scholarly journals Duchenne muscular dystrophy: quality of life among 95 patients evaluated using the Life Satisfaction Index for Adolescents

2011 ◽  
Vol 69 (1) ◽  
pp. 19-22 ◽  
Author(s):  
Valdecir A. Simon ◽  
Maria Bernardete Dutra Resende ◽  
Margarete A.V.P. Simon ◽  
Edmar Zanoteli ◽  
Umbertina Conti Reed
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Age Groups ◽  
Good Alternative ◽  
Clinical Aspects ◽  
Satisfaction Index ◽  
Life Satisfaction Index

The purpose of this study was to evaluate the quality of life (QoL) of patients with Duchenne muscular dystrophy (DMD) in different stages of the disease, by means of the Life Satisfaction Index for Adolescents (LSI-A). The practicality of this scale was also verified. The LSI-A was applied four times to 95 patients with DMD who were undergoing steroid therapy, at three-month intervals. The patients were divided into four groups according to age. The results from the four applications and the inter and intra-examiner concordance were treated statistically. Comparing the different age groups, patients with DMD did not lose QoL, even with disease progression. We concluded that, in spite of the progressive course of the disease, the QoL in patients with DMD does not get worse. The use of a scale that embraces a great diversity of circumstances in patients' lives, without considering clinical aspects excessively, is a good alternative for assessing the QoL of these patients.

Life Satisfaction of Parents of Adolescents with Duchenne Muscular Dystrophy: Validation of a New Instrument

1992 ◽  
Vol 12 (5) ◽  
pp. 296-312 ◽  
Author(s):  
Rebecca M. Renwick ◽  
Denise T. Reid
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Discriminant Validity ◽  
Generation Process ◽  
Satisfaction Index ◽  
Care Givers ◽  
New Instrument

Individuals with Duchenne muscular dystrophy typically experience some of the most severe physical effects of this chronic, progressive disorder during their teenage years. This can impact significantly on their quality of life, particularly because they are simultaneously grappling with the complex, identity-related developmental tasks associated with this stage in life. In turn, these circumstances are very likely to affect the quality of life of their parents, who are also usually their care givers. To date, no attempt has been made to actually measure the quality of life of these parents, perhaps due in part to the lack of instruments designed to do this. Accordingly, this paper outlines the conceptual basis, the item generation process, and the content validation of a new instrument, the Life Satisfaction Index for Parents (LSI-P), developed to assess one aspect of quality of life, namely, life satisfaction, in this population. The results of a study examining construct, concurrent, and discriminant validity and internal consistency of the LSI-P are also presented. Potential applications of the instrument and future directions for research are discussed.

scholarly journals The Satisfaction of Small Russian Cities’ Residents with the Quality of Their Lives: A Case Study of Perm Krai

2020 ◽  
pp. 110-115
Author(s):  
Nataliya V. Kulagina ◽  
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
Social Policy ◽  
Age Groups ◽  
General Level ◽  
Subjective Perception ◽  
Satisfaction Index ◽  
Perm Krai ◽  
Life Satisfaction Index

The problem of population satisfaction with the quality of life is considered. The subjective perception by a person of the quality of his life is an important internal factor that affects his social well-being, satisfaction with his position, prospects, and individual spheres of society. Improving the quality of life of the population is one of the primary tasks of the authorities. Therefore, the analysis of the population’s assessment of the quality of certain aspects of their lives is important for federal and local authorities to determine priority areas of social policy, develop strategies and work plans of state institutions of various departments, etc. The article presents the results of a comparative study of differences in the subjective perception of various indicators of quality of life and satisfaction with various areas of life of people of different age groups. N.V. Panina’s “Life Satisfaction Index”, I. Karler’s technique to study the degree of satisfaction with one’s functioning in various fields, the Russified version of “MOS SF-36” for assessing the quality of life were used as research tools. The study was conducted in the cities of the Upper Kama region (the north of Perm Krai). The sample size was 600 people. Respondents are representatives of three age groups. Men and women are in equal proportions. Group distribution was carried out on the basis of the age classification proposed by the Institute of Age Physiology of the Academy of Pedagogical Sciences of the USSR: adolescence (17- to 21-year-olds); maturity (middle age (36- to 55-year-olds); elderly age (56-to 75-year-olds). Groups were equalized in quantitative composition. It has been revealed that among the residents of small regional cities, regardless of age, the general level of satisfaction with the quality of life is at an average level, among older people there is a tendency to a lower level. Life satisfaction and quality of life indicators decline with age. There are no statistically significant differences in the general life satisfaction index for people of different age groups. However, some indicators of quality of life revealed significant differences. In each age group, there is a certain resource sphere of life, the successful functioning of which is the basis of satisfaction, stability, and success. It is a marital relationship for the elderly, a professional sphere for middle-aged people, a social sphere for young people. The data obtained can help to define the priorities of social policy in regions, can be used in the development of socially-oriented technologies and programs aimed at improving of the living conditions of people.

scholarly journals Translation and validation of the Life Satisfaction Index for Adolescents scale with neuromuscular disorders: LSI-A Brazil

2017 ◽  
Vol 75 (8) ◽  
pp. 553-562 ◽  
Author(s):  
Valdecir Antonio Simon ◽  
Edmar Zanoteli ◽  
Margarete Andreozzi Vaz Pereira Simon ◽  
Maria Bernadete Dutra de Resende ◽  
Umbertina Conti Reed
Keyword(s):  
Life Satisfaction ◽  
Muscular Dystrophy ◽  
Muscular Atrophy ◽  
Neuromuscular Disorders ◽  
Patient Version ◽  
Satisfaction Index ◽  
Assess Quality ◽  
Parent Version ◽  
Life Satisfaction Index

ABSTRACT Objective To validate the Life Satisfaction Index for Adolescents (LSI-A) scale, parent version and patient version, for Duchenne muscular dystrophy (DMD), spinal muscular atrophy (SMA) and limb-girdle muscular dystrophy (LGMD). Methods The parent version of the instrument was divided into Groups A, B, C and D; and the patient version, divided into B, C and D. For the statistical calculation, the following tests were used: Cronbach’s α, ICC, Pearson and the ROC Curve. Results The parent and patient versions of the instrument are presented, with the following results in the overall score, respectively: Cronbach’s α, 0.87 and 0.89; reliability, r 0.98 and 0.97; reproducibility, ICC 0.69 and 0.80; sensitivity, 0.78 and 0.72; specificity, 0.5 and 0.69; and accuracy, 64% and 70.4%. Conclusion According to the validity and reproducibility values, the LSI-A Brazil parent and patient versions, are clinically useful to assess quality of life in DMD, SMA or LGMD and may also be useful for other neuromuscular disorders.

Life Satisfaction among Kidney Transplant Recipients: Demographic and Biological Factors

2002 ◽  
Vol 12 (4) ◽  
pp. 293-298 ◽  
Author(s):  
Bonnie Siegal ◽  
R. J. Halbert ◽  
M. J. McGuire
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
Kidney Transplant ◽  
Transplant Recipients ◽  
Biological Factors ◽  
Kidney Transplant Recipients ◽  
Satisfaction Index ◽  
Initial Survey ◽  
Life Satisfaction Index

Purpose The Transplant Learning Center is a program providing education and support for solid-organ transplant recipients taking cyclosporine (Neoral or Sandimmune). One goal of the program is to improve patients' quality of life, which may be influenced by demographic and biological factors, and in turn influences adherence to prescribed medication regimens. We analyzed the results from the initial survey of enrollees to better understand life satisfaction and to test the validity and reliability of the satisfaction scale used in the program. Method Patients enter the program through self-selection: all enrollees who received a kidney transplant were included in this analysis. Satisfaction was measured using the Life Satisfaction Index, which includes 8 questions about aspects of satisfaction with the patient's life. Associations between the Life Satisfaction Index and demographic factors, comorbid medical conditions, adverse effects of immunosuppressants, and medication compliance were examined. Results All 3676 kidney transplant recipients who completed the initial survey were included. Mean satisfaction scores were highest in persons who were older than 64 years, men, and those who were married. Satsifaction scores were positively correlated with education and income. Mean satisfaction score was significantly lower among persons with medical comorbidities, persons who reported that adverse effects of medications were more frequent, and persons who reported noncompliance with their medication regimen. Conclusion The Life Satisfaction Index is a transplant-specific measure of health-related quality of life that can be used to help detect areas of potential concern in the clinical management of kidney transplant recipients.

Rasch Analysis of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales Administered to Patients With Duchenne Muscular Dystrophy

2021 ◽  
Vol 24 (10) ◽  
pp. 1490-1498
Author(s):  
Erik Landfeldt ◽  
Joel Iff ◽  
Erik Henricson ◽  
V. Vishwanathan ◽  
S. Chidambaranathan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Rasch Analysis ◽  
Quality Of Life Inventory ◽  
Life Inventory

scholarly journals A.01 The relationship between fatigue and health-related quality of life in a clinical trial population of Duchenne muscular dystrophy patients

2017 ◽  
Vol 44 (S2) ◽  
pp. S8-S8
Author(s):  
Y Wei ◽  
B El-Aloul ◽  
C Nguyen ◽  
E Zapata-Aldana ◽  
C Campbell
Keyword(s):  
Quality Of Life ◽  
Clinical Trial ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Parent Report ◽  
Health Related Quality ◽  
Patient Report ◽  
Related Quality ◽  
Health Related

Background: Fatigue was recently reported to be the largest contributor to poor health-related quality of life (HRQOL) in paediatric Duchenne muscular dystrophy (DMD). Additional studies are necessary to confirm the generalizability of this finding. Our objective was to explore the longitudinal relationship between fatigue and HRQOL in an additional cohort of DMD patients. Methods: We performed a secondary analysis of data from a clinical trial (NCT00592553), which enrolled patients with nonsense mutation DMD, aged 5–20 years, from 37 sites in 11 countries (N=174). Fatigue and HRQOL were assessed using the PedsQLTM Multidimensional Fatigue Scale and Generic Core Scales, respectively, by patient- and parent-report at baseline and over 48 weeks. Results: Patients reported greater fatigue than healthy controls from published data. There was no significant difference between patient- and parent-reported fatigue. Fatigue was significantly correlated with worse HRQOL at baseline, by patient-report (r=0.70, P<0.001) and parent-report (r=0.70, P<0.001); and at 48 weeks, by patient-report (r=0.79, P<0.001) and parent-report (r=0.74, P<0.001). Change in fatigue was significantly correlated with change in HRQOL over 48 weeks, by patient-report (r=0.64, P<0.001) and parent-report (r=0.67, P<0.001). Conclusions: Fatigue is a major contributor to HRQOL in DMD. The strong association between fatigue and HRQOL corroborates previous studies, and suggests that reducing fatigue may improve HRQOL.

scholarly journals P.072 Agreement between children and their parents’ ratings of the health-related quality of life of children with Duchenne Muscular Dystrophy

2018 ◽  
Vol 45 (s2) ◽  
pp. S35-S35
Author(s):  
S Brar ◽  
C Campbell ◽  
E McColl ◽  
W Martens ◽  
M McDermott ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy ◽  
Level Of Agreement

Background: When measuring young Duchenne Muscular Dystrophy (DMD) patients’ health-related quality of life (HRQoL), parent-proxy reports are heavily relied on. Therefore, it is imperative that the relationship between parent-proxy and child self-report HRQoL is understood. This study examined the level of agreement between children and their parent-proxy rating of the child’s HRQoL. Methods: We used FOR-DMD clinical trial baseline data. HRQoL, measured using the PedsQL inventory, was reported by 178 parent and child (ages 4 to 7 years) dyads. Intracorrelation coefficients (ICC) measured absolute agreement while paired t-tests determined differences in the average HRQoL ratings between groups. Results: The level of agreement between child and parent-proxy ratings of HRQoL was poor for the generic PedsQL scale (ICC: 0.29) and its subscales; and, similarly low for the neuromuscular disease module (ICC:0.16). On average, parents rated their child’s HRQoL as poorer than the children rated themselves in all scales except for psychosocial and school functioning. Conclusions: Child and parent-proxy HRQoL ratings are discordant in this study sample, as occurs in other chronic pediatric diseases. This should be taken into account when interpreting clinical and research HRQoL findings in this population. Future studies should examine reasons for parents’ perception of poorer HRQoL than that reported by their children.

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