title: HOLD study (Home care Obstructive Lung Disease): natural history of patients with advanced COPD.
abstract: BACKGROUND
  Chronic obstructive pulmonary disease (COPD) is the fourth cause of death in western countries. Its final stage has clearly been forgotten by medical research in recent years. There exists consensus regarding the need to integrate palliative care in assisting these patients, but the difficulty in establishing a prognosis for the disease, establishing limits for life support measures, the lack of information about the disease's natural course and ignorance as to the most effective health-care structure for these patients' palliative treatment may be responsible for their late inclusion or non-inclusion in specific programmes. The main purpose of this work is to find out the natural background of patients with stage IV COPD and the main prognostic factors that influence these patients' survival.
  
  
  METHODS
  Prospective observational study of a home patient cohort with stage IV COPD sent from Neumology consultations and Palliative Care Unit in La Paz Hospital in Madrid and Primary Care Health Centres in the area to the palliative care home support team. The goal is to study socio-demographic variables, prognosis, nutritional status, use of health resources, perceived quality of life, functionality, main symptomatology, use and effectiveness of opioids, adherence to treatment, prognostic information regarding the disease, information given by professionals, advance directives, social backup requirements and overburden level of the main caregiver.
  
  
  CONCLUSIONS
  The HOLD study is a project aimed at finding out the prognostic factors and evolution of the disease COPD in its most advanced stage. The final goal is to improve the health and quality of life, in a personalised, integral way up to end of life and explore and foster communication with patients, as well as their participation and collaboration in decision-taking. The HOLD study can help us better understand what these patients' real palliative and care needs are, in order to more efficiently organise their treatment at end of life.
authors.affiliation: ESAPD Dirección Asistencial Norte de Madrid. C.S. Reyes Católicos, Avenida de España 20, San Sebastian de los Reyes, Madrid, Spain. dgainza99@me.com.
authors.forename: Daniel
authors.initials: D
authors.lastname: Gainza Miranda
authors.affiliation: ESAPD Dirección Asistencial Norte de Madrid. C.S. Reyes Católicos, Avenida de España 20, San Sebastian de los Reyes, Madrid, Spain.
authors.forename: Eva María
authors.initials: EM
authors.lastname: Sanz Peces
authors.affiliation: Unidad de Cuidados Paliativos del Hospital de la Paz, Paseo de la Castellana, 261, 28046, Madrid, Spain.
authors.forename: Alberto
authors.initials: A
authors.lastname: Alonso Babarro
authors.affiliation: Servicio Neumología del Hospital de la Paz, Paseo de la Castellana, 261, 28046, Madrid, Spain.
authors.forename: Maria Concepción
authors.initials: MC
authors.lastname: Prados Sánchez
authors.affiliation: Equipo Soporte Hospitalario Hospital Ramon y Cajal, Ctra. de Colmenar Viejo, km. 9,100, 28034, Madrid, Spain.
authors.forename: María
authors.initials: M
authors.lastname: Varela Cerdeira
mesh_terms: D017028:Caregivers / Q000592:standards / Q000600:supply & distribution; D003142:Communication; D017281:Cost of Illness; D006305:Health Status Indicators; D006699:Home Care Services; D006801:Humans; D010166:Palliative Care / Q000592:standards*; D010349:Patient Compliance / Q000706:statistics & numerical data; D017060:Patient Satisfaction; D011379:Prognosis; D011446:Prospective Studies; D029424:Pulmonary Disease, Chronic Obstructive / Q000401:mortality / Q000451:nursing* / Q000503:physiopathology; D011787:Quality of Health Care / Q000592:standards / Q000706:statistics & numerical data; D011788:Quality of Life; D012944:Social Support; D013030:Spain; D011795:Surveys and Questionnaires
keywords: COPD; End of life; Homecare; Palliative care