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The diagnosis of breast cancer (BC) can make the affected person vulnerable to suffering the possible consequences of the use of low-quality health information. Massive open online courses (MOOCs) may be a useful and efficient resource to improve digital health literacy and person-centred care in this population. The aim of this study is to co-create a MOOC for women with BC, using a modified design approach based on patients’ experience. Co-creation was divided into three sequential phases: exploratory, development and evaluation. Seventeen women in any stage of BC and two healthcare professionals participated. In the exploratory phase, a patient journey map was carried out and empowerment needs related to emotional management strategies and self-care guidelines were identified, as well as information needs related to understanding medical terminology. In the development phase, participants designed the structure and contents of the MOOC through a Moodle platform. A MOOC with five units was developed. In the evaluation phase, participants strongly agreed that their participation was useful for the MOOC’s development and participating in the co-creation process made the content more relevant to them (experience in the co-creation); most of the participants positively evaluated the content or interface of the MOOC (acceptability pilot). Educational interventions designed by women with BC is a viable strategy to generate higher-quality, useful resources for this population.

This study examines the experiences and expectations of patients with depressive disorders regarding the disease and different antidepressants, as well as examining the barriers and facilitating factors that could affect their adherence to medications. An exploratory qualitative study was carried out. The study involved two focus groups made up of patients and caregivers and six semi-structured interviews with psychiatrists. In both cases, the participants were selected by intentional theoretical sampling, seeking maximum significance variation of social types. Prejudice about the side effects of medication was relevant. The importance of patients being well informed about the disease/treatments was noteworthy. The stigmatization of antidepressants by patients was identified as a barrier to medication adherence. The involvement of family members and the motivation of patients to be actively involved in the process to recover from the disease were identified as facilitating factors. The work carried out suggests the need for patients to have rigorous information about the disease/treatment to reduce the possible prejudices generated by beliefs. Maintaining greater contact and monitoring of patients/caregivers to help therapeutic adherence in patients with depressive disorders was also identified as being of great importance.

In Spain, there is not a national strategy to promote shared decision making (SDM) in clinical practice, and it is still not a requisite for improving the quality of health services, in either the legal norms or professionals' educational curricula. However, several national strategies in specific health areas increasingly include the principles of person centred care (PCC) and SDM into their objectives, promoting patients' empowerment and activation. Furthermore, several institutions continue to develop Patient Decision Aids (PtDAs) and other resources to facilitate patients' involvement in their own care; training programs for professionals; links between PtDAs and clinical practice guidelines; as well as interventional studies assessing the impact of PCC and SDM interventions in clinical practice. Initiatives to involve patients in health research design and health technology assessment are also being developed. We describe an update of the current state of research, policy and implementation of SDM after five years of substantial advances in Spain. Many challenges remain regarding national and regional policies on PCC and SDM, implementation of SDM in real practice and educational curricula, development of quality indicators and evaluation procedures.

Health technology assessment (HTA) provides evidence-based information on healthcare technology to support decision making in many countries. Environmental impact is a relevant dimension of a health technology’s value, but it has been poorly addressed in HTA processes in spite of the commitment that the health sector must have to contribute to mitigating the effects of climate change. This study aims to identify the state of the art and challenges for quantifying environmental impacts that could be incorporated into the economic evaluation (EE) of HTA. We performed a scoping review that included 22 articles grouped into four types of contribution: (1) concepts to draw up a theoretical framework, (2) HTA reports, (3) parameter designs or suitable indicators, and (4) economic or budgetary impact assessments. This review shows that evaluation of the environmental impact of HTAs is still very incipient. Small steps are being taken in EE, such as carbon footprint estimations from a life-cycle approach of technologies and the entire care pathway.

Background: Neurological disorders are the leading cause of disability and the second leading cause of death worldwide. Teleneurology (TN) allows neurology to be applied when the doctor and patient are not present in the same place, and sometimes not at the same time. In February 2021, the Spanish Ministry of Health requested a health technology assessment report on the implementation of TN as a complement to face-to-face neurological care. Methods: A scoping review was conducted to answer the question on the ethical, legal, social, organisational, patient (ELSI) and environmental impact of TN. The assessment of these aspects was carried out by adapting the EUnetHTA Core Model 3.0 framework, the criteria established by the Spanish Network of Health Technology Assessment Agencies and the analysis criteria of the European Validate (VALues In Doing Assessments of healthcare TEchnologies) project. Key stakeholders were invited to discuss their concerns about TN in an online meeting. Subsequently, the following electronic databases were consulted from 2016 to 10 June 2021: MEDLINE and EMBASE. Results: 79 studies met the inclusion criteria. This scoping review includes 37 studies related to acceptability and equity, 15 studies developed during COVID and 1 study on environmental aspects. Overall, the reported results reaffirm the necessary complementarity of TN with the usual face-to-face care. Conclusions: This need for complementarity relates to factors such as acceptability, feasibility, risk of dehumanisation and aspects related to privacy and the confidentiality of sensitive data.

IntroductionAromatherapy is the field of herbal medicine that uses essential oils distilled from flowers, roots, and herbs and other plant compounds to promote physical and psychological well-being. Essential oils are absorbed into the body in different ways, with the inhaled and topical routes being the most widely used. The aim of this review was to critically evaluate and synthesize the available scientific evidence on the efficacy and safety of aromatherapy for the management of any therapeutic indication. This report was requested by the Spanish Ministries of Health and Science and Innovation.MethodsAn overview of systematic reviews (SRs) was performed. The MEDLINE, Embase, CINAHL, and PsycINFO databases were searched for literature published from January 2006 to August 2021. SRs reporting the efficacy and safety of aromatherapy were included. We applied no restrictions in terms of administration route or essential oil used. Two reviewers independently performed screening and selection, data extraction, and quality assessment.ResultsWe included 74 SRs covering a wide variety of populations and settings. The most reported outcome was anxiety, followed by pain, and the most commonly used essential oil was lavender. Fifteen SRs reported mild adverse events with aromatherapy. Only 11 SRs assessed the certainty of evidence using the GRADE approach. Aromatherapy reduced heart rate and likely reduces anxiety and breathing rate in patients with cardiovascular diseases. Aromatherapy probably also reduces pain in women with primary dysmenorrhea. Additionally, it may reduce blood pressure, acute pain, subjective stress, and the need for antiemetic drugs after surgical procedures. However, the evidence was very uncertain regarding the effect of essential oils on anxiety, pain, and quality of life in patients with cancer, anxiety and pain after a caesarean section, and dental anxiety.ConclusionsAromatherapy may be useful for managing psychological and physical symptoms in different settings. However, the conclusions of this review are not definitive because of the moderate to high risk of bias in many of the primary studies included in the SRs.

IntroductionGesPeDia is a web-based application that provides aggregate clinical information, using outcome and process indicators, and disaggregated patient information. Information is obtained from the electronic medical records. GesPeDia aims to promote people-centered care, improve monitoring of patients’ health outcomes and quality of professional performance. This study aims to evaluate usability, acceptability and satisfaction of GesPeDia.MethodsNineteen evaluators were included (2 management technicians, 9 health center directors and 8 endocrine consultants). They had access to GesPeDia for two months. Perception of their usefulness for decision-making, acceptability and design satisfaction were measured with an online questionnaire. In addition, suggestions for improvements in the app’s functionalities were collected. Finally, a sample of the evaluators were included in a semi-structured interview to deepen the analysis of dimensions. A descriptive analysis of the data was performed.ResultsThe questionnaire was completed by 10 professionals, with mean age of 51.1 years and professional experience 16.5 years. Among the evaluators, 60 percent considered the app quite useful and only 10 percent found it inappropriate for their daily activities. Each of the indicator blocks was rated quite useful. Eight percent considered GesPeDia moderately fast, although for 20 percent navigation within the app was not very intuitive. Appearance was positively valued by 80 percent, despite the fact that 30 percent considered that design does not favor the understanding of contents. Seventy percent considered degree of reliability, relevance and clarity of the contents to be high. Most indicated that information provided by GesPedia is complete for decision-making.ConclusionsGesPeDia is valued positively by evaluators as a decision-making tool.

IntroductionTelemedicine strategies have been broadly introducing in health services during the COVID-19 pandemic, including in care of neurological diseases.MethodsA rapid realist review was conducted using EUnetHTAs Core Model 3.0 and GRADE evidence to decision frameworks were used as frameworks to describe the ethical, legal, organizational, social and patient aspects (ELSI+) related to the use of teleneurology (TN) A scoping multistakeholder meeting helped defined the scope and research questions of the assessment. Patient representatives, clinicians, scientific society representatives with relevant experience in TN were invited and participated. Industry representatives were also present. Systematic searches for ethical, legal, organizational, social and patients related aspects were conducted. Additional manual searches contributed to contextualize these dimensions in the Spanish context. A narrative synthesis was undertaken.ResultsMain results of the assessment of the ELSI+ aspects of TN were described. TN applications are diverse depending on the condition, objective of care and technology used. The implementation of TN lacks specific legal frameworks which implies legal uncertainty. TN may increase geographical accessibility to neurological care in remote areas and by reducing difficult commuting to specialized care centers. Nevertheless, accessibility is challenged by reduced access to technology, the digital divide, lack of health literacy or technologies not adapted to functional diversity. Therefore, equity is not guaranteed if it is offered as a non-voluntary basis or with no support. TN tends to be accepted by patients and carers if it has enough quality, saves travelling time and costs and does not dehumanize care as it is perceived as more flexible and convenient. Quality of TN needs an interdisciplinary team with skills to coordinate organizational aspects of the implementation which include among others, the planification of the support to patients and carers before, during and after the consultation. Health professionals may also need to learn adapted communicational and technological skills.ConclusionsThe implementation of TN poses many ethical, legal, organizational, social or patient-centered challenges.

Aunque las GPC y las HATD apoyan el proceso de toma de decisiones, las bases conceptuales de estos instrumentos difieren. El objetivo general de este documento es identificar y sintetizar las estrategias metodológicas propuestas para establecer un desarrollo colaborativo entre las GPC y las HATD.

Patients with rare diseases often face difficulties in clinical care due to the low prevalence of their diseases and the resulting healthcare professionals’ lack of expertise. Valid and standardized guidelines for clinical management are also lacking due to the scarcity of research and the variability of the clinical expressivity within each disease. In addition, in cases of rare diseases, the patient and health professional relationship may not fit with the traditional assumptions of medical care. Although the communication process between patients and healthcare professionals shares most of the general features of the standard patient-health professional interaction, rare diseases may be burdened with additional issues.

[ES] Objetivo: Analizar la percepción de la población española sobre la importancia de los factores de riesgo de cáncer. Métodos: La base de datos analizada fue OncoBarómetro 2010. Se realizaron modelos de regresión logística para analizar la importancia que la población atribuye al tabaco, el alcohol, el sol, la alimentación, el peso, las enfermedades de transmisión sexual, la historia familiar, la exposición a radiaciones, el contacto con sustancias nocivas y la contaminación atmosférica. Las respuestas fueron recogidas en una escala de 0 a 10, y dicotomizadas en importancia baja (0-6) y alta (7-10). La medida de asociación utilizada fue la razón de prevalencia (RP). Resultados: El tabaco ocupa el primer lugar en importancia percibida alta (83,1%), mientras que el peso (26,5%) se encuentra en último lugar. La probabilidad de percibir importantes los factores de riesgo estudiados es menor en los hombres (RP sol: 0,87; RP enfermedad de trasmisión sexual: 0,78) y mayor en las personas que han recibido recomendaciones preventivas de los profesionales (RP alcohol: 1,11; RP sol: 1,18; RP dieta: 1,31; RP peso: 1,92). Conocer algún síntoma de la enfermedad y un temor extremo al cáncer se asocian a la percepción del tabaco como un importante factor de riesgo. Una alta percepción de vulnerabilidad hacia la enfermedad hace que se perciba la exposición a sustancias nocivas, la contaminación y el tabaco como factores de riesgo importantes. Conclusiones: Es necesario dar a conocer la asociación del cáncer con el sobrepeso y las enfermedades de transmisión sexual. Las recomendaciones dadas por los/las profesionales sanitarios para prevenir el cáncer son clave para ampliar nuestra concienciación sobre los factores de riesgo. [EN] Objetive: To analyze the perception of the Spanish population of risk factors for cancer. Methods: Data were extracted from the OncoBarometro 2010 survey. Multivariate logistic models were applied to analyze the perception of the population on the importance of various risk factors: smoking, alcohol, sun, food, weight, sexually transmitted diseases, family history, radiation exposure, exposure to toxic substances and air pollution. The answers were rated on a 0 to 10 scale and were converted to low (0-6) and high (7-10) categories. The measure of association used was the prevalence ratio (PR). Results: The greatest importance was assigned to smoking (high importance: 83.1%), whereas the least importance was assigned to weight (26.5%). In general, the probability of perceiving risk factors as important was lower among men (PR sun: 0.87; PR sexually transmitted diseases: 0.78) and increased among people who received professional advice on cancer prevention (PR alcohol: 1.11; PR sun: 1.18; PR food; 1.31; PR weight: 1.92). In particular, knowledge of symptoms and extreme fear of cancer were associated with perceiving smoking as an important risk factor, whereas a high perceived vulnerability to cancer was associated with perceiving exposure to toxic substances, pollution and smoking as important risk factors. Conclusions: Greater awareness is required of the association of cancer with overweight and sexually transmitted diseases. The recommendations given by health professionals on cancer prevention are key to increasing the population's awareness of risk factors for cancer. Financiado por el Observatorio del Cáncer, Asociación Española Contra el Cáncer, Fundación Científica de la Asociación Española Contra el Cáncer, Madrid. Sí

To analyze the perception of the Spanish population of risk factors for cancer.Data were extracted from the OncoBarometro 2010 survey. Multivariate logistic models were applied to analyze the perception of the population on the importance of various risk factors: smoking, alcohol, sun, food, weight, sexually transmitted diseases, family history, radiation exposure, exposure to toxic substances and air pollution. The answers were rated on a 0 to 10 scale and were converted to low (0-6) and high (7-10) categories. The measure of association used was the prevalence ratio (PR).The greatest importance was assigned to smoking (high importance: 83.1%), whereas the least importance was assigned to weight (26.5%). In general, the probability of perceiving risk factors as important was lower among men (PR sun: 0.87; PR sexually transmitted diseases: 0.78) and increased among people who received professional advice on cancer prevention (PR alcohol: 1.11; PR sun: 1.18; PR food; 1.31; PR weight: 1.92). In particular, knowledge of symptoms and extreme fear of cancer were associated with perceiving smoking as an important risk factor, whereas a high perceived vulnerability to cancer was associated with perceiving exposure to toxic substances, pollution and smoking as important risk factors.Greater awareness is required of the association of cancer with overweight and sexually transmitted diseases. The recommendations given by health professionals on cancer prevention are key to increasing the population's awareness of risk factors for cancer.

Fundamentos: La mayor autonomía y el protagonismo de las mujeres con cáncer de mama en las decisiones sobre su salud son aspectos recientes en su asistencia sanitaria. El objetivo del trabajo es identificar y caracterizar los elementos que influyen en la toma de decisiones terapéuticas de las mujeres. Métodos: Metodología cualitativa de tipo fenomenológico. Muestreo teórico intencionado que incluyó a 70 mujeres diagnosticadas de cáncer de mama. Se realizaron 45 entrevistas y 3 grupos focales entre octubre de 2009 y julio de 2010 en 15 Comunidades Autónomas españolas. Análisis basado en los principios de la grounded theory con el apoyo del programa Atlas.ti v6.1. Resultados: Las pacientes se muestran proclives a tomar un papel activo o pasivo en la toma de decisiones dependiendo de la edad, la información disponible, su autovaloración como agente capaz de decidir y la importancia relativa al aspecto estético. A medida que avanza la enfermedad se puede producir un cambio en la posición de las mujeres, desde una postura inicial pasiva a una posición más activa. La actitud de los profesionales sanitarios frente a la toma de decisiones compartida y la información que ofrecen influye en la participación de las pacientes mientras que la familia juega un papel fundamental como apoyo o refuerzo en sus decisiones. Conclusiones: La postura ante la toma de decisiones de las mujeres con cáncer de mama es muy variable, cobrando especial importancia la situación emocional, nivel de información disponible y la influencia del entorno. Background: The patient autonomy and the greater role for women with breast cancer in the decisions about their health are recent issues in healthcare. The objective of this work is to identify and characterize the elements that influence them in treatment decisions. Methods: A phenomenological type qualitative study. Theoretical Sampling included 70 women diagnosed with breast cancer. 45 semi structured interviews and 3 focus groups were performed between October 2009 and July 2010 in 15 regions of Spain. The analysis was based on the principles of grounded theory with the support of Atlas.ti v6.1. Results: Patients are likely to take an active or passive role regarding decision-making depending on different variables such as their age, the information available, their self-assessment as capable agents to make decisions and the relative importance given to physical appearance. As the disease progresses, it can cause a change in women attitude, from an initially passive attitude to a more active role. The attitude of health professionals concerning shared decision-making and the information they offer determines patient participation while the family plays an essential role as a support or reinforcement of decisions made by patients. Conclusions: The patients' attitude regarding the decision-making of patients is very variable, becoming increasingly important the emotional status, the level of information available and the influence of the context.

This project supports the initiative promoted by the Spanish National Health System to provide informational materials, in printed or interactive format, to encourage public participation in decision making and healthcare. We present the newly created PyDEsalud.com, a web platform aimed at people with chronic diseases with a high socioeconomic impact, such as breast cancer, depression, and diabetes. This platform uses scientific methodology and contains three information service modules (Patients' experiences, Shared decision making, and Research needs), aimed at promoting health education for patients and families.

To analyze information needs and search strategies among women with breast cancer in Spain. An additional aim was to explore how the internet, as a source of health information, influences the autonomy and active management of this disease among patients. The research was conducted in 2010 and 2011.This study forms part of a broader qualitative study that focuses on describing patients' experiences of breast cancer and the trajectory of the disease, with the aim of creating a platform of integrated information resources for patients, relatives and healthcare professionals (PyDEsalud: http://www.pydesalud.com). We carried out 41 in-depth, semi-structured interviews with breast cancer patients in different stage of the disease, who were aged between 32 and 69 years. The interviewees' were selected by intentional sampling, which included 15 Spanish regions. The field work was carried out from June to August, 2010. The interviews were recorded on videotape or audio. Based on patients' narratives of their disease, a thematic-inductive analysis was performed of the information gathered.The findings show the importance of the internet as a source of health information. Moreover, the internet is a resource that is able to promote the empowerment process among patients and, consequently, to aid improvement in disease management.Users need access to web sites with high quality health information, adapted to their needs and objectives.

ResumenEste proyecto apoya la iniciativa, promovida por el Sistema Nacional de Salud en España, de facilitar materiales informativos, en formato impreso o interactivo, que impulsen la participación ciudadana en las decisiones y los cuidados de salud. Se presenta la recientemente creada Plataforma Web PyDEsalud.com, dirigida a personas afectadas por enfermedades crónicas de gran impacto socioeconómico, como son el cáncer de mama, la depresión o la diabetes. Siguiendo una metodología científica de trabajo, esta Plataforma incluye tres módulos de servicios informativos (Experiencias de pacientes, Toma de decisiones compartida y Necesidades de investigación), dirigidos a promocionar la educación sanitaria de pacientes y familiares.AbstractThis project supports the initiative promoted by the Spanish National Health System to provide informational materials, in printed or interactive format, to encourage public participation in decision making and healthcare. We present the newly created PyDEsalud.com, a web platform aimed at people with chronic diseases with a high socioeconomic impact, such as breast cancer, depression, and diabetes. This platform uses scientific methodology and contains three information service modules (Patients’ experiences, Shared decision making, and Research needs), aimed at promoting health education for patients and families.

ResumenObjetivoAnalizar las necesidades de información y las estrategias de búsqueda que emprenden personas afectadas de cáncer de mama en el contexto español, así como explorar cómo está influyendo la utilización de Internet, en tanto fuente de información sanitaria, en la promoción de la autonomía y en la gestión activa de la enfermedad. La investigación fue desarrollada durante los años 2010 y 2011.MétodoEste trabajo forma parte de una investigación cualitativa más amplia destinada a analizar la experiencia de pacientes con cáncer de mama sobre la trayectoria de su enfermedad, con el propósito de crear una plataforma de recursos informativos integrados para pacientes, familiares y profesionales sanitarios (PyDEsalud: http://www.pydesalud.com). Se ha desarrollado un estudio cualitativo basado en 41 entrevistas en profundidad con un guión semiestructurado a personas con cáncer de mama, en diferentes estadios, de 32 a 69 años de edad, seleccionadas mediante muestreo teórico intencionado, en 15 comunidades autónomas españolas. El trabajo de campo se realizó entre junio y agosto de 2010. Las entrevistas se grabaron en formato audiovisual y se realizó un análisis temático inductivo a partir de la narración de la enfermedad.ResultadosLos hallazgos muestran la relevancia del uso de Internet en la búsqueda de información sanitaria y como herramienta que puede favorecer el empoderamiento de los pacientes y mejorar la gestión de su enfermedad.ConclusionesSe evidencia la necesidad de los usuarios de acceder a sitios web que contengan información sanitaria de calidad, adaptados a sus necesidades y demandas.AbstractObjectiveTo analyze information needs and search strategies among women with breast cancer in Spain. An additional aim was to explore how the internet, as a source of health information, influences the autonomy and active management of this disease among patients. The research was conducted in 2010 and 2011.MethodThis study forms part of a broader qualitative study that focuses on describing patients’ experiences of breast cancer and the trajectory of the disease, with the aim of creating a platform of integrated information resources for patients, relatives and healthcare professionals (PyDEsalud: http://www.pydesalud.com). We carried out 41 in-depth, semi-structured interviews with breast cancer patients in different stage of the disease, who were aged between 32 and 69 years. The interviewees’ were selected by intentional sampling, which included 15 Spanish regions. The field work was carried out from June to August, 2010. The interviews were recorded on videotape or audio. Based on patients’ narratives of their disease, a thematic-inductive analysis was performed of the information gathered.ResultsThe findings show the importance of the internet as a source of health information. Moreover, the internet is a resource that is able to promote the empowerment process among patients and, consequently, to aid improvement in disease management.ConclusionsUsers need access to web sites with high quality health information, adapted to their needs and objectives.