Patient Empowerment and Involvement in Research.

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.In this sense, clinical decision-making in an uncertainty context should take advantage of involving patients in deeper informational process to promote valid shared decision-making between patients/caregivers and healthcare professionals. This process of patient/caregiver empowerment is a priority in the context of rare diseases, as it encourages acquisition of information that will help improving patient-healthcare professional's interaction, and building a collaborative relationship. It is also a chance for healthcare professionals to learn about rare diseases from the perspective of patients.Engagement of patients and other stakeholders in clinical research may help to ensure that research efforts in rare diseases address relevant clinical questions and patient-centered health outcomes. However, the effectiveness of patient-engagement approaches, particularly for the study of rare diseases, has not been well studied.

Implementation of a virtual community of practice to promote the empowerment of middle-aged people with multimorbidity: study protocol of a randomised controlled trial.

INTRODUCTION: Empowering people living with multimorbidity (multiple chronic conditions) to gain greater confidence in managing their health can enhance their quality of life. Education focused on self-management is a key tool for fostering patient empowerment and is mostly provided on an individual basis. Virtual communities of practice (VCoP) present a unique opportunity for online education in chronic condition self-management within a social context. This research aims to evaluate the effectiveness/cost-effectiveness of individualised, online self-management education compared with VCoP among middle-aged individuals living with multiple chronic conditions. METHODS AND ANALYSIS: People aged 30-60, living with ≥2 chronic conditions and receiving care in primary care (PC) centres and outpatient hospital-based clinics in Madrid and Canary Islands will enrol in an 18-month parallel-design, blinded (intervention assessment and data analysts), pragmatic (adhering to the intention-to-treat principle), individually randomised trial. The trial will compare two 12-month web-based educational offers of identical content; one delivered individually (control) and the other with online social interaction (VCoP, intervention). Using repeated measures mixed linear models, with the patient as random effect and allocation groups and time per group as fixed effects, we will estimate between-arm differences in the change in Patient Activation Measure from baseline to 12 months (primary endpoint), including measurements at 6-month and 18-month follow-up. Other outcomes will include measures of depression and anxiety, treatment burden, quality of life. In addition to a process evaluation of the VCoP, we will conduct an economic evaluation estimating the relative cost-effectiveness of the VCoP from the perspectives of both the National Health System and the Community. ETHICS AND DISSEMINATION: The trial was approved by Clinical Research Ethics Committees of Gregorio Marañón University Hospital in Madrid/Nuestra Señora Candelaria University Hospital in Santa Cruz de Tenerife. The results will be disseminated through workshops, policy briefs, peer-reviewed publications and local/international conferences. TRIAL REGISTRATION NUMBER: NCT06046326.

Digital Health Literacy and Person-Centred Care: Co-Creation of a Massive Open Online Course for Women with Breast Cancer.

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.

Main Challenges of Incorporating Environmental Impacts in the Economic Evaluation of Health Technology Assessment: A Scoping Review.

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.

Ethical, Legal, Organisational and Social Issues of Teleneurology: A Scoping Review.

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.

Shared decision-making in Spain in 2022: An updated revision of the current situation.

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.

Barriers and Facilitating Factors of Adherence to Antidepressant Treatments: An Exploratory Qualitative Study with Patients and Psychiatrists.

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.

[Perception of risk factors for cancer in the Spanish population]. / Percepción de los factores de riesgo de cáncer por la población española.

OBJECTIVE: 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.

[Promoting citizen participation in healthcare through PyDEsalud.com]. / Promoción de la participación ciudadana en cuidados de salud a través de PyDEsalud.com.

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.

[Shared decision making in breast cancer. Womens' attitudes]. / Actitudes de las mujeres diagnosticadas de cáncer de mama frente a la toma de decisiones compartida.

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.

[Information needs and internet use in patients with breast cancer in Spain]. / Necesidades de información y uso de Internet en pacientes con cáncer de mama en España.

OBJECTIVE: 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. METHOD: 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. RESULTS: 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. CONCLUSIONS: Users need access to web sites with high quality health information, adapted to their needs and objectives.