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1.
Ciênc. Saúde Colet. (Impr.) ; 28(11): 3347-3366, nov. 2023. tab
Artículo en Inglés | LILACS-Express | LILACS | ID: biblio-1520624

RESUMEN

Abstract Aiming to translate, culturally adapt, and psychometrically evaluate the Person-centred Practice Inventory - Staff (PCPI-S) for Portuguese healthcare professionals, this methodological study was conducted sequentially in two phases. Phase I followed the 10-steps recommendations from the ISPOR taskforce for translation and cultural adaptation of patient reported outcome measures. Phase II comprised a quantitative cross-sectional virtual survey of the translated PCPI-S with healthcare professionals, who were reached through snowball sampling from both primary and specialized care settings. The psychometric properties of the PCPI-S were determined by assessing reliability and construct validity. A sample of 304 healthcare professionals participated in Phase II. Ceiling effects were found. The overall internal consistency was excellent (> 0.9). The confirmatory factor analysis showed a good model fit after minor modifications, revealing construct validity, and supporting the theoretical framework. In conclusion, the three-factorial model of PCPI-S adjusted to the studied sample is a valid and reliable instrument to assess the perceptions of healthcare professionals on person-centred practice in various Portuguese clinical contexts. Considering the ceiling effects, the effect of social desirability should be explored.


Resumo Com o objetivo de traduzir, adaptar culturalmente e avaliar psicometricamente o Inventário para a Prática Centrada na Pessoa para profissionais de saúde (PCPI-S) em diversos contextos de prestação de cuidados, este estudo metodológico realizou-se em duas fases sequenciais. A Fase I seguiu as recomendações de dez etapas da taskforce da ISPOR para tradução e adaptação cultural de medidas de resultados auto reportados. A Fase II incluiu um estudo cross-sectional do PCPI-S traduzido com profissionais de saúde, que foram alcançados por meio de amostragem snowball em contextos de cuidados primários e diferenciados. A psicometria do PCPI-S foi analisada pela avaliação da confiabilidade e validade de construto. Uma amostra de 304 profissionais de saúde participou da Fase II. Efeitos de teto foram encontrados. A consistência interna geral foi excelente (> 0,9). A análise fatorial confirmatória mostrou um bom ajuste do modelo e validade de construto, refletindo o referencial teórico. Concluindo, o modelo tri-fatorial do PCPI-S ajustado à amostra estudada é um instrumento válido e fiável para avaliar as percepções dos profissionais de saúde sobre a prática centrada na pessoa em vários contextos de cuidados portugueses. Considerando os efeitos teto, a desejabilidade social deve ser explorada.

2.
Lancet Diabetes Endocrinol ; 11(6): 402-413, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-37127041

RESUMEN

BACKGROUND: Since its outbreak in early 2020, the COVID-19 pandemic has diverted resources from non-urgent and elective procedures, leading to diagnosis and treatment delays, with an increased number of neoplasms at advanced stages worldwide. The aims of this study were to quantify the reduction in surgical activity for indeterminate thyroid nodules during the COVID-19 pandemic; and to evaluate whether delays in surgery led to an increased occurrence of aggressive tumours. METHODS: In this retrospective, international, cross-sectional study, centres were invited to participate in June 22, 2022; each centre joining the study was asked to provide data from medical records on all surgical thyroidectomies consecutively performed from Jan 1, 2019, to Dec 31, 2021. Patients with indeterminate thyroid nodules were divided into three groups according to when they underwent surgery: from Jan 1, 2019, to Feb 29, 2020 (global prepandemic phase), from March 1, 2020, to May 31, 2021 (pandemic escalation phase), and from June 1 to Dec 31, 2021 (pandemic decrease phase). The main outcomes were, for each phase, the number of surgeries for indeterminate thyroid nodules, and in patients with a postoperative diagnosis of thyroid cancers, the occurrence of tumours larger than 10 mm, extrathyroidal extension, lymph node metastases, vascular invasion, distant metastases, and tumours at high risk of structural disease recurrence. Univariate analysis was used to compare the probability of aggressive thyroid features between the first and third study phases. The study was registered on ClinicalTrials.gov, NCT05178186. FINDINGS: Data from 157 centres (n=49 countries) on 87 467 patients who underwent surgery for benign and malignant thyroid disease were collected, of whom 22 974 patients (18 052 [78·6%] female patients and 4922 [21·4%] male patients) received surgery for indeterminate thyroid nodules. We observed a significant reduction in surgery for indeterminate thyroid nodules during the pandemic escalation phase (median monthly surgeries per centre, 1·4 [IQR 0·6-3·4]) compared with the prepandemic phase (2·0 [0·9-3·7]; p<0·0001) and pandemic decrease phase (2·3 [1·0-5·0]; p<0·0001). Compared with the prepandemic phase, in the pandemic decrease phase we observed an increased occurrence of thyroid tumours larger than 10 mm (2554 [69·0%] of 3704 vs 1515 [71·5%] of 2119; OR 1·1 [95% CI 1·0-1·3]; p=0·042), lymph node metastases (343 [9·3%] vs 264 [12·5%]; OR 1·4 [1·2-1·7]; p=0·0001), and tumours at high risk of structural disease recurrence (203 [5·7%] of 3584 vs 155 [7·7%] of 2006; OR 1·4 [1·1-1·7]; p=0·0039). INTERPRETATION: Our study suggests that the reduction in surgical activity for indeterminate thyroid nodules during the COVID-19 pandemic period could have led to an increased occurrence of aggressive thyroid tumours. However, other compelling hypotheses, including increased selection of patients with aggressive malignancies during this period, should be considered. We suggest that surgery for indeterminate thyroid nodules should no longer be postponed even in future instances of pandemic escalation. FUNDING: None.


Asunto(s)
COVID-19 , Neoplasias de la Tiroides , Nódulo Tiroideo , Humanos , Masculino , Femenino , Nódulo Tiroideo/epidemiología , Nódulo Tiroideo/cirugía , Nódulo Tiroideo/diagnóstico , Estudios Transversales , Pandemias , Estudios Retrospectivos , Metástasis Linfática , COVID-19/epidemiología , Neoplasias de la Tiroides/epidemiología , Neoplasias de la Tiroides/cirugía , Neoplasias de la Tiroides/patología
4.
Acta Paediatr ; 112(5): 924-930, 2023 05.
Artículo en Inglés | MEDLINE | ID: mdl-36708086

RESUMEN

Epilepsy surgery is a therapeutic option for selected children with drug-resistant epilepsy. Children who are surgical candidates have a high prevalence of neurodevelopmental comorbidities. There is a lack of adequately sized prospective studies in a number of rare surgical subgroups, especially of outcome domains such as cognitive level and health-related quality-of-life. In this article, we describe method considerations and a study protocol for a Nordic population-based multi-centre follow-up programme covering seizure as well as non-seizure outcomes in children aged <4 years undergoing resective epilepsy surgery and children aged ≤18 years undergoing hemispherotomy, callosotomy or surgery for hypothalamic hamartoma.


Asunto(s)
Epilepsia , Procedimientos Neuroquirúrgicos , Niño , Humanos , Estudios Prospectivos , Resultado del Tratamiento , Procedimientos Neuroquirúrgicos/métodos , Epilepsia/epidemiología , Epilepsia/cirugía , Convulsiones , Estudios Retrospectivos
5.
JMIR Pediatr Parent ; 5(1): e30364, 2022 Mar 08.
Artículo en Inglés | MEDLINE | ID: mdl-35258466

RESUMEN

BACKGROUND: Children with long-term illnesses frequently experience symptoms that could negatively affect their daily lives. These symptoms are often underreported in health care. Despite a large number of mobile health (mHealth) tools, few are based on a theoretical framework or supported by scientific knowledge. Incorporating universal design when developing a product can promote accessibility and facilitate person-centered communication. OBJECTIVE: The aim of this study is to identify the symptom-reporting needs of children with cancer and congenital heart defects that could be satisfied by using a mobile app. Another aim is to evaluate how the child might interact with the app by considering universal design principles and to identify parents' views and health care professionals' expectations and requirements for an mHealth tool. METHODS: User-centered design is an iterative process that focuses on an understanding of the users. The adapted user-centered design process includes 2 phases with 4 stages. Phase 1 involved interviews with 7 children with long-term illnesses, 8 parents, and 19 health care professionals to determine their needs and wishes for support; a workshop with 19 researchers to deepen our understanding of the needs; and a workshop with developers to establish a preliminary tool to further investigate needs and behaviors. Phase 2 involved interviews with 10 children with long-term illnesses, 9 parents, and 21 health care professionals to evaluate the mock-up (prototype) of the mHealth tool. Data were synthesized using the interpretive description technique. RESULTS: A total of 4 aspects of needs emerged from the synthesis of the data, as follows: different perspectives on provided and perceived support; the need for an easy-to-use, non-clinic-based tool to self-report symptoms and to facilitate communication; the need for safety by being in control and reaching the child's voice; and a way of mapping the illness journey to facilitate recall and improve diagnostics. The children with long-term illnesses expressed a need to not only communicate about pain but also communicate about anxiety, fatigue, fear, and nausea. CONCLUSIONS: The findings of this study indicated that the PicPecc (Pictorial Support in Person-Centered Care for Children) app is a potential solution for providing communicative support to children with long-term illnesses dealing with multiple symptoms and conditions. The interview data also highlighted symptoms that are at risk of being overlooked if they are not included in the mobile app. Further studies are needed to include usability testing and evaluation in hospitals and home care settings.

6.
BMJ Open ; 11(5): e042726, 2021 05 04.
Artículo en Inglés | MEDLINE | ID: mdl-33947726

RESUMEN

INTRODUCTION: This study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5-17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison. METHODS AND ANALYSIS: Both effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child's perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council's guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals. TRIAL REGISTRATION: ClinicalTrials.gov; NCT04433650.


Asunto(s)
Comunicación , Atención Dirigida al Paciente , Niño , Estudios Cruzados , Humanos , Autoinforme , Suecia
7.
Clin Case Rep ; 8(12): 2835-2838, 2020 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-33363832

RESUMEN

A case report highlighting the importance of cautious interpretation of thyroglobulin washouts in fine needle aspirates when deciding on management of differentiated thyroid cancer, so as to avoid unnecessary surgery.

8.
ANZ J Surg ; 90(7-8): 1386-1390, 2020 07.
Artículo en Inglés | MEDLINE | ID: mdl-32436238

RESUMEN

BACKGROUND: Clinical audit is a critical quality improvement exercise, yet efficient audit tools are lacking. The main objective of this study was to evaluate a recently deployed database in facilitating the process of clinical audit, and the secondary objective was to evaluate the outcomes of free flap reconstruction of the head and neck at our centre. METHODS: A head and neck cancer-specific database was customized to suit the needs of our head and neck multidisciplinary team. Data has been entered prospectively into this database since March of 2018. An audit of free flap reconstruction of the head and neck over a 12-month period was performed using the database and analysed as a case study to examine its efficacy as a clinical audit tool. Additionally, the outcomes of free flap reconstruction at our centre were compared to those reported in the international literature. RESULTS: The database allows flexible and specific queries, analysis and export of data, and can provide immediate results. However, issues with data quality and completeness were identified. In this audit, the overall 30-day complication rate and 30-day mortality in patients undergoing free flap reconstruction of the head and neck were 58% and 3%, respectively. CONCLUSION: The database is fit for its intended purpose as an audit tool. Outcomes of free flap reconstruction of the head and neck at our centre are comparable to those of institutions overseas.


Asunto(s)
Colgajos Tisulares Libres , Neoplasias de Cabeza y Cuello , Procedimientos de Cirugía Plástica , Neoplasias de Cabeza y Cuello/cirugía , Humanos , Nueva Zelanda/epidemiología , Complicaciones Posoperatorias , Estudios Retrospectivos
9.
Cells ; 8(7)2019 07 13.
Artículo en Inglés | MEDLINE | ID: mdl-31337055

RESUMEN

Tumour hypoxia is a marker of poor prognosis and failure of chemoradiotherapy in head and neck squamous cell carcinoma (HNSCC), providing a strategy for therapeutic intervention in this setting. To evaluate the utility of the hypoxia-activated prodrug evofosfamide (TH-302) in HNSCC, we established ten early passage patient-derived xenograft (PDX) models of HNSCC that were characterised by their histopathology, hypoxia status, gene expression, and sensitivity to evofosfamide. All PDX models closely resembled the histology of the patient tumours they were derived from. Pimonidazole-positive tumour hypoxic fractions ranged from 1.7-7.9% in line with reported HNSCC clinical values, while mRNA expression of the Toustrup hypoxia gene signature showed close correlations between PDX and matched patient tumours, together suggesting the PDX models may accurately model clinical tumour hypoxia. Evofosfamide as a single agent (50 mg/kg IP, qd × 5 for three weeks) demonstrated antitumour efficacy that was variable across the PDX models, ranging from complete regressions in one p16-positive PDX model to lack of significant activity in the three most resistant models. Despite all PDX models showing evidence of tumour hypoxia, and hypoxia being essential for activation of evofosfamide, the antitumour activity of evofosfamide only weakly correlated with tumour hypoxia status determined by pimonidazole immunohistochemistry. Other candidate evofosfamide sensitivity genes-MKI67, POR, and SLFN11-did not strongly influence evofosfamide sensitivity in univariate analyses, although a weak significant relationship with MKI67 was observed, while SLFN11 expression was lost in PDX tumours. Overall, these data confirm that evofosfamide has antitumour activity in clinically-relevant PDX tumour models of HNSCC and support further clinical evaluation of this drug in HNSCC patients. Further research is required to identify those factors that, alongside hypoxia, can influence sensitivity to evofosfamide and could act as predictive biomarkers to support its use in precision medicine therapy of HNSCC.


Asunto(s)
Neoplasias de Cabeza y Cuello , Nitroimidazoles/farmacología , Mostazas de Fosforamida/farmacología , Carcinoma de Células Escamosas de Cabeza y Cuello , Hipoxia Tumoral/efectos de los fármacos , Animales , Sistema Enzimático del Citocromo P-450/metabolismo , Neoplasias de Cabeza y Cuello/tratamiento farmacológico , Neoplasias de Cabeza y Cuello/metabolismo , Humanos , Antígeno Ki-67/metabolismo , Ratones , Ratones Endogámicos NOD , Proteínas Nucleares/metabolismo , Carcinoma de Células Escamosas de Cabeza y Cuello/tratamiento farmacológico , Carcinoma de Células Escamosas de Cabeza y Cuello/metabolismo , Ensayos Antitumor por Modelo de Xenoinjerto/métodos
10.
Eur J Pediatr Surg ; 29(1): 75-84, 2019 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-30261518

RESUMEN

AIM: Despite advances of outcomes of esophageal atresia (EA), knowledge on patients' health-related quality of life (HRQoL) is sparse. Due to the heterogeneity of EA, larger cohorts need to be investigated to ensure reliability of data. Aim was to determine generic HRQoL after EA repair in a Swedish-German cohort. PATIENTS AND METHODS: Ethical approval was obtained. A total of 192 patients (2-18 years; 134 Swedish; 58 German) were included. Clinical data were reviewed. EA was classified in "severe" and "mild/moderate." Pediatric Quality of Life Inventory 4.0 Generic Core Scale (PedsQL 4.0) was used in appropriate versions (2-7 years; 8-18 years; self- [SR] and proxy report [PR]) to determine generic HRQoL. RESULTS: Swedish and German samples were clinically and demographically comparable. HRQoL was lower in "severe EA" versus "mild/moderate" (2-18 years; total score; PR 85.6 vs. 73.6; p < 0.001) and Gross A versus Gross C type EA (2-7 years; total score; PR 61.0 vs. 79.3; p = 0.035). Total HRQoL was higher in the Swedish versus German sample (2-18 years; total score; PR 82.3 vs. 72.7; p = 0.002). HRQoL was impaired in the German sample versus healthy population (2-18 years; total score; PR 72.7 vs. 82.7; p = 0.001). In German patients (8-18 years), HRQoL was higher in SR versus PR (80.7 vs. 74.7; p = 0.044). Patients' age and presence of VACTERL association or isolated anorectal malformations did not affect HRQoL. Various differences were detected regarding different dimensions of PedsQL 4.0. CONCLUSION: In this first international study, we found several differences in perception of generic HRQoL. HRQoL appears to be determined by the type of EA and severity rather than patients' age or the presence of typical associated malformations. Country-specific differences may be culturally dependent, but further investigations are suggested. A condition-specific instrument validated for EA may provide additional insights.


Asunto(s)
Atresia Esofágica/psicología , Atresia Esofágica/cirugía , Calidad de Vida , Adolescente , Factores de Edad , Canal Anal/anomalías , Canal Anal/cirugía , Peso al Nacer , Niño , Preescolar , Atresia Esofágica/diagnóstico , Esófago/anomalías , Esófago/cirugía , Femenino , Estudios de Seguimiento , Alemania , Cardiopatías Congénitas/cirugía , Humanos , Recién Nacido , Recien Nacido Prematuro , Riñón/anomalías , Riñón/cirugía , Deformidades Congénitas de las Extremidades/cirugía , Masculino , Diagnóstico Prenatal , Autoinforme , Índice de Severidad de la Enfermedad , Factores Sexuales , Factores Socioeconómicos , Columna Vertebral/anomalías , Columna Vertebral/cirugía , Suecia , Tráquea/anomalías , Tráquea/cirugía
11.
Laryngoscope ; 128 Suppl 3: S1-S17, 2018 10.
Artículo en Inglés | MEDLINE | ID: mdl-30289983

RESUMEN

This publication offers modern, state-of-the-art International Neural Monitoring Study Group (INMSG) guidelines based on a detailed review of the recent monitoring literature. The guidelines outline evidence-based definitions of adverse electrophysiologic events, especially loss of signal, and their incorporation in surgical strategy. These recommendations are designed to reduce technique variations, enhance the quality of neural monitoring, and assist surgeons in the clinical decision-making process involved in surgical management of recurrent laryngeal nerve. The guidelines are published in conjunction with the INMSG Guidelines Part II, Optimal Recurrent Laryngeal Nerve Management for Invasive Thyroid Cancer-Incorporation of Surgical, Laryngeal, and Neural Electrophysiologic Data. Laryngoscope, 128:S1-S17, 2018.


Asunto(s)
Complicaciones Intraoperatorias/prevención & control , Monitorización Neurofisiológica Intraoperatoria/normas , Traumatismos del Nervio Laríngeo Recurrente/prevención & control , Nervio Laríngeo Recurrente/cirugía , Tiroidectomía/normas , Parálisis de los Pliegues Vocales/prevención & control , Humanos , Complicaciones Intraoperatorias/etiología , Monitorización Neurofisiológica Intraoperatoria/métodos , Traumatismos del Nervio Laríngeo Recurrente/etiología , Glándula Tiroides/inervación , Glándula Tiroides/cirugía , Tiroidectomía/efectos adversos , Tiroidectomía/métodos , Parálisis de los Pliegues Vocales/etiología
12.
Laryngoscope ; 128 Suppl 3: S18-S27, 2018 10.
Artículo en Inglés | MEDLINE | ID: mdl-30291765

RESUMEN

The purpose of this publication was to inform surgeons as to the modern state-of-the-art evidence-based guidelines for management of the recurrent laryngeal nerve invaded by malignancy through blending the domains of 1) surgical intraoperative information, 2) preoperative glottic function, and 3) intraoperative real-time electrophysiologic information. These guidelines generated by the International Neural Monitoring Study Group (INMSG) are envisioned to assist the clinical decision-making process involved in recurrent laryngeal nerve management during thyroid surgery by incorporating the important information domains of not only gross surgical findings but also intraoperative recurrent laryngeal nerve functional status and preoperative laryngoscopy findings. These guidelines are presented mainly through algorithmic workflow diagrams for convenience and the ease of application. These guidelines are published in conjunction with the INMSG Guidelines Part I: Staging Bilateral Thyroid Surgery With Monitoring Loss of Signal. Level of Evidence: 5 Laryngoscope, 128:S18-S27, 2018.


Asunto(s)
Monitorización Neurofisiológica Intraoperatoria/normas , Nervio Laríngeo Recurrente/cirugía , Neoplasias de la Tiroides/cirugía , Tiroidectomía/normas , Parálisis de los Pliegues Vocales/prevención & control , Humanos , Monitorización Neurofisiológica Intraoperatoria/métodos , Laringe/patología , Laringe/fisiopatología , Invasividad Neoplásica , Nervio Laríngeo Recurrente/fisiopatología , Traumatismos del Nervio Laríngeo Recurrente/etiología , Traumatismos del Nervio Laríngeo Recurrente/prevención & control , Neoplasias de la Tiroides/patología , Neoplasias de la Tiroides/fisiopatología , Tiroidectomía/efectos adversos , Tiroidectomía/métodos , Parálisis de los Pliegues Vocales/etiología
13.
JCI Insight ; 3(16)2018 08 23.
Artículo en Inglés | MEDLINE | ID: mdl-30135316

RESUMEN

Evofosfamide (TH-302) is a clinical-stage hypoxia-activated prodrug of a DNA-crosslinking nitrogen mustard that has potential utility for human papillomavirus (HPV) negative head and neck squamous cell carcinoma (HNSCC), in which tumor hypoxia limits treatment outcome. We report the preclinical efficacy, target engagement, preliminary predictive biomarkers and initial clinical activity of evofosfamide for HPV-negative HNSCC. Evofosfamide was assessed in 22 genomically characterized cell lines and 7 cell line-derived xenograft (CDX), patient-derived xenograft (PDX), orthotopic, and syngeneic tumor models. Biomarker analysis used RNA sequencing, whole-exome sequencing, and whole-genome CRISPR knockout screens. Five advanced/metastatic HNSCC patients received evofosfamide monotherapy (480 mg/m2 qw × 3 each month) in a phase 2 study. Evofosfamide was potent and highly selective for hypoxic HNSCC cells. Proliferative rate was a predominant evofosfamide sensitivity determinant and a proliferation metagene correlated with activity in CDX models. Evofosfamide showed efficacy as monotherapy and with radiotherapy in PDX models, augmented CTLA-4 blockade in syngeneic tumors, and reduced hypoxia in nodes disseminated from an orthotopic model. Of 5 advanced HNSCC patients treated with evofosfamide, 2 showed partial responses while 3 had stable disease. In conclusion, evofosfamide shows promising efficacy in aggressive HPV-negative HNSCC, with predictive biomarkers in development to support further clinical evaluation in this indication.


Asunto(s)
Antineoplásicos/uso terapéutico , Biomarcadores de Tumor/análisis , Neoplasias de Cabeza y Cuello/terapia , Nitroimidazoles/uso terapéutico , Mostazas de Fosforamida/uso terapéutico , Carcinoma de Células Escamosas de Cabeza y Cuello/terapia , Adulto , Anciano , Antineoplásicos/farmacología , Biomarcadores de Tumor/genética , Biomarcadores de Tumor/metabolismo , Línea Celular Tumoral , Quimioradioterapia/métodos , Resistencia a Antineoplásicos , Femenino , Técnicas de Silenciamiento del Gen , Neoplasias de Cabeza y Cuello/patología , Neoplasias de Cabeza y Cuello/virología , Humanos , Concentración 50 Inhibidora , Persona de Mediana Edad , Nitroimidazoles/farmacología , Papillomaviridae/aislamiento & purificación , Mostazas de Fosforamida/farmacología , Profármacos/administración & dosificación , Supervivencia sin Progresión , Criterios de Evaluación de Respuesta en Tumores Sólidos , Carcinoma de Células Escamosas de Cabeza y Cuello/patología , Carcinoma de Células Escamosas de Cabeza y Cuello/virología , Secuenciación del Exoma , Ensayos Antitumor por Modelo de Xenoinjerto , Adulto Joven
14.
Int J Qual Stud Health Well-being ; 13(sup1): 1487759, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-29972679

RESUMEN

PURPOSE: This study aimed to describe adolescents' experiences of participating in a health-promoting school-based intervention regarding food and physical activity, with a focus on empowering aspects. Method: The school was located in a urban disadvantaged community in Sweden, characterized by poorer self-reported health and lower life expectancy than the municipality average. Focus group interviews with adolescents (29 girls, 20 boys, 14-15 years) and their teachers (n = 4) were conducted two years after intervention. Data were categorized using qualitative content analysis. RESULTS: A theme was generated, intersecting with all the categories: Gaining control over one's health: deciding, trying, and practicing together, in new ways, using reflective tools. The adolescents appreciated influencing the components of the intervention and collaborating with peers in active learning activities such as practicing sports and preparing meals. They also reported acquiring new health information, that trying new activities was inspiring, and the use of pedometers and photo-food diaries helped them reflect on their health behaviours. The adolescents' experiences were also echoed by their teachers. Conclusions: To facilitate empowerment and stimulate learning, health-promotion interventions targeting adolescents could enable active learning activities in groups, by using visualizing tools to facilitate self-reflection, and allowing adolescents to influence intervention activities.


Asunto(s)
Dieta , Ejercicio Físico , Promoción de la Salud/métodos , Pobreza , Poder Psicológico , Instituciones Académicas , Población Urbana , Adolescente , Conducta del Adolescente , Actitud , Conducta Alimentaria , Femenino , Grupos Focales , Manipulación de Alimentos , Conductas Relacionadas con la Salud , Humanos , Aprendizaje , Masculino , Servicios de Salud Escolar , Clase Social , Deportes , Suecia , Poblaciones Vulnerables
15.
J Pediatr Surg ; 51(4): 563-9, 2016 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-26522897

RESUMEN

BACKGROUND/PURPOSE: The aims were to present the framework for the development a condition-specific health-related quality-of-life (HRQOL) questionnaire for children with esophageal atresia (EA) and to describe HRQOL experiences reported by children and by their parents. METHODS: Utilizing the well-established DISABKIDS methodology, standardized focus group discussions were held and transcribed. HRQOL experiences were identified, content analyzed and evaluated using descriptive statistics. RESULTS: 30 families (18 children 8-17years, 32 parents of children 2-17years) participated in ten focus group discussions. 1371 HRQOL experiences were identified referencing social, emotional and physical aspects of eating and drinking (n=368), relationships with other people (n=283), general life issues; physical activity, sleep and general health (n=202), communicative/interactive processes of one's health condition (n=161), body issues (n=109), bothersome symptoms (n=81), impact of health care use/medical treatment (n=78), confidence in oneself and in the future (n=65) and difficulties because of concomitant anomalies (n=24). A basis of two age-related HRQOL questionnaires for children with EA (2-7years, 8-17years) was subsequently constructed. CONCLUSIONS: EA interacts with various aspects of the child's life. In addition to HRQOL issues of eating and drinking, social dimensions like relationships and interactions with other people seem to be prominent condition-specific HRQOL parameters. The settings for the development of the first condition-specific HRQOL questionnaires for patients with EA are established.


Asunto(s)
Atresia Esofágica , Calidad de Vida , Encuestas y Cuestionarios , Adolescente , Niño , Preescolar , Atresia Esofágica/fisiopatología , Atresia Esofágica/psicología , Femenino , Grupos Focales , Humanos , Masculino , Padres , Autoimagen , Autoinforme
16.
Head Neck ; 36(4): 545-50, 2014 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-23780509

RESUMEN

BACKGROUND: Recognized prognostic indicators for metastatic cutaneous squamous cell carcinoma (SCC) of the head and neck include facial nerve involvement, immune status, and "parotid" staging system (P-stage). We sought to examine the impact of lateral temporal bone resection (LTBR) on prognosis. METHODS: We conducted a retrospective analysis of 160 patients with metastatic cutaneous SCC to the parotid. All patients had parotidectomy and neck dissection; 27% had additional LTBR when the tumor was adherent to the temporal bone. RESULTS: Overall 5-year survival was 48%, disease-specific survival 77%, and locoregional control 83%. Corresponding results for immunocompetent versus immunocompromised were 55%, 86%, and 87% versus 12%, 48%, and 64%. On Cox regression analysis, only immunocompromised status (ie, lymphoproliferative disorder, organ-transplant patient) was prognostically significant (p < .001). CONCLUSION: More radical resection that may include LTBR mitigates the poorer prognosis with advanced disease in our series. Treatment must be individualized in immunocompromised patients who have shortened overall survival.


Asunto(s)
Carcinoma de Células Escamosas/mortalidad , Carcinoma de Células Escamosas/secundario , Neoplasias de la Parótida/mortalidad , Neoplasias de la Parótida/terapia , Neoplasias Cutáneas/patología , Anciano , Anciano de 80 o más Años , Carcinoma de Células Escamosas/patología , Carcinoma de Células Escamosas/terapia , Disección , Nervio Facial/cirugía , Femenino , Humanos , Huésped Inmunocomprometido , Estimación de Kaplan-Meier , Masculino , Disección del Cuello , Glándula Parótida/cirugía , Neoplasias de la Parótida/secundario , Pronóstico , Modelos de Riesgos Proporcionales , Estudios Retrospectivos , Hueso Temporal/cirugía
17.
Acta Paediatr ; 101(9): 964-72, 2012 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-22577752

RESUMEN

AIM: To present data on body size, lifestyle and health status in students in their final year in high schools in Gothenburg area, Sweden, with specific attention to origin and gender. METHODS: Weight, height and waist circumference were measured by standardized procedures. Self-administered questionnaires described dietary habits, sleep, physical activity, body image, country of origin and general health. RESULTS: Eighty-six percent of participants, (2600 girls, 2714 boys, mean age 18.6 years) were of Nordic origin, 86% reported no chronic health problems and 14%/19% of girls/boys were overweight or obese. Girls consumed more vegetables and fruits and fewer sweet drinks than boys, while breakfast consumption was most common in Nordic groups. Boys reported more positive answers than girls regarding body image. Nordic girls had more negative body image and higher morbidity compared with other groups. CONCLUSION: Within this generally healthy cohort, boys were more likely to be overweight/obese than girls, although paradoxically boys were more satisfied with their appearance. Nordic girls constitute a group with particularly high risk of reporting low body self-esteem and chronic morbidity. In the longer term, the current cross-sectional data on body size, lifestyle and health will provide important baseline information for future follow-up studies of health outcomes in later life.


Asunto(s)
Tamaño Corporal , Estilo de Vida , Población Urbana/estadística & datos numéricos , Adolescente , Estatura , Imagen Corporal , Peso Corporal , Ejercicio Físico , Conducta Alimentaria , Femenino , Estado de Salud , Humanos , Masculino , Autoimagen , Sueño , Suecia , Circunferencia de la Cintura , Adulto Joven
18.
ANZ J Surg ; 78(9): 754-8, 2008 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-18844902

RESUMEN

Acinic cell carcinoma is an uncommon malignancy of the salivary glands and as such it has been difficult to accurately delineate its natural history. The aim of this study is to assess the behaviour of acinic cell salivary cancer of the parotid gland presenting to a single head and neck surgical unit in Auckland. The study is a structured review of cases of acinic cell carcinoma of the parotid gland presenting from 2000 to 2006 to the Head and Neck Unit at Auckland Hospital, those identified from the pathology database and the Otobase head and neck database. Case records and pathology reports were reviewed. Fifteen patients were identified, 9 men and 6 women. The mean age was 67.2 years, with range 50-85 years. The mean follow up was 4.4 years and range 1.1-7 years. There was one case of local recurrence during study period and no deaths. Five of 15 patients received postoperative radiotherapy. Postoperative complications consisted of one wound haematoma and two cases of marginal mandibular weakness (one transient and one permanent). Current management strategies are obtaining appropriate rates of recurrence and postoperative complications within the Auckland population.


Asunto(s)
Neoplasias de la Parótida/patología , Neoplasias de la Parótida/cirugía , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Nueva Zelanda , Neoplasias de la Parótida/terapia , Estudios Retrospectivos
19.
J Surg Oncol ; 98(2): 101-5, 2008 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-18523982

RESUMEN

BACKGROUND AND OBJECTIVES: The appreciation of parotid involvement being an independent prognostic factor for metastatic cutaneous squamous cell carcinoma (SCC) is relatively new. A more comprehensive clinical staging system that separates parotid (P) from neck (N) disease, and further stratifies the N category has been proposed [O'Brien et al., Head Neck 2002; 24: 417-422]. This paper presents the clinical outcome of patients with head and neck metastatic cutaneous SCC treated at the four major head & neck surgical oncology centers in New Zealand and tests the proposed staging system, with modifications for pathological staging. METHODS: Patients treated with a curative intent from 1990 to 2005 were identified and re-staged. Survival rates were calculated using the Kaplan-Meier method, and curves were compared with the log-rank test. Multivariate analysis using the Cox regression model was performed to assess the impact of each proposed P and N sub-group, and other parameters. RESULTS AND CONCLUSIONS: One hundred and seventy patients were identified. The 5-year disease-specific survival rate was 69%, and the loco-regional recurrence rate was 36%. The presence of parotid (P < 0.01) or neck (P = 0.01) disease, immunosuppression (P < 0.01) and the uptake of radiotherapy (P < 0.01) impacted significantly on survival. Increasing P or N category worsened the prognosis significantly.


Asunto(s)
Carcinoma de Células Escamosas/mortalidad , Neoplasias de Cabeza y Cuello/mortalidad , Ganglios Linfáticos/patología , Glándula Parótida/patología , Neoplasias Cutáneas/mortalidad , Adulto , Anciano , Anciano de 80 o más Años , Carcinoma de Células Escamosas/patología , Carcinoma de Células Escamosas/terapia , Femenino , Neoplasias de Cabeza y Cuello/patología , Neoplasias de Cabeza y Cuello/terapia , Humanos , Huésped Inmunocomprometido , Masculino , Persona de Mediana Edad , Análisis Multivariante , Recurrencia Local de Neoplasia , Glándula Parótida/cirugía , Pronóstico , Radioterapia Adyuvante , Estudios Retrospectivos , Neoplasias Cutáneas/patología , Neoplasias Cutáneas/terapia , Tasa de Supervivencia
20.
Ambul Pediatr ; 7(5): 374-82, 2007.
Artículo en Inglés | MEDLINE | ID: mdl-17870646

RESUMEN

OBJECTIVE: The instrument Child Health Care-Satisfaction, Utilization and Needs (CHC-SUN) has been developed cross-culturally to evaluate pediatric health care services for children with special health care needs (CSHCN) from the proxy perspective of parents. METHODS: The children of the participating parents received treatment in pediatric specialty clinics in 7 European countries for asthma, cystic fibrosis, diabetes, epilepsy, cerebral palsy, rheumatoid arthritis, and atopic dermatitis. The instrument was developed through a process including literature review, expert consensus, and item generation through focus groups. The pilot instrument was extensively tested to assess psychometric properties, support item reduction, and evaluate clinical validity. The final field version was tested in a new sample of 795 parents in 7 countries. RESULTS: Pilot testing and item reduction resulted in a practical 40-item instrument with 14 single items related to provision of services (module 1), and 26 items related to 6 scales on satisfaction with care (module 2), and 1 item on general satisfaction with care. Satisfaction with care scales showed very good psychometric properties, both initially and in the field version, with Cronbach's alpha ranging between .80 and .95 in the revised scales. Both modules discriminated well between functional status and diagnosis across countries. CONCLUSIONS: A new instrument is available to measure provision of services and satisfaction with care for children with chronic conditions from the perspective of parents. Cross-cultural analysis reveals that the measure is useful in multinational studies evaluating health services against the background of different health systems.


Asunto(s)
Servicios de Salud del Niño , Encuestas de Atención de la Salud , Encuestas y Cuestionarios , Niño , Comparación Transcultural , Accesibilidad a los Servicios de Salud , Humanos , Evaluación de Necesidades , Satisfacción del Paciente
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