Chronically ill patients say they are generally aware of how the national health system works, especially in terms of primary care, but find the provision of specialized care difficult to understand. Patients find it hard to orientate themselves at hospitals and have difficulty locating the different services, identifying staff and doing the various diagnostic tests. They claim that the information they receive is fragmented and focused on the next stage of the care process, which makes it difficult for them to get an overview of their situation.

These are the conclusions reached in Evolution of Chronically Ill Patients, a study presented on Tuesday, 10 December 2013, at the headquarters of the Federation of Spanish Journalists’ Associations (FAPE) in Madrid. The study was conducted by the UIC’s Global Institute of Public Health and Health Policy (IGS) in collaboration with the Spanish Patients’ Forum and sponsored by the company Esteve. Its objective was to find out more about the behaviour of chronically ill patients and their healthcare needs.

“Health centres are set up to be efficient at a technical level; no thought has yet been given to making them easier to access and navigate for patients. The focal point for the provision of care is the illness, rather than the patient”. This was the argument put forward by the late Dr. Albert Jovell, who led the publication of the study and was until recently the director of the IGS.

By itself, providing information has not been shown to be effective in promoting lifestyle changes. Professionals need to implement health coaching techniques and motivate patients to take care of themselves during the various stages of their illness.

“To this end, the IGS has developed a series of self-care training programmes, which are based on the acquisition of skills and focused on the needs of chronically ill patients”, stated IGS Assistant Director Dr. María Dolores Navarro.

Another of the study’s key messages involved the barriers patients may face when attempting to communicate with healthcare professionals, such as a lack of time, the use of technical terminology and interruptions during their visit. These can make relations more difficult and have a negative impact on patients’ adherence to their treatment plans and their administration of self-care. Similarly, the informative materials designed for patients tend to be too general, too long and to use highly complex terminology, according to the patients who participated in the study.

“This study shows that older people who live alone and lack a social-support network find it harder to administer self-care and follow medical instructions”, affirmed Emilia Arrighi, Head of Research at the IGS and the coordinator of the study.

The main conclusions drawn by the study demonstrated that there is a clear need to:

- Carry out research projects focused on health literacy and screening tools to establish profiles for patients who may lack healthcare-related skills.

- Promote the acquisition of skills aimed at improving self-care amongst chronically ill patients.

- Train healthcare professionals in health coaching and patient-motivation techniques.

- Improve oral and written communication with patients by using educational materials that are focused on their needs and improving the evolution of their healthcare.

To meet the objectives of this study, the researchers made use of qualitative information-gathering techniques such as semi-structured interviews with experts and discussion groups with chronically ill patients.  

The study was carried out under the terms of the collaboration agreement signed in February 2013 by Esteve, the UIC and the Spanish Patients’ Forum. The agreement aims to develop scientific research and training projects geared towards improving healthcare provision for chronically ill patients, which is one of the biggest challenges facing the healthcare system today.

“These results provide a starting point from which we can attempt to improve the provision of healthcare for chronically ill patients, establish a comprehensive operational framework and promote initiatives that improve key aspects such as educating patients about their healthcare arrangements and ensuring they adhere to their treatment plans”, added Eugeni Sedano, the Director of Institutional Relations at Esteve.

Also in attendance at the presentation of the study in Madrid were Alipio Gutiérrez, President of the National Association of Healthcare Journalists (ANIS); Eugeni Sedano, Director of Institutional Relations at Esteve; Sonia García Sanjosé, Assistant Managing Director for Quality and Cohesion at the Spanish Ministry of Health, Social Services and Equality; Alberto Canals, General Manager of the UIC; Emilia Arrighi (who presented the study), Head of Research at the UIC’s IGS; and Jorge Vázquez, General Manager for Corporations and Institutions at Esteve. Vázquez also presented Esteve’s ExpertSalud app, a free mobile application designed to help patients manage their healthcare arrangements. The app is particularly suitable for chronically ill patients who need to improve their adherence to their treatment plans. 

"Itinerario del paciente crónico"