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1.
Cancers (Basel) ; 15(15)2023 Aug 03.
Artigo em Inglês | MEDLINE | ID: mdl-37568763

RESUMO

BACKGROUND: Knowledge of quality-of-life after cytoreductive surgery is important to counsel patients with advanced-stage epithelial ovarian cancer prior to surgery. The aim of this study was to determine whether the use of the PlasmaJet Surgical device during cytoreductive surgery has an effect on the quality-of-life of patients with advanced epithelial ovarian cancer. METHODS: Data included in this prospective observational study were derived from the PlaComOv study, in which patients with advanced epithelial ovarian cancer were randomly assigned to have cytoreductive surgery with or without adjuvant use of the PlasmaJet. Quality-of-life was measured before surgery and one, six, 12, and 24 months after surgery with three questionnaires: the EORTC QLQ-C30, QLQ-OV28, and EQ-5D-5L. RESULTS: Between 2018 and 2020, 326 patients were enrolled in the trial. The overall response rate was high, with the lowest response rate at 24 months of 77%. At 6 months, quality-of-life was higher in the intervention group (95%CI 0.009; 0.081, p = 0.045). At 12 months, quality-of-life was higher in the intervention group with fewer symptoms of fatigue, appetite loss, and diarrhea (95%CI 0.6; 10,0, p = 0.027); similarly, patients in the intervention group reported a better body image (95%CI -14.2; -3.0, p = 0.003) and a higher score on the visual analog scale (95%CI 1.99; 11.15, p = 0.005). At 24 months postoperatively, no further difference was found between the two groups except for pain (95%CI -12.9; -0.8, p = 0.027) and body image (95%CI -13.808; -0.733, p = 0.029). A higher quality-of-life in the intervention group was partially explained by the mediator 'surgery outcome'. CONCLUSIONS: This study demonstrated knowledge of patients' quality-of-life until two years after cytoreductive surgery. The use of the PlasmaJet Surgical device during cytoreductive surgery leads to a higher quality-of-life than conventional surgery with electrocoagulation alone. Even after adjustment for the mediator of surgical outcome, a higher quality-of-life was seen in patients who had surgery with the use of the PlasmaJet device.

2.
Cancers (Basel) ; 15(8)2023 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-37190252

RESUMO

Patients treated for vulvar carcinoma may experience losses in mobility and physical activity. In this study, we assess the prevalence and severity of mobility problems using patient-reported outcomes of three questionnaires: EQ-5D-5L to estimate QoL and perceived health; SQUASH to estimate habitual physical activity; and a problem-specific questionnaire on bicycling. Patients treated for vulvar carcinoma between 2018 and 2021 were recruited, and 84 (62.7%) responded. The mean age was 68 ± 12 years (mean ± standard deviation). Self-reported QoL and perceived health were 0.832 ± 0.224 and 75.6 ± 20.0, respectively. Dutch physical activity guidelines were met by 34.2% of participants. Compared to baseline values, the times spent walking, bicycling, and participating in sports were all reduced. During bicycling, patients experienced moderate or severe pain in the skin of the vulva (24.5%), pain in the sit bones (23.2%), chafing (25.5%), or itching (8.9%). Overall, 40.3% experienced moderate or severe bicycling problems or could not bicycle, 34.9% felt that their vulva impeded bicycling, and 57.1% wished to make more or longer bicycling journeys. To conclude, vulvar carcinoma and its treatment reduce self-reported health, mobility, and physical activity. This motivates us to investigate ways to reduce discomfort during physical activities, and help women regain their mobility and self-reliance.

3.
Pediatrics ; 133(6): e1608-15, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24864183

RESUMO

OBJECTIVES: To examine intellectual, behavioral, and emotional functioning of children who have syndromic craniosynostosis and to explore differences between diagnostic subgroups. METHODS: A national sample of children who have syndromic craniosynostosis participated in this study. Intellectual, behavioral, and emotional outcomes were assessed by using standardized measures: Wechsler Intelligence Scale for Children, Third Edition, Child Behavior Checklist (CBCL)/6-18, Disruptive Behavior Disorder rating scale (DBD), and the National Institute of Mental Health Diagnostic Interview Schedule for Children. RESULTS: We included 82 children (39 boys) aged 6 to 13 years who have syndromic craniosynostosis. Mean Full-Scale IQ (FSIQ) was in the normal range (M = 96.6; SD = 21.6). However, children who have syndromic craniosynostosis had a 1.9 times higher risk for developing intellectual disability (FSIQ < 85) compared with the normative population (P < .001) and had more behavioral and emotional problems compared with the normative population, including higher scores on the CBCL/6-18, DBD Total Problems (P < .001), Internalizing (P < .01), social problems (P < .001), attention problems (P < .001), and the DBD Inattention (P < .001). Children who have Apert syndrome had lower FSIQs (M = 76.7; SD = 13.3) and children who have Muenke syndrome had more social problems (P < .01), attention problems (P < .05), and inattention problems (P < .01) than normative population and with other diagnostic subgroups. CONCLUSIONS: Although children who have syndromic craniosynostosis have FSIQs similar to the normative population, they are at increased risk for developing intellectual disability, internalizing, social, and attention problems. Higher levels of behavioral and emotional problems were related to lower levels of intellectual functioning.


Assuntos
Sintomas Afetivos/diagnóstico , Transtornos de Deficit da Atenção e do Comportamento Disruptivo/diagnóstico , Transtornos do Comportamento Infantil/diagnóstico , Transtornos Cognitivos/diagnóstico , Craniossinostoses/diagnóstico , Deficiência Intelectual/diagnóstico , Acrocefalossindactilia/diagnóstico , Acrocefalossindactilia/epidemiologia , Acrocefalossindactilia/psicologia , Adolescente , Sintomas Afetivos/epidemiologia , Sintomas Afetivos/psicologia , Transtornos de Deficit da Atenção e do Comportamento Disruptivo/epidemiologia , Transtornos de Deficit da Atenção e do Comportamento Disruptivo/psicologia , Criança , Transtornos do Comportamento Infantil/epidemiologia , Transtornos do Comportamento Infantil/psicologia , Transtornos Cognitivos/epidemiologia , Transtornos Cognitivos/psicologia , Craniossinostoses/epidemiologia , Craniossinostoses/psicologia , Estudos Transversais , Feminino , Humanos , Deficiência Intelectual/epidemiologia , Deficiência Intelectual/psicologia , Controle Interno-Externo , Entrevista Psicológica , Masculino , Determinação da Personalidade , Fatores de Risco , Transtornos do Comportamento Social/diagnóstico , Transtornos do Comportamento Social/epidemiologia , Transtornos do Comportamento Social/psicologia , Síndrome , Escalas de Wechsler
4.
Childs Nerv Syst ; 28(6): 879-82, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22234545

RESUMO

PURPOSE: We conducted this study to gauge the health-related problems, quality of life and the performance of the Health Utility Index Mark 3 (HUI-3) in patients with syndromic and complex craniosynostosis. Patients with syndromic and complex craniosynostosis have various physical and mental problems. More insight on these problems, per syndrome, could provide guidance to improve patient treatment and follow-up. METHODS: A cross-sectional, comparative study on 131 patients and their parents was performed. Health-related quality of life was measured with the HUI-3 and the Visual Analogue Scale (VAS). All data were compared to a normative Dutch population. Vision, hearing and intelligence were objectively measured. RESULTS: The HUI-3 and the VAS were significant lower compared to the normative Dutch population. All syndromes have a high prevalence of vision and speech problems. Cognitive problems were mainly reported in patients with Apert, Crouzon and Muenke syndrome. Ambulation and dexterity problems were seen in Apert, Crouzon, Saethre-Chotzen and complex craniosynostosis. Only patients with Apert syndrome scored significantly worse on pain. The HUI-3 had a medium to strong correlation with the objectively measured outcomes. CONCLUSIONS: The overall quality of life is lower in patients with syndromic and complex craniosynostosis. To improve quality of life, more attention is needed for problems with vision and speech.


Assuntos
Craniossinostoses/complicações , Deficiências do Desenvolvimento/epidemiologia , Deficiências do Desenvolvimento/etiologia , Qualidade de Vida , Criança , Estudos Transversais , Feminino , Humanos , Masculino
5.
J Dev Behav Pediatr ; 32(3): 233-8, 2011 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-21297497

RESUMO

OBJECTIVE: This study aimed at evaluating the impact of syndromic craniosynostosis on quality of life, assessing the association between the presence of craniosynostosis syndrome and prevalence of behavioral problems and assessing the impact of obstructive sleep apnea (OSA) in syndromic craniosynostosis compared with healthy controls. METHOD: A prospective study was carried out using the Obstructive Sleep Apnea-18 (OSA-18) survey and Child Behavior Checklist (CBCL) in 119 syndromic craniosynostosis patients and the OSA-18 survey in 459 controls. The craniosynostosis population underwent a polysomnography to diagnose OSA. RESULTS: The total OSA-18 score and scores on the domains sleep disturbance, physical suffering, and caregiver concerns were significantly higher in the craniosynostosis group than in controls. Subgroup analysis revealed behavioral problems in 67% and 50% of boys with Apert and Muenke syndrome, respectively. Correlations between obstructive apnea-hypopnea index and total OSA-18 and CBCL scores were significant. Mean scores for the domains sleep disturbance and physical suffering were significantly higher in moderate OSA. CONCLUSIONS: OSA is related with a lower quality of life in children with syndromic craniosynostosis. Behavioral problems were more common in boys with Apert and Muenke syndrome. OSA-18 and CBCL scores were correlated with OSA severity.


Assuntos
Transtornos do Comportamento Infantil/etiologia , Craniossinostoses/complicações , Qualidade de Vida , Apneia Obstrutiva do Sono/complicações , Adolescente , Criança , Transtornos do Comportamento Infantil/fisiopatologia , Craniossinostoses/psicologia , Feminino , Humanos , Masculino , Polissonografia , Estudos Prospectivos , Fatores de Risco , Fatores Sexuais , Apneia Obstrutiva do Sono/psicologia , Síndrome
6.
J Dev Behav Pediatr ; 32(1): 27-33, 2011 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-21160438

RESUMO

OBJECTIVE: Obstructive sleep apnea (OSA) affects a person's quality of life. A questionnaire, the OSA-18, is available to measure quality of life in children with OSA not caused by specific craniofacial syndromes. We assessed the internal consistency, test-retest reliability, and discriminative validity of the OSA-18 in children with syndromic and complex craniosynostosis; we also applied the OSA-18 in healthy children to obtain reference values. METHOD: The OSA-18 was translated in the Dutch language using the procedure of multiple forward and backward translations. Test-retest reliability and internal consistency were examined. In a prospective study, the craniosynostosis patients underwent an ambulatory polysomnography to diagnose OSA. The ability of the OSA-18 to discriminate between subgroups of patients with or without OSA was evaluated. We compared OSA-18 scores of children with syndromic or complex craniosynostosis with scores in healthy children. RESULTS: The Cronbach's alpha was ≥ 0.70 for the total OSA-18 score and for most of the domains in both the craniosynostosis and general population. In the craniosynostosis group, the test-retest intraclass correlation coefficients were ≥ 0.70, except for the domain physical suffering at 0.69. The discriminative validity of the domains sleep disturbance, physical suffering, caregiver concerns, and total OSA-18 score was significant between the general and craniosynostosis population. CONCLUSION: This study supports the reliability and validity of the OSA-18 in children with syndromic or complex craniosynostosis.


Assuntos
Craniossinostoses/fisiopatologia , Qualidade de Vida , Apneia Obstrutiva do Sono/diagnóstico , Inquéritos e Questionários , Adolescente , Criança , Comorbidade , Craniossinostoses/diagnóstico , Craniossinostoses/epidemiologia , Feminino , Humanos , Masculino , Polissonografia , Estudos Prospectivos , Reprodutibilidade dos Testes , Apneia Obstrutiva do Sono/epidemiologia , Apneia Obstrutiva do Sono/fisiopatologia , Inquéritos e Questionários/normas
7.
J Plast Reconstr Aesthet Surg ; 63(12): 1972-81, 2010 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-20223716

RESUMO

Syndromic craniosynostosis is a congenital disorder characterised by premature fusion of calvarial sutures combined with other anomalies. The facial appearance is different and patients may show physical impairment, mental or developmental disabilities, elevated intracranial pressure and obstructive sleep apnoea. The impact of this condition on daily functioning has not been studied before. The aim of this study is to assess the health-related quality of life in children and adolescents with syndromic or complex craniosynostosis and to determine the impact of these syndromes on parents. A prospective study was performed in 111 children. Health-related quality of life was measured by international standardised quality-of-life questionnaires, the Infant Toddler Quality of Life Questionnaire (ITQoL), Child Health Questionnaire Parental Form 50 (CHQ-PF50), Child Health Questionnaire Child Form 87 (CHQ-CF87) and Short-Form Health Survey (SF-36). For comparison, we used Dutch population norms of health-related quality-of-life-scores. Parents' scores for patients with syndromic or complex craniosynostosis were significantly lower than those for the norm population. Apert syndrome had the largest impact on the different domains. Scores on the CHQ-PF50 scales for 'physical functioning', 'parental impact emotional' and 'family activities' for these patients were significantly lower than scores for patients with other syndromes, possibly due to the complexity of the syndrome, which includes complex syndactyly, cognitive impairment and behaviour problems. Parents reported a reduced health-related quality of life for themselves, mostly psychosocial with clearly significantly lower general health perceptions. In conclusion, syndromic craniosynostosis has a large impact on the health-related quality of life of these children and their parents, both physical and psychosocial.


Assuntos
Craniossinostoses , Saúde da Família , Indicadores Básicos de Saúde , Qualidade de Vida , Acrocefalossindactilia , Adolescente , Criança , Disostose Craniofacial , Humanos , Pais , Estudos Prospectivos , Inquéritos e Questionários , Síndrome
8.
Arch Pediatr Adolesc Med ; 162(11): 1036-41, 2008 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-18981351

RESUMO

OBJECTIVE: To assess long-term health status in patients who survived meningococcal septic shock in childhood. DESIGN: Medical and psychological follow-up of a cross-sectional cohort. SETTING: Pediatric intensive care unit (PICU) of a tertiary care university hospital. PARTICIPANTS: All consecutive patients with septic shock and purpura who required intensive care between 1988 and 2001. Intervention Patients and their parents were invited to our follow-up clinic 4 to 16 years after PICU discharge. OUTCOME MEASURES: Health status was assessed with a standard medical interview, physical examination, renal function test, and the Health Utilities Index Mark 2 (HUI2) and 3 (HUI3). RESULTS: One hundred twenty patients (response rate 71%) participated in the follow-up (median age at PICU admission, 3.1 years; median follow-up interval, 9.8 years; median age at follow-up, 14.5 years). Thirty-five percent of patients had 1 or more of the following neurological impairments: severe mental retardation with epilepsy (3%), hearing loss (2%), chronic headache (28%), and focal neurological signs (6%), like paresis of 1 arm. One of the 16 patients with septic shock-associated acute renal failure at PICU admission showed signs of mild chronic renal failure (glomerular filtration rate, 62 mL/min/1.73 m(2); proteinuria; and hypertension). Scores were significantly lower on nearly all HUI2 and HUI3 attributes compared with Dutch population data, indicating poorer health in these patients. CONCLUSIONS: In patients who survived meningococcal septic shock in childhood, one-third showed long-term neurological impairments, ranging from mild to severe and irreversible. Patients reported poorer general health as measured by HUI2 and HUI3.


Assuntos
Nível de Saúde , Infecções Meningocócicas/epidemiologia , Choque Séptico/epidemiologia , Sobreviventes , Adolescente , Criança , Feminino , Seguimentos , Indicadores Básicos de Saúde , Hospitalização/estatística & dados numéricos , Humanos , Deficiência Intelectual/etiologia , Unidades de Terapia Intensiva Pediátrica/estatística & dados numéricos , Tempo de Internação/estatística & dados numéricos , Masculino , Infecções Meningocócicas/complicações , Infecções Meningocócicas/reabilitação , Respiração Artificial/estatística & dados numéricos , Choque Séptico/reabilitação , Inquéritos e Questionários , Fatores de Tempo
9.
Crit Care Med ; 36(2): 596-602, 2008 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-18216608

RESUMO

OBJECTIVE: To assess health consequences and health-related quality of life (HR-QoL) in children with meningococcal septic shock up to 2 yrs after discharge from the pediatric intensive care unit and to assess their parents. To determine major predictors of that outcome. PATIENTS AND METHODS: A prospective cohort study. Follow-up of all consecutive children with septic shock and purpura requiring intensive care treatment between 2001 and 2005, and their parents. HR-QoL was assessed with the Child Health Questionnaire (children) and Medical Outcomes Study 36-item Short-Form Health Survey (parents). RESULTS: Of 53 eligible families, 47 participated (28 boys/19 girls; median age at the time of pediatric intensive care unit admission, 3.7 yrs; median Pediatric Risk of Mortality score, 21). A total of 26 children (55%) had scars as a result of skin necrosis; two (4%) had amputation of a digit or digits. In 21 children (45%), chronic complaints were reported. Children with and without chronic complaints did not differ significantly with regard to severity of illness and age at the time of pediatric intensive care unit admission. Significantly lower scores were found on HR-QoL scales concerning mainly physical functioning and health perception in comparison with normative data. There was a significant negative association between severity of illness and the HR-QoL scale concerning physical functioning. Children with chronic complaints had significantly lower scores on the HR-QoL scale concerning pain. Eight of 47 mothers (17%) at the time of the study had anxiety or depression requiring professional help. Mothers with and without these problems differed significantly with regard to age of their child at the time of pediatric intensive care unit admission. Parents showed significantly higher scores on HR-QoL scales concerning physical functioning and bodily pain in comparison with normative data. There was a significantly negative association between the presence of emotional problems and HR-QoL scores in mothers. CONCLUSIONS: Up to 2 yrs after discharge from the pediatric intensive care unit, there is still a considerable effect on health and HR-QoL in children, especially on the physical scales. Severity of illness and chronic complaints negatively affected HR-QoL scales in children. Quite a few mothers suffered from emotional problems.


Assuntos
Cuidados Críticos , Infecções Meningocócicas/terapia , Pais/psicologia , Qualidade de Vida , Choque Séptico/terapia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Seguimentos , Nível de Saúde , Inquéritos Epidemiológicos , Humanos , Lactente , Masculino , Infecções Meningocócicas/psicologia , Pessoa de Meia-Idade , Índice de Gravidade de Doença , Choque Séptico/psicologia , Fatores de Tempo , Resultado do Tratamento
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