Table 4 Overview of the outcome measures in the included studies
Author, year, design | Patient reported outcome measures | Lung and respiratory muscle function tests | Dyspnoea and exercise tolerance | Sleep quality | Blood tests | Hospitalisation, intubation, and survival rate | Others |
|---|---|---|---|---|---|---|---|
Randomized controlled trial (RCT) / pre-post design: | |||||||
Aliannejad et al. (2015) [69] Pre/post | Health-related quality of life (HRQOL): St George`s Respiratory Questionnaire (SGRQ) | Spirometry Diffusion capacity Oxygen saturation (during test) | VAS scale Borg dyspnoea scales (resting dyspnoea) 6-min walking test (6MWT) | Pittsburgh Sleep Quality Questionnaire (Persian) | Arterial blood gases | Number and location (intensive care unit (ICU) stays, intubations), deaths | Treatment compliance (time on non-invasive ventilation (NIV)), body mass index (BMI) |
Borghi-Silva et al. (2010) [72] RCT | HRQOL: SGRQ | Spirometry (FEV, vital capacity) Maximum inspiratory and expiratory pressure | 6MWT, Cardiopulmonary Exercise testing (treadmill) Isokinetic knee extension strength and leg fatigue test | Not reported (NR) | Lactate (during test) | NR | Oxygen saturation (SaO2), blood pressure, heart rate (during test) |
Casanova et al. (2000) [70] RCT | NR | Spirometry Residual volume Functional residual capacity and total lung capacity | Gas exchange, The Medical Research Council and Borg scales, (3 + 6 months) | Nocturnal respiratory polysomnography | Haematocrit | Hospital admissions (primary), Intubations and mortality (3, 6 and 12 months) | Echocardiogram and cardiac function (cardiologist), neuro-psychological performance test (by psychiatrist) |
Funk et al., (2011) [58] RCT | NR | Spirometry Maximum inspiratory pressure | 6MWT Exercise PaCo2 (bicycle-test) | Polysomnography (Without NIV) | Arterial blood gases | Time to clinical worsening (escalation of mechanical ventilation) (primary) | NR |
Gloeckl et al. (2019) [43] RCT (cross-over) | NR | Muscle oxygen availability (spectroscopy) Transcutaneously measured partial pressure of carbon dioxide (TcPCO2) | Levels of dyspnoea and leg fatigue at rest (a modified Borg Scale) | NR | NR | NR | SaO2, Heart rate |
Girault et al., (1997) [71] RCT | Respiratory comfort (level of dyspnoea, well-being) (VAS scale 0–100) | Inspiratory work of breathing volume, Diaphragmatic activity | NR | NR | Blood gas tensions | NR | SaO2 |
Jones et al., (1998) [50] Follow up (pre/ post) | Patient satisfaction (self-developed questionnaire) | Spirometric parameters | NR | NR | Arterial blood gas tensions | Hospital admissions, use of general practitioner resources | Survival, BMI, compliance with NIV |
McEvoy et al., 2009 [63] RCT | HRQOL: SF 36 & SGRQ Profile of mood states (POMS) | Spirometry | NR | Polysomnography | Arterial blood gases | Duration of hospital admittance, survival (primary) | NR |
Volpato et al. (2022) [60] RCT | The Fatigue Severity Scale, HRQOL: EuroQol, the Hospital Anxiety and Depression Scale (HADS), the Brief Illness Perception Questionnaire, the Questionnaire on Ad-hesion to Pharma-cological and Dietetic Therapy, the Rosenberg Self-esteem Scale | Spirometry (FEV1, FVC,FEV1/FVC) | NR | NR | Arterial blood gases | NR | BMI, cognitive functions: the Addenbrooke’s Cognitive Examination Revised, the Mini-Mental State Examination scale and the Confusion Assess-ment Method |
Author, year, design | Patient reported outcome measures | Lung and respiratory muscle function tests | Dyspnoea and exercise tolerance | Sleep quality | Blood tests | Hospitalisation, intubation, and survival rate | Others |
Cross sectional / survey design | |||||||
Budweiser et al. (2005) [53] Retrospective explorative study | NR | Inspiratory capa-city | NR | NR | Diurnal and nocturnal blood gas | NR | Adverse effects or problems |
Carlucci et al., (2016) [59] Prospective | The Centre for epidemiologic studies of Depression Scale, (CES-D) HRQOL: the Mauger Respiratory Failure questionnaire reduced form (MRF-26) | NR | NR | NR | NR | NR | NR |
Duenk et al. (2017) [67] Retrospective medical record review | NR | Global Initiative for Chronic Obstructive Lung Disease (GOLD) stage and smoking history | NR | NR | NR | Readmission within 8 weeks Date of first readmission for AECOPD and date of death | NR |
Fahim & Kastelik (2014) [47] Prospective observational study | COPD palliative and prognosis questionnaire (study specific), Leicester cough questionnaire (quality of life) | NR | Borg dyspnoea scale, Medical Research council (MRC) dyspnoea scale | NR | NR | NR | NR |
Fu et al. (2018) [40] Retrospective observational | NR | Pulmonary function test results (FEV1/FVC ratio and FEV1%) | Heart function two-dimensional echocardiography | NR | NR | Medical utilization (number of emergency room visits, and hospitalizations) and any cardiac pulmonary resuscitation within 1 year prior to death. Number of days from each patient’s signed DNR consent until death and the number of days from physician confirmed terminal status to patient death | Additional information obtained during the last (terminal) hospital admission included whether admitted from the ER, died on the service of a pulmonologist, died in the ICU, or experienced mechanical ventilation (such as invasive and non-invasive mechanical ventilation) |
Gaber et al. (2004) [48] Survey | HRQOL: Breathing problem-based quality-of-life questionnaire (BP-QoL) | NR | NR | NR | NR | NR | Questions on treatment preferences in hypothetical scenario |
Gäbler et al. (2019) [41] Cross sectional | NR | NR | NR | NR | NR | NR | A case vignette geriatric end-stage COPD patient with acute respiratory failure, additional questions on ethical considerations and their impact on decision making |
Gershon et al. (2018) [42] Repeated Cross sectional | NR | NR | NR | NR | NR | Rates of formal palliative care service use (hospital, outpatient, palliative care unit/hospice setting) | Opioid use, long-term oxygen therapy (LTOT) |
Sinuff et al. (2008) [68] Multi-center Survey | NR | NR | NR | NR | NR | NR | Developed an instrument to assess the attitudes of intensivists, pulmonologists, and respiratory therapists toward the use of NIV for patients with acute respiratory failure near or at the end of life |
Windisch et al. (2005) [54] Retrospective study | NR | Body plethysmography, inspiratory mouth occlusion pressure | NR | NR | Arterial blood gas tests | Duration of hospital stay, time of death | NR |
Author, year, design | Patient reported outcome measures | Lung and respiratory muscle function tests | Dyspnoea and exercise tolerance | Sleep quality | Blood tests | Hospitalisation, intubation, and survival rate | Others |
Cohort studies | |||||||
Budweiser et al. (2006) [55] Prospective cohort | NR | Whole-body plethysmography, Inspiratory mouth-occlusion pressure and maximum static inspiratory mouth pressure | NR | NR | Blood gas | NR | BMI |
Budweiser et al. (2007) [52] Prospective cohort | NR | Spirometry body plethysmography | Exacerbation control (increased dyspnoea, cough and sputum) | NR | Blood gas (earlobe) | All-cause mortality | NR |
Elliott et al. (1992) [51] Prospective Cohort | Compliance, symptoms of hypercapnia, side effects with mask, satisfaction (study specific) | Spirometry, Pulmonary func-tion test results (FEV1, FVC%, Total Lung Capacity (TLC)%) | NR | NR | Blood gas | NR | SaO2, BMI |
Faes et al. (2018) [64] Retrospective, full population analysis | NR | NR | NR | NR | NR | Describe resource use in the last six months of life (i.e. emergency room visits, hospitalization, intensive care unit medical equipment and palliative care) | NR |
Kuo et al. (2019) [45] Retrospective cohort study | NR | NR | NR | NR | NR | Numbers and costs of out-patient visits, hospitalizations, emergency room visits, intensive care unit admissions, and palliative care + haemodialysis day | COPD medications during a year |