Article Figures & Data
Figures
- Figure 1.
US states (blue) in which sites have been identified for inclusion in Advancing the Patient Experience in chronic obstructive pulmonary disease.
- Figure 2.
Operational overview of the Advancing the Patient Experience (APEX) in chronic obstructive pulmonary disease (COPD) initiative. Abbreviation: EHR, electronic health record.
- Figure 3.
Key strengths of the Advancing the Patient Experience (APEX) in chronic obstructive pulmonary disease (COPD) initiative. Abbreviations: EHR, electronic health record; PoC, point of care; PRI/PRO, patient reported information/patient reported outcomes.
Tables
Feature Delivered by APEX COPD registry Social network of patients and families encouraged to engage in the patient’s healthcare and supported by tools that enable them to track their health outcomes and support self-care The APEX COPD registry provides rapid feedback of data to both patients and physicians to encourage engagement, support shared decision making, and facilitate self-management by enabling patients to track their disease over time. Collaborative network of clinical teams that can provide care and who engage in a system providing longitudinal and comparative data The APEX COPD registry comprises a collaborative network of primary care physicians, nurses, physician assistants, specialists, research scientists, and database experts to collect longitudinal, comparative, clinically relevant, and individual-level data. Sharing of power and responsibility among patients, clinicians, and scientists for designing, governing and evaluating services to improve and research The APEX COPD registry is overseen by 5 governing bodies to ensure collection of clinically relevant data, and ethically-sound research. Digital collection and use of both clinical and patient-reported outcomes to guide care and as a basis for improvement, research, and public health policy The APEX COPD registry collects data digitally from EHR and from patients in the form of on-line questionnaires and during the office visit. Demonstration of measurable improvement in individual and public health outcomes through improved adherence to current evidence and rigorous trials of new approaches The APEX COPD registry will track all relevant variables longitudinally to assess improvement in individual and public health outcomes. Dissemination and translation of ideas and findings through publication in peer-reviewed journals, presentations and meetings, and outreach to patients, clinicians, researchers, and health policy analysts The APEX COPD registry incorporates a team of communication specialists to ensure timely dissemination of research both at scientific/medical congresses and in peer-reviewed publications. APEX, Advancing the Patient Experience; COPD, chronic obstructive pulmonary disease; EHR, electronic health record.
Reproduced from Nelson EC, Dixon-Woods M, Batalden PB, et al. Patient focused registries can improve health, care, and science. 2021:354:i3319, with permission from BMJ Publishing Group Ltd.
Description Delphi consensus of core variables to capture in the APEX COPD registry Demographic and clinical baseline characteristics of COPD patients based in US primary care Variation in demographic and clinical characteristics of COPD patients managed in US primary care Treatment patterns of COPD patients managed in US primary care APEX, Advancing the Patient Experience; COPD, chronic obstructive pulmonary disease.
Improve quality of care, and primary care patient outcomes through structured COPD support and increased understanding of COPD management Understand the clinical phenotypes of COPD that predict response to or appropriateness of inhaled treatments Understand the current burden and minimize side effects of steroid exposure through use of appropriate treatments Support the development of effective and efficient diagnostic routines and therapeutic principles Assess the level of classification differences as defined by comparing clinician-diagnosed COPD at baseline against established guidelines’ diagnostic criteria Describe disease management patterns such as treatment changes over time (eg, step up, step down, and switches), as well as the reasons for changes and the effect of these changes on disease progression Assess the impact of inhaler technique, inhaler type and lung function on disease management and severity (eg, exacerbations and CAT scores) Describe factors associated with treatment choice at baseline and describe disease progression Describe risk factors (eg, age, sex, smoking, BMI, occupation, family history, presence of comorbidities, socioeconomic status, quality of care, lung function, exacerbations) associated with disease progression, PROs, and healthcare utilization Assess the occurrence of exacerbations and other conditions, including URTIs and seasonal variations Assess biomarker data and estimate their predictive value for disease diagnosis, pheno- and endo-type characterization, response to treatment and disease progression Identify patients who may be eligible for participation in future research studies APEX, Advancing the Patient Experience; BMI, body mass index; CAT, COPD assessment test; COPD, chronic obstructive pulmonary disease; PRI/PRO, patient-reported information & outcomes; URTI, upper respiratory tract infection.
Category Sub-Category Variable EHR Variables (n = 115) Demographics Height (In) Weight (lb) Biological sex Age (yrs) BMI Race Disease monitoring COPD diagnosis COPD Chronic bronchitis Emphysema AATD Differential diagnosis Asthma Respiratory infection Number pneumonia infections in past 2 years Number of other RTI in past 2 years Exacerbations* No. moderate exacerbations in past year No. severe exacerbations in past year Symptoms Wheezing Physiological measurements Predicted FEV1 (auto-calculated) FEV1 pre-bronchodilator FEV1 post-bronchodilator FEV1 (pre-bronchodilator)/Predicted FEV1 (auto-calculated) Predicted FVC (auto-calculated) FVC pre-bronchodilator FVC post-bronchodilator FVC (pre-bronchodilator)/Predicted FVC (auto-calculated) Predicted FEV1/FVC ratio (auto-calculated) FEV1/FVC pre-bronchodilator (auto-calculated) FEV1/FVC post-bronchodilator (auto-calculated) Reversibility (%) PIF Pulse oximetry (spO2, %) Full blood count Blood eosinophil count Chest Radiograph CT scan Systolic BP (mm Hg) Diastolic BP (mm Hg) 6-minute walking test (ft) GOLD categorization GOLD 1 to 4 (auto-calculated) GOLD A-D (auto-calculated) Differential diagnosis (predicting asthma) Allergy Rhinitis Nasal polyps Eczema Sinusitis Differential diagnosis (predicting heart failure) Ankle edema Echo cardiogram Elevated B-type natriuretic peptide Differential diagnosis (predicting lung cancer) Weight loss Hemoptysis Other diff. diagnosis Pneumonia Co-morbidities (cardiovascular) Angina pectoris/Heart disease/CHD Heart failure Stroke Hypertensive disease Co-morbidities (pulmonary) Lung cancer Obstructive sleep apnea Hypoxemia Co-morbidities (endocrinological) Diabetes mellitus Osteoporosis Osteoarthritis Metabolic syndrome Co-morbidities (mental) Depression Anxiety Co-morbidities (other) GERD Anemia Treatment Bronchodilators SABA LABA SAMA LAMA Steroids ICS OCS Combinations SABA/SAMA LABA/LAMA ICS/LAMA ICS/LABA ICS/LAMA/LABA Co-morbidity treatments Heart failure Diabetes Osteoporosis Asthma Other treatments Antibiotics Macrolides PDE inhibitors Methylxanthines (eg, theophylline) LTRA Diuretics Mucolytics Smoking Smoking status How many years has patient smoked? Pack years Vaccinations Influenza Pneumococcal (both) Smoking cessation Smoking cessation advice given Referral to stop-smoking clinic/advisor Nicotine replacement therapy Drug therapy (eg, bupropion) Surgery Bullectomy Lung Volume Reduction Surgery (LVRS) Lung volume reduction coil Endobronchial Valve (EBV) Lung transplant Chest wall vibration Specialist referral Palliative care Physiotherapist Occupational therapist Speech therapist Clinical psychiatrist Clinical psychologist Dietitian Exercise physiologist Chest physician Other therapies Pulmonary rehabilitation (PR) Oxygen therapy Home nebuliser Ventilatory support PRI/PRO variables (n = 34) Disease monitoring Differential diagnosis Asthma Respiratory infections No. of pneumonia infections in past 2 years No. of other RTI in past 2 years Exacerbations* No. of moderate exacerbations in past year No. of severe exacerbations in past year Health status (QoL) Modified MRC Dyspnea Scale COPD Assessment Test Risk factors Childhood respiratory infections Occupational exposure Tobacco exposure Age of onset of respiratory symptoms yrs) Family history of COPD Co-morbidities (mental) Depression Anxiety Treatment Inhaler management Spacer with MDI Inhaler technique training Inhaler use/adherence Test of Adherence to Inhalers (TAI) questionnaire Inhaler satisfaction Treatment side effects Oral Physiological Smoking Smoking status Date ceased smoking (if applicable) How many cigarettes smoked per day? How many years has patient smoked? Uses e-cigarette? Vaccinations Influenza Smoking cessation Desire to quit smoking Tried to quit in the past Smoking cessation advice given Education & self- management COPD education COPD self-management plan Patient’s use of COPD self-management plan Other therapies Pulmonary rehabilitation PoC Variables (n = 5) Disease monitoring Exacerbations* No. of moderate exacerbations in past year No. severe exacerbations in past year Physiological measures FEV1 post-bronchodilator FVC post-bronchodilator Treatment Inhaler management Inhaler technique assessment Modified from Edwards et al, 20201.
↵* COPD exacerbations were defined as an explicit exacerbation (coded in a patient EMR), OR a COPD code (which included COPD, chronic bronchitis and emphysema) alongside an antibiotic and/or OCS prescription, OR an acute bronchitis, LRTI, influenza, asthma, bronchiectasis or general lower respiratory condition code alongside an OCS and/or antibiotic prescription.
AATD, Alpha-1 antitrypsin deficiency; Atb, antibiotic; BMI, body mass index; BP, blood pressure; CHD, coronary heart disease; COPD, Chronic Obstructive Pulmonary Disease; FEV1, forced expiratory volume in one second; FVC, forced vital capacity; GERD, gastroesophageal reflux disease; GOLD, Global initiative for chronic Obstructive Lung Disease; ICS, inhaled corticosteroid; LABA, long-acting β2-agoinist; LAMA, long-acting muscarinic antagonist; LTRA, leukotriene receptor antagonist; MDI, metered dose inhaler; MRC, Medical Research Council; OCS, oral corticosteroid; PDE, phosphodiesterase; PIF, peak inspiratory flow rate; RTI, respiratory tract infection; SABA, short-acting β2-agonist; SAMA, short-acting muscarinic antagonist; CT scan, computerized tomography scan.
David B. Price, FRCGP Research, primary care UK/Singapore Barbara P. Yawn, MD, MSc, MSPH, FAAFP Research, primary care USA Janwillem W.H. Kocks, MD, PhD Research, primary care Netherlands Wilson D. Pace, MD Research, primary care USA Ku-Lang Chang, MD, FAAFP, MRO Primary care USA Chester Fox, MD, FAAFP Primary care USA Barry Make, MD Specialist USA Alan Kaplan, MD, CCFP(EM), FCFP Primary care, specialist Canada Neil Skolnik, MD Primary care USA MeiLan K. Han, MD, MSc Specialist USA Alvaro Aranda, MD Specialist Puerto Rico Gokul Gopalan, MD, MPH Research USA Asif Shaikh, MD, MPH Research USA Cathy D. Mahle, PhD, MBA Research USA APEX, Advancing the Patient Experience; COPD, chronic obstructive pulmonary disease.
