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1.
Magn Reson Med ; 92(2): 715-729, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38623934

RESUMO

PURPOSE: We propose a quantitative framework for motion-corrected T2 fetal brain measurements in vivo and validate the single-shot fast spin echo (SS-FSE) sequence to perform these measurements. METHODS: Stacks of two-dimensional SS-FSE slices are acquired with different echo times (TE) and motion-corrected with slice-to-volume reconstruction (SVR). The quantitative T2 maps are obtained by a fit to a dictionary of simulated signals. The sequence is selected using simulated experiments on a numerical phantom and validated on a physical phantom scanned on a 1.5T system. In vivo quantitative T2 maps are obtained for five fetuses with gestational ages (GA) 21-35 weeks on the same 1.5T system. RESULTS: The simulated experiments suggested that a TE of 400 ms combined with the clinically utilized TEs of 80 and 180 ms were most suitable for T2 measurements in the fetal brain. The validation on the physical phantom confirmed that the SS-FSE T2 measurements match the gold standard multi-echo spin echo measurements. We measured average T2s of around 200 and 280 ms in the fetal brain grey and white matter, respectively. This was slightly higher than fetal T2* and the neonatal T2 obtained from previous studies. CONCLUSION: The motion-corrected SS-FSE acquisitions with varying TEs offer a promising practical framework for quantitative T2 measurements of the moving fetus.


Assuntos
Encéfalo , Feto , Imageamento por Ressonância Magnética , Imagens de Fantasmas , Humanos , Encéfalo/diagnóstico por imagem , Imageamento por Ressonância Magnética/métodos , Feminino , Gravidez , Feto/diagnóstico por imagem , Algoritmos , Processamento de Imagem Assistida por Computador/métodos , Idade Gestacional , Reprodutibilidade dos Testes , Simulação por Computador , Interpretação de Imagem Assistida por Computador/métodos , Movimento (Física)
2.
Dig Dis Sci ; 69(5): 1793-1802, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38457117

RESUMO

BACKGROUND: Inflammatory bowel disease (IBD) is associated with dietary restrictions and food- and drink-driven daily life limitations. Food-related quality of life (FR-QoL) is still an under-addressed issue in IBD. AIM: We aimed to study determinants of FR-QoL in an IBD cohort, namely objective measures of disease activity. METHODS: A cross-sectional case-control study was conducted in a Tertiary Hospital, including adult patients with IBD (cases) and blood donors or subjects referred for colorectal polypectomies (controls). Participants answered an anonymous multimodal questionnaire including sociodemographic and clinical data, the validated FR-QoL-29, and the SIBDQ tools. Patients' disease activity was previously assessed by a physician using symptom-based scores and biomarkers (Harvey-Bradshaw index, partial Mayo score, fecal calprotectin). RESULTS: A total of 239 patients with IBD and 126 controls were included. Patients with active disease had poorer FR-QoL than patients in remission (80.0 [56.0-99.0] vs. 103.5 [81.0-129.9], p < 0.001). Still, patients with IBD had significantly lower FR-QoL compared with controls (99.0 [76.0-126.0] vs. 126.0 [102.8-143.0], p < 0.001), irrespective of disease activity. FR-QoL correlated with health-related quality of life, measured by SIBDQ (r = 0.490, p < 0.001), and was significantly impaired by patients' depressive humor (84.0 [61.0-112.0] vs. 108.0 [88.0-130.5], p < 0.001). Globally, FR-QoL compromise was mostly related to persistent worries about food, concerns about food-related symptoms, and life disruption due to eating and drinking. CONCLUSIONS: Patients with IBD showed significant FR-QoL impairment, irrespective of disease type and activity. Related psychosocial factors, such as the patient's affective status and fear around eating, warrant a need for a multidisciplinary approach to IBD, including tailored nutritional counseling.


Assuntos
Doenças Inflamatórias Intestinais , Qualidade de Vida , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Estudos de Casos e Controles , Estudos Transversais , Doenças Inflamatórias Intestinais/psicologia , Inquéritos e Questionários , Alimentos
3.
Qual Life Res ; 33(6): 1513-1526, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38451360

RESUMO

PURPOSE: To develop and test the measurement properties of the HD-DT-C, a new tool designed to facilitate the screening of psychological distress and its sources in family caregivers of adults on hemodialysis. METHODS: The present investigation was carried out in three phases: Phase 1 focused on the process of developing and exploring the content validity and clinical utility of the HD-DT-C using a mixed-methods approach and feedback panels; Phase 2, where the psychometric properties of this new tool were tested in a cross-sectional study (n = 106 caregivers); and Phase 3, where the European Portuguese version of the HD-DT-C was translated and culturally adapted into American English using a forward-backward translation procedure, followed by an expert panel review. RESULTS: Findings suggested that the HD-DT-C was perceived by feedback panels as practical, appropriate, and useful for increasing dialysis provider/family caregiver communication in nephrology centers. The European Portuguese version of the HD-DT-C showed good test-retest reliability (ICC = 0.991 for the barometer and κ ≥ 0.80 in 77% of the checklist items), high diagnostic accuracy (AUC = 0.956), and strong convergent validity (all r ≥ 0.50) with reference measures that assess quality of life, caregiver burden, and symptoms of anxiety and depression. Cutoff scores with good clinical utility (CUI + ≥ 0.70) were recommended for screening distress in research (≥ 6) and clinical practice (≥ 5). CONCLUSION: The HD-DT-C is a brief, reliable, valid, and acceptable measure for identifying self-reported psychological distress and its sources among people caring for a family member or friend on hemodialysis. Future research is needed to explore the measurement properties of the American English version of this new tool.


Assuntos
Cuidadores , Angústia Psicológica , Psicometria , Diálise Renal , Humanos , Cuidadores/psicologia , Diálise Renal/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Estudos Transversais , Reprodutibilidade dos Testes , Adulto , Inquéritos e Questionários , Idoso , Estresse Psicológico , Qualidade de Vida/psicologia , Portugal , Programas de Rastreamento
4.
Gut ; 72(2): 306-313, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35985798

RESUMO

OBJECTIVE: Endoscopy is healthcare's third largest generator of medical waste in hospitals. This prospective study aimed to measure a single unit's waste carbon footprint and perform a pioneer intervention towards a more sustainable endoscopy practice. The relation of regulated medical waste (RMW; material fully contaminated with blood or body fluids or containing infectious agents) versus landfill waste (non-recyclable material not fully contaminated) may play a critical role. DESIGN: In a four-stage prospective study, following a 4-week observational audit with daily weighing of both waste types (stage 1), stage 2 consisted of a 1-week intervention with team education of waste handling. Recycling bins were placed in endoscopy rooms, landfill and RMW bins were relocated. During stages 3 (1 month after intervention) and 4 (4 months after intervention), daily endoscopic waste was weighed. Equivalence of 1 kg of landfill waste to 1 kg carbon dioxide equivalent (CO2e) and 1 kg of RMW to 3kgCO2e was assumed. Paired samples t-tests for comparisons. RESULTS: From stage 1 to stage 3, mean total waste and RMW were reduced by 12.9% (p=0.155) and 41.4% (p=0.010), respectively, whereas landfill (p=0.059) and recycling waste increased (paper: p=0.001; plastic: p=0.007). While mean endoscopy load was similar (46.2 vs 44.5, p=0.275), a total decrease of CO2e by 31.6% (138.8kgCO2e) was found (mean kgCO2e109.7 vs 74.9, p=0.018). The annual reduction was calculated at 1665.6kgCO2e. All these effects were sustained 4 months after the intervention (stage 4) without objections by responsible endoscopy personnel. CONCLUSION: In this interventional study, applying sustainability measures to a real-world scenario, RMW reduction and daily recycling were achieved and sustained over time, without compromising endoscopy productivity.


Assuntos
Resíduos de Serviços de Saúde , Humanos , Estudos Prospectivos , Resíduos de Serviços de Saúde/prevenção & controle , Instalações de Eliminação de Resíduos , Endoscopia Gastrointestinal , Hospitais
5.
Int J Behav Med ; 30(1): 97-107, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-35275346

RESUMO

BACKGROUND: Previous research has shown that deliberate withdrawal, skipping, and/or shortening hemodialysis sessions has become a major health problem associated with poor clinical outcomes and early mortality in patients with end-stage renal disease (ESRD). However, patients' experiences with this treatment remain largely unexplored. This study aimed to explore patients' perceived facilitators and barriers to in-center hemodialysis attendance and map these findings to the Health Belief Model. METHODS: A qualitative exploratory study was conducted with a purposive sample. Semi-structured interviews were conducted and submitted to thematic analysis. RESULTS: Twenty-four patients (66.2 ± 12.3 years old; length of time on hemodialysis: 35.2 ± 51.5 months) were interviewed. Five major facilitators (social support, perceived benefits, self-efficacy, time on dialysis, and risk/susceptibility perception) and two barriers (lack of knowledge about ESRD and hemodialysis, and psychosocial costs) were identified. CONCLUSION: Adherence to the prescribed regimen of hemodialysis attendance is a complex and multidimensional phenomenon that involves an interaction between modifying factors (social support, disease and treatment knowledge, time on dialysis) and patients' perceived benefits, perceived risks, self-efficacy, and treatment costs. This study findings expand knowledge by suggesting that perceiving health benefits from the beginning of treatment, self-efficacy to deal with dialysis demands, and purpose in life are important facilitators of adherence to in-center hemodialysis sessions. Furthermore, it suggests that the impact of the hemodialysis regimen on the emotional well-being of family members is an important barrier. Future interventions should focus on skills training to promote self-efficacy and family coping with the demands of in-center hemodialysis, improve disease and treatment knowledge, and help balance perceived benefits with dialysis costs.


Assuntos
Falência Renal Crônica , Humanos , Pessoa de Meia-Idade , Idoso , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Diálise Renal/psicologia , Pesquisa Qualitativa
6.
Psychol Health Med ; 28(7): 1641-1655, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35818689

RESUMO

Patients with kidney failure need lifelong renal replacement therapy to survive and, worldwide, in-centre haemodialysis is the most common modality. The efficacy of this treatment largely depends on the patients' adherence to several health behaviours. According to Leventhal's self-regulation model, patients' illness perceptions can be a key factor for treatment adherence. Therefore, it is of utmost importance to better understand this relationship to further fine-tune the effectiveness of renal rehabilitation programs. This study aimed to systematically review the literature on the association between illness perceptions and treatment adherence in adults undergoing in-centre haemodialysis. The search was performed on PubMed, Scopus, CINAHL, Web of Science (all databases included), and ProQuest (all databases included), from the 17th to the 21st of December 2020. The last update was performed on the 9th of June of 2022. Articles were critically appraised using the Joanna Briggs Institute (JBI) Critical Appraisal Checklists for Analytical Cross-Sectional Studies. Nine studies were included comprising a total of 1161 patients undergoing in-centre haemodialysis. Associations between illness perceptions and treatment adherence were found in six studies. Adherence to dietary restrictions was the type of adherence with more significant associations with illness perceptions, followed by fluid control and medication intake. Two studies combining several types of adherences into an overall score also showed significant associations with illness perceptions. No significant associations were found between illness perceptions and adherence to dialysis sessions. These findings suggest that illness perceptions in patients undergoing in-centre haemodialysis should continue to receive research attention. Future interventions should acknowledge the importance of modifying maladaptive illness perceptions to improve treatment adherence in kidney failure. The protocol for this systematic review was registered on PROSPERO (CRD42021231929).

7.
Clin Gastroenterol Hepatol ; 20(9): 2059-2073.e7, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-34896644

RESUMO

BACKGROUND AND AIMS: Subclinical intestinal inflammation is common in Crohn's disease (CD). We aimed to explore its impact in the disease progression of infliximab-treated patients and the usefulness of fecal calprotectin (FC) and C-reactive protein (CRP) as surrogate minimally invasive biomarkers. METHODS: The registry-based, prospective, observational, multicenter DIRECT (study to investigate the correlation of fecal calprotectin with serum Drug levels and development of an antI-dRug antibodiEs among adult patients with inflammatory bowel disease reCeiving anti-TNF-alfa treatment or vedoluzimab treatment) study followed infliximab-treated CD patients for 2 years in a tertiary care setting. Persistent inflammation definition was based on FC (>150 µg/g, >250 µg/g, or >350 µg/g) or serum CRP (>3 µg/mL) concentrations over 2 consecutive or at least 3 visits. Patients were categorized according to a composite outcome reflecting disease progression that incorporated surgery; hospitalizations; new fistulae, abscess, or stricture; and treatment escalation. RESULTS: Of 322 DIRECT study patients, 180 asymptomatic, infliximab treated on maintenance regimen were included in the analysis. Patients developing the composite endpoint (n = 96) presented higher median levels of FC (205 [interquartile range, 98-515] µg/g; P = .045) but not of CRP (2.50 [interquartile range, 0.80-6.00] µg/mL; P = .895). Biomarker-defined persistent subclinical inflammation prevalence ranged from 24% to 81%. Considering FC >250 µg/g in 2 consecutive visits, prevalence was 50%, odds of achieving the endpoint were increased 3-fold (odds ratio, 2.996 [95% confidence interval, 1.557-5.776]), and time-to-outcome occurrence was significantly lower among subjects with persistent inflammation (median time: 11 months). Both clinical-related and treatment-related components were significantly associated with persistent inflammation. Definitions based on CRP >3 µg/mL, FC >150 µg/g, FC >350 µg/g, double biomarkers (FC >250 µg/g and/or CRP >3 µg/mL), or more visits did not improve predictive ability. CONCLUSIONS: Persistent inflammation, defined simply and readily by FC >250 µg/g over 2 consecutive visits, was associated with a significantly higher risk and shorter time to occurrence of a composite outcome reflecting disease progression in asymptomatic infliximab-treated CD patients.


Assuntos
Doença de Crohn , Adulto , Biomarcadores , Proteína C-Reativa , Progressão da Doença , Fezes , Humanos , Inflamação , Infliximab , Complexo Antígeno L1 Leucocitário , Estudos Prospectivos , Fatores de Risco , Inibidores do Fator de Necrose Tumoral
8.
Acta Paediatr ; 111(3): 478-489, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34919292

RESUMO

AIM: This systematic review aimed to differentiate and isolate the results of different music-based interventions used with preterm infants in the neonatal intensive care unit and explore their clinical benefits. METHODS: The last search was performed on 5 July 2021 on Web of Science, Scopus, EMBASE, PsycINFO, CINAHL, LILACS and CENTRAL. Only randomised clinical trials that explored the health benefits of music-based interventions were considered. RESULTS: A total of 39 studies were included. All music-based interventions were divided into music medicine and music therapy. The overall results suggested that music medicine interventions were associated with a significant improvement in pain relief; in turn, improvements in cardiac and respiratory function, weight gain, eating behaviour, and quiet alert and sleep states were more consistent in studies that followed a music therapy approach with the presence of a music therapist. CONCLUSION: This review supports the beneficial effects of music-based interventions on the health of preterm infants in a neonatal intensive care unit; however, it also offers suggestions for future studies in order to increase the number of interventions with music therapists, since the results of music therapy approaches were more consistent for physiological and behavioural outcomes.


Assuntos
Musicoterapia , Música , Humanos , Lactente , Recém-Nascido , Recém-Nascido Prematuro/fisiologia , Unidades de Terapia Intensiva Neonatal , Musicoterapia/métodos , Ensaios Clínicos Controlados Aleatórios como Assunto , Sono
9.
J Clin Nurs ; 31(23-24): 3454-3463, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34897863

RESUMO

AIM: This study aimed to explore the stressors and coping strategies of adult children who care for their parents with end-stage renal disease (ESRD) undergoing in-centre haemodialysis. BACKGROUND: Given the growing number of older patients with ESRD, adult children are increasingly providing more care and assistance to their parents with this condition. However, little is still known about the experiences of caring for a parent undergoing haemodialysis. DESIGN: A qualitative exploratory study was conducted in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. METHODS: Semi-structured face-to-face interviews with nineteen adult children (44.9 ± 11.7 years old) were carried out. Data were transcribed verbatim and subjected to thematic analysis. RESULTS: Four stressors (managing disease and treatment-related requirements, patients' reaction to treatment, lack of support from family members, and additional challenges to personal and family life) and five coping strategies (active coping and planning, seeking social support for emotional use, accepting the situation as it is, venting emotions, and maintaining interests outside caring) were identified. CONCLUSION: Caring for a parent undergoing haemodialysis is an experience with several challenges, marked by educational needs, emotional distress, lack of support from close relatives and the need to manage multiple responsibilities. RELEVANCE TO CLINICAL PRACTICE: Findings highlight the importance of developing interdisciplinary educational and supportive interventions to support this group of caregivers. These interventions should facilitate access to disease and treatment-related information, provide emotional support, and train coping skills to prevent burden and promote healthy adjustment to the demands of ESRD care.


Assuntos
Filhos Adultos , Falência Renal Crônica , Adulto , Humanos , Pessoa de Meia-Idade , Adaptação Psicológica , Cuidadores/psicologia , Falência Renal Crônica/terapia , Falência Renal Crônica/psicologia , Pais/psicologia , Pesquisa Qualitativa
10.
Scand J Caring Sci ; 36(2): 426-438, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-34921431

RESUMO

INTRODUCTION: The preservation of a well-functioning arteriovenous fistula (AVF) is crucial for successful dialysis in patients with end-stage renal disease (ESRD); nonetheless, complications are frequent which leads to lower quality of life, hospitalisations and death. Self-care behaviours help to reduce the risk of complications and family caregivers can play an important role as partners for behaviour change. However, the patient and family caregiver's experiences with such an invasive intervention are largely unknown. AIMS: This study aimed to explore the experiences of patients with ESRD and their family caregivers with the AVF through joint interviews. METHODS: A qualitative exploratory study was conducted with a purposive sample. Semi-structured joint interviews were conducted with 14 dyads (28 participants) composed of patients on haemodialysis with AVF and their respective family caregivers. Interviews were audiotaped, transcribed verbatim and submitted to thematic analysis. FINDINGS: Four major themes were identified: (i) AVF negative impacts; (ii) (un)presence of self-care behaviours; (iii) AVF self-management facilitators and (iv) AVF self-management barriers. DISCUSSION: The findings suggested that more attention needs to be paid to patients' and their family caregivers' support needs (e.g. fears, concerns, knowledge, adherence barriers and facilitators) regarding AVF self-management. The dyads seem to be aware of how to take care of the AVF; however, self-care behaviours still need to be improved. CONCLUSION: Innovative interventions need to follow an interdisciplinary approach with an educational and support component. The integration of family caregivers should also be considered, since this study evidenced their lack of knowledge and skills, and willingness to participate in these initiatives.


Assuntos
Fístula Arteriovenosa , Falência Renal Crônica , Cuidadores , Feminino , Humanos , Falência Renal Crônica/terapia , Masculino , Qualidade de Vida , Diálise Renal
11.
Scand J Caring Sci ; 36(1): 215-224, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-33778978

RESUMO

INTRODUCTION: Caring for a patient with end-stage renal disease undergoing in-centre haemodialysis can be a stressful experience, likely to involve significant burden. Within the context of the new coronavirus pandemic, these patients are highly vulnerable to infection by COVID-19, which might increase the care demands and burden of family caregivers. AIM: This study aimed to explore the subjective experiences of family caregivers of non-COVID-19 patients with end-stage renal disease undergoing in-centre haemodialysis during the COVID-19 lockdown. STUDY DESIGN: A qualitative study was performed with a purposive sample. METHODS: Semi-structured telephone interviews were conducted with 19 family caregivers (50.7 ± 14 years old) of patients undergoing in-centre haemodialysis in April 2020. FINDINGS: Four major themes were identified: (1) emotional distress; (2) changes in caregiving responsibilities; (3) educational and supportive needs; and (4) coping strategies to deal with the outbreak and with the lockdown. DISCUSSION: The findings suggest that family caregivers of patients undergoing in-centre haemodialysis have to manage several additional care responsibilities due to COVID-19 lockdown. The dialysis team should consider the development of educational and supportive interventions to meet family caregivers' needs, mitigate emotional distress, fears and concerns, and prevent caregiver burden during the COVID-19 pandemic.


Assuntos
COVID-19 , Falência Renal Crônica , Adulto , Cuidadores , Controle de Doenças Transmissíveis , Família , Humanos , Falência Renal Crônica/terapia , Pessoa de Meia-Idade , Pandemias , Assistência ao Paciente , Pesquisa Qualitativa , SARS-CoV-2
12.
Clin Gastroenterol Hepatol ; 19(12): 2567-2576.e9, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-32920215

RESUMO

BACKGROUND & AIMS: In addition to findings from endoscopy, histologic features of colon biopsies have been associated with outcomes of patients with ulcerative colitis (UC). We investigated associations between Geboes scores (a system to quantify structural changes and inflammatory activity in colon biopsies) and UC progression, and the time period over which this association is valid. METHODS: We analyzed data from 399 asymptomatic patients with UC enrolled in the ACERTIVE study, followed at 13 inflammatory bowel disease (IBD) centers in Portugal through 31 December 2019. Blood and stool samples were collected and analyzed, and all patients underwent sigmoidoscopy within 24 h of sample collection. We assessed baseline endoscopic status (Mayo endoscopic subscore), histologic features of 2 sigmoid and 2 rectal biopsies (Geboes score), and concentration of fecal calprotectin (FC). The primary outcome was UC progression (surgical, pharmacologic, and clinical events). We generated survival curves for 36 months or less and more than 36 months after biopsy according to Geboes score using the Kaplan-Meier method and compared findings with those from a log rank test. Cox regression was adjusted for Mayo endoscopic subscore, Geboes score, and level of FC; results were expressed as adjusted hazard ratios (HR) with 95% CIs. RESULTS: Patients with Geboes scores >2B.0, Geboes scores >3.0, or Geboes scores >4.0 had a higher frequency of, and a shorter time to UC progression, than patients with Geboes scores ≤2B.0, Geboes scores ≤3.0, or Geboes score ≤4.0 (P < .001). Disease progression occurred earlier in patients with Geboes scores >2B.0, Geboes scores >3.0, or Geboes scores >4.0 compared with patients with Geboes scores ≤2B.0 (HR, 2.021; 95% CI, 1.158-3.526), Geboes scores ≤3.0 (HR, 2.007; 95% CI, 1.139-3.534), or Geboes scores ≤4.0 (HR, 2.349; 95% CI, 1.269-4.349), respectively, in the first 36 months after biopsy. Similar results were found for patients with concentrations of FC below 150 µg/g. CONCLUSIONS: We found histologic features of colon biopsies (Geboes score) to be an independent risk factor for progression of UC in the first 36 months after biopsy.


Assuntos
Colite Ulcerativa , Biomarcadores/análise , Biópsia , Colite Ulcerativa/diagnóstico , Colo , Colonoscopia , Fezes/química , Humanos , Mucosa Intestinal , Complexo Antígeno L1 Leucocitário , Índice de Gravidade de Doença
13.
Lupus ; 30(2): 342-346, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33215560

RESUMO

Cardiac involvement in systemic lupus erythematosus (SLE) is well documented. The pericardium, myocardium and endocardium, as well as the coronary arteries, the valves and the conduction system can all be affected. While pericarditis is common, arrythmias are less frequently described.We present a 13-year-old male, who had fatigue, anorexia, weight loss, myalgias and arthralgias for four months. On physical examination, we identified bradycardia (heart rate 31-50 bpm), oral and nasal ulcers and polyarthritis. The laboratory results showed hemolytic anemia, hypocomplementemia, antinuclear and anti-dsDNA antibodies, hematuria and non-nephrotic proteinuria. Renal function was normal. Lupus nephritis class II was diagnosed by kidney biopsy. On the transthoracic echocardiogram we identified a minimal pericardial effusion, suggesting pericarditis, and, on the electrocardiogram, we detected sinus arrest with junctional rhythm, denoting sinus node dysfunction. The patient was diagnosed with juvenile SLE with cardiac, renal, musculoskeletal and hematologic involvement. Disease remission and cardiac rhythm control were obtained with steroids and mycophenolate mofetil. Currently, the patient is asymptomatic, with normal sinus rhythm.We described an adolescent with SLE who had sinus node dysfunction upon diagnosis. Other cases have been reported in adults but none in juvenile SLE. All SLE patients should have a thorough cardiac examination to promptly diagnose and treat the innumerous cardiac manifestations of this disease.


Assuntos
Lúpus Eritematoso Sistêmico/diagnóstico , Síndrome do Nó Sinusal/etiologia , Adolescente , Bradicardia/etiologia , Eletrocardiografia , Hematúria/etiologia , Humanos , Glomérulos Renais/patologia , Lúpus Eritematoso Sistêmico/complicações , Nefrite Lúpica/etiologia , Nefrite Lúpica/patologia , Masculino , Derrame Pericárdico/etiologia , Pericardite/etiologia , Proteinúria/etiologia , Síndrome do Nó Sinusal/diagnóstico
14.
Semin Dial ; 34(1): 66-76, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32939844

RESUMO

For individuals with end-stage renal disease (ESRD), the novel coronavirus can present several additional challenges in disease self-management. This study aimed to explore the impacts of the COVID-19 pandemic in non-COVID-19 patients with ESRD undergoing in-center hemodialysis (HD). A mixed-methods study was conducted with a purposive sample recruited from one dialysis unit in Portugal. Quantitative data were collected retrospectively from patients' medical records from February 2020 (T1-before the outbreak) and from April 2020 (T2-during lockdown). Semi-structured interviews were conducted with 20 patients (66.9 ± 11.9 years old) undergoing HD for an average of 46.1 months (±39.5) in April 2020. Overall results suggested that dialysis adequacy and serum albumin levels decreased significantly at T2, while phosphorus levels increased. The findings from thematic analysis suggested several psychosocial negative impacts and impacts on disease and treatment-related health behaviors (eg, difficulties managing dietary restrictions during the lockdown and diminished physical activity), which can partially explain these quantitative results. However, some patients were also able to find positive impacts in this experience and problem-focused and emotional strategies were identified to cope with the demands of COVID-19. Several recommendations have been made to mitigate patients' emotional, relational, and educational unmet needs during the current pandemic and in the event of new outbreaks.


Assuntos
COVID-19/epidemiologia , Falência Renal Crônica/terapia , Diálise Renal/psicologia , Adaptação Psicológica , Idoso , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pandemias , Portugal/epidemiologia , Estudos Retrospectivos , SARS-CoV-2
15.
Health Qual Life Outcomes ; 19(1): 59, 2021 Feb 18.
Artigo em Inglês | MEDLINE | ID: mdl-33602252

RESUMO

BACKGROUND: The Short Inflammatory Bowel Disease Questionnaire (SIBDQ) is a widely used instrument to assess Health-related Quality of Life (HRQoL) among inflammatory bowel disease (IBD) patients. Our aim was to translate and adapt the SIBDQ so that it could be adequately used in Portugal. METHODS: This is a prospective design cohort study undertaken at a tertiary hospital. This study took place simultaneously with the first part of the SexIDI study, a study aiming to assess the impact of IBD on patients' sexual QoL. The original SIBDQ was translated by two independent translators and adapted by an IBD expert panel following the opinions of a convenient sample of 5 IBD patients. Afterwards, IBD patients from the outpatient clinic were consecutively invited to fill the Portuguese version of the questionnaire (SIBDQ-PT) at three different timepoints (0, 2, 4 weeks). Ninety-two patients completed the SIBDQ-PT at baseline, whereas 33 did so after 2 and 4 weeks (approximately). Statistical analysis was performed using SPSS version 25, and the following aspects were analysed: reliability (through internal consistency, test-retest and intraclass correlation), validity (through exploratory factor analysis [EFA], and Pearson correlation coefficient for linear correlations), score distribution, and responsiveness analysis (through t-student tests). RESULTS: Overall, SIBDQ-PT was shown to have a high internal consistency (Cronbach's α = 0.80) and a high test-retest reliability (0.80 [CI 0.74-0.86] and 0.69 [CI 0.50-0.82]). EFA detected four dimensions-bowel, social, emotional and systemic. As expected, an overall SIBDQ-PT score was positively correlated with sexual satisfaction (r = 0.27; p < 0.05) and negatively correlated with depression (r = - 0.63; p < 0.01). Moreover, SIBDQ-PT was found to have an adequate score distribution, and to be responsive, as there was a significant subscore change for patients who reported an "overall worsening in general well-being" (0.93 ± 0.13 decrease; p < 0.01). CONCLUSIONS: The Portuguese version of the SIBDQ hereby presented is a reliable, valid and responsive instrument that can be used to measure HRQoL among Portuguese IBD patients.


Assuntos
Doenças Inflamatórias Intestinais , Qualidade de Vida , Inquéritos e Questionários , Traduções , Adolescente , Adulto , Feminino , Humanos , Idioma , Masculino , Pessoa de Meia-Idade , Portugal , Estudos Prospectivos , Reprodutibilidade dos Testes , Adulto Jovem
16.
Clin Rehabil ; 35(6): 812-828, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33530715

RESUMO

OBJECTIVES: This umbrella review aimed to understand the clinical benefits and adverse events associated with different modalities of intradialytic exercise in patients with end-stage renal disease undergoing hemodialysis. DATA SOURCES: The search was performed until September 10th, 2020 on Scopus, Web of Science, the Cochrane Database, CINAHL, and PubMed. METHODS: This umbrella review was conducted following the PRISMA guideline statement. The methodological quality of the reviews was assessed with the AMSTAR-2. Standardized mean differences with 95% confidence intervals were estimated. The I-squared statistic was used to assess heterogeneity and the Eggers' test was performed to test asymmetry/small-study effects. RESULTS: Eleven reviews were included and 48 unique meta-analyses were examined. Nine were supported by suggestive evidence (P < 0.05, small heterogeneity, absence of small-study effects, and excess significance bias). Clinical benefits were found for functional capacity associated with aerobic exercise (d = 0.81; k = 6), resistance training (d = 0.58; k = 6), neuromuscular electrical stimulation (d = 0.70; k = 5), and inspiratory muscle training (d = 1.13; k = 2), measured by the distance covered in the 6-minutes walking test. This outcome was also associated with aerobic exercise (d = 0.28; k = 7) and combined exercise, measured by VO2peak (d = 1.01; k = 5) and by the duration of the cardiopulmonary test (d = 1.07; k = 4). Isometric quadriceps muscle strength improved with neuromuscular electrical stimulation (d = 1.19; k = 7) while patients' perception of vitality improved with combined exercise (d = 0.60; k = 3). CONCLUSIONS: Suggestive evidence was found for the associations between various modalities of intradialytic exercise and functional capacity. Combined exercise was associated with improvements in physical and psychosocial variables. Few or no adverse events were reported.


Assuntos
Terapia por Exercício/métodos , Exercício Físico , Falência Renal Crônica/reabilitação , Diálise Renal/efeitos adversos , Feminino , Humanos , Masculino , Metanálise como Assunto , Desempenho Físico Funcional , Qualidade de Vida , Revisões Sistemáticas como Assunto , Teste de Caminhada
17.
J Clin Nurs ; 30(15-16): 2131-2150, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-33555631

RESUMO

AIMS: To assess the clinical utility of the Distress Thermometer (DT) in non-cancer populations. METHODS: The search was performed between the 6th and the 18th of April 2020, on the following databases: Web of Science (all databases included), Scopus and Science Direct. One last update was performed on 5 June 2020. The findings were reported using the PRISMA-ScR. RESULTS: Fifty-three studies were included. Overall results indicated that this tool has been used in several contexts and populations (clinical and non-clinical). The DT is highly accessible, suitable and relevant for health professionals and/or researchers who aim to use it as a distress screening tool, particularly in patients with chronic physical conditions. Assumptions about its practicality and acceptability in non-oncology care should be made with caution since few studies have explored the psychometric qualities of this instrument, the completers' perceptions about completing the DT and the perceptions of health professionals who administer the tool. CONCLUSIONS: This lack of information undermines conclusions about the overall clinical utility of the DT as a screening tool for distress in individuals who do not have cancer. IMPLICATIONS FOR PRACTICE: Future research should aim to fill this gap and investigate the psychometric qualities of the DT through validation studies and, thus, increase the rigour of its application and clinical utility in non-oncological contexts.


Assuntos
Neoplasias , Termômetros , Humanos , Programas de Rastreamento , Psicometria , Estresse Psicológico/diagnóstico
18.
Scand J Caring Sci ; 35(4): 1216-1225, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33615525

RESUMO

INTRODUCTION: End-stage renal disease (ESRD) and the need for haemodialysis (HD) treatment are increasing. The course of the disease and all the life readjustments needed may generate a multitude of fears in patients and families. AIM: This study aimed to explore the main fears and concerns of patients with ESRD undergoing HD and their family members. STUDY DESIGN: A qualitative study was performed. METHODS: Individual semi-structured interviews were conducted with three groups: 20 patients, 14 family caregivers and 15 patient-family dyads. Interviews were audiotaped, transcribed verbatim and submitted to thematic analysis. FINDINGS: Five major themes emerged: (i) fear of death (fear of earlier death, fear of a sudden death and fear of dying); (ii) fear of problems during HD (fears related to the vascular access, and fear of complications during HD); (iii) concerns related to the disease (fear of loss of autonomy, fears of getting worse, fears related to renal transplantation and concerns about dietary restrictions); (iv) fear about the future; and (v) absence of fears and concerns. DISCUSSION: Patients with ESRD undergoing HD and their family members expressed different fears related to the disease and the treatments required. Renal care staff must acknowledge and understand such concerns and help patients and families to cope. This is important to improving people's quality of life (QoL), the dialogue between health professionals, patients, and family members, and the care offered by the dialysis care settings. Moreover, this study highlights the impact this disease has at a familial level. Future family-based interventions should acknowledge possible fears and concerns of this population and integrate them into their programs.


Assuntos
Falência Renal Crônica , Qualidade de Vida , Família , Medo , Humanos , Falência Renal Crônica/terapia , Pesquisa Qualitativa , Diálise Renal
19.
Fam Process ; 60(4): 1098-1116, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34383317

RESUMO

Family support has been identified as an important factor for the psychological adjustment of patients with chronic physical conditions. This study aimed to systematically review and conduct a meta-analysis of studies comparing the effectiveness of family-based versus patient-oriented interventions for chronic physical conditions. The search was performed between April 12 and April 29, 2021, on Web of Science (all databases included), Scopus, PsycINFO, and CENTRAL. Thirteen RCTs were included. The results favored family-based interventions for various patient outcomes related to pain, distress, self-efficacy, social and emotional function, coping, the welfare of the domestic environment, capacity to mobilize social support, and sexual relationships with medium to large effect sizes (Cohen's d range: 0.45-0.90). This type of intervention also decreased family members' anxiety, depression, sleep problems, and distress, improving search and presence of meaning in life, social support, the support provided to the patient, and sexual relationships with medium to very large effect sizes (Cohen's d range: 0.58-2.76). The meta-analytical findings suggested that the patients' (k = 12, d = 0.34; 95% CI = 0.13-0.55, I2  = 74%, p < 0.01) and family members' (k = 4, d = 0.68; 95% CI = 0.08-1.27, I2  = 88%, p < 0.01) psychosocial outcomes significantly improved with family-based interventions compared with patient-oriented interventions. The meta-analysis of patients' self-efficacy showed a medium-size effect (d = 0.64; k = 3; I2  = 19%). The results suggest a trend toward the beneficial effects of family-based interventions, but more research is needed with higher quality RCTs to confirm this hypothesis.


El apoyo familiar se ha reconocido como un factor importante para la adaptación psicológica de los pacientes con enfermedades físicas crónicas. El presente estudio tuvo como finalidad analizar sistemáticamente y realizar un metaanálisis de estudios que comparan la eficacia de las intervenciones familiares y de las orientadas al paciente en las enfermedades físicas crónicas. La búsqueda se realizó entre el 12 de abril y el 29 de abril de 2021 en Web of Science (se incluyeron todas las bases de datos), Scopus, PsycInfo, y CENTRAL. Se incorporaron trece ensayos clínicos aleatorizados y controlados. Los resultados favorecieron las intervenciones familiares en los casos de diferentes desenlaces de los pacientes relacionados con el dolor, el distrés, la autoeficacia, la función social y emocional, el afrontamiento, el bienestar del entorno doméstico, la capacidad de movilizar el apoyo social, y las relaciones sexuales con tamaños del efecto entre medianos y grandes (rango de la d de Cohen: entre 0.45 y 0.90). Este tipo de intervención también disminuyó la ansiedad, la depresión, los problemas de sueño y el distrés de los miembros de la familia, mejoró la búsqueda y la presencia del significado en la vida, el apoyo social, el apoyo brindado al paciente y las relaciones sexuales con tamaños del efecto entre medianos y muy grandes (rango de la d de Cohen: entre 0.58 y 2.76). Los resultados metaanalíticos sugirieron que los resultados psicosociales de los pacientes (k = 12, d = 0.34; 95 % CI = 0.13­0.55, I2 = 74 %, p<.01) y de los familiares (k = 4, d = 0.68; 95 % CI = 0.08­1.27, I2=88 %, p<.01) mejoraron considerablemente con las intervenciones familiares en comparación con las intervenciones orientadas a los pacientes. El metaanálisis de la autoeficacia de los pacientes demostró un efecto de tamaño mediano (d = 0.64; k = 3; I2 = 19 %). Los resultados sugieren una tendencia hacia los efectos beneficiosos de las intervenciones familiares, pero se necesitan más investigaciones con ensayos controlados aleatorizados de mayor calidad para confirmar esta hipótesis.


Assuntos
Adaptação Psicológica , Apoio Social , Adulto , Doença Crônica , Família , Humanos , Qualidade de Vida
20.
Neuropsychol Rev ; 30(3): 287-309, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32607817

RESUMO

This systematic review explored the neurobiological mechanisms underlying the clinical time course of cancer-related cognitive impairment (CRCI) in breast cancer patients through the review of longitudinal neuroimaging studies. Before chemotherapy, results reported no evidence for neuropsychological, structural (gray matter) and brain perfusion changes. However, functional brain alterations were evident and revealed a frontoparietal hyperactivation during working memory tasks. Fatigue and number of days since surgery were the two suggested confounding factors. Acutely after chemotherapy, this review found no evidence for neuropsychological changes while suggesting a pattern of frontal structural, perfusion and functional brain abnormalities. These findings seemed to be dependent on age, menopausal status at baseline, and fMRI task performed. Years after chemotherapy, results revealed evidence of partial neuropsychological, structural, and functional brain recovery. Regarding brain abnormality, this review suggested that it may begin quite early in the disease course, be more prominent shortly after chemotherapy and partially recover over time. Several hypotheses underlying these changes were discussed. The present review also provided important information for developing a time-specific treatment and prevention strategies and for the consideration of functional neuroimaging as a relevant tool for CRCI diagnosis, clinical monitoring, and intervention studies. The findings also suggested the need to implement studies with longitudinal designs, including a pre-treatment assessment, since cross-sectional studies were not able to detect this pattern of recovery over time, supporting only the theory of brain abnormalities, in breast cancer survivors.


Assuntos
Neoplasias da Mama/psicologia , Comprometimento Cognitivo Relacionado à Quimioterapia/diagnóstico por imagem , Imageamento por Ressonância Magnética/métodos , Adulto , Encéfalo/fisiopatologia , Disfunção Cognitiva/diagnóstico por imagem , Estudos Transversais , Feminino , Humanos , Estudos Longitudinais , Memória de Curto Prazo , Pessoa de Meia-Idade , Neuroimagem , Testes Neuropsicológicos
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