scholarly journals A Cross-Sectional Study of Gender Differences in Quality of Life Domains in Patients With Neurofibromatosis Type 1

2021 ◽  
Author(s):  
Geohana Hamoy-Jimenez ◽  
Hadiya Elahmar ◽  
Meg Mendoza ◽  
Raymond Kim ◽  
Vera Bril ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neurofibromatosis Type 1 ◽  
Physical Appearance ◽  
Neurofibromatosis Type ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Appearance Anxiety ◽  
Sf 36

Abstract Background. There is limited data regarding gender differences in quality of life between women and men with Neurofibromatosis type 1. We aimed to study differences in quality of life domains between women and men with Neurofibromatosis type 1 living in Canada.Methods: This is a cross sectional study of adults with Neurofibromatosis type 1 attending a tertiary NF centre at Toronto General Hospital between January 2016 to December 2017. Demographic and clinical data were collected. We compared scores of generic measures (SF-36, EQ-5D-5L, pain interference) and a disease-specific measure (PedsQL-NF1 module) between women and men. We also assessed the relationship between disease visibility scored by an examiner (Ablon’s visibility index) and self-reported perceived physical appearance, stratified by gender.Results. One hundred and sixty-two participants were enrolled, 92 females and 70 males. Ablon’s index score 1 was in 43% and score 2 in 44%, while only 13% of patients had a score 3. Women had worse scores on the total PedsQL-NF1 scales, and also in the perceived physical appearance, anxiety and emotional health domains. In women, there was a significant association between Ablon’s index and perceived physical appearance, with lower scores with increments in Ablon’s class (ANOVA p<0.001). In men, there was no difference in self-reported physical appearance by Ablon’s index. There were no differences between men and women in the SF-36 or EQ-5D-5L scores.Conclusion. Women with NF1 reported worse NF1-related quality of life than men, with worse perceived physical appearance, anxiety, and mental health. Perceived physical appearance did not always correlate to disease visibility; therefore, healthcare providers should inquire about body image, physical appearance concerns, and mental health, especially among women with NF1.

scholarly journals Quality of life in patients with neurofibromatosis type 1 and 2 in Canada

2020 ◽  
Vol 2 (Supplement_1) ◽  
pp. i141-i149
Author(s):  
Geohana Hamoy-Jimenez ◽  
Raymond Kim ◽  
Suganth Suppiah ◽  
Gelareh Zadeh ◽  
Vera Bril ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neurofibromatosis Type 1 ◽  
Physical Appearance ◽  
Well Being ◽  
Neurofibromatosis Type ◽  
Pain Interference ◽  
Sf 36 ◽  
Tertiary Center

Abstract Background There is scarce data on the quality of life of people with neurofibromatosis type 1 (NF1) and type 2 (NF2) in Canada. Methods A cross-sectional study of adults with NF1 and NF2 attending a tertiary center. Patients completed generic measures (SF-36, EQ-5D-5L, and PROMIS pain interference) and disease-specific questionnaires (PedsQL NF1 module and the NFTI-QOL for NF2). We compared generic scores between NF1 and NF2 individuals and used regression models to assess factors associated with quality of life. Results Hundred and eighty-four participants were enrolled. Mean age was 33 years in NF1 and 40 years in NF2. NF1 and NF2 individuals had lower employment rates and lower scores in all domains of the SF-36 compared to the general Canadian population (P &lt; .005). Using the EQ-5D-5L, there was a high proportion of pain (64% in NF1 and 74% in NF2) and anxiety/depression (60% in NF1 and 68% in NF2). Pain interference correlated with poor quality of life in NF1 and NF2; perceived physical appearance was the main predictor of mental well-being in NF1. Conclusions Individuals with NF1 and NF2 have low quality of life, and this correlates with pain, anxiety, and depression, which are prevalent in NF1 and NF2. Perceived physical appearance predicts quality of life in NF1. A multidisciplinary approach is necessary for patients with NF1 and NF2, including mental health and pain management.

scholarly journals The mediating effects of quality of life, depression, and generalized anxiety on perceived work barriers for people diagnosed with Neurofibromatosis Type 1

2021 ◽  
Author(s):  
Frank D Buono ◽  
Matthew E Sprong ◽  
Erina Paul ◽  
Staci Martin ◽  
Kaitlyn Larkin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neurofibromatosis Type 1 ◽  
Genetic Disorder ◽  
Neurofibromatosis Type ◽  
Physical Symptoms ◽  
Anxiety And Depression ◽  
Cross Sectional ◽  
The Impact

Abstract Background Neurofibromatosis Type 1 (NF1) is a genetic disorder that presents with physical symptoms that can negatively impact numerous areas of one’s life, including occupational and psychological functioning, with decreased quality of life compared to a normative population. The purpose of the current study was to explore the impact of psychological factors (anxiety and depression), along with quality of life and hope on employment barriers between those with NF1 and matched controls. Methods A total of 212 individuals were stratified into two groups (NF1 and matched controls) using a cross-sectional design that collected a one-time response. Results A mediation analysis in which total barriers to employment success on the differences between groups with quality of life, anxiety and depression as the mediators, and levels of employment hope as the co-variates were examined. The results did confirm a direct (.001) and indirect (< .001) relationship between work barriers with NF1 to matched controls, and with quality of life, anxiety, and depression. Conclusions The current article demonstrates that quality of life can directly be affected by perceived barriers of employment within the NF1 population, while extending existing research by providing insight on the impact of quality of life on employment. Poorer mental health observed amongst people with a genetic disease can impact barriers of employment and quality of life.

scholarly journals Impact of kinesiophobia on physical function and quality of life in functional ankle instability individuals: an observational study

2021 ◽  
Vol 26 (1) ◽  
Author(s):  
Prachita P. Walankar ◽  
Vrushali P. Panhale ◽  
Kanchi M. Vyas
Keyword(s):  
Quality Of Life ◽  
Physical Function ◽  
Negative Correlation ◽  
Ankle Instability ◽  
Cross Sectional Study ◽  
Functional Ankle Instability ◽  
Cross Sectional ◽  
Sf 36 ◽  
Related Quality

Abstract Background Functional ankle instability is a common musculoskeletal condition affecting the community. It is characterized by repetitive bouts of giving away, recurrent sprains, and sensation of instability leading to functional deficits in an individual. The present study aimed to assess the influence of kinesiophobia on physical function and quality of life in participants with functional ankle instability. A cross-sectional study was conducted in 30 participants with functional ankle instability. Kinesiophobia was assessed using the 17-item Tampa Scale of Kinesiophobia, physical function using the Foot and Ankle Ability Measure (FAAM) and the FAAM-Sport version (FAAM-S), and quality of life using SF-36. Results The TSK score showed a moderate negative correlation with FAAM-S (r = −0.5, p = 0.005) and a weak negative correlation with SF-36 physical component summary (r = −0.42, p = 0.02). However, TSK showed no significant correlation with FAAM-ADL and SF-36 mental component summary. Conclusion Increased fear of movement, reduced physical function, and health-related quality of life were observed in functional ankle instability individuals. Hence, evaluation of these parameters is imperative in these individuals.

Pain, psychoaffective symptoms, and quality of life in human T cell lymphotropic virus type 1 (HTLV-1): a cross-sectional study

2021 ◽  
Author(s):  
Dislene Nascimento dos Santos ◽  
Katia Nunes Sá ◽  
Fernanda C. Queirós ◽  
Alaí Barbosa Paixão ◽  
Kionna Oliveira Bernardes Santos ◽  
...  
Keyword(s):  
Quality Of Life ◽  
T Cell ◽  
Virus Type ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Human T Cell

scholarly journals Predictors of quality of life among patients on dialysis in southern Brazil

2008 ◽  
Vol 126 (5) ◽  
pp. 252-256 ◽  
Author(s):  
Maristela Bohlke ◽  
Diego Leite Nunes ◽  
Stela Scaglioni Marini ◽  
Cleison Kitamura ◽  
Marcia Andrade ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Peritoneal Dialysis ◽  
Short Form ◽  
Outcome Measurement ◽  
Cross Sectional Study ◽  
Southern Brazil ◽  
Cross Sectional ◽  
Sf 36 ◽  
Dialysis Facilities

CONTEXT AND OBJECTIVE: Quality of life (QoL) is considered important as an outcome measurement, especially for long-term diseases such as chronic renal failure. The present study searched for predictors of QoL in a sample of patients undergoing dialysis in southern Brazil. DESIGN AND SETTING: This was a cross-sectional study developed in three southern Brazilian dialysis facilities. METHODS: Health-related QoL of patients on hemodialysis or peritoneal dialysis was measured using the generic Short Form-36 (SF-36) health survey questionnaire. The results were correlated with sociodemographic, clinical and laboratory variables. The analysis was adjusted through multiple linear regression. RESULTS: A total of 140 patients were assessed: 94 on hemodialysis and 46 on peritoneal dialysis. The mean age was 54.2 ± 15.4 years, 48% were men and 76% were white. The predictors of higher (better) physical component summary in SF-36 were: younger age (β-0.16; 95% confidence interval, CI: -0.27 to -0.05), shorter time on dialysis (β-0.06; 95% CI: -0.09 to -0.02) and lower Khan comorbidity-age index (β 5.16; 95% CI: 1.7-8.6). The predictors of higher mental component summary were: being employed (β 8.4; 95% CI: 1.7-15.1), being married or having a marriage-like relationship (β 4.56; 95% CI: 0.9-8.2), being on peritoneal dialysis (β 4.9; 95% CI: 0.9-8.8) and not having high blood pressure (β 3.9; 95% CI: 0.3-7.6). CONCLUSIONS: Age, comorbidity and length of time on dialysis were the main predictors of physical QoL, whereas socioeconomic issues especially determined mental QoL.

scholarly journals Quality of Life in Women with Deep Endometriosis: A Cross-Sectional Study

2020 ◽  
Vol 42 (02) ◽  
pp. 090-095 ◽  
Author(s):  
Daniela Angerame Yela ◽  
Iuri de Paula Quagliato ◽  
Cristina Laguna Benetti-Pinto
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Cross Sectional Study ◽  
Deep Infiltrating Endometriosis ◽  
Sectional Study ◽  
Deep Endometriosis ◽  
Cross Sectional ◽  
Sf 36 ◽  
Emotional Aspects

Abstract Objective To describe clinical and sociodemographic characteristics of women with deep infiltrating endometriosis (DIE) and assess their quality of life (QOL) during 6 months of medical treatment. Methods A descriptive cross-sectional study of 60 women diagnosed with DIE either by surgery or image methods (ultrasound or magnetic resonance), who received clinical treatment for at least 6 months in the Universidade de Campinas, Campinas, state of São Paulo, Brazil. Both the SF-36 and the EHP-30 questionnaires were used to assess the quality of life. Results The mean age of the patients was 37.7 ± 6.0 years old, with 50% presenting dysmenorrhea; 57% dyspareunia; and 50% chronic pelvic pain. The SF-36 and the EHP-30 revealed impaired quality of life. In the SF-36, the worst domains were limitation due to emotional aspects (40.2 ± 43.1) and self-esteem and disposition (46.1 ± 24.8), whereas in the EHP-30 they were social well-being (50.3 ± 30.6); infertility (48.0 ± 36.3); and sexual intercourse (54.0 ± 32.1). Conclusion Although clinically treated, women with deep endometriosis present impairment in different domains of quality of life regardless of the questionnaire used for evaluation.

Burden of Care and Quality of Life in Home Caregivers of Patients With Stroke in Iran

2019 ◽  
Vol 31 (4) ◽  
pp. 213-218 ◽  
Author(s):  
Nooshin Masoudian ◽  
Mohammad Sarmadi ◽  
Rasool Najafi ◽  
Fereshteh Najafi ◽  
Shirin Maleki
Keyword(s):  
Quality Of Life ◽  
Cross Sectional Study ◽  
Burden Of Care ◽  
Cross Sectional ◽  
Outpatient Unit ◽  
Sf 36 ◽  
Neurology Clinic ◽  
Bivariate Regression ◽  
The Relationship

The purpose of this study was to investigate the relationship between Burden of Care and Quality of Life in informal home caregivers of stroke patients in Iran. Also we were trying to explore the factors that affect the burden of care. In this cross-sectional study, we have selected 62 informal home caregivers of the patients admitted to “the stroke outpatient unit of the neurology clinic” of the central hospital in Semnan province, Iran, to take part in the investigation. We interviewed them using the Caregiver Burden Inventory and SF-36 Questionnaire for assessing their quality of life. There was a negative and significant correlation between different aspects of quality of life and burden of care. In the bivariate regression model, being married and having lower levels of education (minimum years of schooling) were associated with higher levels of the burden. Our study shows that increasing burden of care in informal home caregivers reduces the quality of life in all domains. Thus, the results of this study indicate that an increase in the burden of caregiving on caregivers lowers their quality of life in all aspects; especially, caregivers who provide care to their spouses encountered more burden. Therefore, these caregivers must be in the center of interest while planning to reduce the burden of care.

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