Empowerment Guides for Patients with COPD, revised by experts, patients & caregivers

Introduction to the need for “patient-friendly” Guide(1):

Many professional health care societies, recognize the need to empower patients and their families to use more rigorous processes to ensure health care recommendations are informed by the best available evidence.

Therefore, there is a need for efficient use of resources and international collaboration to guideline development, implementation, and adaptation resulting in better understandable content, i.e. “patient friendly”.

Objectives:

With this objective in mind, GAAPP (Global Allergy & Airways Patient Platform) in collaboration with APEPOC (Spanish National COPD Patient Association) and with the scientific review of CIBERES(2) have created 6 guides supported by scientific evidence and international standards for the COPD management(3) as a tool that allows COPD patients, their families, and caregivers to make the best decisions about their disease.

Methodology:

These guides are the result of the “Research Action Participation” methodology(4) and the “patient value proposition”, which focus on self-management of the disease and preventing its progression to achieve better life quality and longer life expectancy.

Key Issues to tackle:

  1. COPD is under-diagnosed and neither patients nor (primary care) physicians know about it
  2. The treatment impact patient for the control and progression of the disease is insufficient
  3. Lack of communication between patients and doctors
  4. Lack of efficient, continuous, and multidisciplinary monitoring
  5. Diagnosis and treatment of exacerbations are inefficient and self-care is not promoted.

Topics of the guide:

  1. Prevention
  2. Diagnosis
  3. Maintenance
  4. Management of stable COPD
  5. Management of flares
  6. Associated diseases and COVID-19
Do you want these guides to be translated to your national language? Contact us at info@gaapp.org

Expert team:

 A multidisciplinary team of patient experts, clinicians and researchers, several disciplines:

  • Coordinador Group: Gundula Kobmiller (GAAPP), Tonya Winders (GAAPP President), Nicole Hass (Spokesperson and Technical Advisor of APEPOC), Dr. Ady Angelica Castro (Medical Researcher CIBERES ISCIII).
  • Work Group: Ady Angelica Castro (Medical Researcher CIBERES ISCIII), Dr. Isidoro Rivera (Primary Care Doctor), Nicole Hass (Spokesperson and Technical Advisor of APEPOC), Dr. Raúl de Simón (Primary Care Doctor and coordinator of smoking of the scientific society SEMERGEN).
  • Methodological support: Carlos Bezós (Institute for the Patient Experience, IEXP).
  • Administrative support and translations: (Spanish, Russian and Ukrainian): Lara Puente (APEPOC), Viktoria Rozhko (APEPOC).
  • Other translations: GAAPP (Global Allergy & Airways Patient Platform).
  • Patient Group: Juan Traver, Consuelo Díaz de Maroto, Antonia Coalla, Elena Diego.
  • Additional support group (patients): Asunción Fenoll, Fernando Uceta, José Julio Torres, Justo Herraíz, Luís María Barbado, Maria Isabel Martín, María Martín, Pedro Cabrera.
  • Group of patient’s family members and care-givers: Ángeles Sánchez, Ivan Pérez, José David Fernández, Julián Durand, Matilde Aparicio.

This guides have been created for COPD patients and caregivers, thanks to the collaborative work of:

GAAPP Global Allergy & Airways Patient Platform
APEPOC

With the clinical revision of:

CIBERES

Thanks to the generous support of

Astrazeneca logo

References:

  1. The Institute of Medicine (IOM) defines clinical practice guidelines as “statements that include recommendations, intended to optimise patient care, that are informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options”. Chronic obstructive pulmonary disease (COPD) presents a great clinical heterogeneity, so its treatment must be individualised according to the level of risk and phenotype.
  2. CIBERES (CIBER for Respiratory Diseases) is a multidisciplinary research network with the main objective of combating respiratory diseases by promoting excellence in research and transferring it quickly and safely to clinical practice. It depends on the Carlos III Health Institute, Spanish Ministry of Science and Innovation
  3. GOLD guidelines 2021 https://pubmed.ncbi.nlm.nih.gov/33146552/ GesEPOC Guidelines 2021 https://pubmed.ncbi.nlm.nih.gov/32980163/
  4. Rodríguez-Villasante T, Montañés M MJ. La investigación social participativa, construyendo ciudadanía.. El Viejo Topo. Red CIMS (Red de Colectivos y Movimientos Sociales); 2000. 175p ISBN-10: ‎849522416X. https://www.participatorymethods.org/glossary/participatory-action-research