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1.
Article in English | MEDLINE | ID: mdl-38561141

ABSTRACT

BACKGROUND: Allergic rhinitis (AR) and asthma may affect health-related quality of life. However, national estimates on the quality of life of patients with AR or asthma are lacking. OBJECTIVE: To provide estimates for utility scores and EuroQoL five-dimension (EQ-5D) visual analog scale (VAS) for patients with AR or asthma. METHODS: We conducted a cross-sectional study using direct patient data from the MASK-air app on European MASK-air users with self-reported AR or asthma. We used a multi-attribute instrument (EQ-5D) to measure quality of life (as utility scores and EQ-5D VAS values). Mean scores were calculated per country and disease control level using multilevel regression models with poststratification, accounting for age and sex biases. RESULTS: We assessed data from 7905 MASK-air users reporting a total of up to 82,737 days. For AR, utilities ranged from 0.86 to 0.99 for good control versus 0.72 to 0.85 for poor control; EQ-5D VAS levels ranged from 78.9 to 87.9 for good control versus 55.3 to 64.2 for poor control. For asthma, utilities ranged from 0.84 to 0.97 for good control versus 0.73 to 0.87 for poor control; EQ-5D VAS levels ranged from 68.4 to 81.5 for good control versus 51.4 to 64.2 for poor control. Poor disease control was associated with a mean loss of 0.14 utilities for both AR and asthma. For the same control levels, AR and asthma were associated with similar utilities and EQ-5D VAS levels. However, lower values were observed for asthma plus AR compared with AR alone. CONCLUSIONS: Poor AR or asthma control are associated with reduced quality of life. The estimates obtained from mobile health data may provide valuable insights for health technology assessment studies.

3.
J Community Genet ; 2024 Mar 01.
Article in English | MEDLINE | ID: mdl-38427313

ABSTRACT

In the last decades, genetics has experienced significant technological advancements worldwide. However, in Portugal, serious limitations persist, compromising the functioning of healthcare in medical genetics. This study aimed to promote sharing and discussion among genetic medical professionals, to outline concrete actions to address gaps in clinical practice. Three focus groups were conducted with 19 specialists in medical genetics. The data were analyzed using the thematic analysis method to extract the main themes from the discussions. From the analysis, four conceptual themes emerged: (i) framing Portuguese genetic services in light of the European context; (ii) improvement of medical genetics education and population literacy; (iii) transforming of medical genetics services; and (iv) operationalizing the change. The results demonstrated that increasing training resources and strengthening multiprofessional teams by hiring more genetic professionals, such as clinical geneticists, molecular geneticists, and other genetic specialists, is crucial to enhancing the responsiveness of genetic services. Integrating medical genetics into all specialties and primary care, as well as updating the national network of medical genetics, are critical points for increasing equity and enabling healthcare to be provided more fairly. Including other medical genetics professionals such as genetic counsellors, nurses and psychologists also plays a significant role in providing comprehensive and quality care. This collaborative approach aims to provide effective genetic assistance and enhance the adequacy of genetic healthcare. The findings are compiled as recommendations to support the profession moving forward that can be applied to other healthcare contexts worldwide.

4.
Child Care Health Dev ; 50(1): e13199, 2024 01.
Article in English | MEDLINE | ID: mdl-37967565

ABSTRACT

PURPOSE: To develop, implement and assess the results of psychoeducation to improve the QoL of parents with CHD newborns. METHODS: Participants were parents of inpatient newborns with the diagnosis of non-syndromic CHD. We conducted a parallel RCT with an allocation ratio of 1:1 (intervention vs. control), considering the newborns, using mixed methods research. The intervention group received psychoeducation (Parental Psychoeducation in CHD [PPeCHD]) and the usual routines, and the control group received just the regular practices. The allocation concealment was assured. PI was involved in enrolling participants, developing and implementing the intervention, data collection and data analysis. We followed the Consolidated Standards of Reporting Trials (CONSORT) guidelines. RESULTS: Parents of eight newborns were allocated to the intervention group (n = 15 parents) and eight to the control group (n = 13 parents). It was performed as an intention-to-treat (ITT) analysis. In M2 (4 weeks), the intervention group presented better QoL levels in the physical, psychological, and environmental domains of World Health Organization Quality of Life instrument (WHOQOL-Bref). In M3 (16 weeks), scores in physical and psychological domains maintained a statistically significant difference between the groups. CONCLUSIONS: The PPeCHD, the psychoeducational intervention we developed, positively impacted parental QoL. These results support the initial hypothesis. This study is a fundamental milestone in this research field, adding new essential information to the literature.


Subject(s)
Heart Defects, Congenital , Quality of Life , Infant, Newborn , Child , Humans , Quality of Life/psychology , Parents/psychology , Heart Defects, Congenital/psychology
5.
Porto Biomed J ; 8(6): e240, 2023.
Article in English | MEDLINE | ID: mdl-38093793

ABSTRACT

Objectives: This study aims to analyze the occurrence of delirium in critically ill older patients and to identify predictors of delirium. Methods: This prospective study included critically ill older patients admitted into level II units of Intensive Care Medicine Department of a University Hospital. Patients with Glasgow Coma Scale score ≤11, traumatic brain injury, terminal disease, history of psychosis, blindness/deafness, or inability to understanding/speaking Portuguese were excluded. The Confusion Assessment Method-Short Form (CAM-4) was used to assess the presence of delirium. Results: The final sample (n = 105) had a median age of 80 years, most being female (56.2%), widowed (49.5%), and with complete primary education (53%). Through CAM-4, 36.2% of the patients had delirium. The delirium group was more likely to have previous cognitive decline (48.6% vs 19.6%, P = .04) and severe dependency in instrumental activities of daily living (34.3% vs 14.8%, P = .032), comparing with patients without delirium. The final multiple logistic regression model explained that patients with previous cognitive decline presented a higher risk for delirium (odds ratio: 4.663, 95% confidence Interval: 1.055-20.599, P = .042). Conclusions: These findings corroborate previous studies, showing that cognitive decline is an independent predictor for delirium in older patients. This study is an important contribution for the knowledge regarding the predictors of delirium. The recognition of these factors will help to identify patients who are at high risk for this syndrome and implement early screening and prevention strategies. However, further studies with larger samples, recruited from other clinical settings as well as analyzing other potential factors for delirium, will be needed.

6.
Biology (Basel) ; 12(10)2023 Oct 21.
Article in English | MEDLINE | ID: mdl-37887061

ABSTRACT

Cobalt (Co), copper (Cu), manganese (Mn), molybdenum (Mo), and zinc (Zn) are essential trace elements (ETEs) and important cofactors for intermediary metabolism or redox balance. These ETEs are crucial during pregnancy, their role on specific pregnancy outcomes is largely unknown. This prospective study (#NCT04010708) aimed to assess urinary levels of these ETEs in pregnancy and to evaluate their association with pregnancy outcomes. First trimester pregnant women of Porto and Lisbon provided a random spot urine sample, and sociodemographic and lifestyle data. Clinical data were obtained from clinical records. Urinary ETEs were quantified by inductively coupled plasma mass spectrometry (ICP-MS). A total of 635 mother:child pairs were included. Having urinary Zn levels above the 50th percentile (P50) was an independent risk factor for pre-eclampsia (PE) (aOR [95% CI]: 5.350 [1.044-27.423], p = 0.044). Urinary Zn levels above the P50 decreased the risk of small for gestational age (SGA) birth head circumference (aOR [95% CI]: 0.315 [0.113-0.883], p = 0.028), but it increased the risk SGA length (aOR [95% CI]: 2.531 [1.057-6.062], p = 0.037). This study may provide valuable information for public health policies related to prenatal nutrition, while informing future efforts to de-fine urinary reference intervals for ETEs in pregnant women.

7.
Qual Life Res ; 32(11): 3027-3037, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37329433

ABSTRACT

PURPOSE: To identify psychoeducational interventions that target parents of children with congenital abnormalities (CA) and evaluate their impact on quality of life (QoL). METHODS: The search was conducted in six electronic databases, complemented by references of the studies found, studies of evidence synthesis, a manual search of relevant scientific meetings' abstracts and contact with experts. We included primary studies on parents of children with CA that studied psychoeducational interventions versus standard care. We assessed the risk of bias using Cochrane Collaboration's tool. RESULTS: We included six studies focusing on congenital heart defects (CHD). They described four different psychoeducational strategies. In four studies, statistically significant differences were found. For clinical practice, we considered three interventions as more feasible: the Educational program for mothers, with a group format of four sessions weekly; CHIP-Family intervention, which includes a parental group workshop followed by an individual follow-up booster session; and WeChat educational health program with an online format. CONCLUSIONS: This review is the first that assesses the impact of psychoeducational interventions targeted at parents of children with CA on their QoL. The best approach to intervention is multiple group sessions. Two essential strategies were to give support material, enabling parents to review, and the possibility of an online program application, increasing accessibility. However, because all included studies focus on CHD, generalizations should be made carefully. These findings are crucial to guide future research to promote and improve comprehensive and structured support for families and integrate them into daily practice.


Subject(s)
Heart Defects, Congenital , Quality of Life , Child , Female , Humans , Quality of Life/psychology , Parents , Mothers , Heart Defects, Congenital/therapy
8.
Lancet Digit Health ; 5(4): e227-e238, 2023 04.
Article in English | MEDLINE | ID: mdl-36872189

ABSTRACT

BACKGROUND: Validated questionnaires are used to assess asthma control over the past 1-4 weeks from reporting. However, they do not adequately capture asthma control in patients with fluctuating symptoms. Using the Mobile Airways Sentinel Network for airway diseases (MASK-air) app, we developed and validated an electronic daily asthma control score (e-DASTHMA). METHODS: We used MASK-air data (freely available to users in 27 countries) to develop and assess different daily control scores for asthma. Data-driven control scores were developed based on asthma symptoms reported by a visual analogue scale (VAS) and self-reported asthma medication use. We included the daily monitoring data from all MASK-air users aged 16-90 years (or older than 13 years to 90 years in countries with a lower age of digital consent) who had used the app in at least 3 different calendar months and had reported at least 1 day of asthma medication use. For each score, we assessed construct validity, test-retest reliability, responsiveness, and accuracy. We used VASs on dyspnoea and work disturbance, EQ-5D-VAS, Control of Allergic Rhinitis and Asthma Test (CARAT), CARAT asthma, and Work Productivity and Activity Impairment: Allergy Specific (WPAI:AS) questionnaires as comparators. We performed an internal validation using MASK-air data from Jan 1 to Oct 12, 2022, and an external validation using a cohort of patients with physician-diagnosed asthma (the INSPIRERS cohort) who had had their diagnosis and control (Global Initiative for Asthma [GINA] classification) of asthma ascertained by a physician. FINDINGS: We studied 135 635 days of MASK-air data from 1662 users from May 21, 2015, to Dec 31, 2021. The scores were strongly correlated with VAS dyspnoea (Spearman correlation coefficient range 0·68-0·82) and moderately correlated with work comparators and quality-of-life-related comparators (for WPAI:AS work, we observed Spearman correlation coefficients of 0·59-0·68). They also displayed high test-retest reliability (intraclass correlation coefficients range 0·79-0·95) and moderate-to-high responsiveness (correlation coefficient range 0·69-0·79; effect size measures range 0·57-0·99 in the comparison with VAS dyspnoea). The best-performing score displayed a strong correlation with the effect of asthma on work and school activities in the INSPIRERS cohort (Spearman correlation coefficients 0·70; 95% CI 0·61-0·78) and good accuracy for the identification of patients with uncontrolled or partly controlled asthma according to GINA (area under the receiver operating curve 0·73; 95% CI 0·68-0·78). INTERPRETATION: e-DASTHMA is a good tool for the daily assessment of asthma control. This tool can be used as an endpoint in clinical trials as well as in clinical practice to assess fluctuations in asthma control and guide treatment optimisation. FUNDING: None.


Subject(s)
Asthma , Rhinitis, Allergic , Humans , Reproducibility of Results , Rhinitis, Allergic/diagnosis , Rhinitis, Allergic/drug therapy , Asthma/diagnosis , Asthma/drug therapy , Surveys and Questionnaires , Dyspnea
9.
Health Serv Insights ; 16: 11786329231161482, 2023.
Article in English | MEDLINE | ID: mdl-36968658

ABSTRACT

Background: Heart Transplant (HTx) is the ultimate chance of life for end stage Heart Failure (HF). Exercise training has consistently shown the potential to improve functional capacity in various chronic heart diseases. Still, the evidence in HTx recipients is scarcer. This study aims to systematically review the literature to evaluate the effectiveness and safety of Exercise-based Cardiac Rehabilitation (EBCR) in HTx recipients and to identify possible moderators of success. Methods: We conducted a systematic review and meta-analysis of randomized controlled trials on the effect and safety of EBCR in adult HTx recipients. The primary outcome was functional capacity, measured by Peak Oxygen Uptake (pVO2). We searched CENTRAL, MEDLINE, Embase, Scopus, and Web of Knowledge databases until December 2020, reviewed references of relevant articles and contacted experts. Usual care (UC), the different dosages of exercise regimens and alternative settings were allowed as comparators. A quantitative synthesis of evidence was performed using random-effects meta-analyses. Results: A total of 11 studies with 404 patients were included. Nine studies comprising 306 patients compared EBCR with usual care. They showed that EBCR improved pVO2 compared to usual care (Mean Difference [MD] 3.03 mL/kg/min, 95% CI [2.28-3.77]; I 2 = 32%). In the subgroup analysis, including length of intervention and timing of enrollment after HTx, no significant moderator was found. Two trials, with 98 patients total, compared High Intensity Interval Training (HIIT) and Moderate Intensity Continuous Training (MICT). HIIT attained a significant edge over MICT (MD 2.23 mL/kg/min, 95% CI [1.79-2.67]; I 2 = 0%). No major adverse events associated with EBCR were reported. Conclusion: We found moderate quality evidence suggesting EBCR has a significant benefit on functional capacity improvement HTx recipients at the short-term. HIIT showed superiority when compared to MICT. Research focusing long term outcomes and standardized protocols are needed to improve evidence on EBCR effectiveness.

10.
Toxics ; 11(2)2023 Jan 27.
Article in English | MEDLINE | ID: mdl-36851000

ABSTRACT

The aims of this study were to characterize the exposure of pregnant women living in Portugal to 3-phenoxybenzoic acid (3-PBA) and to evaluate the association of this exposure with maternal outcomes and newborn anthropometric measures. We also aimed to compare exposure in summer with exposure in winter. Pregnant women attending ultrasound scans from April 2018 to April 2019 at a central hospital in Porto, Portugal, were invited to participate. Inclusion criteria were: gestational week between 10 and 13, confirmed fetal vitality, and a signature of informed consent. 3-PBA was measured in spot urine samples by gas chromatography with mass spectrometry (GC-MS). The median 3-PBA concentration was 0.263 (0.167; 0.458) µg/g creatinine (n = 145). 3-PBA excretion was negatively associated with maternal pre-pregnancy body mass index (BMI) (p = 0.049), and it was higher during the summer when compared to winter (p < 0.001). The frequency of fish or yogurt consumption was associated positively with 3-PBA excretion, particularly during the winter (p = 0.002 and p = 0.015, respectively), when environmental exposure is low. Moreover, 3-PBA was associated with levothyroxine use (p = 0.01), a proxy for hypothyroidism, which could be due to a putative 3-PBA-thyroid hormone antagonistic effect. 3-PBA levels were not associated with the anthropometric measures of the newborn. In conclusion, pregnant women living in Portugal are exposed to 3-PBA, particularly during summer, and this exposure may be associated with maternal clinical features.

11.
Rev Port Cardiol ; 42(3): 225-234, 2023 03.
Article in English, Portuguese | MEDLINE | ID: mdl-36623639

ABSTRACT

INTRODUCTION AND OBJECTIVES: Studies on younger frail and pre-frail subjects suffering from heart failure (HF) are scarce, except for those focusing on the critically ill. This work aims to describe differences between younger (<65 years) and older (≥65 years) pre-frail and frail HF outpatients regarding their nutritional, functional and clinical statuses. METHODS: In this cross-sectional study, a sample of 99 HF frail and pre-frail patients (aged 24-81 years, 38.4% women, 21.2% frail, 59.6% <65 years) was recruited from an HF outpatients' clinic in northern Portugal. Muscle mass was estimated from mid-upper arm muscle circumference. Weight status was assessed using body mass index. Hand grip strength and gait speed were measured. Medical records were reviewed. Associations between participants' characteristics and age were calculated using binary logistic regression. RESULTS: Age was associated with hand grip strength (OR=0.90), gait speed (OR=0.01) and diabetes (OR=4.95). Obesity, muscle mass or heart failure functional classes were not associated with age categories. CONCLUSION: There is an overall lack of differentiation between younger and older HF patients with the frailty phenotype. Therefore, frailty phenotype should be assessed in all patients, regardless of age. Hand grip strength seems to be a good predictor for older age and more studies are needed to define age-specific hand grip strength cut-offs for HF populations.


Subject(s)
Frailty , Heart Failure , Female , Male , Aged , Humans , Frailty/complications , Hand Strength , Cross-Sectional Studies , Heart Failure/complications , Phenotype , Geriatric Assessment
12.
Clin Transl Allergy ; 12(3): e12128, 2022 Mar.
Article in English | MEDLINE | ID: mdl-35344295

ABSTRACT

BACKGROUND: Evidence regarding the effectiveness of allergen immunotherapy (AIT) on allergic rhinitis has been provided mostly by randomised controlled trials, with little data from real-life studies. OBJECTIVE: To compare the reported control of allergic rhinitis symptoms in three groups of users of the MASK-air® app: those receiving sublingual AIT (SLIT), those receiving subcutaneous AIT (SCIT), and those receiving no AIT. METHODS: We assessed the MASK-air® data of European users with self-reported grass pollen allergy, comparing the data reported by patients receiving SLIT, SCIT and no AIT. Outcome variables included the daily impact of allergy symptoms globally and on work (measured by visual analogue scales-VASs), and a combined symptom-medication score (CSMS). We applied Bayesian mixed-effects models, with clustering by patient, country and pollen season. RESULTS: We analysed a total of 42,756 days from 1,093 grass allergy patients, including 18,479 days of users under AIT. Compared to no AIT, SCIT was associated with similar VAS levels and CSMS. Compared to no AIT, SLIT-tablet was associated with lower values of VAS global allergy symptoms (average difference = 7.5 units out of 100; 95% credible interval [95%CrI] = -12.1;-2.8), lower VAS Work (average difference = 5.0; 95%CrI = -8.5;-1.5), and a lower CSMS (average difference = 3.7; 95%CrI = -9.3;2.2). When compared to SCIT, SLIT-tablet was associated with lower VAS global allergy symptoms (average difference = 10.2; 95%CrI = -17.2;-2.8), lower VAS Work (average difference = 7.8; 95%CrI = -15.1;0.2), and a lower CSMS (average difference = 9.3; 95%CrI = -18.5;0.2). CONCLUSION: In patients with grass pollen allergy, SLIT-tablet, when compared to no AIT and to SCIT, is associated with lower reported symptom severity. Future longitudinal studies following internationally-harmonised standards for performing and reporting real-world data in AIT are needed to better understand its 'real-world' effectiveness.

13.
Int J Occup Med Environ Health ; 35(3): 297-307, 2022 Jun 08.
Article in English | MEDLINE | ID: mdl-35142298

ABSTRACT

OBJECTIVES: To assess the seroprevalence of SARS-CoV-2 antibodies in municipal employees of Northern Portugal during the first pandemic wave (May-June 2020) and its association with potentially related risk factors for infection. MATERIAL AND METHODS: The authors assessed municipal employees of 2 cities in Northern Portugal, in whom serological tests to SARS-CoV-2 and an epidemiological survey were applied. The authors assessed the proportion of individuals presenting IgM and/or IgG antibodies to SARS-CoV-2, and evaluated the association between having positive serological test results, epidemiologic variables and clinical presentations. Reported symptoms were evaluated on their sensitivity, specificity, and predictive values. RESULTS: The authors assessed 1696 employees, of whom 22.0% were firefighters, 10.4% were police officers, 10.3% were maintenance workers, and 8.1% were administrative assistants. The seroprevalence of SARS-CoV-2 infection was 2.9% (95% CI: 2.1-3.7%). Administrative assistants comprised the professional group with highest seroprevalence of SARS-CoV-2 (OR = 1.9 in the comparison with other occupational groups, 95% CI: 0.8-4.3, p = 0.126). The seroprevalence of SARS-CoV-2 infection among those who were in direct contact with COVID-19 patients in their professional activity was 3.9%, compared to 2.7% among those who were not in direct contact with such patients (OR = 1.5, 95% CI: 0.8-2.8, p = 0.222). The highest risk of infection was associated with the presence of a confirmed SARS-CoV-2 infection in the household (OR = 17.4, 95% CI: 8.3-36.8, p < 0.001). Living with a healthcare professional was not associated with a higher risk of infection (OR = 1.0, 95% CI: 0.4-2.5, p = 0.934). Anosmia/ dysgeusia was the symptom with the highest positive predictive value (52.2%, 95% CI: 31.8-72.6, p < 0.001) and specificity (99.3%, 95% CI: 98.9-99.7, p < 0.001), while cough was the most prevalent symptom among SARS-CoV-2 seropositive participants (36%). CONCLUSIONS: The authors observed a SARS-CoV-2 seroprevalence of 2.9% among assessed municipal employees. Anosmia/dysgeusia was the COVID-19 symptom which displayed the highest positive predictive value and specificity. Int J Occup Med Environ Health. 2022;35(3):297-307.


Subject(s)
COVID-19 , SARS-CoV-2 , Anosmia , Antibodies, Viral , COVID-19/epidemiology , Dysgeusia , Epidemiologic Factors , Health Personnel , Humans , Portugal/epidemiology , Seroepidemiologic Studies
14.
Qual Life Res ; 31(4): 991-1011, 2022 Apr.
Article in English | MEDLINE | ID: mdl-34482484

ABSTRACT

PURPOSE: To quantify and understand how to assess the quality of life and health-related QoL of parents with children with congenital abnormalities. METHODS: We conducted a systematic review with meta-analysis. The search was carried out in 5 bibliographic databases and in ClinicalTrials.gov. No restriction on language or date of publication was applied. This was complemented by references of the studies found and studies of evidence synthesis, manual search of abstracts of relevant congresses/scientific meetings and contact with experts. We included primary studies (observational, quasi-experimental and experimental studies) on parents of children with CA reporting the outcome quality of life (primary outcome) of parents, independently of the intervention/exposure studied. RESULTS: We included 75 studies (35 observational non-comparatives, 31 observational comparatives, 4 quasi-experimental and 5 experimental studies). We identified 27 different QoL instruments. The two most frequently used individual QoL instruments were WHOQOL-Bref and SF-36. Relatively to family QoL tools identified, we emphasized PedsQL FIM, IOFS and FQOL. Non-syndromic congenital heart defects were the CA most frequently studied. Through the analysis of comparative studies, we verified that parental and familial QoL were impaired in this population. CONCLUSIONS: This review highlights the relevance of assessing QoL in parents with children with CA and explores the diverse QoL assessment tools described in the literature. Additionally, results indicate a knowledge gap that can help to draw new paths to future research. It is essential to assess QoL as a routine in healthcare providing and to implement strategies that improve it.


Subject(s)
Heart Defects, Congenital , Quality of Life , Child , Humans , Parents , Quality of Life/psychology
15.
J Dermatolog Treat ; 33(4): 2325-2330, 2022 Jun.
Article in English | MEDLINE | ID: mdl-34334082

ABSTRACT

BACKGROUND: The communication of dosage regimen instructions by physicians is of utmost importance on treatment adherence. Few studies until now have approached the topical treatment adherence subject. OBJECTIVE: This study aims the characterization of dosage regimen instructions given by physicians and the assessment of chronic dermatological patients' perception regarding these instructions. METHODS: Two instruments one for physicians (PHYSDOSAGE) and one for patients (PATIENTDOSAGE) were developed and applied in a cross-sectional, descriptive and exploratory study to two independent samples composed by 91 physicians and 43 patients. RESULTS: Most of physicians reported to provide dosage regimen instructions. When cross checking information from both studied samples, physicians and patients, it was concluded that physicians reported to provide more frequently oral and written treatment instructions, e.g. electronic prescription, than patients reported having received it. Also, physicians claimed to often provide information about the duration of treatment and the frequency of topical medicines' application, which was not acknowledged by patients. CONCLUSIONS: Contradictory results were found between the physicians' information input and the patients' perception about dosage regimen instructions provided during the consultation. These findings could negatively influence the treatment adherence and the clinical outcomes. Thus, it is of paramount importance the implementation of strategies to improve optimal communication of dosage regimen instructions for topical medicines.


Subject(s)
Communication , Physicians , Cross-Sectional Studies , Humans
16.
Patient Educ Couns ; 105(4): 869-880, 2022 04.
Article in English | MEDLINE | ID: mdl-34389225

ABSTRACT

OBJECTIVE: This study aimed to identify psychoeducational interventions applied to parents of children with chronic diseases and evaluate their impact on their quality of life (QoL). METHODS: It was conducted in six databases, complemented by references from the included studies and other reviews, manual search, and contact with experts. We included primary studies on parents of children with chronic diseases that studied psychoeducational interventions versus standard care. RESULTS: We screened 6604 titles and abstracts, reviewed the full text of 60 records, and included 37 primary studies. Half of the studies were on Asthma. We found three intervention formats: one-to-one (43%), groups (49%), and combined approach with individual and group settings (8%). More than 60% of the included studies found statistically significant differences between the intervention and the control group (p < 0.05). CONCLUSION: Several interventions have shown efficacy in improving parental QoL. Despite that, there is insufficient evidence of interventions' implementation. PRACTICE IMPLICATIONS: A holistic approach encompassing the patient and the family's biopsychosocial dimensions is fundamental in successfully managing chronic disease in children. It is vital to design and implement interventions accommodating the common issues experienced by children, parents, and families that deal with chronic childhood conditions. Systematic review registration number PROSPERO 2018 CRD42018092135.


Subject(s)
Asthma , Quality of Life , Child , Chronic Disease , Humans , Parents
17.
Allergy ; 77(7): 2147-2162, 2022 07.
Article in English | MEDLINE | ID: mdl-34932829

ABSTRACT

BACKGROUND: Validated combined symptom-medication scores (CSMSs) are needed to investigate the effects of allergic rhinitis treatments. This study aimed to use real-life data from the MASK-air® app to generate and validate hypothesis- and data-driven CSMSs. METHODS: We used MASK-air® data to assess the concurrent validity, test-retest reliability and responsiveness of one hypothesis-driven CSMS (modified CSMS: mCSMS), one mixed hypothesis- and data-driven score (mixed score), and several data-driven CSMSs. The latter were generated with MASK-air® data following cluster analysis and regression models or factor analysis. These CSMSs were compared with scales measuring (i) the impact of rhinitis on work productivity (visual analogue scale [VAS] of work of MASK-air® , and Work Productivity and Activity Impairment: Allergy Specific [WPAI-AS]), (ii) quality-of-life (EQ-5D VAS) and (iii) control of allergic diseases (Control of Allergic Rhinitis and Asthma Test [CARAT]). RESULTS: We assessed 317,176 days of MASK-air® use from 17,780 users aged 16-90 years, in 25 countries. The mCSMS and the factor analyses-based CSMSs displayed poorer validity and responsiveness compared to the remaining CSMSs. The latter displayed moderate-to-strong correlations with the tested comparators, high test-retest reliability and moderate-to-large responsiveness. Among data-driven CSMSs, a better performance was observed for cluster analyses-based CSMSs. High accuracy (capacity of discriminating different levels of rhinitis control) was observed for the latter (AUC-ROC = 0.904) and for the mixed CSMS (AUC-ROC = 0.820). CONCLUSION: The mixed CSMS and the cluster-based CSMSs presented medium-high validity, reliability and accuracy, rendering them as candidates for primary endpoints in future rhinitis trials.


Subject(s)
Asthma , Rhinitis, Allergic , Rhinitis , Asthma/drug therapy , Humans , Quality of Life , Reproducibility of Results , Rhinitis, Allergic/diagnosis , Rhinitis, Allergic/drug therapy
18.
Porto Biomed J ; 7(6): e196, 2022.
Article in English | MEDLINE | ID: mdl-37152084

ABSTRACT

Background: Delirium is a very common neuropsychiatric disorder in the elderly, with a significant physical and psychological burden. Much is still unknown about its psychological effects. This study aims to identify the proportion of patients who recall delirium and to analyze the distress caused by it. In addition, this study aims to analyze the association between delirium recall and related distress and global psychological distress regarding hospitalization. Methods: This is a prospective study with elderly hospitalized patients in level-2 units of intensive care medicine department of a university hospital. Exclusion criteria were a Glasgow Coma Scale total ≤11, brain injury, blindness, deafness, or inability to communicate. Delirium was daily assessed with the Confusion Assessment Method. Delirium recall and related distress in patients were measured using the Delirium Experience Questionnaire. Global psychological distress was assessed with the Kessler Psychological Distress Scale. Results: From 105 patients, 38 (36.2%) developed delirium. Most patients did not remember the delirium episode (64.7%). Among those who remembered (35.3%), most described delirium as a distressing experience (75%). Delirium recall was associated with high global psychological distress (P = .029). Conclusions: Distress related to delirium is high, namely in patients who recall the episode. Global psychological distress during hospitalization is associated with delirium recall. This study highlights the need to assess the experience of delirium in these patients, as well as the importance of providing support and psychological interventions to minimize the associated distress.

19.
PLoS One ; 16(11): e0259535, 2021.
Article in English | MEDLINE | ID: mdl-34731211

ABSTRACT

BACKGROUND: The assessment of pain as the fifth vital sign (P5VS) is of paramount importance since it leads to the management of undertreated pain, consequently reducing suffering, readmissions and emergency department visits after hospital discharge. OBJECTIVE: To evaluate the implementation of P5VS in public and private hospitals. METHODS: Data analysis on validated questionnaires was sent to all 171 Portuguese hospitals via an official letter. RESULTS: When compared to private hospitals, public hospitals presented a higher adherence to the process related to the P5VS. It has demonstrated superiority in the charts properly placed to record P5VS, in the number of emergency departments recording P5VS, in the regularity of audits, and in the existence of guidelines and staff training on pain assessment and management. CONCLUSION: The standardization of both evaluation and recording of pain intensity constitutes a measure of good clinical practice. Public hospitals demonstrated better commitment to these procedures that should be properly carried out in all health care institutions.


Subject(s)
Pain/physiopathology , Vital Signs , Emergency Service, Hospital/statistics & numerical data , Hospitals, Public/statistics & numerical data , Humans , Patient Discharge , Surveys and Questionnaires
20.
Health Serv Insights ; 14: 11786329211021668, 2021.
Article in English | MEDLINE | ID: mdl-34188484

ABSTRACT

BACKGROUND: Tele-rehabilitation (TR) may be an effective alternative or complement to centre-based cardiac rehabilitation (CBCR) with heart failure (HF) patients, helping overcome accessibility problems to CBCR. The aim of this study is to systematically review the literature in order to assess the clinical effectiveness of TR programs in the management of chronic HF patients, compared to standard of care and standard rehabilitation (CBCR). METHODS AND RESULTS: We conducted a systematic review and meta-analysis of randomized controlled trials on the effect and safety of TR programs in HF patients, regarding cardiovascular death, heart failure-related hospitalizations, functional capacity and quality of life. We searched 4 electronic databases up until May 2020, reviewed references of relevant articles and contacted experts. A quantitative synthesis of evidence was performed by means of random-effects meta-analyses. We included 17 primary studies, comprising 2206 patients. Four studies reported the number of hospitalizations (TR: 301; Control: 347). TR showed to be effective in the improvement of HF patients' functional capacity in the 6 Minute Walk-Test (Mean Difference (MD) 15.86; CI 95% [7.23; 24.49]; I2 = 74%) and in peak oxygen uptake (pVO2) results (MD 1.85; CI 95% [0.16; 3.53]; I2 = 93%). It also improved patients' quality of life (Minnesota Living with Heart Failure Questionnaire: MD -6.62; CI 95% [-11.40; -1.84]; I2 = 99%). No major adverse events were reported during TR exercise. CONCLUSION: TR showed to be superior than UC without CR on functional capacity improvement in HF patients. There is still scarce evidence of TR impact on hospitalization and cv death reduction. Further research and more standardized protocols are needed to improve evidence on TR effectiveness, safety and cost-effectiveness.

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