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1.
Pain Manag ; 14(8): 407-412, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39377447

RESUMO

Pain, a prevalent and debilitating symptom in cancer patients, significantly diminishes the quality of life for both individuals and their families. Addressing this critical issue, our study presents the case of a 15-year-old diagnosed with synchronous multifocal multicentric osteosarcoma. We utilized radiofrequency ablation of bilateral splanchnic nerves, a strategy of multimodal pain and palliative care. This approach not only proved to be safe and effective but also markedly improved the patient's quality of life. Our findings shine a light of hope, emphasizing the paramount importance of innovative pain management in pediatric oncology, especially in the final stages of life. This case report highlights the unwavering dedication to excellence in relieving suffering, offering hope for patients grappling with cancer.


Pain is a common and serious problem for cancer patients, osteosarcoma is a type of bone cancer that often affects children. making life hard for them and their families. We used a therapy called radiofrequency ablation on specific nerves to manage the pain. In the case of the patient's abdominal pain, this therapy was safe, worked well, and greatly improved the patient's quality of life. Our findings show the importance of new pain management methods in helping children with cancer, helping them reduce pain, using fewer strong pain medications and helping children in this case in the final stage of life.


Assuntos
Ablação por Radiofrequência , Nervos Esplâncnicos , Humanos , Adolescente , Nervos Esplâncnicos/cirurgia , Dor Abdominal/etiologia , Osteossarcoma/complicações , Osteossarcoma/cirurgia , Masculino , Cuidados Paliativos/métodos , Neoplasias Ósseas/complicações , Neoplasias Ósseas/cirurgia , Dor Visceral/etiologia , Qualidade de Vida , Dor do Câncer/terapia , Resultado do Tratamento
2.
Int J Palliat Nurs ; 30(3): 120-127, 2024 Mar 02.
Artigo em Inglês | MEDLINE | ID: mdl-38517853

RESUMO

BACKGROUND: A cancer diagnosis has a significant impact on a person's life, both physically and emotionally. However, the oncology patients' QoL (QoL) at different stages of the disease has been under investigated. AIM: To assess and compare the QoL in three groups of oncology patients. METHODS: A comparative study was carried out in an outpatient care service at a public hospital in the state of São Paulo. Data collection involved the use of the Palliative Performance Scale and the McGill QoL Questionnaire. RESULTS: Most participants were women, Catholic and living with a partner. The Palliative Performance Scale revealed a predominance of stable patients (score: ≥70 points). Overall, palliative care patients had lower QoL scores compared to the other groups (p<0.01). CONCLUSION: QoL was worse among palliative care patients. Advanced age, being in palliative care, and have a low-income were negatively associated with a patient's QoL.


Assuntos
Neoplasias , Qualidade de Vida , Humanos , Feminino , Masculino , Brasil , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Inquéritos e Questionários
3.
Clin Transl Oncol ; 26(6): 1429-1437, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38411748

RESUMO

PURPOSE: The optimal drug regimen and sequence are still unknown for patients with metastatic colorectal cancer (mCRC) who are candidates for third-line (3L) or subsequent treatment. The aim of this study is to know the opinion of experts on the most appropriate treatment options for mCRC in 3L and to clarify certain clinical decisions in Spain. METHODS: Using a modified Delphi method, a group of experts discussed the treatment in 3L of patients with mCRC and developed a questionnaire with 21 items divided into 5 sections. RESULTS: After 2 rounds, the 67 panelists consulted agreed on 17 items (81%). They considered that the main objective of 3L is to equally increase survival and improve patients' quality of life (QoL), but preferably the QoL. It was agreed that patients with mCRC in 3L prefer to receive active versus symptomatic treatment. Panelists considered trifluridine/tipiracil (FTD/TPI) to be the best oral treatment available to them in 3L. In patients with MSI-H or dMMR and BRAF V600E, the panelists mostly prefer targeted treatments. Panelists agreed the use of a therapeutic sequence that not only increases outcomes but also allows patients to be treated later. Finally, it was agreed that FTD/TPI has a mechanism of action that allows it to be used in patients refractory to previous treatment with 5-fluorouracil. CONCLUSION: The experts agreed with most of the proposed items on 3L treatment of mCRC, prioritizing therapeutic options that increase survival and preserve QoL, while facilitating the possibility that patients can continue to be treated later.


Assuntos
Protocolos de Quimioterapia Combinada Antineoplásica , Neoplasias Colorretais , Técnica Delphi , Qualidade de Vida , Humanos , Neoplasias Colorretais/tratamento farmacológico , Neoplasias Colorretais/patologia , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Consenso , Pirrolidinas/uso terapêutico , Trifluridina/uso terapêutico , Timina/uso terapêutico , Inquéritos e Questionários , Metástase Neoplásica , Proteínas Proto-Oncogênicas B-raf/genética , Espanha
4.
Rev Alerg Mex ; 70(2): 64-71, 2023 Jun 28.
Artigo em Espanhol | MEDLINE | ID: mdl-37566769

RESUMO

OBJECTIVE: To describe health relaed quality of life in a cohort of stable adult outpatients with hereditary an-gioedema (HAE) with validated tools. METHODS: An observational, cross-sectional, and descriptive study was performed, carried out in patients with hereditary angioedema, coming from the City of Buenos Aires and its provinces: Corrientes, Chubut, Entre Ríos and Santa Fe. The HAE-QoL and SF-12v2 health questionnaires were applied to assess the related quality of life. with health. RESULTS: 100 patients were included; median age: 41.5 years (range: 18-77); 65% were female, and 79% had type 1 HAE. Asymptomatic, mild, moderate and severe cases accounted for 6, 29, 38, and 27% of participants, respectively. Seventeen percent of patients were receiving long-term prophylaxis. Icatibant was the most fre-quent treatment for acute episodes. All health domains SF-12v2 scores were lower than expected in general population, excepting "vitality" and "physical functioning". Total and all specific domains HAE-QoL scores were reduced. Differences between women and men and in every age-defined group were demonstrated for sev-eral specific domains. CONCLUSIONS: Health relaed to quality life was notably reduced in Argentinean patients with HAE, when imple-menting the HAE.QoL, and SF-12v2 questionnaries. The need for multidisciplinary strategies approaching this complex disease is highlighted.


OBJECTIVO: Describir la calidad de vida relacionada con la saluden pacientes adultos, ambulatorios y estables con angioedema hereditario, mediante cuestionarios validados. MÉTODOS: Estudio descriptivo, transversal y observacional, llevado a cabo en pacientes con angioedema here-ditario, procedentes de la Ciudad de Buenos Aires y sus provincias: Corrientes, Chubut, Entre Ríos y Santa Fe. Se aplicaron los cuestionarios HAE-QoL y SF-12v2 para evaluar la calidad de vida relacionada con la salud. RESULTADOS: Se incluyeron 100 pacientes, con mediana de edad de 41.5 años (rango: 18-77), principalmente de género femenino (65%). La forma más frecuente de angioedema hereditario fue el tipo 1 (79%). Los casos asintomáticos, leves, moderados y severos representaron el 6, 29, 38 y 27%, respectivamente. El 17% recibía profilaxis a largo plazo. Icatibant fue el tratamiento más prescrito para los episodios agudos de angioedema. Todos los puntajes de los dominios de salud del SF-12v2 fueron menores de lo esperado, excepto "vitalidad" y "funcionamiento físico". Se observó disminución en los puntajes totales y en todos los dominios del HAE-QoL. Se reconocieron diferencias entre las mujeres y los hombres, y para grupo etario en los puntajes de los dominios específicos. CONCLUSIONES: La calidad de vida relacionada con la salud disminuyó considerablemente en pacientes argentinos con angioedema hereditario al aplicar los cuestionarios HAE-QoL y SF-12v2. Es importante desarrollar estra-tegias multidisciplinarias para abordar esta enfermedad compleja.


Assuntos
Angioedemas Hereditários , Adulto , Masculino , Humanos , Feminino , Angioedemas Hereditários/epidemiologia , Angioedemas Hereditários/tratamento farmacológico , Qualidade de Vida , Argentina/epidemiologia , Estudos Transversais , Inquéritos e Questionários
5.
Front Public Health ; 11: 1163360, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37457286

RESUMO

Purpose: The aim of our study was to validate a German translation of the post-acute (long) COVID-19 quality of life (PAC-19QoL) instrument among German patients with long COVID-19 syndrome. Patients and methods: The PAC-19QoL instrument was translated into the German language and administrated to patients with long COVID-19 syndrome. Cronbach's alpha coefficient was used to analyze the internal consistency of the instrument. Construction validity was evaluated by using Pearson's correlation coefficient and Spearman's rank correlation. Scores of patients and controls were compared using the Mann-Whitney U-test. Results: A total of 45 asymptomatic and 41 symptomatic participants were included. In total, 41 patients with long COVID-19 syndrome completed the PAC-19QoL and EQ-5D-5L questionnaires. PAC-19QoL domain scores were significantly different between symptomatic and asymptomatic participants. All items achieved a Cronbach's alpha >0.7. There was a significant correlation between all domains on the test (p < 0.001), with the highest correlation between total (r = 0.994) and domain 1 (r = 0.991). Spearman's rank correlation analysis confirmed that the instrument items correlated with the objective PAC-19QoL examination findings. Conclusion: The German version of the instrument is valid and reliable and can be a suitable tool for research and daily clinical practice among patients with long COVID-19 syndrome.


Assuntos
COVID-19 , Qualidade de Vida , Humanos , Síndrome de COVID-19 Pós-Aguda , Reprodutibilidade dos Testes , Idioma
6.
JMIR Res Protoc ; 12: e43547, 2023 May 24.
Artigo em Inglês | MEDLINE | ID: mdl-37223986

RESUMO

BACKGROUND: Lung or head and neck cancers are known for their high prevalence and mortality rates. Chemotherapy and radiotherapy are usually recommended as cancer treatment for these malignancies; however, they can negatively impact both the physical and mental status of patients. Hence, it is reasonable to consider resistance and aerobic exercise training to prevent these negative health outcomes. Further, several factors prevent patients from attending outpatient exercise training programs, and, therefore, a semisupervised home-based exercise training program may be seen as a well-accepted alternative. OBJECTIVE: The aim of this study will be to investigate the effects of a semisupervised home-based exercise training program on physical performance, body composition, and self-reported outcomes; changes in the initial cancer treatment dose prescribed; number of hospitalizations at 3, 6, and 9 months; and 12-month survival in people with primary lung or head and neck cancer. METHODS: Participants will be randomly allocated to the training group (TG) or control group (CG). The TG will undergo semisupervised home-based resistance and aerobic exercise training throughout their cancer treatment. The resistance training will be performed using elastic bands (TheraBand) twice a week. The aerobic training (ie, brisk walk) will be performed for at least 20 minutes per day outdoors. The equipment and tools used during the training sessions will be provided. This intervention will start the week before treatment commencement, will be performed throughout the duration of the treatment, and will continue for 2 weeks after treatment completion. The CG will undergo usual care (ie, cancer treatment with no formal exercise prescription). Assessments will take place 2 weeks before the beginning of the usual cancer treatment and 2 weeks after treatment completion. The measures of physical function (peripheral muscle strength, functional exercise capacity, and physical activity), body composition, and self-reported outcomes (symptoms of anxiety and depression, health-related quality of life, and symptoms related to the disease and treatment) will be collected. We will report on any change in the initial cancer treatment dose prescribed; number of hospitalizations at 3, 6, and 9 months; and 12-month survival. RESULTS: In February 2021, the clinical trial registration was approved. Recruitment and data collection for the trial are ongoing (as of April 2023, 20 participants had already been randomized), and findings of this study are likely to be published late in 2024. CONCLUSIONS: This exercise training as a complementary treatment for patients with cancer is likely to promote positive effects on the health outcomes assessed, over and above any change in the CG, and prevent the reduction of initial cancer treatment dose prescribed. If these positive effects are shown, they will likely impact long-term outcomes such as hospitalizations and 12-month survival. TRIAL REGISTRATION: Brazilian Clinical Trials Registry (ReBEC) RBR-5cyvzh9; https://ensaiosclinicos.gov.br/rg/RBR-5cyvzh9. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/43547.

7.
Psicol Reflex Crit ; 36(1): 13, 2023 May 22.
Artigo em Inglês | MEDLINE | ID: mdl-37212958

RESUMO

The aim of the present study was to translate into Spanish and evaluate the psychometric evidence of the Impact on Quality of Life (COV19-QoL) applied to a sample of Peruvian older adults (N = 298; 58.1% women, 41.9% men, mean age 65.34 years [SD = 11.33]). The study used techniques from the Classical Test Theory (CTT) and Item Response Theory (IRT). The findings confirmed the single factor structure of the COV19-QoL, high internal consistency reliability, measurement invariance by gender, and all items demonstrated adequate discrimination and difficulty indices. In this sense, the items allow adequate discrimination between low, medium and high levels of the impact of the COVID-19 pandemic on quality of life. In addition, a greater perceived impact of the pandemic on quality of life is necessary to answer the higher response options of the COV19-QoL. In conclusion, the COV19-QoL is a valid measurement scale of the impact of the COVID-19 pandemic on the quality of life of Peruvian older adults.

8.
Front Psychiatry ; 14: 905377, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37056407

RESUMO

Background: Quality of life (QoL) is a multifactorial concept on the perception of the individual's wellbeing underpinned by environmental, psychological, and physical factors. Several studies have shown changes in QoL in the COVID-19 pandemic and may be due to increases in mortality rates, however, no study has investigated this among Peruvian jungle dwellers. Here, we have sought to estimate the QoL of individuals before and after the increase in cases and deaths from COVID-19. Methods: A questionnaire-based longitudinal study was conducted in 102 inhabitants (mean 40.75 ± 7.49 years). The Spanish version of the WHOQOL-BREF was used in two stages: April and June. The first stage was accomplished before the first confirmed case of COVID-19, and the second stage was when the daily mortality rate was 3.5% with an incidence of 87%. Results: Sixty (54.8%) participants were women, 67 (61.9%) were >31 years, and 38 (34.5%) and 32 (29.1%) participants had primary and secondary education, respectively. In the first and second stage we obtained an overall mean QoL of 46.65 ± 23.2 and 35 ± 27.7 points, respectively. Individuals had significantly lower QoL in the face of increased deaths in physical (p = 0.001), mental (p = 0.028) and environmental (p = 0.001) health domains, with the latter having the greatest impact (51.84 ± 5.81 vs. 16.66 ± 5.55 points). Conclusion: Quality of life of Peruvian jungle dwellers is reduced during periods of increased mortality and incidence by COVID-19. Preventive strategies aimed at reducing the impact of COVID-19 on the mental health and global wellbeing of individuals living in the Amazon are recommended to Peruvian authorities.

9.
Cureus ; 15(1): e34394, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36874708

RESUMO

The perception of survivorship among the cancer communities of the Caribbean is largely unknown. This study focused on determining the perception and interest in cancer survivorship among breast cancer (BC) patients in Trinidad and Tobago, as a preliminary, to introducing a pilot survivorship program and evaluating its impact on this patient population. Participants were given a questionnaire to determine needs, expectations and interest in survivorship care. Baseline measurable outcomes reported in this article include the following: 1. Participants' satisfaction with their medical care follow-up plan (if any), 2. Participants' satisfaction with the amount of information provided by healthcare providers, and 3. Participants' satisfaction with their physician's overall concern about their well-being, ranked on a 5-point Likert scale. Participants also reported on the advice/ guidelines provided by their physicians, after surgery and/or on completion of treatment, what they did to cope with BC, and their expectations of what could have been done to improve the quality of care received. A second questionnaire was then used to measure the level of interest in participating in a Cancer Survivorship Program (CSP) with components such as: nutrition, psychosocial development, spiritual well-being, and yoga and mindfulness. The level of interest was ranked by participants on a 5-point Likert scale. Fifteen themes emerged from participants' responses to the first questionnaire. Nutrition stood out as the module of highest interest, followed by psychosocial development among BC patients.

10.
Contemp Clin Trials Commun ; 31: 101053, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36589863

RESUMO

Background: An increased number of breast cancer patients are challenged by acute and persistent treatment side effects. Oncology guidelines have been establishing physical exercise to counteract several treatment-related toxicities throughout cancer care. However, evidence regarding the optimal dose-response, feasibility, and the minimal resistance exercise volume and/or intensity remains unclear. The ABRACE Study will assess the impact of different resistance training volumes (i.e., single or multiple sets) combined with aerobic exercise on physical and psychological outcomes of breast cancer patients undergoing primary treatment. Methods: This study is a randomized, controlled, three-armed parallel trial. A total of 84 participants, aged ≥18 years, with breast cancer stages I-III, initiating adjuvant or neoadjuvant chemotherapy (≤50% of sessions completed) will be randomized to multiple sets resistance training plus aerobic training group, single set resistance training plus aerobic training group or control group. Neuromuscular and cancer-related fatigue (primary outcomes), muscle strength, muscle thickness, muscle quality by echo intensity, body composition, cardiorespiratory capacity, functional performance, upper-body endurance and quality of life will be measured before and after the 12-week intervention. Our analysis will follow the intention-to-treat approach and per-protocol criteria, with additional sub-group analysis. Discussion: Findings support prescribing exercise during chemotherapy for breast cancer and elucidate the potential role of different resistance training volumes as a management strategy for physical and psychological impairments in women with early-stage breast cancer. Our main hypothesis is for superiority in physical and psychological outcomes for both training groups compared to the control group, with no difference between single or multiple sets groups. Trial registration: Clinical trials NCT03314168.

11.
Clin Transl Oncol ; 25(1): 207-217, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36038750

RESUMO

BACKGROUND: Psychological distress and cognitive impairment are highly prevalent among patients with brain metastases after whole-brain radiotherapy (WBRT). Our purpose was to evaluate the correlations between psychological distress, cognitive impairment and quality of life in patients with brain metastases after WBRT. METHODS: Seventy-one patients with brain metastasis treated with WBRT were enrolled in this study and were investigated with several scales, including the Montreal Cognitive Assessment Scale (MoCA), the Functional Assessment of Cancer Therapy-Cognitive Function version 3 (FACT-Cog, version 3), the Functional Assessment of Cancer Therapy-Brain Module version 4 (FACT-Br, version 4) and the Psychological Distress Thermometer (DT), before and after WBRT. RESULTS: The MoCA, FACT-Cog and FACT-Br scores in patients with brain metastases were significantly decreased after WBRT compared with before WBRT (z = - 7.106, - 6.933 and - 6.250, respectively, P < 0.001), while the DT scores were significantly increased (z = 6.613, P < 0.001). There was an obvious negative correlation between the DT score and the FACT-Cog score (r = - 0.660, P < 0.001), a significant negative correlation between the DT score and the FACT-Br score (r = - 0.833, P < 0.001), and an obvious positive correlation between the FACT-Cog score and the FACT-Br score (r = 0.603, P < 0.001). These results suggest that WBRT can cause cognitive impairment in patients with brain metastases, increase their psychological distress and reduce their quality of life (QOL). CONCLUSION: After receiving WBRT, the cognitive function and QOL of patients with brain metastases were decreased, while psychological distress increased. The cognitive impairment and the decline of QOL after WBRT are associated with increased psychological distress, and that the decline of QOL is associated with cognitive impairment of patients.


Assuntos
Neoplasias Encefálicas , Disfunção Cognitiva , Angústia Psicológica , Humanos , Qualidade de Vida , Disfunção Cognitiva/etiologia , Irradiação Craniana/efeitos adversos , Irradiação Craniana/métodos , Neoplasias Encefálicas/radioterapia , Neoplasias Encefálicas/secundário , Encéfalo
12.
Psicol. reflex. crit ; 36: 13, 2023. tab, graf
Artigo em Inglês | LILACS, Index Psicologia - Periódicos | ID: biblio-1507180

RESUMO

Abstract The aim of the present study was to translate into Spanish and evaluate the psychometric evidence of the Impact on Quality of Life (COV19-QoL) applied to a sample of Peruvian older adults ( N = 298; 58.1% women, 41.9% men, mean age 65.34 years [SD = 11.33]). The study used techniques from the Classical Test Theory (CTT) and Item Response Theory (IRT). The findings confirmed the single factor structure of the COV19-QoL, high internal consistency reliability, measurement invariance by gender, and all items demonstrated adequate discrimination and difficulty indices. In this sense, the items allow adequate discrimination between low, medium and high levels of the impact of the COVID-19 pandemic on quality of life. In addition, a greater perceived impact of the pandemic on quality of life is necessary to answer the higher response options of the COV19-QoL. In conclusion, the COV19-QoL is a valid measurement scale of the impact of the COVID-19 pandemic on the quality of life of Peruvian older adults.


Assuntos
Humanos , Masculino , Feminino , Idoso , Traduções , Inquéritos e Questionários , Reprodutibilidade dos Testes , COVID-19/psicologia , Peru , Psicometria , Qualidade de Vida/psicologia , Saúde Mental/estatística & dados numéricos
13.
Sleep Med X ; 3: 100035, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34169271

RESUMO

OBJECTIVE/BACKGROUND: Consumption of added sugar and excessive screen-time is increasing worldwide and is associated with sleeping and behavior disorders, which are related with possible Sleep Bruxism (SB) in children. Therefore, the objective of this investigation was to examine the relationship between screen-time and sugar-consumption and possible SB in children. PATIENTS/METHODS: A cross-sectional study, including parents of 460 4- to 8-year-old children, was performed. Frequency of possible SB was assessed with the Children's Sleep Habits Questionnaire; sugar consumption with the Health Behaviour in School-Aged Children Food-Frequency Questionnaire. Comprehensive measures of screen-time (including cell phones, computers, electronic devices, electronic games, and TV) were taken. The time was recorded in hour/day. All data were analyzed with STATA© data analysis and statistical software version 13.0 (Copyright 1996-2016; Stata-Corp LP, College Station, TX, USA). Spearman correlation test and ordinal-multiple-variable regression analyses were used. RESULTS: Data of 440 subjects Mean age 6.2 years (S.D. 1.8) were analyzed. Prevalence of possible SB was 35% and screen-time was available for 92.9% of the children. Mean screen-time was 2.1 h/day. Parents reported 73% of the children (n = 319) to consume added sugar once a day every day and 20% more than once every day. Correlations of possible SB were statistically significant with screen-time (Rho = 0.8; p = 0.002) and sugar-consumption (Rho = 0.7; p = 0.03). Associations were found between possible SB and increase-to-increase screen-time and sugar-consumption (OR > 2). CONCLUSION: The results of this study demonstrated that as screen-time and sugar consumption increased, the frequency of bruxism in children increased.

14.
Mol Genet Metab Rep ; 28: 100769, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-34113545

RESUMO

BACKGROUND: There is a paucity of real-world epidemiological data on patients with mucopolysaccharidoses (MPS) in Latin America. This real-world study assessed the disease burden, management patterns and multidisciplinary clinical approaches for MPS-IVA and MPS-VI patients in Latin America (Colombia, Ecuador, Mexico, Peru). METHODS: Data were collected from physicians/specialists experienced in treating MPS patients between April-June 2020, via an online patient-diary survey. RESULTS: Overall, 29 physicians/specialists participated in this study. Data from 98 patients were analyzed (MPS-IVA, 71 patients and MPS-VI, 27 patients). Mean age for MPS-IVA patients was 17.5 years and for MPS-VI patients was 11.6 years, and the majority were females (52% and 78%, respectively). MPS-IVA and VI patients presented a high absenteeism from school (55% and 37%, respectively; <18 years age) and workplace (78% and 100%, respectively; >18 years age), indicating an impact of the disease on some aspects of the patients' quality of life. The onset of the first symptom occurred at the age of 3.1 years for MPS-IVA patients and at 1 year for MPS-VI, with delay in diagnosis (3.5-3.9 years from symptom onset) and enzyme replacement therapy (ERT) initiation (1.1-3.6 years from diagnosis). ERT interruptions were observed for MPS-IVA (48%) and MPS-VI patients (44%), with non-availability of medication recorded as the main reason for non-adherence (46% and 60% patients, respectively). ERT showed noticeable treatment benefits in MPS-IVA/VI patients, with stabilization/reduction in complications or the number of surgeries. A multidisciplinary clinical team approach was used for patient management. CONCLUSION: The disease burden for MPS-IVA/VI was high in Latin America, with consistent management, treatment and socio-demographic trends throughout the region.

15.
Acta Neurol Scand ; 144(5): 546-552, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34131909

RESUMO

OBJECTIVES: The aim of this study was to achieve the translation and cross-cultural adaptation of the MG-QOL15R questionnaire into Spanish and the analysis of its psychometric properties. MATERIALS AND METHODS: We recruited patients with MG, ≥18 years old, whose mother tongue was Spanish. After the translation and cross-cultural adaptation of the MG-QOL15-R, the following tests were performed: internal consistency using the Cronbach-α coefficient and corrected item-total correlations; reproducibility with a test-retest analysis using intraclass correlation coefficients; and concurrent validity using Spearman's correlation coefficient of the Spanish language MG-QOL15R-S, Myasthenia Gravis Activity of Daily Living (MG-ADL) and Quantitative Myasthenia Gravis (QMG) scores. As an approximation to construct validity, the nonparametric Mann-Whitney U test was performed between MG-QOL15R-S scores according to the Myasthenia Gravis Foundation of America classification. RESULTS: A total of 83 MG patients were enrolled, mean age 48.19 ± 17.25 years; 58 (69.9%) were women. The mean MG-QOL15R-S score was 11.3 ± 7.1. Cronbach-α coefficient was 0.92. Item-total correlation ranged between 0.43 and 0.75. Intraclass correlation coefficient was 0.80. The Spearman correlation coefficient was 0.637 (p-value < .001) for MG-ADL and 0.487 (p-value < .001) for QMG. Mann-Whitney U tests of the mean MG-QOL15R-S scores were significantly different according to the clinical severity (p-value < .001). CONCLUSIONS: The Spanish version of the MG-QOL15R is a valid and reliable instrument and potentially useful for measuring health-related quality of life in Spanish-speaking MG patients.


Assuntos
Miastenia Gravis , Qualidade de Vida , Adolescente , Adulto , Idoso , Feminino , Humanos , Idioma , Pessoa de Meia-Idade , Miastenia Gravis/diagnóstico , Reprodutibilidade dos Testes , Inquéritos e Questionários
16.
Prensa méd. argent ; Prensa méd. argent;107(2): 92-96, 20210000. tab, fig, graf
Artigo em Inglês | LILACS, BINACIS | ID: biblio-1361369

RESUMO

El tinnitus es la sensación de sonido en ausencia de cualquier fuente externa. Nuestro objetivo fue evaluar la repercusión del tinnitus en la calidad de vida. Se inscribieron 25 pacientes con tinnitus con una amplia gama de umbrales de pérdida auditiva (HLT) y estado de gravedad de tinnitus. La gravedad, la ansiedad y la depresión del tinnitus se evaluaron mediante el inventario de discapacidades por tinnitus (THI), el índice funcional de tinnitus (TFI) y la escala de ansiedad y depresión hospitalaria (HADS), respectivamente. Se realizó una audiometría de conducción aérea de tono puro. El impacto de la percepción del tinnitus en la calidad de vida se encontró más alto en el grupo de sufrimiento. La escala de ansiedad y depresión figuraba en 40% y 60%, respectivamente. El uso de la mano fue de 20 diestros y 5 zurdos. El tinnitus bilateral se está experimentando en el 76%. El LH se presentó en 17 (68%) de los pacientes con tinnitus. La descripción del sonido del tinnitus como silbido (40%), siseo (24%), pulsante (16%), timbre (8%) y ruidos de tono alto (12%). Con respecto al cuestionario THI, los sujetos con tinnitus se dividen en 60% (leve), 30% (moderado) y 10% (grave). Mientras que el cuestionario TFI, el 50% mostró un (leve), el 25% (moderado) y el 25% mostró (severo). Postulamos una fuerte asociación positiva significativa entre HADS y la gravedad del tinnitus: THI (P = 0,000) y TFI (P = 0,001). Esos datos revelaron que la percepción del tinnitus tiene impactos negativos en la calidad de vida mientras que la gravedad puede verse alterada por la lateralidad


Tinnitus is the sensation of sound in the absence of any external source, and the aim is to assess the impaction of tinnitus on QoL. 25-tinnitus sufferers were enrolled with a wide range of hearing loss thresholds (HLT) and tinnitus severity status. Tinnitus severity, anxiety and depression were assessed using tinnitus handicap inventory (THI), tinnitus functional index (TFI), and the hospital anxiety and depression scale (HADS), respectively. Pure tone air conduction audiometry was performed. The impaction of tinnitus perception on QoL was found higher in suffering group. The anxiety and depression scale figured in 40%, and 60%, respectively. The handed use was 20 rights handed and 5 left-handed. Bilateral tinnitus is experiencing in 76%. The HL occurred in 17(68%) of tinnitus patients. The description of tinnitus sound as whistling (40%), hissing (24%), pulsating (16%), ringing (8%), and high pitch noises (12%). Regarding THI questionnaire, tinnitus subjects are divided to 60% (mild), 30% (moderate), and 10% (severe). While TFI questionnaire, 50% showed a (mild), 25% (moderate), and 25% showed (severe). We postulated a strong significant positive association between HADS and tinnitus severity: THI (P=0.000) and TFI (P= 0.001). Those data revealed that tinnitus perception has negative impacts on QoL, and the severity may be altered by laterality.


Assuntos
Humanos , Qualidade de Vida , Audiometria , Limiar Auditivo , Zumbido/diagnóstico , Índice de Gravidade de Doença , Inquéritos e Questionários
17.
Vet Rec ; 187(4): e30, 2020 Aug 22.
Artigo em Inglês | MEDLINE | ID: mdl-32532841

RESUMO

BACKGROUND: The primary purpose of this survey was to determine how veterinary ophthalmologists manage cases of irreversible blindness and to report the most common causes of blindness. METHODS: Respondents completed a questionnaire sent by email with the cooperation of the American College of Veterinary Ophthalmologists, the European College of Veterinary Ophthalmologists and the Latin American College of Veterinary Ophthalmologists. The questionnaire was developed containing 12 questions with both open and closed multiple-choice response options. RESULTS: One hundred and eight veterinary ophthalmologists answered the questionnaire. Of the respondents, 83 per cent had graduated for more than 10 years. Glaucoma (63.56 per cent) was the main cited cause of blindness, followed by progressive retinal atrophy (PRA) (17.80 per cent) and retinal detachment (6.78 per cent). The major concerns of owners refer to the impact of blindness on quality-of-life, (39.31 per cent), followed by depression and anxiety (20 per cent), and environment adaptation (11.72 per cent). General recommendations include avoidance of changes in the domestic environment (18.45 per cent), use of auditory stimulation (14.09 per cent) and avoidance of dangerous areas (12.75 per cent). Almost 31 per cent of professionals do not recommend the use of literature on how to deal with blind pets. CONCLUSIONS: The survey determined glaucoma and PRA as the most common causes of irreversible blindness in pets. Several recommendations that are frequently given to owners of blind pets are presented.


Assuntos
Cegueira/veterinária , Doenças do Gato/terapia , Doenças do Cão/terapia , Oftalmologistas , Medicina Veterinária , Animais , Cegueira/etiologia , Cegueira/terapia , Doenças do Gato/etiologia , Gatos , Doenças do Cão/etiologia , Cães , Feminino , Glaucoma/complicações , Glaucoma/veterinária , Pesquisas sobre Atenção à Saúde , Humanos , Masculino , Propriedade , Animais de Estimação , Degeneração Retiniana/complicações , Degeneração Retiniana/veterinária
18.
Health Qual Life Outcomes ; 18(1): 92, 2020 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-32245483

RESUMO

INTRODUCTION: The impact of advanced laryngeal cancer and its extensive surgical treatments cause significant morbidity for these patients. Total laryngectomy impacts essential functions such as breathing, communication and swallowing, and may influence the quality of life as well as affecting the social life of laryngeal cancer patients. OBJECTIVE: Describe the quality of life and analyze the factors associated with the reduced quality of life in patients who have undergone total laryngectomy. METHOD: Observational cross-sectional study was carried out to evaluate the quality of life of patients who had undergone total laryngectomy due to laryngeal cancer. The fourth version of the UW-QOL Quality of Life Assessment Questionnaire from Washington University, validated for Portuguese, was used. RESULTS: The study population was 95 patients, and the mean composite score of the QOL was 80.4. In the subjective domains the majority of the patients (38.9%) reported they felt much better at present compared to the month before being diagnosed with cancer. When questioned about how they evaluated their health-related quality of life, there was a predominance of those who considered it good (43.2%), and most considered they had a good quality of life (46.3%) considering personal well-being. The overall quality of life was considered good to excellent by 83.2% of the patients. Patients with tracheoesophageal prosthesis reported a better quality of life, compared to patients using an electrolarynx or esophageal voice. CONCLUSION: The high mean value of the composite score for quality of life revealed that the patients assessed their quality of life positively. The absence of vocal emission was the only variable associated with a lower quality of life within the composite score according to the UW-QOL questionnaire.


Assuntos
Laringectomia/psicologia , Qualidade de Vida , Adulto , Idoso , Brasil , Estudos Transversais , Feminino , Humanos , Neoplasias Laríngeas/cirurgia , Laringectomia/efeitos adversos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
19.
Support Care Cancer ; 28(9): 4445-4458, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31925532

RESUMO

PURPOSE: To evaluate the impact of return to work on the quality of life of breast cancer patients and to identify factors related to nonreturn to work. METHODS: An observational, cross-sectional study was performed in breast cancer survivors who had worked before their breast cancer diagnosis. We evaluated factors related to return to work (patient perspective, disease, and work), EORTC quality of life questionnaires (general: EORTC QLQ-C30; and breast cancer-specific: EORTC QLQ-BR23), the Shoulder Pain and Disability Index (SPADI), and the Anxiety and Depression Scale (HADS). Half of the patients underwent a physical therapy examination (shoulder goniometry, hand dynamometry, and limb volume). Univariate and multivariate analysis were performed. RESULTS: We included 304 patients, 163 of whom underwent physiotherapy evaluation. Approximately 54.0% (164) of the patients returned to work after treatment. The women who returned to work presented lower age, higher education levels, higher incomes, and smaller initial tumor size. The women who returned to work had higher scores related to body image and sexual function, lower scores in relation to disability and pain, and lower scores related to anxiety and depression. In the multivariate model to evaluate nonreturn to work, pretreatment variables were age, education level, and clinical staging. Sequelae related to loss of strength increased the risk of nonreturn to work. CONCLUSION: Return to work was influenced by age, education level, previous activity types, axillary treatment, and physical sequelae related to loss of hand strength. Breast cancer treatment decreased the women's work capacity. Return to work improved the patients' quality of life.


Assuntos
Neoplasias da Mama/reabilitação , Qualidade de Vida/psicologia , Retorno ao Trabalho/estatística & dados numéricos , Adulto , Brasil , Institutos de Câncer , Sobreviventes de Câncer , Estudos Transversais , Feminino , Humanos , Pessoa de Meia-Idade , Inquéritos e Questionários
20.
F1000Res ; 9: 1399, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-34621522

RESUMO

Background: The Nottingham Health Profile (NHP) is a generic measure of perceived distress that has been used widely as an outcome measure in clinical practice and trials. The availability of two Brazilian datasets provided the opportunity to assess the psychometric performance of the NHP in different populations - adult growth hormone deficiency (GHD) and pulmonary hypertension (PH). The purpose of the study was to see how valuable the NHP could be in assessing outcomes in diseases where no disease-specific measures are available. Methods: Secondary analyses were performed with NHP data. Patients diagnosed with adult GHD or PH were administered the NHP during clinic visits on two occasions, two weeks apart. A disease-specific measure of quality of life (QoL) was also administered to the relevant sample of patients on each occasion. Results: The psychometric properties of the NHP were good for both disease groups. As expected, both samples reported high scores on energy level, the PH sample scored high on physical functioning and the GHD sample on emotional reactions. For both samples, most of the NHP sections were able to distinguish between groups of respondents with different ratings of perceived general health. While most sections of the NHP were relatively highly correlated with the QoL measures, pain and sleep did not seem to be important predictors of QoL in either of the samples. Conclusions: The use of the NHP in adult GHD and PH populations in Brazil is not recommended as there are high-quality disease-specific measures available for each disease. However, where no disease-specific measures are available, the NHP can provide good descriptive information of the impact of disease on different patient populations.


Assuntos
Hipertensão Pulmonar , Qualidade de Vida , Adulto , Brasil , Hormônio do Crescimento , Humanos , Psicometria
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