Factors affecting the health-related quality of life of caregivers of patients with muscular dystrophy

The study aimed to identify and compare the factors affecting health-related quality of life (HRQoL) depending on the occupational status of cancer survivors. This study was a secondary data analysis from the Korea National Health and Nutrition Examination Survey (KNHANES) from 2014 to 2018. Hierarchical multivariate linear regression was used to investigate the factors affecting the HRQoL of each group. Non-working cancer survivors had significantly lower HRQoL than working cancer survivors (p < 0.001). A hierarchical multiple regression model showed that demographic, health-related, and psychological characteristics explained 62.0% of non-working cancer survivors’ HRQoL (F = 4.29, p < 0.001). Among the input variables, health-related characteristics were the most influential factors (ΔR2 = 0.274, F = 9.84, p < 0.001). For working cancer survivors, health-related characteristics were the only variable that was statistically associated with HRQoL (F = 5.556, p < 0.001). It is important to enhance physical activities and manage the chronic disease to improve the HRQoL of working cancer survivors. Further, managing health-related characteristics, including depressive symptoms and suicidal ideation, is necessary for non-working cancer survivors. Regarding working survivors, psychological factors such as depressive symptoms and suicidal tendencies did not affect HRQoL. Therefore, an early and effective return to work program should be developed for the improvement of their HRQoL.

Download Full-text

Study of the Factors Affecting Health-Related Quality of Life in Adolescents After Liver Transplantation

American Journal of Transplantation ◽

10.1111/j.1600-6143.2009.02604.x ◽

2009 ◽

Vol 9 (5) ◽

pp. 1179-1188 ◽

Cited By ~ 52

Author(s):

R. M. Taylor ◽

L. S. Franck ◽

F. Gibson ◽

N. Donaldson ◽

A. Dhawan

Keyword(s):

Quality Of Life ◽

Liver Transplantation ◽

Health Related Quality ◽

Factors Affecting ◽

Related Quality ◽

Health Related

Download Full-text

Assessment of Health-Related Quality of Life in Alcoholic Liver Disease Patients

International Journal of Research in Pharmaceutical Sciences ◽

10.26452/ijrps.v11ispl4.4394 ◽

2020 ◽

Vol 11 (SPL4) ◽

pp. 1889-1894

Author(s):

Setareh Dastyar Haghighi ◽

Vandhita Nair ◽

Vas Sonali Maria ◽

Gopika K S ◽

Divya Mol E C ◽

...

Keyword(s):

Quality Of Life ◽

Liver Disease ◽

Alcoholic Liver Disease ◽

Case Report Form ◽

Health Related Quality ◽

Mild Depression ◽

Factors Affecting ◽

Related Quality ◽

Health Related

Alcohol induced cirrhosis prevalence has increased worldwide of late and has added markedly to the global burden of diseases. However, research involving quality of life as treatment outcome for alcoholic liver disease is limited. The primary objective of the study was to evaluate the health related quality of life and factors affecting it in alcoholic liver disease patients. Secondary objective was to analyze mental health status and prescription pattern in alcoholic liver disease patients. Patients, eligible to participate, were briefed regarding the purpose of the study and informed consent was obtained. Self-designed case report form and validated questionnaires were used to record information on physical, mental and emotional functioning of the patient. The study included 51 patients. It was found that majority had low quality of life scores with role limitation due to physical health (5.39 ± 16.9) domain being the most affected. It was also found that the symptom fatigue caused the most hindrance to patient’s daily activities (1.31± 1.20). Most of the patients reported having mild depression (50.98%). Prescription analysis showed that diuretics (74.50%) and drugs for hepatic encephalopathy were the most commonly used drugs. The present study found that alcoholic liver disease considerably impaired health related quality of life and identified the contributing factors as presence of complication, age, severity of disease and symptoms like fatigue and abdominal pain. Hence, evaluating factors affecting quality of life and prescription patterns help identify targets for novel treatment strategies.

Download Full-text

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

Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques ◽

10.1017/cjn.2017.65 ◽

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.

Download Full-text

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

Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques ◽

10.1017/cjn.2018.174 ◽

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.

Download Full-text