Long-term health-related quality of life in 262 patients with brain arteriovenous malformation.

OBJECTIVE: To discover the health-related quality of life (HRQOL) of patients with treated arteriovenous malformation (AVM), we used the self-applicable HRQOL instrument, the 15D, and analyzed the scores in both in the whole study population and specified cohorts. METHODS: The 15D questionnaires were mailed to adult patients with AVM alive in 2016 (n = 432) in our database. Patients with completely eradicated AVM (n = 262) were included in a subsequent analysis. The results were compared with those of the general population standardized for age and sex. Subgroup analyses were conducted for epilepsy, number of bleeding episodes, location of the lesion, modified Rankin Scale score, and Spetzler-Ponce classification (SPC) using independent-samples t test or analysis of covariance. Tobit regression was used to explain the variance in the 15D score. RESULTS: Patients had impaired HRQOL compared to the reference population (p < 0.0001). Deep location, multiple bleeding episodes, and refractory epilepsy were associated with impaired HRQOL. Patients in SPC A and B had similar posttreatment 15D scores, whereas those in class C had an impaired HRQOL. Significant explanatory variables in the regression model were age, sex, number of bleeding episodes, refractory epilepsy, and SPC. CONCLUSIONS: With careful patient selection, patients in SPC B can reach as favorable HRQOL as those in SPC A provided the operation is successful. Multiple bleeding episodes should be prevented with effective treatment aiming at complete AVM obliteration. The postoperative treatment of patients with AVM should focus on preventing depressive symptoms, anxiety, and epileptic seizures. We encourage other research groups to use HRQOL instruments to fully understand the consequences of neurologic and neurosurgical diseases on patients' HRQOL.

The body marked by the arteriovenous fistula: a phenomenological point of view.

OBJECTIVE: To understand the experience of people with chronic kidney disease using arteriovenous fistula. METHOD: Qualitative and exploratory study based on Social Phenomenology, conducted on 30 adults undergoing hemodialysis by using the fistula, interviewed in 2017. The interviews were analyzed according to the empirical-comprehensive model proposed by Amedeo Giorgi. RESULTS: We found the categories "The changed body aesthetics"; "The perception of the other about my body"; and "The fistula as an inseparable condition for life maintenance." FINAL CONSIDERATIONS: The experience of people using fistula showed that this venous access leaves marks that change the body aesthetics, making the body imperfect. Such changes cause low self-esteem and attract the look of the other, causing embarrassment in those who have the body changed. Thus, they react by camouflaging the fistula, without which there is no life. This perception arises from the fear that works as a catalyst for self-care.

The body marked by the arteriovenous fistula: a phenomenological point of view / El cuerpo marcado por la fístula arteriovenosa: una mirada fenomenológica / O corpo marcado pela fístula arteriovenosa: um olhar fenomenológico

ABSTRACT Objective: To understand the experience of people with chronic kidney disease using arteriovenous fistula. Method: Qualitative and exploratory study based on Social Phenomenology, conducted on 30 adults undergoing hemodialysis by using the fistula, interviewed in 2017. The interviews were analyzed according to the empirical-comprehensive model proposed by Amedeo Giorgi. Results: We found the categories "The changed body aesthetics"; "The perception of the other about my body"; and "The fistula as an inseparable condition for life maintenance." Final considerations: The experience of people using fistula showed that this venous access leaves marks that change the body aesthetics, making the body imperfect. Such changes cause low self-esteem and attract the look of the other, causing embarrassment in those who have the body changed. Thus, they react by camouflaging the fistula, without which there is no life. This perception arises from the fear that works as a catalyst for self-care.

RESUMEN Objetivo: Comprender la vivencia de personas con enfermedad renal crónica en uso de fístula arteriovenosa. Método: Estudio cualitativo y exploratorio fundamentado en la fenomenología social, realizado con treinta adultos en tratamiento hemodialítico por medio de fístula, entrevistados en 2017. Los testimonios fueron analizados según el modelo empírico-comprensivo propuesto por Amedeo Giorgi. Resultados: Se desvelaron las categorías "La estética corporal alterada"; "La mirada del otro sobre mi cuerpo"; y "La fístula como condición indisociable al mantenimiento de la vida". Consideraciones finales: La vivencia de personas en uso de fístula reveló que ese acceso venoso deja marcas que alteran la estética corporal, haciendo el cuerpo imperfecto. Esos cambios provocan baja autoestima y atraen la mirada del otro, causando constreñimiento en el que tiene el cuerpo marcado. Este, a su vez, reacciona camuflando la fístula, sin la cual no hay vida. De esa percepción surge el miedo, que actúa como catalizador para el autocuidado.

RESUMO Objetivo: Compreender a vivência de pessoas com doença renal crônica em uso de fístula arteriovenosa. Método: Estudo qualitativo e exploratório, fundamentado na fenomenologia social, realizado com 30 adultos em tratamento hemodialítico por meio de fístula, entrevistados em 2017. Os depoimentos foram analisados segundo o modelo empírico-compreensivo proposto por Amedeo Giorgi. Resultados: Foram desveladas as categorias: A estética corporal alterada; O olhar do outro sobre o meu corpo; e A fístula como condição indissociável à manutenção da vida. Considerações finais: A vivência de pessoas em uso de fístula revelou que esse acesso venoso deixa marcas no corpo que alteram a estética corporal, tornando o corpo imperfeito. Essas alterações provocam baixa autoestima, e atraem o olhar do outro, causando constrangimento naquele que tem o corpo marcado. Esse, por sua vez, reage camuflando a fístula, sem a qual não há vida. Dessa percepção surge o medo, que atua como catalisador para o autocuidado.

Impact of pulmonary arteriovenous malformations on respiratory-related quality of life in patients with hereditary haemorrhagic telangiectasia.

Fifteen to fifty percent of patients with hereditary haemorrhagic telangiectasia have pulmonary arteriovenous malformations. The objective of this study was to measure the effect of the presence of pulmonary arteriovenous malformations and of their embolisation on respiratory-related quality of life (QoL). We prospectively recruited patients with a diagnosis of hereditary haemorrhagic telangiectasia based on the Curaçao criteria and/or the identification of a pathogenic mutation. Respiratory-related quality of life was measured using the Saint George's Respiratory Questionnaire (SGRQ). Patients who underwent embolisation of pulmonary arteriovenous malformations completed the questionnaire before and 6-12 mo after the procedure. The 56 participants were divided into three groups: no pulmonary arteriovenous malformation (group A, n = 10), small pulmonary arteriovenous malformations not accessible to embolotherapy (group B, n = 19), and large pulmonary arteriovenous malformations accessible to embolotherapy (group C, n = 27). The SGRQ score was significantly higher in group C compared to the other groups, indicating a worse respiratory-specific QoL. There was no significant difference between groups A and B. Among the 17 patients who underwent an embolisation, the SGRQ score decreased significantly after the procedure, to a value similar to that in patients without pulmonary arteriovenous malformation. Our results indicate that the presence of large but not small pulmonary arteriovenous malformations negatively affects the respiratory-related quality of life and that embolisation of pulmonary arteriovenous malformations normalizes the respiratory-related quality of life.

Patient attitudes towards the arteriovenous fistula: a qualitative study on vascular access decision making.

BACKGROUND: The use of arteriovenous fistulas (AVFs) among hemodialysis (HD) patients has been consistently associated with lower rates of morbidity and mortality; however, up to 30% of eligible patients refuse the creation or cannulation of an AVF. We aimed to understand the attitudes, beliefs, preferences and values of patients who refused creation or use of an AVF. METHODS: With qualitative methodology, we conducted semi-structured interviews with 13 HD patients (Canada, 2009), who previously refused creation or use of an AVF. Three independent analysts reviewed interview transcripts. RESULTS: We discovered three main themes that impacted the decision to refuse a fistula: (i) poor previous personal or vicarious experiences with the fistula, including cannulation, bleeding, time commitment and appearance; (ii) knowledge transfer and informed decision making. Patients identified information from other patients to be as important as information from health care workers, that information on vascular access (VA) was presented but not understood and that timing of information was crucial with information overload at the start of dialysis and (iii) maintenance of status quo and outlook on life. Some patients stated they live day-to-day without being influenced by the mortality risks with a catheter. CONCLUSIONS: AVF refusal is multifactorial and depends on individual patients. Although nephrologists consider the fistula to be the optimal VA, patients do not think in the same terms of reducing infection rates but focus on the practical day-to-day use of their VA and its influence on their quality of life and future outlook.

Serial position learning effects in patients with aneurysms of the anterior communicating artery.

Ruptured and repaired Anterior Communicating Artery (ACoA) aneurysm can result in devastating impairments involving memory, executive function, confabulation, and personality changes. This study tested serial position learning effects (SPEs) in patients following repaired and ruptured ACoA aneurysm, using results on the Rey Auditory Verbal Learning Test (RAVLT). Thirty patients with ruptured aneurysms of the ACoA and 31 matched controls were included in the study. The primacy-recency effects were maintained during five learning trials in ACoA group, albeit at an overall lower level than in the controls. There was no difference in primacy-recency relation across five learning trials in ACoA group. On the delayed recall trial the patient group demonstrated neither a primacy, nor a recency phenomenon, reflecting a lack of recall of any parts of the word list. This kind of primacy-recency profile across learning trials in ACoA group has no similarity with SPE results in frontal lesion groups, or with SPE distributions in other amnesic disorders, despite the fact that memory and executive deficits were evident in our ACoA group.

Intracranial dural arteriovenous fistula (DAVF) presenting progressive dementia and parkinsonism.

We studied three patients with dural arteriovenous fistula (DAVF). Major symptoms were progressive dementia and parkinsonism, both of which progressed in step-wise fashion. Two of the three patients showed diffuse cerebral white matter lesions on brain CT and MRI. Progressive dementia and parkinsonism in our patients could be caused by diffuse cerebral parenchymal disturbance: impaired cerebral circulation due to severe venous hypertension. DAVF is important for the differential diagnosis in patients with progressive dementia and parkinsonism.

Dural arteriovenous fistula: a cause of hypoperfusion-induced intellectual impairment.

A 76-year-old, right-handed man developed posttraumatic dural arteriovenous fistula (DAVF) involving the superior sagittal sinus. He developed slow but progressive intellectual deterioration and gait disturbance after a minimal head trauma. Cerebral angiography demonstrated a DAVF of the superior sagittal sinus with sinus thrombosis supplied by branches of the bilateral external carotid arteries, and a DAVF of the right sigmoid sinus supplied by the right occipital artery. Selective embolization was carried out. He showed marked improvement on neuropsychological testing, especially on test items which are supposed to tap functions of the right cerebral hemisphere which showed an improved cerebral blood flow. We concluded that the intellectual impairment of our patient was caused by cerebral hypoperfusion, especially of the right cerebral hemisphere.