scholarly journals Evaluation tools for quality life improvements for patients with Duchenne Muscular Dystrophy: a systematic review

2020 ◽  
Vol 9 (9) ◽  
pp. e491997397
Author(s):  
Andréa Victória Oliveira Santos ◽  
Lorenna Emília Sena Lopes ◽  
Iani Miranda Pinto ◽  
Stefane dos Santos ◽  
Luiz Eduardo Oliveira de Almeida ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Assessment Tools ◽  
World Health ◽  
Life Questionnaire ◽  
World Health Organization Quality ◽  
Quality Life

Introduction: Duchenne Muscular Dystrophy (DMD) is characterized by membrane dissociation, resulting in the breakdown of the musculoskeletal fiber. Objective:  to identify the assessment tools used to measure the quality of life in patients with DMD. Methodology: A systematic review of articles published from 2007 to 2017 on QOL assessment tools in patients with DMD was conducted in the SciELO, PubMED and LILACS databases. Results: 6 articles met the inclusion criteria, using the QOL assessment tools; Life Satisfaction Index for Adolescents; Quality of Life Evaluation Scale; Medical Outcomes Study 36; World Health Organization Quality of Life Instrument; Health Related Quality of Life Questionnaire for Children and Young People and their Parents e Pediatric Quality of Life Inventory. Conclusions: the tools for the evaluation of quality of life in patients with Duchenne Muscular Dystrophy (DMD) are essentials to determinate and to present an effective treatment focused on patient’s priorities and their main difficulties. However the lack of a validated scale specifically focused on this diagnostic interferes in the real score of those patients quality of life.

scholarly journals Quality Of Life And Coping In Parents Raising Children With Duchenne Muscular Dystrophy (DMD) In Nepal

2020 ◽  
Vol 9 (2) ◽  
pp. 30-41
Author(s):  
M Rana ◽  
R Prajapati ◽  
J Chaudhari ◽  
B Gautam ◽  
B Gurung
Keyword(s):  
Quality Of Life ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Coping Strategies ◽  
Psychological Health ◽  
World Health ◽  
Life Questionnaire ◽  
Raising Children ◽  
And Coping

Introduction: Quality of Life (QoL) and Coping are important components of mental health, especially important to parents raising children with Duchenne Muscular Dystrophy (DMD). Children with DMD face difficulties due to their disability and create special challenges for parents. Material And Method: The study aimed to assess QoL, demographic variables and coping strategies of parents raising children with DMD in Nepal. A descriptive cross-sectional design was adopted to collect data from 32 parents (mothers = 15, 47%; fathers =17, 53%) through purposive sampling. Socio-demographic pro-forma, World Health Organization's Quality of Life Questionnaire-BREF (WHOQOL-BREF) and Brief COPE Inventory were assessed. Results: The results revealed parents scores were below cutoff <60, indicating probable poor quality of life. QOL was moderately positively correlated with coping strategies and highly positively correlated with emotion-focused coping. There were significant differences in psychological health of parents in reference to their occupation, and in reference to their hospital born children. Parents in government job had better psychological health and parents into private business significantly used emotion-focused coping. Mutual caregivers had significantly better psychological health. Parents without health related problems significantly adopted problem focused coping and emotion focused coping. Conclusion: These findings will help stakeholders to understand DMD children and their impact on QOL and coping of parents and will facilitate to develop appropriate psychosocial intervention programs for the parents for the effective management of their children and their psycho-social wellbeing.

Physical Activity and Quality of Life in People With Visual Impairments: A Systematic Review

2022 ◽  
pp. 0145482X2110725
Author(s):  
Eduardo L. Caputo ◽  
Rafael B. Porcellis da Silva ◽  
Larissa Leal da Cunha ◽  
Gabriele R. Krüger ◽  
Felipe F. Reichert
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Systematic Review ◽  
Visual Impairments ◽  
World Health ◽  
Life Questionnaire ◽  
Cross Sectional ◽  
World Health Organization Quality ◽  
The Relationship

Objective This systematic review aimed to investigate the relationship between physical activity and quality of life (QOL) in people with visual impairments. Methods: Electronic searches were performed in PubMed, SPORTdiscus, CINAHL, Embase, and Web of Science. Observational studies describing the relationship between physical activity and QOL in adults with visual impairments were included. The Newcastle-Ottawa Scale (NOS) adapted for cross-sectional studies was used to assess the quality of the studies. Results: Overall, 327 studies were identified, and eight met the inclusion criteria. All studies had cross-sectional designs and seven were performed in developed countries. Physical activity was assessed objectively by one study, and five studies used the International Physical Activity Questionnaire. The World Health Organization Quality of Life Questionnaire was the most used instrument to measure QOL. Six studies reported a positive relationship between physical activity and QOL domains, as follows: life satisfaction, activity limitation, fair or poor health, physically and mentally unhealthy days, psychological health, and overall QOL. Conclusion: People with visual impairments who are engaged in physical activity are more likely to have better QOL outcomes.

scholarly journals Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?

2015 ◽  
Vol 73 (1) ◽  
pp. 52-57 ◽  
Author(s):  
Maria Clara Drummond Soares de Moura ◽  
Hanna Camila Wutzki ◽  
Mariana Callil Voos ◽  
Maria Bernadete Dutra Resende ◽  
Umbertina Conti Reed ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Functional Dependence ◽  
World Health ◽  
World Health Organization Quality ◽  
Patients Âgés ◽  
Organization Quality ◽  
Health Organization

ObjectiveThe relationship between functional dependence and quality of life (QOL) in Duchenne muscular dystrophy (DMD) patients and burden and QOL in caregivers is not clear. This study investigated possible relationships between functional dependence/QOL of DMD patients and QOL/burden of caregivers.MethodThis study included 35 boys (6-17 years) and respective caregivers (above 21 years). Caregivers answered to World Health Organization Quality of Life and Zarit Burden Interview questionnaires. Patients were assessed with the Motor Function Measure and the Autoquestionnaire Qualité de vie Enfant Imagé. Spearman correlations and linear regressions were run to investigate relationships between the variables.ResultsThe occurrence of lower QOL and higher burden among the caregivers of patients with Duchenne muscular dystrophy was evidenced. The functional dependence of patients was not considered a determinant factor. Higher caregivers’ burden was related to lower caregivers’ QOL and to higher patients’ ages.

Alexithyme Patientenmerkmale und Lebensqualität – Eine Querschnittsstudie an 79 ambulanten Patienten mit Angststörungen

2013 ◽  
Vol 61 (1) ◽  
pp. 17-26 ◽  
Author(s):  
Katrin Leenen ◽  
Michael Rufer ◽  
Hanspeter Moergeli ◽  
Hans-Jörgen Grabe ◽  
Josef Jenewein ◽  
...  
Keyword(s):  
Quality Of Life ◽  
World Health ◽  
Life Questionnaire ◽  
World Health Organization Quality ◽  
Fand Sich ◽  
Quality Of Life Questionnaire ◽  
Organization Quality ◽  
Health Organization ◽  
Tas 20

Aus Untersuchungen in der Normalbevölkerung ist bekannt, dass Menschen mit erhöhten Alexithymiewerten eine verminderte Lebensqualität (LQ) aufweisen. Für Patienten mit psychischen Störungen wurde dieser Zusammenhang jedoch kaum untersucht. Ziel dieser Studie war es, den möglichen Zusammenhang zwischen alexithymen Patientenmerkmalen und der LQ bei Patienten mit Angststörungen zu überprüfen. Bei 79 ambulanten Patienten mit Angststörungen wurden alexithyme Charakteristika mit der Toronto Alexithymia Scale (TAS-20), die LQ mit der Kurzversion des World Health Organization Quality of Life Questionnaire 100 (WHOQOL-BREF) erfasst. Darüber hinaus fand eine Erhebung der psychischen Symptombelastung (SCL-90-R) und depressiven Symptomatik (MADRS) statt. Mittels hierarchischer Regressionsanalysen wurde der Zusammenhang zwischen der alexithymen Charakteristika und den unterschiedlichen LQ-Domänen berechnet. Die Patienten zeigten eine im Vergleich zur Normalbevölkerung deutlich verminderte LQ. Als Hauptergebnis fand sich, auch nach Kontrolle von Depression, Ängstlichkeit und Geschlecht, ein signifikanter Zusammenhang zwischen den beiden TAS-20 Subskalen Schwierigkeiten, Gefühle zu identifizieren und zu beschreiben und vor allem der psychischen LQ. Unsere Ergebnisse sprechen dafür, bei der Diagnostik und Therapieplanung von Patienten mit Angststörungen alexithyme Merkmale einzubeziehen. Im Falle von ausgeprägten alexithymen Merkmalen sollten psychotherapeutische Interventionen zur Verbesserung der Schwierigkeiten Gefühle wahrzunehmen und zu kommunizieren in Betracht gezogen werden.

scholarly journals Magnesium level correlation with clinical status and quality of life in women with hormone related conditions and pregnancy based on real world data

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Svetlana Orlova ◽  
Galina Dikke ◽  
Gisele Pickering ◽  
Eliso Djobava ◽  
Sofya Konchits ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Status ◽  
High Response Rate ◽  
World Health ◽  
Life Questionnaire ◽  
Real World Data ◽  
World Health Organization Quality ◽  
Patient Reported ◽  
Health Organization

AbstractThis study was aimed to assess the effectiveness of magnesium (Mg)-vitamin B 6 replenishment and its correlation with clinical status in pregnant women (PW), and quality of life in women with hormone-related conditions (HRCW) and hypomagnesemia (HME). Data collected in four observational studies were pooled and analysed. All women received Mg supplementation for 4 weeks. The proportion of women with normalized Mg level, and the correlation between serum Mg dynamics and number of symptoms/complaints (PW) or changes in World Health Organization quality of life questionnaire scores (WHOQOL; HRCW) were evaluated. 869 PW and 957 HRCW were included in the study. Normalization of serum Mg level to ≥ 0.66 mmol/L occurred in 92.1% of PW and 78.4% of HRCW, and to ≥ 0.8 mmol/L in 73.8% and 58.9%, respectively. Mg normalization was accompanied by a median decrease of 1 symptom and 1 complaint in PW. Serum Mg level increase by 0.1 mmol/L was associated to significant changes in the WHOQOL scores in HRCW. Treatment of HME with the Mg for approximately 4 weeks provided a high response rate of Mg serum level, was associated with an improvement in symptom severity and complaints in PW, and WHOQOL score in HRCW. A 0.8 mmol/L cut-off appeared to be more relevant in terms of patient-reported outcomes.

scholarly journals Comparison of two assessment instruments of quality of life in older adults

2013 ◽  
Vol 16 (2) ◽  
pp. 328-337 ◽  
Author(s):  
Camila Mello dos Santos ◽  
Fernando Neves Hugo ◽  
Andréa Fachel Leal ◽  
Juliana Balbinot Hilgert
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Social Relations ◽  
Functional Limitation ◽  
World Health ◽  
Life Questionnaire ◽  
Physical Pain ◽  
World Health Organization Quality ◽  
Low Magnitude

Objective: To investigate if there is convergent validity between the dimensions of the World Health Organization Quality of Life Questionnaire-Brief Version (WHOQOL-Bref) and the Oral Health Impact Profile-14 (OHIP-14) questionnaire. Methods: In this cross-sectional study, a random sample of 872 elderly Southern-Brazilians was evaluated. Questionnaires assessing socio-demographic data and quality of life in general (WHOQOL-Bref) and oral health-related quality of life (OHIP-14) were used. Analysis of the WHOQOL-Bref and OHIP-14 questionnaires used descriptive statistics. The dimensions of the WHOQOL-Bref and OHIP-14 questionnaires were correlated by affinity. The convergence between WHOQOL-Bref and OHIP-14 dimensions was analyzed by Spearman’s correlation coefficients. Results: The social relations dimension of the WHOQOL-Bref presented the greatest mean (18.24 ± 2.30). The physical pain dimension of the OHIP-14 presented a median of 1.0 (0.0 – 3.0). All correlations between the WHOQOL-Bref and OHIP-14 dimensions were significant, negative and associated with a low magnitude. The correlation between WHOQOL-physical and OHIP-functional limitation, OHIP-physical pain, OHIP-physical disability and OHIP-handicap were – 0.164, – 0.262, – 0.196 and – 0.125 respectively. WHOQOL-psychological was associated with OHIP-psychological discomfort and OHIP-psychological disability, and WHOQOL-social showed an association with OHIP-social disability. Conclusions: All correlations analyzed had a positive association of low magnitude. Despite the fact that the WHOQOL-Bref and OHIP-14 instruments have related dimensions, they measure physical, psychological and social relations differently.

scholarly journals Workplace Violence Against Chinese Frontline Clinicians During the COVID-19 Pandemic and Its Associations With Demographic and Clinical Characteristics and Quality of Life: A Structural Equation Modeling Investigation

2021 ◽  
Vol 12 ◽  
Author(s):  
Yuan Yang ◽  
Yue Li ◽  
Ying An ◽  
Yan-Jie Zhao ◽  
Ling Zhang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Structural Equation Modeling ◽  
Workplace Violence ◽  
Structural Equation ◽  
Emotional Disturbances ◽  
World Health ◽  
Equation Modeling ◽  
Life Questionnaire ◽  
World Health Organization Quality

Background: Workplace violence is a major concern for clinicians worldwide. There has been little data on the epidemiology of workplace violence against frontline clinicians during the COVID-19 pandemic. This study examined the pattern of workplace violence and its association with quality of life (QOL) against frontline clinicians during the outbreak of COVID-19 pandemic in China.Methods: A cross-sectional online study was conducted in China between March 15 and March 20, 2020. Frontline clinicians' experience with workplace violence was measured with six standardized questions derived from the Workplace Violence Scale, while anxiety, depressive, and insomnia symptoms, and QOL were measured using the General Anxiety Disorder Questionnaire, the Patient Health Questionnaire, the Insomnia Severity Index, and the World Health Organization Quality of Life Questionnaire, respectively. Univariate analyses, multivariable logistic regression analyses, and structural equation modeling (SEM) were conducted.Results: A total of 15,531 clinicians completed the assessment; 2,878 (18.5, 95% CI = 17.92–19.14%) reported workplace violence during the outbreak of the COVID-19 pandemic (verbal violence: 16.1%; physical violence: 6.9%). According to multivariable models, key correlates of workplace violence were male gender, longer work experience, higher education level, smoking, working in the psychiatry or emergency department, working in tertiary hospitals, being involved in direct care of infected patients, having infected family/ friends/ colleagues, and frequently using social communication programs. Clinicians working in inpatient departments were less likely to report workplace violence compared to those working in outpatient departments. SEM analysis revealed that both violence and emotional disturbances (anxiety, depression, and insomnia) directly affected QOL (standardized direct effect = −0.031, and −0.566, respectively, P &lt; 0.05), while emotional disturbances partly mediated the association between work violence and QOL (standardized indirect effect = −0.184, P &lt; 0.05).Conclusion: Frontline clinicians were vulnerable to workplace violence during the COVID-19 pandemic. Due to the negative impact of workplace violence on quality of care and clinicians' QOL, health authorities and policymakers should take effective measures to reduce workplace violence against clinicians.

scholarly journals The Quality Life of Renal Failure Patient Undergo Hemodialysis

2016 ◽  
Vol 3 (2) ◽  
pp. 118-122
Author(s):  
Rizky Firman ◽  
Sri Mugianti ◽  
Imam Sunarno ◽  
Sri Winarni
Keyword(s):  
Quality Of Life ◽  
Renal Failure ◽  
Public Health Problem ◽  
World Health ◽  
Psychological State ◽  
World Health Organization Quality ◽  
Renal Failure Patient ◽  
Quality Life ◽  
The World

Chronic renal failure (CRF) is a public health problem in the world and is now recognized ascommon diseases with risk of hemodialysis therapy. Hemodialysis can have an impact to the patientquality of life. The aim of the research was to describe the patient quality of life with renal failure underghemodialysis at Mardi Waluyo Blitar hospital. The research used a descriptive research design. Thepopulation was all patients with renal failure which registered in Hemodialysis of Mardi Waluyo Blitarhospital on October-December 2014 as many as 84 patients. The sample was 34 patients selected byaccidental sampling. The data collection was conducted on March 30th – April 4th, 2015. The datacollecting used questionnaires of The World Health Organization Quality of Life (QoL WHO) whichdescribed physical health, psychological, social relationships, and environment. In general the qualitylife of renal failure patient underrgo hemodialysis in bad category was 55.9% (19 patients). Thiscondition was due to a chronic disease and its complications potentially stressors including renalfailure patient. Stressors that arise caused by environmental conditions, psychological state, and physicalhealth. The study recommended that health services were expected to provide comfortability, improvemaintenance functions, improve interpersonal relationships, and counseling.

scholarly journals Instrumentos de avaliação de qualidade de vida de pessoas com estomias intestinais: Revisão Integrativa

2019 ◽  
Vol 90 (28) ◽  
Author(s):  
Prisciane Cardoso Silva ◽  
Marina Soares Mota ◽  
Stella Minasi Oliveira
Keyword(s):  
Quality Of Life ◽  
World Health Organization ◽  
World Health ◽  
Life Questionnaire ◽  
World Health Organization Quality ◽  
European Organization ◽  
Quality Of Life Questionnaire ◽  
Organization Quality ◽  
Health Organization

Objetivo: Buscar na literatura instrumentos utilizados para avaliar a qualidade de vida de pessoas com estomias intestinais. Metodologia: Trata-se de uma revisão integrativa realizada no ano de 2019, em bases de dados nacionais e internacionais. Resultados: Foram encontrados 17 artigos, com sete instrumentos utilizados para avaliar a qualidade de vida de pessoas com estomias intestinais: City of Hope Quality of Life-Ostomy Questionnaire, Stoma Self-Efficacy Scale, World Health Organization Quality of Life abreviado, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, Ostomy-specific (Stoma-QoL) e Escala de Qualidade de Vida de Flanagan. Conclusão: Esta revisão permitiu identificar os instrumentos que estão sendo utilizados para avaliar a QV de pessoas com estomias intestinais. Após a análise dos instrumentos, salienta-se que o City of Hope – Quality of Life – Ostomy Questionnaire é o mais abrangente dentre os instrumentos específicos às pessoas com estomias intestinais.

scholarly journals Quality of life in schizophrenic patients: the influence of sociodemographic and clinical characteristics and satisfaction with social support

2018 ◽  
Vol 40 (3) ◽  
pp. 202-209 ◽  
Author(s):  
Lara Manuela Guedes de Pinho ◽  
Anabela Maria de Sousa Pereira ◽  
Cláudia Margarida Correia Balula Chaves
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Clinical Characteristics ◽  
Assessment Tools ◽  
Support Network ◽  
World Health ◽  
Satisfaction Scale ◽  
World Health Organization Quality ◽  
Schizophrenic Patients

Abstract Objective To evaluate the relationship of sociodemographic and clinical characteristics and satisfaction with social support with the quality of life of schizophrenic patients. Methodology This study included a sample of 268 participants. An interview was conducted to obtain sociodemographic and clinical data, supplemented with two assessment tools used to evaluate quality of life (World Health Organization Quality of Life instrument-Abbreviated version – WHOQOL-Bref) and satisfaction with social support (Social Support Satisfaction Scale – SSSS). Descriptive and inferential analyses were performed. Results Most individuals were male (63.4%), with a mean age of 45.4 years, single (85.4%), living with their family (62.3%) and unemployed (90.3%). As for clinical characteristics, most had the disease for less than 20 years (50.7%), and 55.6% had at least one hospitalization within the last 5 years. Being employed and having had no hospitalization within the last 5 years were positively correlated with one or more WHOQOL-Bref domains. The results of the variables intimacy (p<0.001) and satisfaction with friends (p<0.001) were independently related to the total WHOQOL-Bref score. Conclusion Having a job, having had no hospitalization within the last 5 years and having greater satisfaction with social support are factors that positively influence quality of life among schizophrenics. It is therefore crucial that the psychosocial rehabilitation of patients with schizophrenia take these factors into account, increasing the support network, preventing relapses and promoting occupational activities.

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