The Experience With Health Care of Patients With Inflammatory Arthritis: A Cross-sectional Survey Using the Instrument to Evaluate the Experience of Patients With Chronic Diseases.

BACKGROUND: Patients' experience with health care is becoming a key component for the provision of a patient-centered health care model. The aim of this study was to assess the experience with health care of patients with inflammatory arthritis and patient- and health care-related factors. METHODS: Patients responded to an anonymous survey provided by their treating clinical teams. The survey comprised the validated 12-item IEXPAC (Instrument to Evaluate the EXperience of PAtients with Chronic diseases) tool and demographic variables and health care-related characteristics that may affect patients' experience. RESULTS: A total of 359 of 625 surveys were returned (response rate, 57.4%). Overall, patient responses were positive (>60% gave "always/mostly" answers) for statements assessing the interaction between patients and health care professionals or patient self-management following health care professional guidance. However, positive patient responses for items regarding patient interaction with the health care system via the internet or with other patients were less than 13%. Only 25.6% of patients who had been hospitalized reported receiving a follow-up call or visit following discharge. In the bivariate analysis, experience scores were higher (better experience) in men, those seen by fewer specialists or by the same physician, and in patients treated with a fewer number of drugs or with subcutaneous/intravenous drugs. Multivariate analyses identified regular follow-up by the same physician and treatment with subcutaneous/intravenous drugs as variables associated with a better patient experience. CONCLUSIONS: This study identifies areas of care for patients with inflammatory arthritis with the potential to improve patients' experience and highlights the importance of patient-physician relationships and comprehensive patient care.

Organisational and Clinical Approach to Osteoporosis in Rheumatology: OP-SER-Excellence Survey and Consensus. / Enfoque organizativo y clínico de la osteoporosis en reumatología: encuesta y consenso OP-SER-Excellence.

OBJECTIVE: To determine and analyse the organisational approach adopted by Spanish rheumatologists to osteoporosis (OP) to define strategic priorities. MATERIAL AND METHOD: A group of experts designed a questionnaire on OP in the rheumatologist practice. The survey was sent to the Spanish Society of Rheumatology (SER) members. Through the Delphi round, strategic priorities were agreed upon in OP. RESULTS: The priorities are: 1) The SER should promote the inclusion of OP in 100% of the services and expand the training offer; 2) Rheumatology services should promote the role of the nurse in OP, promote quality indicators and referral protocols agreed with primary care in addition to promoting their training in this area; 3) The SER and Rheumatology services should promote electronic consultation, OP monographic clinics and participation in Fracture Liaison Service units. CONCLUSIONS: Strategic priorities in OP help identify areas of improvement at organisational, structural and quality standards level in this pathology.

Different Associations of Intentional and Non-Intentional Non-Adherence Behaviors with Patient Experience with Healthcare and Patient Beliefs in Medications: A Survey of Patients with Chronic Conditions.

PURPOSE: To investigate relationships between intentional and non-intentional non-adherence behaviors and patient experience with healthcare and beliefs in medications. PATIENTS AND METHODS: This is a post hoc analysis of a cross-sectional anonymous survey distributed between May and September 2017 to patients with rheumatic disease, inflammatory bowel disease, HIV infection or diabetes mellitus from outpatient and primary care clinics in Spain. Patients answered five questions about non-adherence behaviors and completed questionnaires on their experience with healthcare (IEXPAC: Instrument to Evaluate the EXperience of PAtients with Chronic diseases) and beliefs about medicines (BMQ: Beliefs About Medicines Questionnaire). RESULTS: Among 1530 respondents, 53% showed ≥1 non-adherence behavior; 35% had ≥1 non-intentional non-adherence behavior, and 33% had ≥1 intentional non-adherence behavior. Patients with HIV infection had the lowest frequency of intentional non-adherence behaviors. Non-intentional non-adherence was associated with patient beliefs (inversely with BMQ overall score) and patient experiences (inversely with IEXPAC Factor 3 sub-score, self-management). Intentional non-adherence was strongly associated with beliefs scores (directly with BMQ concerns and inversely with BMQ necessity sub-score) and inversely associated with HIV infection. CONCLUSION: The different associations of intentional and non-intentional non-adherence behaviors found in this study help to understand how patient experiences and beliefs influence medical non-adherence, and in the development of strategies for reducing non-adherence.

Patients' perceptions on shared decision making during prescription of subcutaneous biological drug treatments for inflammatory arthritis: The RHEU-LIFE survey.

OBJECTIVES: The aim of this study was to explore the preferences of patients with rheumatic diseases and their perceived experience regarding participation in shared decision making (SDM) when they were prescribed a subcutaneous (SC) biological drug. METHODS: A printed survey was handed to 1,000 patients with inflammatory rheumatic diseases treated with SC biological drug. The survey included closed questions about preferences regarding decision making and about patients' experience when they were prescribed an SC biological drug. Descriptive statistics were performed with stratification by patient profiles, using chi-square for comparisons between groups. RESULTS: A total of 592 surveys were received (response rate 59.2%, mean age 51.7 years, 57.6% women). Some 28.2% of patients reported preferring to take part in treatment selection, a percentage that was higher in younger patients, in those with higher academic degree and in those who search information in sources different to that of health care professionals. Over half of patients (56.3%) perceived that the rheumatologist considered their opinion when prescribing an SC biological drug, a percentage higher in younger people. Only in 40.8% of cases did the patients' preference match their perception of their participation in the process. No differences were observed by sex, disease or number of biologics. CONCLUSIONS: Patients with inflammatory rheumatic diseases want information about their treatments but mostly leave the prescription decision to the rheumatologist. Younger people, or those with higher academic degree, more often want to participate in the SDM. There are discrepancies between patient preferences and perceptions of this process.

Influence of mesenchymal stem cell-derived extracellular vesicles in vitro and their role in ageing.

INTRODUCTION: This study assessed whether mesenchymal stem cell (MSC)-derived extracellular vesicles influenced ageing and pluripotency markers in cell cultures where they are added. METHODS: MSC-derived extracellular vesicles from old and young rat bone marrows were isolated by ultracentrifugation and were characterised by western blotting, nanoparticle tracking analysis (NTA) and transmission electron microscopy (TEM). They were added to young and old MSC cultures. Real-time quantitative reverse transcription polymerase chain reactions and western blot analysis were performed to check the markers of ageing (vinculin and lamin A), pluripotency markers (Nanog and Oct4) and components of the mTOR signalling pathway (Rictor, Raptor, AKT and mTOR) in these cell populations. Subsequently, microRNA (miR)-188-3p expression was transiently inhibited in young MSCs to demonstrate the influence of mTOR2 on MSC ageing. RESULTS: Incubation with young MSC-derived extracellular vesicles decreased the levels of ageing markers and components of the mTOR pathway and increased the pluripotency markers from old MSC populations. By contrast, incubation of young MSCs with old MSC-derived extracellular vesicles generated the reverse effects. Inhibition of miR-188-3p expression in young MSCs produced extracellular vesicles that when incubated with old MSCs produced an increase in the levels of Rictor, as well as a decrease of phosphor-AKT, as indicated by a significant decrease in beta-galactosidase staining. CONCLUSIONS: MSC-derived extracellular vesicles affected the behaviour of MSC cultures, based on their composition, which could be modified in vitro. These experiments represented the basis for the development of new therapies against ageing-associated diseases using MSC-derived extracellular vesicles.

Association between non-adherence behaviors, patients' experience with healthcare and beliefs in medications: a survey of patients with different chronic conditions.

Objective: The objective of the current work was to assess the frequency of non-adherence behaviors and potential association with patients' experience with healthcare and beliefs in medicines self-reported by patients with four different chronic conditions.Methods: Patients responded anonymously to a survey comprising five non-adherence behaviors (based on physician and patient input), an assessment of patients' experience with healthcare using the validated Instrument to Evaluate the EXperience of PAtients with Chronic diseases (IEXPAC), and a validated Spanish version of the Beliefs about Medicines Questionnaire (BMQ). Associations of non-adherence behavior were analyzed using logistic regression models.Results: Of 1530 respondents, 53.1% reported ≥1 non-adherence behavior. Non-adherence rates were 59.8% in diabetes mellitus (DM), 56.0% in rheumatic disease, 55.6% in inflammatory bowel disease, and 42.8% in human immunodeficiency virus (HIV) infection patients (p < .001). IEXPAC and BMQ scores were higher in adherent vs. non-adherent patients. In multivariate analysis, non-adherence behavior was strongly associated with lower overall BMQ, lower BMQ Necessity scores and higher BMQ Concerns scores (p < .001 for all), and with a lower IEXPAC self-management score (p = .007), but not with the overall IEXPAC score. Non-adherence was more frequent in DM patients compared with HIV infection patients (p < .001).Conclusions: Patients' beliefs in medicines-a lower perception for the necessity of medication, and higher concerns in taking medication-and low patient self-management experience score were associated with non-adherence behavior. These are modifiable aspects that need to be addressed to increase medication adherence in chronic disease.

The Influence of Patient Experience with Healthcare on the Health-Related Quality of Life of People Living with HIV: An Observational Cross-Sectional Survey.

INTRODUCTION: Patient experience is central to the quality of healthcare delivery, showing positive associations with several outcome measures. The main objectives of this study are to analyze the influence of patient experience on the health-related quality of life in people living with HIV and the role played by treatment complexity and clinical care. METHODS: We conducted a cross-sectional survey with 467 patients with HIV. We used the Instrument for Evaluation of the Experience of Chronic Patients and the Health-related Quality of Life Questionnaire (EQ-5D-5L). We analyzed a predictive model through the partial least squares (PLS) method. RESULTS: The patient self-management scores showed the highest positive relationship with the patient's health-related quality of life (ß = 0.24, ß = 0.32, p < 0.0001). Patients' treatment complexity had a negative influence on health-related quality of life (ß = - 0.21, ß = - 0.28, p < 0.0001). The complexity of clinical care had negative effects on health-related quality of life, both directly (ß = - 0.37, ß = - 0.19, p < 0.0001) and through its negative influence on the productive interactions with healthcare professionals (ß = - 0.21, p < 0.0001) and patient self-management factors (ß = - 0.21, p < 0.0001). The effects of patient experience dimensions on their health-related quality of life were higher in people living with HIV > 50 years old (p < 0.05). CONCLUSIONS: Patient experience mainly influenced the health-related quality of life of older people living with HIV. The treatment and clinical care complexity played an important role in degrading the patients' experience and their quality of life. More integrated care would benefit the health-related quality of life of people living with HIV. FUNDING: This project was funded by Merck Sharp & Dohme, Spain.

The experience of inflammatory bowel disease patients with healthcare: A survey with the IEXPAC instrument.

To assess inflammatory bowel disease (IBD) patients' experience of chronic illness care and the relationship with demographic and healthcare-related characteristics.This cross-sectional survey used the Instrument to Evaluate the EXperience of PAtients with Chronic diseases (IEXPAC) questionnaire to identify parameters associated with a better healthcare experience for IBD patients. IEXPAC questionnaire responses are grouped into 3 factors - productive interactions, new relational model, and patient self-management, scoring from 0 (worst) to 10 (best experience). Scores were analyzed by bivariate comparisons and multiple linear regression models.Surveys were returned by 341 of 575 patients (59.3%, mean age 46.8 (12.9) years, 48.2% women). Mean (SD) IEXPAC score was 5.9 (2.0); scores were higher for the productive interactions (7.7) and patient self-management factors (6.7) and much lower for the new relational model factor (2.2). Follow-up by a nurse, being seen by the same physician, and being treated with a lower number of medicines were associated with higher (better) overall patient experience score, and higher productive interactions and self-management factor scores. A higher productive interactions score was also associated with patients receiving medication subcutaneously or intravenously. Higher new relational model scores were associated with follow-up by a nurse, affiliation to a patients' association, receiving help from others for healthcare, a lower number of medicines and a higher educational level.In patients with IBD, a better overall patient experience was associated with follow-up by a nurse, being seen by the same physician, and being treated with a lower number of medicines.

Perceptions of patients with rheumatic diseases treated with subcutaneous biologicals on their level of information: RHEU-LIFE Survey. / Percepciones de los pacientes con enfermedades reumáticas tratados con biológicos subcutáneos sobre su nivel de información. Encuesta RHEU-LIFE.

OBJECTIVE: To investigate, in Spanish patients with rheumatic diseases treated with subcutaneous biological drugs, their sources of information, which sources they consider most relevant, and their satisfaction with the information received in the hospital. METHODS: Rheumatologists from 50 hospitals handed out an anonymous survey to 20 consecutive patients with rheumatoid arthritis, axial spondyloarthritis or psoriatic arthritis treated with subcutaneous biologicals. The survey was developed ad hoc by 4 rheumatologists and 3 patients, and included questions with closed-ended responses on sources of information and satisfaction. RESULTS: The survey was handed-out to 1,000 patients, 592 of whom completed it (response rate: 59.2%). The rheumatologist was mentioned as the most important source of information (75%), followed by the primary care physician, nurses, and electronic resources; 45.2% received oral and written information about the biological, 46.1% oral only, and 6.0% written only; 8.7% stated that they had not been taught to inject the biological. The percentage of patients satisfied with the information received was high (87.2%), although the satisfaction was lower in relation to safety. If the information came from the rheumatologist, the satisfaction was higher (89.6%) than when coming from other sources (59.6%; P<.001). Satisfaction was also higher if the information was provided orally and written (92.8%) than if provided only orally (86.1%; P=.013); 45.2% reported having sought information from sources outside the hospital. CONCLUSIONS: The rheumatologist is key in transmitting satisfactory information on biological treatment to patients. He or she must also act as a guide, since a high percentage of patients seeks information in other different sources.

Healthcare Experience and their Relationship with Demographic, Disease and Healthcare-Related Variables: A Cross-Sectional Survey of Patients with Chronic Diseases Using the IEXPAC Scale.

BACKGROUND: Patient experience is acknowledged as a principal aspect of quality healthcare delivery, and it has implications with regard to outcomes. OBJECTIVES: Our objective was to evaluate the healthcare experience of patients with chronic diseases to identify patient-perceived healthcare gaps and to assess the influence of demographic and healthcare-related variables on patient experiences. METHODS: A cross-sectional survey was delivered to adult patients with chronic diseases: diabetes mellitus (DM), human immunodeficiency virus (HIV) infection, inflammatory bowel disease (IBD) or rheumatic diseases. Patient experiences were assessed with the Instrument for Evaluation of the Experience of Chronic Patients (IEXPAC) questionnaire, with possible scores ranging from 0 (worst) to 10 (best experience). RESULTS: Of the 2474 patients handed the survey, 1618 returned it (response rate 65.4%). Patients identified gaps in healthcare related mainly to access to reliable information and services, interaction with other patients and continuity of healthcare after hospital discharge. The mean ± standard deviation (SD) IEXPAC score was 6.0 ± 1.9 and was higher for patients with HIV (6.6 ± 1.7) than for those with rheumatic disease (5.5 ± 2.0), IBD (5.9 ± 2.0) or DM (5.9 ± 1.9) (p < 0.001). In multivariate models, better overall IEXPAC experience was associated with follow-up by the same physician, follow-up by a nurse, receiving healthcare support from others and treatment with subcutaneous or intravenous drugs. The multivariate model that confirmed patients with HIV or DM had better experience than did those with rheumatic diseases. CONCLUSIONS: Through IEXPAC, patients identified aspects for healthcare quality improvements and circumstances associated with better experience, which may permit greater redirection of healthcare toward patient-centered goals while facilitating improvements in social care and long-term healthcare quality.

Next-Generation Sequencing and Quantitative Proteomics of Hutchinson-Gilford progeria syndrome-derived cells point to a role of nucleotide metabolism in premature aging.

Hutchinson-Gilford progeria syndrome (HGPS) is a very rare fatal disease characterized for accelerated aging. Although the causal agent, a point mutation in LMNA gene, was identified more than a decade ago, the molecular mechanisms underlying HGPS are still not fully understood and, currently, there is no cure for the patients, which die at a mean age of thirteen. With the aim of unraveling non-previously altered molecular pathways in the premature aging process, human cell lines from HGPS patients and from healthy parental controls were studied in parallel using Next-Generation Sequencing (RNAseq) and High-Resolution Quantitative Proteomics (iTRAQ) techniques. After selection of significant proteins and transcripts and crosschecking of the results a small set of protein/transcript pairs were chosen for validation. One of those proteins, ribose-phosphate pyrophosphokinase 1 (PRPS1), is essential for nucleotide synthesis. PRPS1 loss-of-function mutants present lower levels of purine. PRPS1 protein and transcript levels are detected as significantly decreased in HGPS cell lines vs. healthy parental controls. This modulation was orthogonally confirmed by targeted techniques in cell lines and also in an animal model of Progeria, the ZMPSTE24 knock-out mouse. In addition, functional experiments through supplementation with S-adenosyl-methionine (SAMe), a metabolite that is an alternative source of purine, were done. Results indicate that SAMe has a positive effect in the proliferative capacity and reduces senescence-associated Beta-galactosidase staining of the HPGS cell lines. Altogether, our data suggests that nucleotide and, specifically, purine-metabolism, are altered in premature aging, opening a new window for the therapeutic treatment of the disease.

CD105+-mesenchymal stem cells migrate into osteoarthritis joint: An animal model.

Mesenchymal stem cells are being the focus of connective tissue technology and regenerative medicine, presenting a good choice cell source for improving old and well recognized techniques of cartilage defect repair. For instance, the autologous chondrocyte transplantation using new concepts of regenerative medicine. The present study investigated the risk of xenogenicity of human synovial membrane-derived MSCs, injected into the monkeys using intravenous and intra-articular administration. The animal models used were adult monkeys Rhesus which had been injured into the left knee to create an Osteoarthritis (OA) animal model. CD105+-MSCs were injected twice into the OA monkeys with an interval of one week between them. The animals were euthanized one month after treatment. Immunohistochemistry analysis of different organs: spleen, heart, fat, liver, gut, pancreas, lung, skeletal muscle and kidney from the animals revealed that CD105+-MSCs migrated towards the injured knee joint. MSCs naive were found statistically significant increased in the injured knee in front of healthy one. CD105+-MSCs were negatives for CD68 and the area where CD105+-MSCs were found presented SDF-1 increased levels in front of healthy knee. We concluded that a characterized MSCs subset could be a safe alternative for cell therapy in clearly localized pathologies.

Perceptions of patients with rheumatic diseases on the impact on daily life and satisfaction with their medications: RHEU-LIFE, a survey to patients treated with subcutaneous biological products.

OBJECTIVE: The aim of this study was to explore perceptions of patients with rheumatic diseases treated with subcutaneous (SC) biological drugs on the impact on daily life and satisfaction with current therapy, including preferred attributes. METHODS: A survey was developed ad hoc by four rheumatologists and three patients, including Likert questions on the impact of disease and treatment on daily life and preferred attributes of treatment. Rheumatologists from 50 participating centers were instructed to handout the survey to 20 consecutive patients with rheumatoid arthritis (RA), axial spondyloarthritis (ax-SpA), or psoriatic arthritis (PsA) receiving SC biological drugs. Patients responded to the survey at home and sent it to a central facility by prepaid mail. RESULTS: A total of 592 patients returned the survey (response rate: 59.2%), 51.4% of whom had RA, 23.8% had ax-SpA, and 19.6% had PsA. Patients reported moderate-to-severe impact of their disease on their quality of life (QoL) (51.9%), work/daily activities (49.2%), emotional well-being (41.0%), personal relationships (26.0%), and close relatives' life (32.3%); 30%-50% patients reported seldom/never being inquired about these aspects by their rheumatologists. Treatment attributes ranked as most important were the normalization of QoL (43.6%) and the relief from symptoms (35.2%). The satisfaction with their current antirheumatic therapy was high (>80% were "satisfied" or "very satisfied"), despite moderate/severe impact of disease. CONCLUSION: Patients with rheumatic diseases on SC biological therapy perceive a high disease impact on different aspects of daily life, despite being highly satisfied with their treatment; the perception is that physicians do not frequently address personal problems. Normalization of QoL is the most important attribute of therapies to patients.

The teaching of rheumatology at the University. The journey from teacher based to student-centered learning.

In recent years, university education has undergone profound changes as a result of the creation of the European Space for Higher Education. It has gone from a teacher-centered model, based on the transmission of knowledge through lectures, to being student-centered, based on the acquisition of skills and attaching great importance to independent learning. This transformation involves the need to reorganize academic activity and employ new teaching tools, such as active learning methodologies, more in line with current requirements. In this article, the backbones of the European Space for Higher Education are presented, and diverse experiences of teaching innovation described under Reumacademia and from three Spanish universities.

[What do rheumatology residents think of their training? A survey of the National Rheumatology Commission]. / ¿Qué opinan los residentes de reumatología sobre su formación? Una encuesta de la Comisión Nacional de Reumatología.

The National Commission of Rheumatology has developed a satisfaction survey for residents concerning their training period. 37% of the 176 invited to participate answered the survey. 71% said they were satisfied or very satisfied with the influence of the assistance activities during their training. 38% were dissatisfied or very dissatisfied with supervision by staff. 39% were dissatisfied or very dissatisfied with their training in polarized light microscopy. 52% said no regular meetings were structured to monitor their training. 66% said that there had been no effective evaluation of their training. 39% were dissatisfied or very dissatisfied on the tools they were given to publish at their teaching unit. Overall satisfaction on classroom training for residents of Rheumatology is high. There are opportunities for improvement relating to training in certain techniques, monitoring and evaluation of the training period and training in research skills.

[Formation of specialists in rheumatology: Accreditation criteria]. / Criterios de acreditación para la formación de especialistas de reumatología.

The National Rheumatology Board is responsible for postgraduate formation in rheumatology. Herein we present the new criteria for accreditation of teaching units. These criterion contemplate four domains, namely: structure, clinical work, teaching and research. Each domain is divided in subdomains and items. Some of them are of an obligatory nature. This document serves as reference for future applications. The document may be reviewed in the future.