scholarly journals Altered quality of life in Rendu-Osler-Weber disease related to recurrent epistaxis

2011 ◽  
Vol 49 (2) ◽  
pp. 155-162
Author(s):  
I. Ingrand ◽  
P. Ingrand ◽  
B. Gilbert-Dussardier ◽  
G. Defossez ◽  
V. Jouhet ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prospective Clinical Study ◽  
Life Questionnaire ◽  
Complementary Information ◽  
Generic Questionnaire ◽  
Sf 36 ◽  
Recurrent Epistaxis ◽  
Development And Validation ◽  
The Impact

OBJECTIVES: Development and validation of an epistaxis-specific quality-of-life questionnaire (EQQoL) to evaluate the impact on quality of life of epistaxis, during hereditary hemorrhagic telangiectasia (HHT). STUDY DESIGN: Prospective clinical study using QoL instruments administered twice in HHT patients. PATIENTS AND METHODS: In total, 109 patients who had epistaxis and a clinical diagnosis of HHT according to Curacao criteria were included. Invoice of the questionnaire in 2004 and 2006 included SF-36, Jenkins` sleep scale and the new epistaxis-specific13-item EQQoL. RESULTS: EQQoL uptake rate was 98%, mean score 58/100 +- 27, and Cronbach alpha 0.96. EQQoL was sensitive to change with a strong correlation with the course of epistaxis. Factorial analysis showed that EQQoL was clearly distinct from SF-36 and Jenkins sleep scales. In stepwise multivariate ordinal logistic regression, frequency and duration of epistaxis were both associated with lower EQQoL. Conversely, visceral involvement and comorbidity had independent impact on SF-36 scores, but not on EQQoL. CONCLUSIONS: This new epistaxis-specific EQQoL questionnaire provides complementary information on the impact of HHT on patients quality of life relative to the SF-36 generic questionnaire. After international validation, the EQQoL might prove a useful tool for treatment evaluation.

scholarly journals Development and Validation of Nasal Polyposis Quality of Life Questionnaire (NPQ)

2020 ◽  
Author(s):  
Ilaria Baiardini ◽  
Giovanni Paoletti ◽  
Alessia Mariani ◽  
Luca Malvezzi ◽  
Francesca Pirola ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Convergent Validity ◽  
Nasal Polyposis ◽  
Minimal Important Difference ◽  
Dimensional Structure ◽  
Life Questionnaire ◽  
Quality Of Life Questionnaire ◽  
Development And Validation ◽  
The Impact

Abstract BACKGROUND: To date, no disease-specific tool is available to assess the impact of Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) on Health Related Quality of Life (HRQoL). Therefore, the purpose of this study was to develop and validate a questionnaire specifically designed to this aim: the Nasal Polyposis Quality of Life questionnaire –NPQ.METHODS: According to the current guidelines, the development and validation of the NPQ occurred in two separate steps involving different groups of patients.RESULTS: In the development process of NPQ an initial list of items of 40 items was given to 60 patients with CRSwNP; the 27 most significant items were selected and converted into questions. The validation procedure involved 107 patients (mean age 52.9±12.4). NPQ revealed a five-dimensional structure and high levels of internal consistency (Cronbach's alpha 0.95). Convergent validity (Spearman’ coefficient r=0.75; p< 0.01), discriminant validity (sensitivity to VAS score), reliability in a sample of patients with a stable health status (Interclass Coefficient 0.882) were satisfactory. Responsiveness to clinical changes was accomplished. The minimal important difference was 7. CONCLUSIONS: NPQ is the first questionnaire for the assessment of HRQoL in CRSwNP. Our results provide that the new tool is valid, reliable, and sensitive to individual changes.

Patients' perspectives on the burden of recurrent genital herpes

2001 ◽  
Vol 12 (10) ◽  
pp. 640-645 ◽  
Author(s):  
R Patel ◽  
F Boselli ◽  
I Cairo ◽  
G Barnett ◽  
M Price ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Genital Herpes ◽  
Short Form ◽  
Normal Population ◽  
Life Questionnaire ◽  
Recurrent Genital Herpes ◽  
Workplace Productivity ◽  
Sf 36 ◽  
The Impact

The purpose of this study was to quantify the impact of recurrent genital herpes (RGH) on health-related quality of life, healthcare resource and workplace productivity. This was a cross-sectional survey conducted in 5 countries (Australia, Denmark, Italy, The Netherlands and UK). Patients with a confirmed history of RGH completed the MOS 36-Item Short Form Health Survey (SF-36) and the Recurrent Genital Herpes Quality of Life questionnaire (RGHQoL). Questionnaires addressing frequency of access to healthcare services and workplace productivity were also completed and patients' medical history was obtained. Scores for 6 of the 8 domains of the SF-36 were significantly lower ( P<0.001) i.e. worse, compared with scores for the normal population. The RGHQoL score was significantly lower in patients experiencing more frequent or more severe recurrences. Forty-five per cent of patients estimated that their work effectiveness was reduced by between 25% and 50% due to genital herpes symptoms.

Assessment of Quality of Life in MA.17: A Randomized, Placebo-Controlled Trial of Letrozole After 5 Years of Tamoxifen in Postmenopausal Women

2005 ◽  
Vol 23 (28) ◽  
pp. 6931-6940 ◽  
Author(s):  
Timothy J. Whelan ◽  
Paul E. Goss ◽  
James N. Ingle ◽  
Joseph L. Pater ◽  
Dongsheng Tu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Bodily Pain ◽  
Response Analysis ◽  
Life Questionnaire ◽  
Change Scores ◽  
Estrogen Synthesis ◽  
Sf 36 ◽  
Significant Difference ◽  
The Impact

Purpose To evaluate the impact of letrozole compared with placebo after adjuvant tamoxifen on quality of life (QOL) in the MA.17 trial. Methods Patients completed the Short Form 36-item Health Survey (SF-36) and the Menopause Specific Quality of Life Questionnaire (MENQOL) at baseline, 6 months, and annually. Mean change scores from baseline were compared between groups for summary measures and domains. A response analysis compared the proportion of patients who demonstrated an important change in QOL. Results Of 5,187 randomly assigned women in the trial, 3,612 (69.9%) participated in the QOL substudy: 1,799 were allocated to placebo and 1,813 were allocated to letrozole. No differences were seen between groups in mean change scores from baseline for the SF-36 physical and mental component summary scores at 6, 12, 24, and 36 months. Small (< 0.2 standard deviations) but statistically significant differences in mean change scores from baseline were seen for the SF-36 domains of physical functioning (12 months), bodily pain (6 months) and vitality (6 and 12 months), and the MENQOL vasomotor (6, 12, and 24 months) and sexual domains (12 and 24 months). On the response analysis, a significant difference was seen between groups for the bodily pain domain (percentage of patients reporting a worsening of QOL, 47% placebo v 51% letrozole; P = .009) and the vasomotor domain (22% placebo v 29% letrozole; P = .001). Conclusion Letrozole did not have an adverse impact on overall QOL. Small effects were seen in some domains consistent with a minority of patients experiencing changes in QOL compatible with a reduction in estrogen synthesis.

NORDIC WALKING IN AN INTEGRATED APPROACH TO IMPROVING THE QUALITY OF LIFE OF THE ELDERLY

2020 ◽  
pp. 590-594
Author(s):  
О. Б. Крысюк ◽  
В. В. Дейнеко ◽  
Р. К. Кантемирова ◽  
Ю. А. Сухонос ◽  
В. А. Арутюнов
Keyword(s):  
Quality Of Life ◽  
Blood Pressure ◽  
Elderly People ◽  
Lifestyle Modification ◽  
Integrated Approach ◽  
Life Questionnaire ◽  
Nordic Walking ◽  
Sf 36 ◽  
The Impact

В статье проанализированы результаты влияния комплексного решения модификации образа жизни, включавшего занятия скандинавской ходьбой, рациональное питание и фармакотерапию, на качество жизни людей пожилого и старческого возраста (средний возраст 72,5±3,6 года). Выявлено значимое повышение показателя шкалы боли опросника MOS SF-36 через полгода ( р =0,001), определяемое и к концу года ( р =0,0001). Выявлена тенденция к улучшению качества жизни по Миннесотскому опроснику через полгода ( р =0,0617). Значимое увеличение показателя качества жизни по Миннесотскому опроснику установлено после одного года применения указанного подхода ( р =0,0001). Обсуждена взаимосвязь повышения показателей качества жизни и достоверного уменьшения параметров САД ( р =0,0016) и ДАД ( р =0,0032) у людей пожилого и старческого возраста после одногодичной практики оригинального комплекса мер по модификации образа жизни. The article analyzes the results of the impact of an integrated approach to lifestyle modifi cation, including Nordic walking, rational nutrition and pharmacotherapy, on the quality of life of elderly people (average age 72,5±3,6 years). A significant improvement in the pain scale indicator of the MOS SF-36 was revealed after six months ( p =0,001), which was also determined by the end of the year ( p =0,0001). A tendency to improve the quality of life was revealed in the Minnesota Questionnaire after six months ( p =0,0617). A significant improvement in the Minnesota Quality of Life Questionnaire was found after a year of applying this approach ( p =0,0001). The relationship of improving quality of life indicators and a signifi cant decrease in systolic blood pressure ( p =0,0016) and diastolic blood pressure ( p =0,0032) in elderly people after a one-year practice of an original approach to lifestyle modification is discussed.

scholarly journals Yoga Versus Physical Therapy In Multiple Sclerosis: Randomized Controlled Trial

2021 ◽  
Author(s):  
Elena Lysogorskaia ◽  
Timur Ivanov ◽  
Elena Ulmasbaeva ◽  
Aynagul Mendalieva ◽  
Maxim Youshko ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Therapy ◽  
Waiting List ◽  
Life Questionnaire ◽  
Walking Test ◽  
Quality Of Life Questionnaire ◽  
Sf 36 ◽  
Significant Difference ◽  
The Impact

Abstract Background. Yoga originated in the territory of modern India more than 3000 years ago and uses techniques for working with the musculoskeletal system, cardiorespiratory system and attention. Currently, the effectiveness and safety of yoga in patients with various neurological disorders, including MS, is of interest to many scientists and clinicians. The main aim of this study is to examine the effect of yoga on symptoms and quality of life in patients with MS versus physical therapy (exercise therapy) and no exercise.Methods. The patients were randomly assigned to 3 groups (yoga, PT, or waiting list), patients from the waiting list had an opportunity to enter the yoga program after the end of the trial period. After 12 weeks of regular exercises (or absence of them), the effect of yoga and PT on the functional status and quality of life of patients were evaluated. The MS treatment was a part of routine practice, as prescribed by the treating neurologist. The data was collected during the patients’ two visits to the study center - before the start of the study and at the end of the 12-week period. The in-person examination included a doctor's assessment of the EDSS, the SF-36 quality of life questionnaire, the fatigue scale, the Berg balance scale, the 6-minute walking test.Results. A total of 36 patients finished the clinical study: 30 women and 6 men. There was no statistically significant difference between the groups in terms of improvement in MS symptoms as measured by the balance, walking test and fatigue scales. However, in the analysis of the 8 criteria of SF-36 quality-of-life questionnaire the covariation analysis statistically significant differences were found in favor of the yoga group in terms of physical functioning (PF) (p=0.003), life activity (VT) (p<0.001), mental health (MH) (p=013), social functioning (SF) (p=0.028). Conclusions. Thus, regular yoga classes under the guidance of qualified staff are a promising method of non-drug rehabilitation of patients with MS with motor disorders. More research is needed to examine the impact of yoga on clinical patient improvement and quality of life indicators.Trial registration. ISRCTN15486200 https://doi.org/10.1186/ISRCTN15486200

Outcome after complex neurosurgery: the caregiver's burden is forgotten

1999 ◽  
Vol 7 (1) ◽  
pp. E1 ◽  
Author(s):  
Dorothy A. Lang ◽  
Glenn Neil-Dwyer ◽  
John Garfield
Keyword(s):  
Quality Of Life ◽  
Hypoglossal Nerve ◽  
Major Change ◽  
Percutaneous Gastrostomy ◽  
Petroclival Meningioma ◽  
Sf 36 ◽  
Skull Base Approach ◽  
Permanent Neurological Deficit ◽  
The Impact

Object The goals of this study were twofold: 1) to determine outcome, including quality of life, in patients who have undergone surgery for petroclival meningioma in which a standard skull base approach was used; and 2) to assess the impact of the patients' surgical treatment on their caregivers. Methods Seventeen patients (13 women and four men ranging in age from 29 to 63 years) who underwent a transpetrosal approach for a petroclival meningioma during a 5-year period were prospectively included in this study. Pre- and postoperative data including adverse events were noted. The patients were assessed at 3, 6, and 12 months postoperatively, and annually thereafter, and they completed a postoperative SF-36 questionnaire. In addition, each patient's caregiver was interviewed to determine the effect of the patient's illness on the caregiver's life and responsibilities. Twenty-two operations were performed. A new permanent neurological deficit developed in five patients and in eight a temporary deficit or exacerbation of existing deficits occurred. Two patients underwent surgery to create a facial-hypoglossal nerve communication; five required a temporary percutaneous gastrostomy and/or tracheostomy; three required a shunt; and one underwent successful squint surgery. At 1 year postoperatively 13 patients had made a good or moderate recovery, three were severely disabled, and one had died--outcomes in keeping with other studies. By contrast, responses to the SF-36 questionnaire showed that, in all eight of its categories, between 43% and 75% of surviving patients were functioning below accepted norms. Fifty-six percent of caregivers experienced a major change in lifestyle and 38% experienced a major change with respect to their work. Conclusions After transpetrosal excision of a petroclival meningioma, the quality of life for the patient is worse than that indicated in surgeons' reported results. The impact on the patient's caregiver is profound--a burden perhaps not fully appreciated by the surgeon.

Translation and Validation of the Thai Version of the Wisconsin Quality of Life Questionnaire (TH WISQoL) for Kidney Stone Patients

2020 ◽  
Vol 103 (11) ◽  
pp. 1194-1199
Keyword(s):  
Quality Of Life ◽  
Internal Consistency ◽  
Kidney Stone ◽  
Convergent Validity ◽  
Large Scale ◽  
Short Form ◽  
Outcome Measurement ◽  
Life Questionnaire ◽  
Sf 36

Objective: To develop and validate a Thai version of the Wisconsin Quality of Life (TH WISQoL) Questionnaire. Materials and Methods: The authors developed the TH WISQoL Questionnaire based on a standard multi-step process. Subsequently, the authors recruited patients with kidney stone and requested them to complete the TH WISQoL and a validated Thai version of the 36-Item Short Form Survey (TH SF-36). The authors calculated the internal consistency and interdomain correlation of TH WISQoL and compared the convergent validity between the two instruments. Results: Thirty kidney stone patients completed the TH WISQoL and the TH SF-36. The TH WISQoL showed acceptable internal consistency for all domains (Cronbach’s alpha 0.768 to 0.909). Interdomain correlation was high for most domains (r=0.698 to 0.779), except for the correlation between Vitality and Disease domains, which showed a moderate correlation (r=0.575). For convergent validity, TH WISQoL demonstrated a good overall correlation to TH SF-36, (r=0.796, p<0.05). Conclusion: The TH WISQoL is valid and reliable for evaluating the quality of life of Thai patients with kidney stone. A further large-scale multi-center study is warranted to confirm its applicability in Thailand. Keywords: Quality of life, Kidney stone, Validation, Outcome measurement

The effect of surgery in tenosynovial giant cell tumours as measured by patient-reported outcomes on quality of life and joint function

2019 ◽  
Vol 101-B (3) ◽  
pp. 272-280 ◽  
Author(s):  
F. G. M. Verspoor ◽  
M. J. L. Mastboom ◽  
G. Hannink ◽  
W. T. A. van der Graaf ◽  
M. A. J. van de Sande ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Giant Cell ◽  
Diffuse Type ◽  
Joint Function ◽  
Population Means ◽  
Sf 36 ◽  
Patient Reported ◽  
The Impact

Aims The aim of this study was to evaluate health-related quality of life (HRQoL) and joint function in tenosynovial giant cell tumour (TGCT) patients before and after surgical treatment. Patients and Methods This prospective cohort study run in two Dutch referral centres assessed patient-reported outcome measures (PROMs; 36-Item Short-Form Health Survey (SF-36), visual analogue scale (VAS) for pain, and Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC)) in 359 consecutive patients with localized- and diffuse-type TGCT of large joints. Patients with recurrent disease (n = 121) and a wait-and-see policy (n = 32) were excluded. Collected data were analyzed at specified time intervals preoperatively (baseline) and/or postoperatively up to five years. Results A total of 206 TGCT patients, 108 localized- and 98 diffuse-type, were analyzed. Median age at diagnosis of localized- and diffuse-type was 41 years (interquartile range (IQR) 29 to 49) and 37 years (IQR 27 to 47), respectively. SF-36 analyses showed statistically significant and clinically relevant deteriorated preoperative and immediate postoperative scores compared with general Dutch population means, depending on subscale and TGCT subtype. After three to six months of follow-up, these scores improved to general population means and continued to be fairly stable over the following years. VAS scores, for both subtypes, showed no statistically significant or clinically relevant differences pre- or postoperatively. In diffuse-type patients, the improvement in median WOMAC score was statistically significant and clinically relevant preoperatively versus six to 24 months postoperatively, and remained up to five years’ follow-up. Conclusion Patients with TGCT report a better HRQoL and joint function after surgery. Pain scores, which vary hugely between patients and in patients over time, did not improve. A disease-specific PROM would help to decipher the impact of TGCT on patients’ daily life and functioning in more detail. Cite this article: Bone Joint J 2019;101-B:272–280.

scholarly journals The impact of symptoms on daily life as perceived by patients with Charcot-Marie-Tooth type 1A disease

2021 ◽  
Author(s):  
Stefano Tozza ◽  
Dario Bruzzese ◽  
Daniele Severi ◽  
Emanuele Spina ◽  
Rosa Iodice ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Daily Life ◽  
Short Form ◽  
Lower Limbs ◽  
Charcot Marie Tooth ◽  
Rank Analysis ◽  
Sf 36 ◽  
Tooth Type ◽  
The Impact

Abstract Introduction In Charcot-Marie-Tooth type 1A (CMT1A) patients, daily life is mainly influenced by mobility and ambulation dysfunctions. The aim of our work was to evaluate the perception of disturbances that mostly impact on daily life in CMT1A patients and its difference on the basis of age, gender, disability, and quality of life. Methods Forty-one CMT1A patients underwent neurological assessment focused on establishing clinical disability through the Charcot-Marie-Tooth Neuropathy Score (CMTNS) and quality of life through the Short Form-36 (SF-36) questionnaire. We identified from CMT disturbances 5 categories [weakness in lower limbs (WLL), weakness in upper limbs (WUL), skeletal deformities (SD), sensory symptoms (SS), balance (B)] and patients classified the categories from the highest to the lowest impact on daily life (1: highest; 5: lowest). Ranking of the 5 categories, in the overall sample and in the different subgroups (dividing by gender, median of age and disease duration, CMTNS, domains of SF-36), was obtained and differences among subgroups were assessed using a bootstrap approach. Results Rank analysis showed that WLL was the most important disturbance on daily life whereas WUL had the lowest impact. In the older CMT1A group, the most important disturbance on daily life was B that was also the most relevant disturbance in patients with a greater disability. SD influenced daily life in younger patients. SS had less impact on daily life, with the exception of patients with a milder disability. Discussion Our findings demonstrated that the perception of disturbances that mostly impact on CMT1A patients’ daily life changes over the lifetime and with degree of disability.

scholarly journals Impact of malnutrition on health-related quality of life in persons receiving dialysis: a prospective study

2021 ◽  
pp. 1-24
Author(s):  
Daniela Viramontes-Hörner ◽  
Zoe Pittman ◽  
Nicholas M Selby ◽  
Maarten W Taal
Keyword(s):  
Quality Of Life ◽  
Prospective Study ◽  
Health Related Quality ◽  
Poor Hrqol ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Over Time

Abstract Health-related quality of life (HRQoL) is severely impaired in persons receiving dialysis. Malnutrition has been associated with some measures of poor HRQoL in cross-sectional analyses in dialysis populations, but no studies have assessed the impact of malnutrition and dietary intake on change in multiple measures of HRQoL over time. We investigated the most important determinants of poor HRQoL and the predictors of change in HRQoL over time using several measures of HRQoL. We enrolled 119 haemodialysis and 31 peritoneal dialysis patients in this prospective study. Nutritional assessments (Subjective Global Assessment [SGA], anthropometry and 24-hour dietary recalls) and HRQoL questionnaires (Short Form-36 [SF-36] mental [MCS] and physical component scores [PCS] and European QoL-5 Dimensions [EQ5D] health state [HSS] and visual analogue scores [VAS]) were performed at baseline, 6 and 12 months. Mean age was 64(14) years. Malnutrition was present in 37% of the population. At baseline, malnutrition assessed by SGA was the only factor independently (and negatively) associated with all four measures of HRQoL. No single factor was independently associated with decrease in all measures of HRQoL over 1 year. However, prevalence/development of malnutrition over one year was an independent predictor of 1-year decrease in EQ5D HSS and 1-year decrease in fat intake independently predicted the 1-year decline in SF-36 MCS and PCS, and EQ5D VAS. These findings strengthen the importance of monitoring for malnutrition and providing nutritional advice to all persons on dialysis. Future studies are needed to evaluate the impact of nutritional interventions on HRQoL and other long-term outcomes.

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