Recommendations on chronic diseases management emphasise the need to consider patient perspectives and shared decision-making. Discrepancies between patients and physicians' perspectives on treatment ...objectives, disease activity, preferences and treatment have been described for immune-mediate inflammatory diseases. These differences could result on patient dissatisfaction and negatively affect outcomes. To describe the degree of patient-physician discrepancy in three chronic immune-mediated inflammatory diseases (rheumatoid arthritis RA, psoriatic arthritis PsA and psoriasis Ps), identifying the main areas of discrepancy and possible predictor factors. A total of 21 studies were included (13 RA; 3 PsA; 4 Ps; 1 RA, Ps, and Axial Spondyloarthritis). A significant and heterogeneous degree of discrepancy between patients and physicians was found, regarding disease activity, treatment, clinical expectations, remission concept, and patient-physician relationship. In RA and PsA, studies were mainly focused on the evaluation of disease activity, which is perceived as higher from the patient's than the physician's perspective, with the discrepancy determined by factors such as patient's perception of pain and fatigue. In Ps, studies were focused on treatment satisfaction and patient-physician relationship, showing a lower degree of discrepancy in the satisfaction regarding these aspects.
The aim of this study was to assess health economics evidence published to date on malnutrition costs in institutionalized or community-dwelling older adults.
A systematic search of the literature ...published until December 2013 was performed using standard literature, international and national electronic databases, including MedLine/PubMed, Cochrane Library, ISI WOK, SCOPUS, MEDES, IBECS, and Google Scholar. Publications identified referred to the economic burden and use of medical resources associated with malnutrition (or risk of malnutrition) in institutionalized or community-dwelling older adults, written in either English or Spanish. Costs were updated to 2014 (€).
A total of 9 studies of 46 initially retrieved met the preestablished criteria and were submitted to thorough scrutiny. All publications reviewed involved studies conducted in Europe, and the results regarding the contents of all the studies showed that total costs associated with malnutrition in institutionalized and community-dwelling older adults were considerably higher than those of well-nourished ones, mainly due to a higher use of health care resources (GP consultations, hospitalizations, health care monitoring, and treatments). Interventions to reduce the prevalence of malnutrition, such as the use of oral nutritional supplements, showed an important decrease in-hospital admissions and medical visits.
Malnutrition is associated with higher health care costs in institutionalized or community-dwelling older adults. The adoption of nutritional interventions, such as oral nutritional supplements, may have an important impact in reducing annual health care costs per patient.
Despite the wide use of the Excited Component of the Positive and Negative Syndrome Scale (PANSS-EC) in a clinical setting to assess agitated patients, a validation study to evaluate its psychometric ...properties was missing.
Data from the observational NATURA study were used. This research describes trends in the use of treatments in patients with acute psychotic episodes and agitation seen in emergency departments. Exploratory principal component factor analysis was performed. Spearman's correlation and regression analyses (linear regression model) as well as equipercentile linking of Clinical Global Impression of Severity (CGI-S), Agitation and Calmness Evaluation Scale (ACES) and PANSS-EC items were conducted to examine the scale's diagnostic validity. Furthermore, reliability (Cronbach's alpha) and responsiveness were evaluated.
Factor analysis resulted in one factor being retained according to eigenvalue ≥1. At admission, the PANSS-EC and CGI-S were found to be linearly related, with an average increase of 3.4 points (p < 0.001) on the PANSS-EC for each additional CGI-S point. The PANSS-EC and ACES were found to be linearly and inversely related, with an average decrease of 5.5 points (p < 0.001) on the PANSS-EC for each additional point. The equipercentile method shows the poor sensitivity of the ACES scale. Cronbach's alpha was 0.86 and effect size was 1.44.
The factorial analyses confirm the unifactorial structure of the PANSS-EC subscale. The PANSS-EC showed a strong linear correlation with rating scales such as CGI-S and ACES. PANSS-EC has also shown an excellent capacity to detect real changes in agitated patients.
Purpose: To determine the perspective of patients and professionals in Assisted Reproduction Units (ARU) on the importance of assisted reproductive techniques (ART) compared to other elective ...procedures, to highlight the relevance of ART as an elective procedure and the impact of delayed interventions on patients. Design, Patients and Methods: An observational, descriptive, cross-sectional, online survey-based study was conducted in infertility patients and partners (n=98) and ARU healthcare professionals (n=83). The survey included a best-worst scaling (BWS) experiment and an ad-hoc questionnaire to analyze the pandemic impact on ART management and infertility patients in Spain. In the BWS, each respondent established priorities choosing which patient profile should be rated as the highest and lowest priority profile on a waiting list. To understand the importance that they give to assisted reproduction compared to other procedures, three very common elective procedures involving different patient profiles were selected: cataract surgery, knee arthroplasty, and varicose vein surgery. For each procedure, three hypothetical patient profiles corresponding to three different degrees of severity on a waiting list were designed. Results: Patients attributed greater importance to ART profiles (BWS score: patients 0.14 vs professionals -0.05; p<0.01) whereas professionals prioritized cataract surgery (patients 0.06 vs professionals 0.23; p<0.01). Concerning the profile severity, more severe profiles were prioritized in all procedures by both groups. Patients' and professionals' perspectives on the impact of the pandemic were similar, with exceptions: information received for resuming ART; health care provision in crisis situations; and reduction of parenting options. The pandemic affected patients' ability to conceive a child (70.4% of those surveyed), their psychological well-being (75.5%), and partner, social, and work relationships (69.4%). Conclusion: Preference studies involving patients and professionals can provide important information to define framework criteria for the management of waiting lists for elective procedures, and to prioritize interventions during pandemic periods. The pandemic impact on infertility patients highlights the relevance of developing measures and strategies to cope with similar future situations in the most appropriate way. Keywords: assisted reproduction, coronavirus disease, fertility, patients' perspective, best-worst scaling
To estimate the magnitude in which Parkinson's disease (PD) symptoms and health- related quality of life (HRQoL) determined PD costs over a 4-year period.
Data collected during 3-month, each year, ...for 4 years, from the ELEP study, included sociodemographic, clinical and use of resources information. Costs were calculated yearly, as mean 3-month costs/patient and updated to Spanish €, 2012. Mixed linear models were performed to analyze total, direct and indirect costs based on symptoms and HRQoL.
One-hundred and seventy four patients were included. Mean (SD) age: 63 (11) years, mean (SD) disease duration: 8 (6) years. Ninety-three percent were HY I, II or III (mild or moderate disease). Forty-nine percent remained in the same stage during the study period. Clinical evaluation and HRQoL scales showed relatively slight changes over time, demonstrating a stable group overall. Mean (SD) PD total costs augmented 92.5%, from € 2,082.17 (€ 2,889.86) in year 1 to € 4,008.6 (€ 7,757.35) in year 4. Total, direct and indirect cost incremented 45.96%, 35.63%, and 69.69% for mild disease, respectively, whereas increased 166.52% for total, 55.68% for direct and 347.85% for indirect cost in patients with moderate PD. For severe patients, cost remained almost the same throughout the study. For each additional point in the SCOPA-Motor scale total costs increased € 75.72 (p = 0.0174); for each additional point on SCOPA-Motor and the SCOPA-COG, direct costs incremented € 49.21 (p = 0.0094) and € 44.81 (p = 0.0404), respectively; and for each extra point on the pain scale, indirect costs increased € 16.31 (p = 0.0228).
PD is an expensive disease in Spain. Disease progression and severity as well as motor and cognitive dysfunctions are major drivers of costs increments. Therapeutic measures aimed at controlling progression and symptoms could help contain disease expenses.
A systematic, standardized collection of health outcomes during patient treatment and follow-up, relevant from the perspective of all stakeholders, is a crucial step toward effective and efficient ...disease management. This project aimed to define a standard set of health outcomes for patients with squamous cell carcinoma of the head and neck (SCCHN).
The project was led and coordinated by a scientific committee (SC). It comprised: (1) a literature review (to identify variables used during SCCHN management); (2) 1
-SC meeting (to select the variables for presentation during nominal groups-NG); (3) five NG (n=42 experts) and four interviews with patients (to reach consensus on the variables for inclusion); and (4) final-SC meeting (to review the results of NG ensuring consensus on the variables where consensus was not reached).
Experts agreed to include the following variables in the standard set: treatment-related (treatment intent and type, response to treatment, treatment toxicity/complication, treatment completion), degree of health (performance status, patient-reported health status, pain, dysphonia, feeding and speech limitations, body image alteration, tracheotomy), survival (overall and progression-free survival, cause of death), nutritional (weight, nutritional intervention), other variables (smoking status, alcohol consumption, patient satisfaction with aftermath care, employment status), and case-mix variables (demographic, tumor-related, clinical and nutritional factors).
This project may pave the way to standardizing the collection of health outcomes in SCCHN and promote the incorporation of patients' perspective in its management. The information provided through the systematic compilation of this standard set may define strategies to achieve high-quality, patient-centered care.
Purpose:
Lung cancer (LC) and its treatment impose a significant burden on patients' life. However, patient-centered outcomes are rarely collected during patient follow-up. Filling this gap, the ...International Consortium for Health Outcomes Measurement (ICHOM) developed a standard set of variables for newly diagnosed LC patients. In order to facilitate the use of this standard set, the project aims to adapt it to the Spanish setting.
Methods:
The variables (instrument and periodicity) to be included in Spanish standard set were selected through consensus during 4 nominal groups (13 oncologists, 14 hospital pharmacists, 4 hospital managers and 3 LC patients), under the supervision of a Scientific Committee (1 oncologist, 3 hospital pharmacists, 2 LC patients advocates).
Results:
The variables agreed upon included: (1) case-mix: demographic age, sex, education and social-family support, clinical weight loss, smoking status, comorbidities (Charlson index), pulmonary function (FEV-1), tumor histology, clinical, and pathological stage (TNM), EGFR, ALK, ROS-1, PD-L1 and treatment factors intent and completion and (2) outcomes: degree of health performance status (ECOG) and quality-of-life (EQ-5D, LCSS), survival overall survival and cause of death, quality of death place of death, end-of-life care and palliative care, death aligned with living will, treatment complications, and others date of diagnosis and treatment initiation, productivity loss (sick leave).
Conclusion:
The adaptation of ICHOM standard set to the Spanish setting pave the way to standardize the collection of variables in LC.
Background and Aims
Osteoporosis is a systemic skeletal disease characterized by low bone mass and microstructural deterioration of bone tissues, resulting in bone fragility and increased fracture ...risk. It is the most common bone‐related disease in the population. However, the proportion of patients who start treatment but discontinue it during the first year is very high (around 50%). Endeavors are made to promote patient participation in treatment by implementing patient decision aids (PDA), whose function is to help the patient make disease‐related decisions. We aim to summarize the characteristics of the currently available PDA for osteoporosis, as well as deciding factors.
Methods
Comprehensive review of the literature.
Results
Currently, eleven PDAs can be found for osteoporosis. These PDA have different characteristics or options such as information about treatments tailored to patient needs, graphic information of the results (to facilitate understanding), personal histories (learning), tests to check the knowledge acquired, provision of evidence, clinical practice guidelines or a final summary to share with their doctor. Only five of these PDAs can be considered complete since they provide relevant disease information and therapeutic options to the patient, promote patient's reflection and foment patient‐physician discussion.
Conclusions
This study provides an update on the current state of decision making on osteoporosis and available PDA, which can help engage the patient through shared decision‐making by considering, among other things, patient preferences. Physicians should consider PDA, as it may promote adherence and effectiveness of treatment.
Introduction
This study describes the epidemiological, clinical, patient-reported and economic burden of inflammatory bowel disease (IBD), including Crohn’s disease (CD) and ulcerative colitis (UC), ...in Spain.
Methods
A systematic review was performed of observational studies reporting the epidemiological, clinical, patient-reported and economic burden of IBD in the Spanish population, from 2011 to 2021. Original articles and conference abstracts published in English or Spanish were eligible.
Results
A total of 45 publications were included in the review. The incidence of IBD in adults ranged from 9.6 to 44.3 per 100,000 inhabitants (4.6 to 18.5 for CD and 3.4 to 26.5 for UC). The incidence increased between 1.5- and twofold from 2000 to 2016 (regionally). Up to 6.0% (CD) and 3.0% (UC) IBD-associated mortality was reported. Disease onset predominantly occurs between 30 and 40 years (more delayed for UC than CD). Most frequently reported gastrointestinal manifestations are rectal bleeding in UC and weight loss in CD. Extraintestinal manifestations (EIM) have been described in up to 47.4% of patients with CD and 48.1% of patients with UC. Psychiatric comorbidities were frequently reported in both CD and UC (depression up to 20% and anxiety up to 11%). Reduced health-related quality of life (HRQoL) compared to the general population was reported. Significant symptomatology was associated with high levels of anxiety, depression, stress and lower HRQoL. Main healthcare resources reported were emergency department visits (24.0%), hospitalization (14.7%), surgery (up to 11%) and use of biologics (up to 60%), especially in CD. Direct and indirect annual costs per patient with UC were €1754.1 and €399.3, respectively.
Conclusion
Patients with CD and UC present a high disease burden which negatively impacts their HRQoL, leading to elevated use of resources.
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