last seven days of life were compared using data in Swedish Registry of Palliative Care. MEASUREMENTS AND MAIN RESULTS: 285 patients with ILD and 10 822 with lung cancer were included. In ILD, death was more likely to be 'unexpected' (15% vs 4%), less likely to occur in a palliative care setting (17% vs 40%) and EOL discussions with the patients (41% vs 59%) were less common than in lung cancer. Patients with ILD suffered more from breathlessness (75% vs 42%) while patients with lung cancer had more pain (51% vs 73%) (p<0.005 for all comparisons). Patients with ILD had more unrelieved breathlessness, pain and anxiety. The survival time from initiation of oxygen therapy in ILD was a median 8.4 months (IQR 3.4-19.2 months). CONCLUSIONS: Patients with ILD receive poorer access to specialist EOL care services and experience more breathlessness than patients with lung cancer. This study highlights the need of better EOL care in oxygen-dependent ILD.