COPD Patient Empowerment Scientific Evidence is the second phase of our COPD Patient Empowerment project, which started with the systematic review and adaptation of the international medical guidelines for patients to understand them easier.
We can affirm that quality of life in COPD, from the patient’s perspective, is:
- Maintaining the maximum possible functionality and autonomy for activities of daily living.
- Expanding capacity for self-care, based on knowledge of their disease and their empowerment.
- Maintaining respiratory health.
- Having access to respiratory rehabilitation.
Strategies have traditionally been aimed at:
- Reducing the frequency, duration, and intensity of exacerbations.
- Adjustment, personalization, and monitoring of medication response to ensure adherence to treatment.
- Reduction of rescue medications.
- Reduction of health care demands.
- Education
COPD Patient Empowerment: Scientific Evidence and Quality of Life in COPD
Why Scientific Evidence is important for the patient
Compiling scientific evidence is one of the fundamental tools of evidence-based medicine and the development of public health policies. This work incorporates evidence to guide the decisions of COPD patients, family members, caregivers, and the public and serves as a foundation for the formulation of public health policies in respiratory health.
The currently available languages for the PDF and infographics are English and Spanish. You can change between those 2 using the language menu on our website. If you want this asset translated into your language, GAAPP will gladly do it. Contact us at info@gaapp.org.
Methodology
With an innovative approach, this work aims to support decision-making in respiratory health, based on contrasting evidence and of the reality of daily living for the COPD patient. We have adopted the systematic literature review methodology proposed by Muka [1].
Read more about the methodology on this link.
This project aims to support decision-making in respiratory health based on scientific evidence and the daily life of COPD patients. Our multi-stakeholder group has reviewed, selected, and synthesized 17 publications and organized them into 12 main topics. Navigate the issues below and download each asset in PDF for your convenience and for sharing it.
COPD patient Charter.
- Principle 1: I deserve a timely diagnosis and evaluation of my COPD.
- Principle 2: I deserve to understand what it means to have COPD and how the disease can progress.
- Principle 3: I deserve access to the best available, personalized, evidence-based information. I need treatment to ensure that I will live as well as possible, for as long as possible.
- Principle 4: I deserve an urgent review of my current treatment plan, if I have an exacerbation, to prevent future flare-ups and disease progression.
- Principle 5: I deserve access to a respiratory specialist when needed (whether provided in the hospital or in the community), to manage my COPD, regardless of where I reside.
- Principle 6: I deserve to live as well as possible, even if I have COPD without being singled out or feeling guilty.
Key recommendations to meet the needs of the COPD patient.
- COPD patient health literacy/education: risk factors, types of disease, associated symptoms, the implications of living with COPD, warning signs, and how to participate in self-care.
- Access to tools necessary for diagnosis
- Personalized, proactive management that seeks to maintain their functionality and improve their quality of life.
- Identification and intervention of factors associated with exacerbations
- Early diagnosis and treatment of exacerbations, aimed at preventing new episodes.
- Access to specialized care, supported by the use of digital technologies and telemedicine.
Download this asset:
Reference:
- Hurst JR, Winders T, Worth H, Bhutani M, Gruffydd-Jones K, Stolz D, Dransfield MT. A Patient Charter for Chronic Obstructive Pulmonary Disease. Adv Ther. 2021 Jan;38(1):11-23. doi: 10.1007/s12325-020-01577-7. Epub 2020 Nov 27. PMID: 33245531; PMCID: PMC7854443.
- Accurate diagnosis:
- Essential Criterion 1A: Individuals should have access to spirometry performed by health professionals trained in the performance and interpretation of pulmonary function tests to facilitate an accurate diagnosis of COPD (both in hospitals and Primary Care Centers).
- Essential Criterion 1B: All persons over 40 years of age with known risk factors for COPD, such as smoking, environmental and occupational exposures to organic and inorganic dust, chemical agents, and vapors identified through case-finding approaches [ 51 ], and those presenting with respiratory symptoms, should have access to diagnostic pulmonary function tests, imaging tests as needed for lung cancer screening, and biomarker assessments.
- Adequate patient and caregiver education:
- Essential criterion 2: Patients should receive personalized education appropriate to their individual needs and capabilities in terms of risk factors, diagnosis, treatment, and follow-up, and be involved in the decision-making process and their self-care plans.
- Access to medical and non-medical therapies aligned with the latest evidence-based recommendations and appropriate management by a respiratory specialist, when needed
- Essential Criterion 3A Patients and their caregivers – where appropriate – should have access to timely medical assessments, diagnoses, and interventions, whether in institutional or community settings and health care systems should have established a reliable referral system to transition patients from primary care to specialist practitioner care and hospitalization, when necessary.
- Essential Criterion 3B Patients should have access to the most cost-effective and optimal evidence-based pharmacologic and nonpharmacologic treatments informed by clinical guidelines.
- Effective management of acute exacerbations:
- Essential Criterion 4 After a COPD exacerbation, patients should be reviewed within 2 weeks after initiation of treatment of a non-hospitalized exacerbation or after an exacerbation-related hospital discharge to ensure optimization of treatment.
- Regular follow-up with the patient and caregiver to review an individualized care plan:
- Essential Criteria 5 Regardless of the status of their COPD, all patients should have their COPD checked annually by a specialized physician.
Download this asset:
Reference:
- Bhutani M, Price DB, Winders TA, Worth H, Gruffydd-Jones K, Tal-Singer R, Correia-de-Sousa J, Dransfield MT, Peché R, Stolz D, Hurst JR. Quality Standard Position Statements for Health System Policy Changes in Diagnosis and Management of COPD: A Global Perspective. Adv Ther. 2022 Jun;39(6):2302-2322. doi: 10.1007/s12325-022-02137-x. Epub 2022 Apr 28. PMID: 35482251; PMCID: PMC9047462.
- Environmental and host factors that can alter normal lung development:
- During pregnancy, it may increase the risk of wheezing, asthma, airway inflammation and bronchial hyperresponsiveness:
- Maternal smoking
- Environmental contamination
- Obesity and maternal diet (excessive intake of folic acid and free sugars)
- Amniotic fluid, quantity and characteristics (presence of proinflammatory mediators)
- Childhood and adolescence
- Prematurity and low birth weight
- Childhood asthma
- Repeated respiratory infections
- Passive/active smoking
- Nutrition and childhood obesity
- Environmental contamination
- Young adult
- Smoking
- Biomass exposure
- Environmental contamination
- Occupational exposure
- During pregnancy, it may increase the risk of wheezing, asthma, airway inflammation and bronchial hyperresponsiveness:
- Genetic (COPD-associated genes) and epigenetic factors (environmental exposure favoring COPD-associated gene expression).
- COPD goes beyond smoking (which remains a key environmental risk factor) and is related to numerous risk factors early in life, interacting with the individual’s genetics through epigenetic changes induced throughout life. This new perspective on COPD (Genome × Exposure × Time) can also be applied to many other human diseases traditionally considered as diseases linked to aging.
Download this asset:
Reference:
Vila M, Faner R, Agustí A. Beyond the COPD-tobacco binomial: New opportunities for the prevention and early treatment of the disease. Med Clin (Barc). 2022 Jul 8;159(1):33-39. English, Spanish. doi: 10.1016/j.medcli.2022.01.021. Epub 2022 Mar 9. PMID: 35279314.
- The association between cardiovascular disease and COPD could be a consequence of :
- Common risk factors (environmental and/or genetic)
- Common pathophysiological pathways
- Coexistence of both diseases in high prevalence
- Complications (including pulmonary exacerbations) of COPD that contribute to cardiovascular disease and
- Medications for cardiovascular disease can worsen COPD and vice versa.
- Cardiovascular risk in COPD has traditionally been associated with increased disease severity, but there are other associations with COPD subtypes, relevant: Moderate severe COPD (GOLD types B, C and D) frequent exacerbators, radiological subtypes (centrolobulillar emphysema, coronary vessel calcifications on CT) and new disease groups.
- Although the prevalence of CVD is high in COPD populations, the clinical manifestations overlap and it is possible that it is underdiagnosed, so including a search for it optimizes diagnosis and treatment, and leads to better outcomes.
Download this asset:
Reference:
Balbirsingh V, Mohammed AS, Turner AM, Newnham M. Cardiovascular disease in chronic obstructive pulmonary disease: a narrative review. Thorax. 2022 Jun 30: thoraxjnl-2021-218333. doi: 10.1136/thoraxjnl-2021-218333. Epub ahead of print. PMID: 35772939.
- The presentation of COPD in women has some characteristic features that differentiate it from COPD in men:
- Women with COPD tend to be younger
- They get sick having smoked less
- They have more symptoms and breathe worse but have less secretions.
- The most frequent comorbidity in women was asthma, while in men it was diabetes.
- FEV1 impairment is greater in men.
- Exercise capacity in women with COPD is worse and their body mass index is lower than that of men.
- In comparing outcomes of men and women with similar clinical and demographic characteristics, survival is longer in women and prognosis is usually worse in men, as they express more comorbidities and twice the mortality risk compared to women.
- In both sexes, however, the so-called obesity paradox in COPD is expressed, in which a high body mass index is associated with lower mortality than a low body mass index.
Download this asset:
Reference:
Perez TA, Castillo EG, Ancochea J, Pastor Sanz MT, Almagro P, Martínez-Camblor P, Miravitlles M, Rodríguez-Carballeira M, Navarro A, Lamprecht B, Ramírez-García Luna AS, Kaiser B, Alfageme I, Casanova C, Esteban C, Soler-Cataluña JJ, De-Torres JP, Celli BR, Marin JM, Lopez-Campos JL, Riet GT, Sobradillo P, Lange P, Garcia-Aymerich J, Anto JM, Turner AM, Han MK, Langhammer A, Sternberg A, Leivseth L, Bakke P, Johannessen A, Oga T, Cosío B, Echazarreta A, Roche N, Burgel PR, Sin DD, Puhan MA, Soriano JB. Sex differences between women and men with COPD: A new analysis of the 3CIA study. Respir Med. 2020 Sep;171:106105. doi: 10.1016/j.rmed.2020.106105. Epub 2020 Aug 13. PMID: 32858497.
- It requires the generation of communicative spaces with the participation of all the agents of the healthcare system: patients and relatives, healthcare professionals, managers and directors of healthcare institutions, providers, patient support associations and foundations, caregivers, etc. ); adapted to the real requirements of patients and their environment. With the aim of improving the level of trust, which transcends the pure hospital/ambulatory, technical and clinical environment.
- Taking into account the factors that determine trust in health care instructions, the expression and attention to the felt needs of patients, caregivers, and users of health care services favor making the necessary means available to them, as well as effective communication, based on transparency, empathy and overall positive assessment of the response and reliability of the interventions.
- Health literacy is the ability of a person to perform different tasks in a digital environment. This skill includes the competence to locate, research and analyze information, as well as being able to develop content and design proposals, through digital media.
- Digital literacy enables understanding and use of available information to promote and maintain good health, which supports self-management of COPD and especially impacts knowledge of the disease and level of physical activity.
- The accompaniment, training and guidance (coaching) in health, contributes to adherence to treatment, good decision-making of COPD patients regarding their disease (empowerment), and improvement of their quality of life.
- Health coaching competencies should be included in the training profile of health professionals.
Download this asset:
Reference:
- Hass, N. . (2022). El concepto de la confianza como valor social que sostiene el sistema sanitario público en España. Tendencias Sociales. Revista De Sociología, (8), 87–132. https://doi.org/10.5944/ts.2022.34262
- Shnaigat M, Downie S, Hosseinzadeh H. Effectiveness of Health Literacy Interventions on COPD Self-Management Outcomes in Outpatient Settings: A Systematic Review. COPD. 2021 Jun;18(3):367-373. doi: 10.1080/15412555.2021.1872061. Epub 2021 Apr 26. PMID: 33902367.
- Tülüce D, Kutlutürkan S. The effect of health coaching on treatment adherence, self-efficacy, and quality of life in patients with chronic obstructive pulmonary disease. Int J Nurs Pract. 2018 Aug;24(4):e12661. doi: 10.1111/ijn.12661. Epub 2018 May 16. PMID: 29770542.
- COPD disproportionately affects the poorest and most disadvantaged people
- A large proportion of COPD cases are preventable: banning any type of cigarette or tobacco, and improving the quality of the air breathed, would greatly reduce these cases.
- COPD is a heterogeneous disease with various forms of clinical expression.
- Exposure to risk factors at early stages determines the trajectory of lung function and the future probability of developing COPD.
- The diagnosis should include expanded clinical criteria: respiratory symptoms, personal history, risk factors, persistent airflow obstruction documented by spirometry and other pulmonary function or imaging tests.
- Spirometry alone is not capable of identifying early airway changes or emphysematous destruction of lung tissue, and probably only detects irreversible disease.
- The diagnosis of exacerbations should be based on standardized, evidence-confirmed criteria for worsening respiratory symptoms.
- Exacerbations can be categorized according to the degree of clinical, biological, and physiological deterioration into severe and non-severe.
- Treatment and prognosis should take into account the predominant risk factor for each patient.
- Treatment for COPD is not available for many people. It is a moral imperative to improve access to effective treatment and the development of curative or regenerative treatments.
- Successful management of COPD is likely to be favored by early diagnosis that takes into account the pathophysiological differences and the clinical expression of the disease in each individual.
- The elimination of COPD requires joint and coordinated action, allowing the investment of sufficient financial resources and the confluence of the intellectual resources of all parties involved: physicians, patients, caregivers, government managers, regulatory agencies, private industry and the general public.
Download this asset:
Reference:
Stolz D, Mkorombindo T, Schumann DM, Agusti A, Ash SY, Bafadhel M, Bai C, Chalmers JD, Criner GJ, Dharmage SC, Franssen FME, Frey U, Han M, Hansel NN, Hawkins NM, Kalhan R, Konigshoff M, Ko FW, Parekh TM, Powell P, Rutten-van Mölken M, Simpson J, Sin DD, Song Y, Suki B, Troosters T, Washko GR, Welte T, Dransfield MT. Towards the elimination of chronic obstructive pulmonary disease: a Lancet Commission. Lancet. 2022 Sep 17;400(10356):921-972. doi: 10.1016/S0140-6736(22)01273-9. Epub 2022 Sep 5. PMID: 36075255.
- Assessment and education on the use of inhalers is critical to the management of COPD.
- Repeated training in inhaler technique, performed by a specialized nurse, increased adherence and satisfaction with the inhaler but did not improve long-term quality of life (6 months).
- Some key aspects of nutrition in COPD patients:
- Fractional diet
- Daily consumption of energy and protein-rich foods as a priority to improve nutritional status, functional capacity, and quality of life.
Download this asset:
Reference:
- Ahn JH, Chung JH, Shin KC, Jin HJ, Jang JG, Lee MS, Lee KH. The effects of repeated inhaler device handling education in COPD patients: a prospective cohort study. Sci Rep. 2020 Nov 12;10(1):19676. doi: 10.1038/s41598-020-76961-y. PMID: 33184428; PMCID: PMC7665176.
- Nguyen HT, Collins PF, Pavey TG, Nguyen NV, Pham TD, Gallegos DL. Nutritional status, dietary intake, and health-related quality of life in outpatients with COPD. Int J Chron Obstruct Pulmon Dis. 2019 Jan 14;14:215-226. doi: 10.2147/COPD.S181322. PMID: 30666102; PMCID: PMC6336029.
- The amount of physical activity of the COPD patient is directly related to the physiological limitations associated with his or her disease and to the short-term progression and prognosis of the disease.
- The use of tools based on experience or patient-reported outcomes, such as the amount of physical activity and the difficulty experienced during physical activity, as well as associated symptoms, provide better monitoring of physical activity objectified by devices.
- Both the assessment of physical activity indicators, such as the number of steps per day, are valid, reliable and sensitive for evaluating the efficacy of pharmacological and non-pharmacological interventions in COPD patients.
- Long-acting bronchodilator therapy, particularly with the LABA/LAMA combination, remains the mainstay of COPD treatment.
- Periodic reassessment of the patient is mandatory. This allows the identification of characteristics and interventions capable of maximizing benefits for a specific patient or subset of patients.
- Blood eosinophil count is a useful marker to verify the response to inhaled corticosteroids and to prevent future exacerbations in patients who, despite adequate bronchodilator treatment, still suffer from them.
- Circumstances early in life that affects lung function are of critical importance for the later development of COPD in adulthood.
Download this asset:
Reference:
- Demeyer H, Mohan D, Burtin C, Vaes AW, Heasley M, Bowler RP, Casaburi R, Cooper CB, Corriol-Rohou S, Frei A, Hamilton A, Hopkinson NS, Karlsson N, Man WD, Moy ML, Pitta F, Polkey MI, Puhan M, Rennard SI, Rochester CL, Rossiter HB, Sciurba F, Singh S, Tal-Singer R, Vogiatzis I, Watz H, Lummel RV, Wyatt J, Merrill DD, Spruit MA, Garcia-Aymerich J, Troosters T; Chronic Lung Disease Biomarker and Clinical Outcome Assessment Qualification Consortium Task Force on Physical Activity. Objectively Measured Physical Activity in Patients with COPD: Recommendations from an International Task Force on Physical Activity. Chronic Obstr Pulm Dis. 2021 Oct 28;8(4):528-550. doi: 10.15326/jcopdf.2021.0213. PMID: 34433239; PMCID: PMC8686852.
- Celli BR, Singh D, Vogelmeier C, Agusti A. New Perspectives on Chronic Obstructive Pulmonary Disease. Int J Chron Obstruct Pulmon Dis. 2022 Sep 6;17:2127-2136. doi: 10.2147/COPD.S365771. PMID: 36097591; PMCID: PMC9464005.
- Comprehensive, multidisciplinary, and coordinated management of COPD patients is an effective and economical method for institutions to provide consistent, quality care. The findings of this study demonstrate that the implementation of an evidence-based care package for COPD patients is an effective strategy for reducing hospital readmissions at 30, 60, and 90 days.
- The care package proposal is based on GOLD recommendations and optimizes care in 5 areas:
- Outpatient consultation:
- Pulmonary functional and dietary evaluation.
- Personalized treatment
- Hospitalization
- Rehabilitation and early mobility
- Assessment of depression/anxiety
- Lung cancer screening according to risk factors
- Discharge medication delivery
- Implementation of an Action Plan, detailing personalized actions for the management of your disease.
- Education:
- Health education
- Training in the use of inhalers
- Anti-smoking tips
- Transitions between care:
- Referral to pulmonary rehabilitation
- Referral to home care and integrated mobile health services.
- Referral to outpatient community support groups
- Post-hospitalization follow-up
- Appointment with pneumologist 7 days after discharge from hospital
- Follow-up phone call within 2 to 3 days of discharge
- Outpatient consultation:
Download this asset:
Reference:
Kendra M, Mansukhani R, Rudawsky N, Landry L, Reyes N, Chiu S, Daley B, Markley D, Fetherman B, Dimitry EA Jr, Cerrone F, Shah CV. Decreasing Hospital Readmissions Utilizing an Evidence-Based COPD Care Bundle. Lung. 2022 Aug;200(4):481-486. doi: 10.1007/s00408-022-00548-9. Epub 2022 Jul 7. PMID: 35796786.
- Rehabilitation is one of the important components of COPD management. Programs lasting between 6 and 52 weeks significantly improve the quality of life of COPD patients and reduce the number of exacerbations, compared to those who do not receive it.
- There is a lack of evidence to identify truly successful interventions for their impact on the rehabilitation and quality of life of COPD patients after hospital admission.
- Cardiovascular endurance exercise in adults over 65 years of age with COPD favored their functional recovery and improved walking tolerance.
- The challenge of making a significant change during a short period of inpatient rehabilitation emphasizes the importance of early, effective intervention to increase resilience and promote discharge to home in older adults after an unplanned hospital admission.
Download this asset:
Reference:
- Dong J, Li Z, Luo L, Xie H. Efficacy of pulmonary rehabilitation in improving the quality of life for patients with chronic obstructive pulmonary disease: Evidence based on nineteen randomized controlled trials. Int J Surg. 2020 Jan;73:78-86. doi: 10.1016/j.ijsu.2019.11.033. Epub 2019 Dec 13. PMID: 31843677.
- Lambe K, Guerra S, Salazar de Pablo G, Ayis S, Cameron ID, Foster NE, Godfrey E, Gregson CL, Martin FC, Sackley C, Walsh N, Sheehan KJ. Effect of inpatient rehabilitation treatment ingredients on functioning, quality of life, length of stay, discharge destination, and mortality among older adults with unplanned admission: an overview review. BMC Geriatr. 2022 Jun 11;22(1):501. doi: 10.1186/s12877-022-03169-2. PMID: 35689181; PMCID: PMC9188066.
- Living in areas with low population density, wide pedestrian streets, low slope, and low exposure to NO2 (nitrous oxide) are positively related to objective physical activity level, perception of physical activity, and functional capacity of COPD patients.
- Patients who live in densely populated areas, are more sedentary and have worse functional capacity, especially if there are depressive symptoms.
- The presence of steep slopes was associated with greater functional capacity, but not with increased physical activity.
- Long-term NO2 (nitrous oxide) exposure was associated with a sedentary lifestyle, difficulties in physical activity, and dyspnea,
- Environmental exposure to microparticles and noise showed no correlation with physical activity or exercise capacity.
- These findings support the consideration of environmental factors of the home environment during the management of COPD and the care of patients with chronic diseases in the development of urban planning and transportation policies.
Download this asset:
Reference:
Koreny M, Arbillaga-Etxarri A, Bosch de Basea M, Foraster M, Carsin AE, Cirach M, Gimeno-Santos E, Barberan-Garcia A, Nieuwenhuijsen M, Vall-Casas P, Rodriguez-Roisín R, Garcia-Aymerich J. Urban environment and physical activity and capacity in patients with chronic obstructive pulmonary disease. Environ Res. 2022 Nov;214(Pt 2):113956. doi: 10.1016/j.envres.2022.113956. Epub 2022 Jul 22. PMID: 35872322.
Expert team:
A multidisciplinary team of patient experts, clinicians and researchers several disciplines:
- Coordination group: Tonya Winders (GAAPP President), Lindsay De Santis (GAAPP Director), Victor Gascon Moreno (GAAPP Project Lead), Dr Nicole Hass (Spokesperson and Technical Advisor of APEPOC), Dr Ady Angelica Castro (Medical Researcher CIBER ISCIII).
- Work group:Dr Ady Angelica Castro (Medical Researcher CIBER ISCIII), Dr Isidoro Rivera (Primary Care Doctor), Dr Nicole Hass (Spokesperson and Technical Advisor of APEPOC), Juan Traver (Patient expert), Alfons Viñuela (Patient expert).
- Methodological support: Dr Carlos Bezos (Institute for the Patient Experience, IEXP)
- Administrative support and translations: Global Allergy & Airways Patient Platform (GAAPP)
- Patient group: Juan Traver, Consuelo Díaz de Maroto, Antonia Coalla, Elena Diego, Asunción Fenoll, Fernando Uceta, Justo Herraíz, María Martín, Alfons Viñuela, Javier Jimenez.
- Additional support group (patients): Fernando Uceta, José Julio Torres, Luís María Barbado, Maria Isabel Martín, Pedro Cabrera, Jose David Fernández, Mariluz Rodriguez, José Antonio Olivares.
- Group of patient’s family members and caregivers: Ángeles Sánchez, Iván Pérez, Julián Durand, Matilde Aparicio, Maria del Mar Moreno.
This educational asset have been created for COPD patients and caregivers, thanks to the collaborative work of:
With the clinical revision of:
Thanks to the generous support of
References:
[1] Muka T, Glisic M, Milic J, Verhoog S, Bohlius J, Bramer W, Chowdhury R, Franco OH. A 24-step guide on how to design, conduct, and successfully publish a systematic review and meta-analysis in medical research. Eur J Epidemiol. 2020 Jan;35(1):49-60. doi: 10.1007/s10654-019-00576-5. Epub 2019 Nov 13. PMID: 31720912.