scholarly journals Patients with resistant focal epilepsy: what affects the quality of life?

2019 ◽  
Vol 11 (3) ◽  
pp. 233-243
Author(s):  
K. V. Firsov ◽  
M. G. Amirhanyan ◽  
A. S. Kotov

The aim is to assess the impact of resistant focal epilepsy on the quality of patients' life.Materials and methods. Prospective, comparative, observational study conducted under conditions of real clinical practice. Inclusion criteria: age over 18 years; the presence of two or more epileptic seizures in history; a long history of treatment-resistant focal epileptic seizures; current AED therapy. Exclusion criteria: history of non-epileptic seizures of any etiology; inability to perform an MRI and/or EEG. The design included two patient visits, the second 3-12 months after the first ("primary" and "repeated" examinations). The examination included the medical history, analysis of seizure diary, clinical and neurological examination, routine EEG and/or EEG video monitoring, brain MRI, and laboratory tests. During the initial and repeated visits, the patients were asked to answer the QOLIE-31, NHS3, HADS questionnaires. The patients were also asked to give their own subjective assessment of their physical and psychological state, treatment results, side effects, social situation, and the quality of life. All patients had a follow-up history of at least one year.Results. In total, 120 patients with current or past treatment-resistant epileptic seizures were examined (53 men and 67 women aged 18 to 77 years). At the time of the re-examination (under continuing AED therapy), seizures stopped in 50.8% of them. The number of seizure types decreased in 65.9% of people. The effect of resistant focal epilepsy on the patient's quality of life was determined.Conclusion. The use of commonly accepted tests (QOLIE-31, HADS, etc.) in the "expertise" mode is incorrect, probably because these tests had been originally created for the "client" situation. A discrepancy was found between an objective improvement in the clinical picture as a result of successful treatment and a subjective "insignificant" improvement in the quality of life as per patients' assessments.

2020 ◽  
pp. 105566562098133
Author(s):  
Alyssa Fritz ◽  
Diana S. Jodeh ◽  
Fatima Qamar ◽  
James J. Cray ◽  
S. Alex Rottgers

Introduction: Oronasal fistulae following palatoplasty may affect patients’ quality of life by impacting their ability to eat, speak, and maintain oral hygiene. We aimed to quantify the impact of previous oronasal fistula repair on patients’ quality of life using patient-reported outcome psychometric tools. Methods: A cross-sectional study of 8- to 9-year-old patients with cleft palate and/or lip was completed. Patients who had a cleft team clinic between September 2018 and August 2019 were recruited. Participants were divided into 2 groups (no fistula, prior fistula repair). Differences in the individual CLEFT-Q and Child Oral Health Impact Profile-Short Form 19 (COHIP-SF 19) Oral Health scores between the 2 groups were evaluated using a multivariate analysis controlling for Veau classification and syndromic diagnosis. Results: Sixty patients with a history of cleft palate were included. Forty-two (70%) patients had an associated cleft lip. Thirty-two (53.3%) patients had no history of fistula and 28 (46.7%) patients had undergone a fistula repair. CLEFT-Q Dental, Jaw, and Speech Function were all higher in patients without a history of a fistula repair; however, none of these differences were statistically significant. The COHIP-SF 19 Oral Health score demonstrated a significantly lower score in the fistula group, indicating poorer oral health ( P = .05). Conclusions: One would expect that successful repair of a fistula would result in improved function and patient satisfaction, but the consistent trend toward lower CLEFT-Q scores and significantly increased COHIP-SF 19 Oral Health scores in our study group suggests that residual effects linger and that the morbidity of a fistula may not be completely treated with a secondary correction.


2019 ◽  
Vol 72 (6) ◽  
pp. 478-486 ◽  
Author(s):  
Mónica Rocha ◽  
J. Scott Yaruss ◽  
Joana R. Rato

<b><i>Background/Aims:</i></b> Previous research has provided information about how school-aged children perceive their own stuttering; however, less is known about how stuttering is perceived by their parents. The ways that parents view their children’s stuttering could influence how the children themselves react to it. This study proceeds to assess how parents’ perceptions of the impact of stuttering relate to the perceptions of children. <b><i>Method:</i></b> Participants were 50 children who stutter aged 7–12 years (mean = 9.10; SD = 1.7) and their parents, recruited from different cities in Portugal. The European Portuguese version of the Overall Assessment of the Speaker’s Experience of Stuttering was administered to the children, and an adapted version of the tool was administered to their parents. <b><i>Results:</i></b> Both parents and children showed generally similar overall impact ratings, typically falling in the mild and moderate ranges. Differences were observed in families with a history of stuttering: for those families, a comparison of parents’ and children’s scores revealed, in some domains, that parents perceived the impact of stuttering to be greater than the children did, especially related with children’s reactions to stuttering and their quality of life. <b><i>Conclusion:</i></b> Knowledge about how parents perceive the impact of stuttering on their children is important because families can play a key role in helping children cope with stuttering. These findings highlight the benefits of using an individualized treatment approach for each child that focuses on their perceptions, as well as on those of the parents, in order to address negative attitudes toward children’s stuttering.


Open Heart ◽  
2021 ◽  
Vol 8 (2) ◽  
pp. e001726
Author(s):  
Anthony P Carnicelli ◽  
Ruth Owen ◽  
Stuart J Pocock ◽  
David B Brieger ◽  
Satoshi Yasuda ◽  
...  

ObjectiveAtrial fibrillation (AF) and myocardial infarction (MI) are commonly comorbid and associated with adverse outcomes. Little is known about the impact of AF on quality of life and outcomes post-MI. We compared characteristics, quality of life and clinical outcomes in stable patients post-MI with/without AF.Methods/resultsThe prospective, international, observational TIGRIS (long Term rIsk, clinical manaGement and healthcare Resource utilization of stable coronary artery dISease) registry included 8406 patients aged ≥50 years with ≥1 atherothrombotic risk factor who were 1–3 years post-MI. Patient characteristics were summarised by history of AF. Quality of life was assessed at baseline using EQ-5D. Clinical outcomes over 2 years of follow-up were compared. History of AF was present in 702/8277 (8.5%) registry patients and incident AF was diagnosed in 244/7575 (3.2%) over 2 years. Those with AF were older and had more comorbidities than those without AF. After multivariable adjustment, patients with AF had lower self-reported quality-of-life scores (EQ-5D UK-weighted index, visual analogue scale, usual activities and pain/discomfort) than those without AF. CHA2DS2-VASc score ≥2 was present in 686/702 (97.7%) patients with AF, although only 348/702 (49.6%) were on oral anticoagulants at enrolment. Patients with AF had higher rates of all-cause hospitalisation (adjusted rate ratio 1.25 [1.06–1.46], p=0.008) over 2 years than those without AF, but similar rates of mortality.ConclusionsIn stable patients post-MI, those with AF were commonly undertreated with oral anticoagulants, had poorer quality of life and had increased risk of clinical outcomes than those without AF.Trial registration numberClinicalTrials: NCT01866904.


2017 ◽  
Vol 4 (1) ◽  
pp. 13
Author(s):  
Tatjana Ivanković Zrnić ◽  
Dragana Bojinović Rodić ◽  
Jelena Nikolić Pucar ◽  
Mirjana Vučurević Ozren

A chronic wound can greatly impair the quality of life of patients. Early we can consider chronic if there is no complete healing after six weeks of treatment. Over time, several different instruments have been developed to monitor the impact of a chronic wound on the quality of life of patients. The original required a lot of time to complete, remained incomplete, and there was a need to develop a standardized, short, multi-dimensional questionnaire. This led to the formation of a “Wound-QoL” questionnaire used in assessing the quality of life of patients with a chronic wound.In our institution, a pilot study was conducted on the impact of chronic wounds on the quality of life of patients, using a validated questionnaire. The study included 32 patients whose wounds were transplanted to the Institute. The questionnaires were completed at the beginning of the wound treatment at the institution.In physical terms, a chronic wound has a central impact on our respondents, but its psychological impact is most pronounced. On everyday activities, the influence of the wound is assessed in men as small, and an equal number of women consider it to have a small and big effect. Respondents believe that treating chronic wounds does not carry a large financial burden. It is necessary to assess the quality of life of patients with chronic wound before and after treatment and possible healing of the wound in order to see the impact of chronic wounds on the positive psychological state of the wound and the motivation to heal.


2019 ◽  
Vol 99 ◽  
pp. 106391 ◽  
Author(s):  
Francesco Deleo ◽  
Rui Quintas ◽  
Katherine Turner ◽  
Giuseppe Didato ◽  
Elena Zambrelli ◽  
...  

Author(s):  
Priyanka Agrawal ◽  
Mahboob Alam ◽  
Dhirendra Pratap ◽  
Krishna K. Singh ◽  
Lokesh Gupta ◽  
...  

Background: Laparoscopic cholecystectomy (LC) is the most preferable surgical procedure worldwide. LC is not completely risk-free and 2 to 15% of attempted LC procedures have to be converted to open cholecystectomy. The aim of the study was to assess the predictors of difficult LC procedures and for knowing the impact of difficult LC procedures on post-cholecystectomy syndrome and quality of life of patients.Methods: A prospective observational study was conducted on patients who underwent LC. Clinical, demographic, radiological and biochemical parameters along with detailed history of patients were documented. Laparoscopic cholecystectomy was then done on patients using standard technique. Level of difficulty in LC procedure was assessed and graded. Occurrence of post-cholecystectomy syndrome was investigated and quality of patient’s life was assessed using SF-36 inventory.Results: The difficulty rate in LC procedure was observed to be 17.4%. The clinical predictors of difficult LC procedures were old age and prior history of abdominal surgery. Contracted gall bladder, peripancreatic fluid and thick gallbladder wall were radiological predictors and presence of adhesions, longer duration of surgery and conversion to open procedures were intraoperative predictors of difficult LC procedures. Early PCS was affected by difficult LC procedures; though with passage of time it reduced. Post-operative quality of life was affected more by PCS incidence than the difficult LC procedure.Conclusions: The findings of the study would help in anticipating predictors of difficult LC procedures and in understanding the phenomenology and determinants of PCS along with its relationship with operative difficulty and quality of life of patients.


2020 ◽  
Vol 1 ◽  
pp. 97-102
Author(s):  
Olha Shevchuk-Kravchenko ◽  
Oksana Penderetska ◽  
Ivan Garazdiuk ◽  
Oleksandr Garazdiuk ◽  
Viktor Bachynskiy

The aim of the study was to identify the terror of death and anxiety level in patients with end-stage renal disease receiving renal replacement therapy using chronic hemodialysis (HD) and to evaluate the impact of patients' psychological status on medical staff, selection of basic methods of psychotherapeutic care for patients in this category. We involved 37 patients, aged 33-72 years (mean, 45.6 ± 3.8 years). The duration of chronic HD ranged from 8 months to 10 years, with an average of 4.6 years. All the patients had a stable nutritional status, HD regimen and drug therapy for at least 3 months. To diagnose the psychological state of patients we used: the scale of self-assessment of the level of situational and personal anxiety (Spielberger-Hanin’s Scale), personal questionnaire for changes at the onset of HD therapy, elements of a clinical interview, image apperception test (simplified version of Thematic apperception test., Bechterev’s Institute Personal Questionnaire for Diagnosis of Type of Illness (LOBI), Locus of control and personal changes after initiation of HD therapy. We found that the: adaptation of the patient to HD therapy is complicated due to the high degree of anxiety and maladaptive terror of death, which reduce the patient’s quality of life. The HD procedure increases the level of situational anxiety and requires psycho-correction. HD therapy requires activation of the patient's psychological protection mechanisms, since the dominant protective mechanisms of the psyche in this type of substitution treatment are displacement and negation. The inflexible and rigid use of the latter provokes maladaptive reactions when interacting with healthcare providers, a non-constructive approach to lifestyle choices, work-rest regime, and diet. Patients with a maladaptive mode of adjustment to HD therapy require psychotherapy assistance. There is a need to monitor the psychological status of not only patients, but also medical staff, which due to the specificity of the contingent increases the level of contingent own terror of death. Doctors of HD units require participation in mutual support groups.


2019 ◽  
Vol 76 (7) ◽  
pp. 716-722
Author(s):  
Sladjana Vasiljevic ◽  
Marina Petrovic ◽  
Aleksandra Cvetkovic ◽  
Vesna Paunovic ◽  
Darko Mikic ◽  
...  

Background/Aim. Chronic obstructive pulmonary disease (COPD) has a significant impact on quality of life of patients. We investigated which demographic and social characteristics can predict the global quality of life (QoL) of COPD patients. Methods. The patients (n = 288) were divided into three groups according to the stage of disease: Group I = stage 0 ? at risk; Group II = Stages I and II; Group III = stages III and IV. The patients fulfilled a questionnaire related to the demographic and social characteristics and the validated multidimensional questionnaire ? Serbian version of the St. George?s Respiratory Questionnaire (SGRQ). The Student?s t test, ?? test, ANOVA, univariate and multivariate logistic regression tests were used for statistical analyses. Results. In the group I, prevailed the men, employed persons, with a moderate financial status and no family history of COPD. In the group II dominated women, pensioners, with a moderate financial status, duration of illness up to five years, and no family history of COPD. In the group III prevailed women, unemployed persons, a moderate financial status, COPD duration up to 5 years and no family history of COPD. The predictors of the Symptoms score were grades of COPD and duration of the disease, and the predictors of Activity grades of COPD, sex, age and financial status. All variables were found to have a statistically significant relationship in the Impact score in the pre-analyses, were also significant in the univariate regression model. They were age, employement status, financial status and COPD duration. The same predictors that significantly contributed to the explanation of the Impact score, contributed to the explanation of the Total score on SGRQ. In the multivariate regression model, the predictors of the Activity score, Impacts score and Total score were the COPD grade and financial status; only the COPD grade contributed to the explanation of the Symptoms score. Conclusion. Financial status is the most important social factor, and the grade of COPD is the best disease-related predictor of QoL of COPD patients.


Stroke ◽  
2014 ◽  
Vol 45 (suppl_1) ◽  
Author(s):  
Shelly Ozark ◽  
Andrea D Boan ◽  
Tanya N Turan ◽  
Charles Ellis ◽  
David L Bachman ◽  
...  

Background: Stroke is a leading cause of adult disability and reduction in quality of life, but little is known about the social, demographic, clinical and functional elements that contribute to perceived quality of life after stroke. Objective: To determine the factors associated with patient perception of the effect that stroke has on quality of life. Methods: The STEP-South Carolina Project surveyed 162 stroke survivors one year after their event, assessing clinical and functional outcomes and patient perceptions of the magnitude of the impact of stroke on their quality of life (“no effect”, “some effect”, or “great effect”). Multivariate analyses were performed to determine the relationship between the patients’ perceived effect of stroke on quality of life and demographic features, functional abilities, stroke severity, and medical comorbidities. Results: Multivariate analyses showed no difference in age, race, gender or insurance status. As shown in the table, multivariate analyses (adjusted for NIHSS, age, race, gender, and insurance status) demonstrated that a history of prior stroke, use of therapy services, lower functional independence in ADLs, not driving, and history of diabetes were associated with a patient’s perception of a “greater effect” on quality of life. Conclusion: The perception of the impact of stroke on quality of life is influenced by both functional outcomes and clinical factors post-stroke. Further study is needed to find ways of mitigating these factors to improve patient perceived quality of life.


Author(s):  
Ángela Ros-Sanjuán ◽  
Sara Iglesias-Moroño ◽  
Bienvenido Ros-López ◽  
Francisca Rius-Díaz ◽  
Andrea Delgado-Babiano ◽  
...  

OBJECTIVEThe objectives of this study were to determine the quality of life of a pediatric cohort with hydrocephalus treated by endoscopic third ventriculostomy (ETV), using the Hydrocephalus Outcome Questionnaire–Spanish version (HOQ-Sv), and study the clinical and radiological factors associated with a better or worse functional status.METHODSThis cross-sectional study was undertaken between September 2018 and December 2019. It comprised a series of 40 patients ranging from 5 to 18 years old with hydrocephalus treated by ETV. ETV was considered to be successful if there was no need for surgery for the treatment of hydrocephalus after a minimum follow-up of 6 months. The clinical variables included gender, age at hydrocephalus diagnosis, age at the time of ETV, age at completion of the questionnaire, etiology and type of hydrocephalus (communicating or not), prior shunt, repeat ETV, number of neurosurgical procedures, number of epileptic seizures, presenting signs, and follow-up duration until last office revision. The radiological variables were the Evans Index and the pre- and posttreatment frontooccipital horn ratio. An analysis was conducted of the association between all these variables and the various dimensions on the HOQ-Sv, completed by the parents of the patients via telephone or in the outpatient offices.RESULTSThe mean age of the children at ETV was 7 years (range 7–194 months), and on completing the questionnaire was 12 years (range 60–216 months). The mean HOQ scores were as follows: overall 0.82, physical domain 0.86, social-emotional (SE) domain 0.84, cognitive domain 0.75, and utility score 0.90. A history of epileptic crises was a predictive factor for a worse score overall and in the SE and cognitive domains. Factors related to a worse score in the physical domain were a previous shunt, the number of procedures, and the etiology and type of hydrocephalus. The mean follow-up duration from ETV to the last office visit was 5 years (64.5 months). No association was found between the degree of ventricular reduction and the quality of life.CONCLUSIONSThe factors related to a worse score in the different dimensions of the HOQ were a history of epileptic seizures, the number of procedures, communicating hydrocephalus, and having had a previous valve. No association was found between the reduction in ventricular size and the quality of life as measured on the HOQ-Sv.


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