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Article ; Online: Health-Related Quality of Life and Perceived Burden of Informal Caregivers of Patients with Rare Diseases in Selected European Countries

Cristina Valcárcel-Nazco / Yolanda Ramallo-Fariña / Renata Linertová / Juan Manuel Ramos-Goñi / Lidia García-Pérez / Pedro Serrano-Aguilar

International Journal of Environmental Research and Public Health, Vol 19, Iss 8208, p

2022 Volume 8208

Abstract: Most of rare disease (RD) patients are assisted in their homes by their family as informal caregivers, causing a substantial burden among family members devoted to care. The role of informal caregivers has been associated with increased levels of stress, ...

Abstract	Most of rare disease (RD) patients are assisted in their homes by their family as informal caregivers, causing a substantial burden among family members devoted to care. The role of informal caregivers has been associated with increased levels of stress, poor physical/mental health and impaired HRQOL. The present study assessed the impact on HRQOL and perceived burden of long-term informal caregiving, as well as the inter-relationships of individuals affected by different RD in six European countries, taking advantage of the data provided by the BURQOL-RD project (France, Germany, Italy, Spain, Sweden and UK). Correlation analysis was used to explore the relation between caregiver HRQOL and caregiver burden (Zarit Burden Interview). Multinomial logistic regression models were used to explore the role of explanatory variables on each domain of caregivers HRQOL measured by EQ-5D. Caregivers’ HRQOL is inversely correlated with burden of caring. Mobility dimension of EQ-5D was significantly associated with patients age, time devoted to care by secondary caregivers, patient gender and patient utility index. Patients’ age, burden scores and patient utility index significantly predict the capacity of caregivers to perform activities of daily living. Employed caregivers are less likely of reporting ‘slight problems’ in pain/discomfort dimensions than unemployed caregivers. The EQ-5D instrument is sensitive to measure differences in HRQOL between caregivers with different levels of burden of care.
Keywords	health-related quality of life ; EQ-5D-5L ; caregivers ; rare diseases ; informal care ; caregiver burden ; Medicine ; R
Subject code	360
Language	English
Publishing date	2022-07-01T00:00:00Z
Publisher	MDPI AG
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Pulmonary Function and Respiratory Diseases in Different Genotypes of Alpha-1 Antitrypsin Deficiency

José María Hernández Pérez / Juan José Suárez Sánchez / Claudia Viviana López Charry / Yolanda Ramallo Fariña / José Antonio Pérez Pérez

Turkish Thoracic Journal, Vol 23, Iss 6, Pp 376-

2022 Volume 382

Keywords	Internal medicine ; RC31-1245
Language	English
Publishing date	2022-11-01T00:00:00Z
Publisher	AVES
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Effects of Ozone Treatment on Health-Related Quality of Life and Toxicity Induced by Radiotherapy and Chemotherapy in Symptomatic Cancer Survivors

Bernardino Clavo / Angeles Cánovas-Molina / Yolanda Ramallo-Fariña / Mario Federico / Delvys Rodríguez-Abreu / Saray Galván / Ivone Ribeiro / Susana C. Marques da Silva / Minerva Navarro / Damián González-Beltrán / Juan A. Díaz-Garrido / Sara Cazorla-Rivero / Francisco Rodríguez-Esparragón / Pedro Serrano-Aguilar

International Journal of Environmental Research and Public Health, Vol 20, Iss 1479, p

2023 Volume 1479

Abstract: 1) Background: The continuous improvement in cancer treatment has led to improvement in patients’ survival and a subsequent increase in the number of cancer survivors living with adverse side effects of cancer treatments, sometimes with a high and ... ...

Abstract	(1) Background: The continuous improvement in cancer treatment has led to improvement in patients’ survival and a subsequent increase in the number of cancer survivors living with adverse side effects of cancer treatments, sometimes with a high and adverse impact on their health-related quality of life (HRQOL). Side effects of cancer treatments are frequently associated with chronic status of oxidative stress, inflammation, and/or ischemia. The potential for ozone treatment to modulate those processes and improve some of those adverse effects has previously been described. The aim of this study was to evaluate the effect of ozone treatment on the HRQOL and grade of toxicity in symptomatic cancer survivors. (2) Methods: Before and after ozone treatment, we assessed (i) the HRQOL (according to the EQ-5D-5L questionnaire) and (ii) the grade of toxicity (according to the Common Terminology Criteria for Adverse Events of the National Cancer Institute of EEUU (CTCAE v.5.0)) in 26 cancer survivors with chronic side effects of radiotherapy and chemotherapy. (3) Results: There was a significant ( p < 0.001) improvement in the EQ-5D-5L index as per the self-reported outcome evaluation of patients’ health status. All the dimensions of the EQ-5D-5L questionnaire (mobility, self-care, activities, pain/discomfort, and anxiety/depression) and the self-evaluation of the health status using the visual analog scale were significantly improved ( p < 0.05). The grade of toxicity was also significantly decreased ( p < 0.001). (4) Conclusions: In cancer survivors with chronic side effects of cancer treatment, ozone treatment can improve the grade of toxicity and the HRQOL. These results merit additional research. Further studies are ongoing.
Keywords	ozone therapy ; health-related quality of life ; chemotherapy-induced side effects ; radiation-induced side effects ; cancer survivors ; chemotherapy-induced neuropathy ; Medicine ; R
Subject code	150
Language	English
Publishing date	2023-01-01T00:00:00Z
Publisher	MDPI AG
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: The relationship between patient empowerment and related constructs, affective symptoms and quality of life in patients with type 2 diabetes

Andrea Duarte-Díaz / Lilisbeth Perestelo-Pérez / Amado Rivero-Santana / Wenceslao Peñate / Yolanda Álvarez-Pérez / Vanesa Ramos-García / Himar González-Pacheco / Libertad Goya-Arteaga / Miriam de Bonis-Braun / Silvia González-Martín / Yolanda Ramallo-Fariña / Carme Carrion / Pedro Serrano-Aguilar

Frontiers in Public Health, Vol

a systematic review and meta-analysis

2023 Volume 11

Abstract: IntroductionThe aim of this systematic review is to assess the relationship between patient empowerment and other empowerment-related constructs, and affective symptoms and quality of life in patients with type 2 diabetes.MethodsA systematic review of ... ...

Abstract	IntroductionThe aim of this systematic review is to assess the relationship between patient empowerment and other empowerment-related constructs, and affective symptoms and quality of life in patients with type 2 diabetes.MethodsA systematic review of the literature was conducted, according to the PRISMA guidelines. Studies addressing adult patients with type 2 diabetes and reporting the association between empowerment-related constructs and subjective measures of anxiety, depression and distress, as well as self-reported quality of life were included. The following electronic databases were consulted from inception to July 2022: Medline, Embase, PsycINFO, and Cochrane Library. The methodological quality of the included studies was analyzed using validated tools adapted to each study design. Meta-analyses of correlations were performed using an inverse variance restricted maximum likelihood random-effects.ResultsThe initial search yielded 2463 references and seventy-one studies were finally included. We found a weak-to-moderate inverse association between patient empowerment-related constructs and both anxiety (r = −0.22) and depression (r = −0.29). Moreover, empowerment-related constructs were moderately negatively correlated with distress (r = −0.31) and moderately positively correlated with general quality of life (r = 0.32). Small associations between empowerment-related constructs and both mental (r = 0.23) and physical quality of life (r = 0.13) were also reported.DiscussionThis evidence is mostly from cross-sectional studies. High-quality prospective studies are needed not only to better understand the role of patient empowerment but to assess causal associations. The results of the study highlight the importance of patient empowerment and other empowerment-related constructs such as self-efficacy or perceived control in diabetes care. Thus, they should be considered in the design, development and implementation of effective interventions and policies aimed at improving psychosocial outcomes in patients ...
Keywords	empowerment ; diabetes ; affective outcomes ; quality of life ; systematic review and meta-analysis ; self-efficacy ; Public aspects of medicine ; RA1-1270
Subject code	150
Language	English
Publishing date	2023-04-01T00:00:00Z
Publisher	Frontiers Media S.A.
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Characteristics of patients referred to Canary Island pneumology outpatient services for chronic obstructive pulmonary disease

Juan Marco Figueira-Gonçalves / José María Hernández-Pérez / Carlos Cabrera-López / Aurelio Luis Wangüemert-Pérez / Ignacio García-Talavera / Yolanda Ramallo-Fariña / Carolina Ramos-Izquierdo / Luis Manuel González-García / Sara Guanche-Dorta

BMC Research Notes, Vol 15, Iss 1, Pp 1-

the EPOCan study

2022 Volume 8

Abstract: Abstract Objective Assessing patients with chronic obstructive pulmonary disease (COPD) accounts for 30% of all pneumology outpatient evaluations. COPD is a heterogeneous disease and generates a massive public health problem. Overall morbidity, ... ...

Abstract	Abstract Objective Assessing patients with chronic obstructive pulmonary disease (COPD) accounts for 30% of all pneumology outpatient evaluations. COPD is a heterogeneous disease and generates a massive public health problem. Overall morbidity, particularly cardiovascular disease, challenges patient management. This is an observational, multicentre study, performed at four hospitals in the Canary Islands (Spain), aimed at characterising patients with COPD referred to pneumology outpatient services. Demographic variables, lung function, and morbidity were assessed. Results Of the 877 included patients, 44.9% were active smokers with a mean (± SD) age of 68.2 ± 10.3 years. The median (IQR) score for the Charlson comorbidity index was 2 (2), and 70.6% of the patients were assigned high risk according to the Spanish Guidelines for COPD (GesEPOC) 2021. The degree of airflow obstruction defined by the GOLD 2021 stages 1, 2, 3, and 4 corresponded to 13.6%, 49%, 31%, and 6.3% of patients, respectively. The most frequently associated morbidities were arterial hypertension (59.5%), dyslipidaemia (54.3%), and type 2 diabetes mellitus (31.2%); 32% of the patients suffered heart disease. There is a high prevalence of active smoking, type 2 diabetes mellitus, and heart disease in patients referred for COPD to Canary Island pneumology outpatient services.
Keywords	Chronic obstructive pulmonary disease ; COPD ; Cardiovascular ; Morbidity ; Medicine ; R ; Biology (General) ; QH301-705.5 ; Science (General) ; Q1-390
Subject code	610
Language	English
Publishing date	2022-02-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Increased Patient Empowerment Is Associated with Improvement in Anxiety and Depression Symptoms in Type 2 Diabetes Mellitus

Andrea Duarte-Díaz / Himar González-Pacheco / Amado Rivero-Santana / Yolanda Ramallo-Fariña / Lilisbeth Perestelo-Pérez / Yolanda Álvarez-Pérez / Wenceslao Peñate / Carme Carrion / Pedro Serrano-Aguilar / on behalf of the INDICA Team

International Journal of Environmental Research and Public Health, Vol 19, Iss 4818, p

Findings from the INDICA Study

2022 Volume 4818

Abstract: Introduction. In cross-sectional analyses, higher levels of patient empowerment have been related to lower symptoms of anxiety and depression. The aims of this study are: (1) to assess if patient empowerment predicts anxiety and depression symptoms after ...

Abstract	Introduction. In cross-sectional analyses, higher levels of patient empowerment have been related to lower symptoms of anxiety and depression. The aims of this study are: (1) to assess if patient empowerment predicts anxiety and depression symptoms after 12 and 24 months among patients with type 2 diabetes mellitus, and (2) to analyze whether a change in patient empowerment is associated with a change in anxiety and depression level. Methods. This is a secondary analysis of the INDICA study, a 24 month-long, multi-arm randomized controlled trial. Patient empowerment (DES-SF), depression (BDI-II), and state-anxiety (STAI-S) were assessed at the baseline (pre-intervention) and after 12 and 24 months. Multilevel mixed linear models with a random intercept were performed to correct for our clustered data. Results. The multilevel regression models showed that the baseline empowerment did not significantly predict anxiety and depression after 12 and 24 months. However, a higher increase in patient empowerment was significantly associated with reductions of anxiety ( p < 0.001) and depression levels ( p < 0.001). This association was not significantly different between the two follow-ups. Conclusion. This study contributes to the knowledge on how to reduce affective symptoms in patients with uncomplicated T2DM through comprehensive patient-centered interventions, and it highlights patient empowerment as a significant contributor.
Keywords	empowerment ; patient-centered care ; type 2 diabetes mellitus ; anxiety ; depression ; Medicine ; R
Subject code	310
Language	English
Publishing date	2022-04-01T00:00:00Z
Publisher	MDPI AG
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Biomarkers of acute respiratory distress syndrome in adults hospitalised for severe SARS-CoV-2 infection in Tenerife Island, Spain

Juan Marco Figueira Gonçalves / José María Hernández Pérez / Marco Acosta Sorensen / Aurelio Luis Wangüemert Pérez / Elena Martín Ruiz de la Rosa / José Luis Trujillo Castilla / David Díaz Pérez / Yolanda Ramallo-Fariña

BMC Research Notes, Vol 13, Iss 1, Pp 1-

2020 Volume 7

Abstract: Abstract Objective The dramatic spread of SARS-CoV-2 infections calls for reliable, inexpensive tools to quickly identify patients with a poor prognosis. In this study, acute respiratory distress syndrome (ARDS) was assessed within 72 h after admission ... ...

Abstract	Abstract Objective The dramatic spread of SARS-CoV-2 infections calls for reliable, inexpensive tools to quickly identify patients with a poor prognosis. In this study, acute respiratory distress syndrome (ARDS) was assessed within 72 h after admission of each of 153 consecutive, SARS-CoV-2 infected, adult patients to either of two hospitals in Tenerife, Spain, using suitable routine laboratory tests for lymphocyte counts, as well as ferritin, lactate dehydrogenase (LDH), and C-reactive protein levels. Results were correlated with the patients’ respiratory function, defined through their pulse oximetric saturation/fraction of inspired oxygen (SpO2/FiO2) ratio. Results Within 72 h from admission, criteria matched ARDS (SpO2/FiO2 < 235) in 13.1% of cases. We found a significant, negative correlation between SpO2/FiO2 ratios and d-dimer, ferritin, and LDH levels (− 0.31, − 0.32, and − 0.41; p = 0.004, 0.004, and < 0.0001, respectively). In patients with ARDS, the mean LDH was 373 U/L (CI95%: 300.6–445.3), but only 298 U/L (CI95%: 274.7–323.1) when they did not develop the syndrome (p = 0.015). None of the additionally evaluated biomarkers correlated with the SpO2/FiO2 ratios. Serum LDH levels in patients hospitalised for COVID-19 correlate with ARDS, as defined by their SpO2/FiO2 ratio, and might help to predict said complication.
Keywords	COVID-19 ; LDH ; Acute respiratory failure ; Biomarkers ; Medicine ; R ; Biology (General) ; QH301-705.5 ; Science (General) ; Q1-390
Language	English
Publishing date	2020-12-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Effectiveness and cost-effectiveness of a multicomponent intervention to implement a clinical practice guideline for systemic lupus erythematosus

María M. Trujillo-Martín / Yolanda Ramallo-Fariña / Tasmania del Pino-Sedeño / Íñigo Rúa-Figueroa / Elisa Trujillo-Martín / Laura Vallejo-Torres / Iñaki Imaz-Iglesia / Ricardo Sánchez-de-Madariaga / Ana M. de Pascual-Medina / Pedro Serrano-Aguilar / SLE-CPG-Implementation Group

BMC Health Services Research, Vol 19, Iss 1, Pp 1-

protocol for a cluster-randomized controlled trial

2019 Volume 9

Abstract: Abstract Background Systemic lupus erythematosus (SLE) is a heterogeneous autoimmune disease with significant potential morbidity and mortality. Substantial gaps have been documented between the development and dissemination of clinical practice ... ...

Abstract	Abstract Background Systemic lupus erythematosus (SLE) is a heterogeneous autoimmune disease with significant potential morbidity and mortality. Substantial gaps have been documented between the development and dissemination of clinical practice guidelines (CPG) and their implementation in practice. The aim of this study is to assess the effectiveness and cost-effectiveness of a multi-component knowledge transfer intervention to implement a CPG for the management of SLE (CPG-SLE). Methods The study is an open, multicentre, controlled trial with random allocation by clusters to intervention or control. Clusters are four public university hospitals of the Canary Islands Health Service where rheumatologists are invited to participate. Patients diagnosed with SLE at least one year prior to recruitment are selected. Rheumatologists in intervention group receive a short educational group programme to both update their knowledge about SLE management according to CPG-SLE recommendations and to acquire knowledge and training on use of the patient-centred approach, a decision support tool embedded in the electronic clinical record and a quarterly feedback report containing information on management of SLE patients. Primary endpoint is change in self-perceived disease activity. Secondary endpoints are adherence of professionals to CPG-SLE recommendations, health-related quality of life, patient perception of their participation in decision making, attitudes of professionals towards shared decision making, knowledge of professionals about SLE and use of healthcare resources. Calculated sample size is 412 patients. Data will be collected from questionnaires and clinical records. Length of follow-up will be 18 months. Multilevel mixed models with repeated time measurements will be used to analyze changes in outcomes over time. Cost-effectiveness, from both social and healthcare services perspectives, will be analyzed by measuring effectiveness in terms of quality-adjusted life years gained. Deterministic and probabilistic ...
Keywords	Care management ; Clinical practice guideline ; Cost-effectiveness ; Decision support aids ; Electronic communication ; Implementation ; Public aspects of medicine ; RA1-1270
Subject code	360
Language	English
Publishing date	2019-11-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Cost-effectiveness of the hospital nutrition screening tool CIPA

José Pablo Suárez-Llanos / Laura Vallejo-Torres / Miguel Ángel García-Bello / Carolina Hernández-Carballo / Eduardo Mauricio Calderón-Ledezma / Adriá Rosat-Rodrigo / Irina Delgado-Brito / Francisca Pereyra-García-Castro / Nestor Benitez-Brito / Nieves Felipe-Pérez / Yolanda Ramallo-Fariña / Juan Carlos Romero-Pérez

Archives of Medical Science, Vol 16, Iss 2, Pp 273-

2019 Volume 281

Keywords	quality of life ; malnutrition ; cost-benefit analysis ; inpatients ; nutrition assessment ; Medicine ; R
Language	English
Publishing date	2019-01-01T00:00:00Z
Publisher	Termedia Publishing House
Document type	Article ; Online
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Article ; Online: Effectiveness, safety and costs of the FreeStyle Libre glucose monitoring system for children and adolescents with type 1 diabetes in Spain

Lilisbeth Perestelo-Pérez / Amado Rivero-Santana / Cristina Valcárcel-Nazco / Yolanda Álvarez-Pérez / Pedro Serrano-Aguilar / Yolanda Ramallo-Fariña / Lidia García-Pérez / Miguel Angel García-Bello / Himar Gonzalez-Pacheco / Ariadna Campos Martorell / Amparo González Vergaz / Ana María Prado Carro / Anunciación Beisti Ortego / Atilano José Carcavilla Urqui / Cristina Amparo Del Castillo Villaescusa / Estela Gil Poch / Francisco Javier Arroyo Diez / Gemma Novoa Gómez / Isabel González Casado /

Juncal Martínez Ibáñez / Laura Cuadrado Piqueras / Leticia Reis Iglesias / Lucia Garzón Lorenzo / Luis Salamanca Fresno / María Asunción Martínez Brocca / María Aurea Rodríguez Blanco / María Del Mar Martínez López / María Jesús Ferreiro Rodríguez / María Ruiz del Campo / Nerea Itza Martín / Patricia García Navas / Rebeca García García

BMJ Open, Vol 13, Iss

a prospective, uncontrolled, pre-post study

2023 Volume 12

Abstract: Objectives This study aimed to evaluate the effectiveness, safety and costs of FreeStyle Libre (FSL) glucose monitoring system for children and adolescents with type 1 diabetes mellitus (T1DM) in Spain.Design Prospective, multicentre pre-post study ... ...

Abstract	Objectives This study aimed to evaluate the effectiveness, safety and costs of FreeStyle Libre (FSL) glucose monitoring system for children and adolescents with type 1 diabetes mellitus (T1DM) in Spain.Design Prospective, multicentre pre-post study.Setting Thirteen Spanish public hospitals recruited patients from January 2019 to March 2020, with a 12-month follow-up.Participants 156 patients were included.Primary and secondary outcome measures Primary: glycated haemoglobin (HbA1c) change. Secondary: severe hypoglycaemic events (self-reported and clinical records), quality of life, diabetes treatment knowledge, treatment satisfaction, adverse events, adherence, sensor usage time and scans. Healthcare resource utilisation was assessed for cost analysis from the National Health System perspective, incorporating direct healthcare costs. Data analysis used mixed regression models with repeated measures. The intervention’s total cost was estimated by multiplying health resource usage with unit costs.Results In the whole sample, HbA1c increased significantly (0.32%; 95% CI 0.10% to 0.55%). In the subgroup with baseline HbA1c≥7.5% (n=88), there was a significant reduction at 3 months (−0.46%; 95% CI −0.69% to −0.23%), 6 months (−0.49%; 95% CI −0.73% to −0.25%) and 12 months (−0.43%; 95% CI −0.68% to –0.19%). Well-controlled patients had a significant 12-month worsening (0.32%; 95% CI 0.18% to 0.47%). Self-reported severe hypoglycaemia significantly decreased compared with the previous year for the whole sample (−0.37; 95% CI −0.62 to –0.11). Quality of life and diabetes treatment knowledge showed no significant differences, but satisfaction increased. Adolescents had lower sensor usage time and scans than children. Reduction in HbA1c was significantly associated with device adherence. No serious adverse effects were observed. Data suggest that use of FSL could reduce healthcare resource use (strips and lancets) and costs related to productivity loss.Conclusions The use of FSL in young patients with T1DM was associated ...
Keywords	Medicine ; R
Language	English
Publishing date	2023-12-01T00:00:00Z
Publisher	BMJ Publishing Group
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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