Health-Related Quality of Life, Physical Function, Fatigue, and Disease Activity in Children with Established Polyarticular Juvenile Idiopathic Arthritis

2009 ◽  
Vol 36 (6) ◽  
pp. 1330-1336 ◽  
Author(s):  
SARAH RINGOLD ◽  
CAROL A. WALLACE ◽  
FREDERICK P. RIVARA
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Inactive Disease ◽  
Healthy Controls ◽  
Polyarticular Juvenile Idiopathic Arthritis ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy ◽  
Multidimensional Fatigue Scale

Objective.To compare child self-report and parent/proxy report of health-related quality of life (HRQOL), disability, and fatigue in children with active polyarticular juvenile idiopathic arthritis (JIA) to that of children with inactive polyarticular JIA and to previous data from healthy controls.Methods.Cross-sectional survey of children with polyarticular JIA diagnosed and treated between 2000 to 2006 and their parent/proxy. The Childhood Health Assessment Questionnaire, Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales, PedsQL Rheumatology Module, and PedsQL Multidimensional Fatigue Scale were administered. Disease activity data were collected from the physician clinic notes. Comparisons were performed with t tests. Correlations between patient and parent/proxy reports were measured with Pearson correlation coefficients.Results.Sixty children and/or their parents/proxies participated (79% response rate). Disease activity status was available for 52, and 32 met criteria for inactive disease (62%). Participants reported lower scores on the PedsQL Generic Core Scales (range 2.54–9.13 points lower) and the PedsQL Rheumatology Module (range 2.46–6.96 points lower) than those with inactive disease. Participants also reported lower scores on the PedsQL Multidimensional Fatigue Scale than did healthy controls, regardless of disease activity status (range 0.06–9.2 points lower).Conclusion.Although children in this cohort with polyarticular JIA and inactive disease reported HRQOL scores similar to those of healthy controls, children with polyarticular JIA and their parents/proxies tended to report more fatigue than controls, regardless of disease activity. Application of these measures prospectively to larger cohorts of children with JIA is needed to assess these differences.

Health-related quality of life in children with hereditary angioedema compared with patients with histaminergic angioedema

2021 ◽  
Vol 42 (4) ◽  
pp. 325-332 ◽  
Author(s):  
Melike Ocak ◽  
Ercan Nain ◽  
Aysegul Akarsu ◽  
Umit Murat Sahiner ◽  
Bulent Enis Sekerel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Symptom Onset ◽  
Hereditary Angioedema ◽  
Well Being ◽  
Healthy Controls ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy

Background: Hereditary angioedema (HAE) is a potentially life-threatening disease that remarkably impacts patients' health-related quality of life (HRQoL). This study evaluated the HRQoL in children with HAE and compared it with healthy controls and patients with histaminergic angioedema (HA). Methods: Fifty-nine children with HAE (median [interquartile range {IQR}], ages, 8.9 years [5.4‐12.6 years]), 60 children with HA (median [IQR] ages, 10.3 years [8‐15.4 years]), and 72 healthy controls (median [IQR] ages, 10.3 years [6.6‐13.9 years]) were recruited. All the children and their families completed the age-adapted KINDL generic instrument for assessing health-related quality of life in children and adolescents. Results: The total HRQoL score and other subscales scores of both the patients with HAE and patients with HA, and the parent-proxy reports were significantly lower than those of the healthy children (p < 0.05). In the patients with HAE, the age at symptom onset was positively correlated with physical well-being (r = 0.335; p = 0.043) and negatively correlated with self-esteem (r = ‐0.324; p = 0.049). In addition, the physical well-being scores were affected by the site of attacks, which was significantly lower in the patients with abdominal pain attacks (p = 0.045). The family scores and total scores were statistically significantly higher in the HA group than the HAE group (p < 0.001 and p = 0.009, respectively). A significant correlation was found between self-report and parent-proxy HRQoLs in total and all subscales scores in the patients with HAE. For HA, there were no significant correlations for family scores. Conclusion: HAE caused significant impairment of the HRQoL of children and their families, and affected their lifestyle and quality of life. In pediatric patients with HAE, the HRQoL is mainly related to age at symptom onset and the site of attacks. Although patients with HAE are affected more negatively than the patients with HA, HA affected the quality of life as well.

The Effect of Golimumab Therapy on Disease Activity and Health-related Quality of Life in Patients with Ankylosing Spondylitis: 2-year Results of the GO-RAISE Trial

2014 ◽  
Vol 41 (6) ◽  
pp. 1095-1103 ◽  
Author(s):  
Désirée van der Heijde ◽  
Atul Deodhar ◽  
Jürgen Braun ◽  
Michael Mack ◽  
Benjamin Hsu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ankylosing Spondylitis ◽  
Disease Activity ◽  
Inactive Disease ◽  
Health Related Quality ◽  
Major Improvement ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related

Objective.To evaluate the effects of golimumab therapy on achieving inactive disease or major improvement, as assessed by the Ankylosing Spondylitis Disease Activity Score (ASDAS), and improvements in health-related quality of life (HRQOL) and productivity through 2 years in patients with AS.Methods.In the phase III GO-RAISE trial, 356 patients were randomized to placebo with crossover to golimumab 50 mg at Week 24 (n = 78), golimumab 50 mg (n = 138), or golimumab 100 mg (n = 140) at baseline and every 4 weeks. The proportions of patients with ASDAS major improvement (improvement ≥ 2.0) or inactive disease (score < 1.3) were determined. HRQOL was assessed using the 36-item Medical Outcomes Study Short Form-36 physical/mental component summary (SF-36 PCS/MCS) scores (normal score ≥ 50). The effect of disease on productivity was assessed by visual analog scale (0–10). Regression analyses on the association of disease activity and HRQOL were performed. The final assessment was at Week 104.Results.Significantly greater proportions of golimumab-treated patients achieved ASDAS major improvement or inactive disease at weeks 14 and 24 versus placebo. Through Week 104, patients who achieved ASDAS inactive disease or major improvement had significantly greater improvements in SF-36 PCS and MCS scores and productivity than did patients not meeting these targets. Among all patients, achieving ASDAS inactive disease at weeks 52 and 104 was associated with normalized SF-36 PCS/MCS scores and significant improvements in work productivity.Conclusion.Greater proportions of golimumab-treated patients achieved ASDAS major improvement or inactive disease and improved HRQOL versus placebo. Achieving an inactive disease state by ASDAS criteria (< 1.3) was associated with normalized HRQOL through 2 years.

The Vietnamese Version of the Health-related Quality of Life Measure for Children with Epilepsy (CHEQOL-25): Reliability

MedPharmRes ◽  
2017 ◽  
Vol 1 (1) ◽  
pp. 9-14
Author(s):  
Tri Doan ◽  
Tuan Tran ◽  
Han Nguyen ◽  
◽  
◽  
...  
Keyword(s):  
Quality Of Life ◽  
Good Practice ◽  
The Self ◽  
Self Report ◽  
Health Related Quality ◽  
Life Measure ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy

Purpose: This study aimed to translate and culturally adapt the self-report and parent-proxy Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL-25) into Vietnamese and to evaluate their reliability. Methods: Both English versions of the self-report and parent-proxy CHEQOL-25 were translated and culturally adapted into Vietnamese by using the Principles of Good Practice for the Translation and Cultural Adaptation Process. The Vietnamese versions were scored by 77 epileptic patients, who aged 8–15 years, and their parents/caregivers at neurology outpatient clinic of Children Hospital No. 2 – Ho Chi Minh City. Reliability of the questionnaires was determined by using Cronbach’s coefficient α and intra-class correlation coefficient (ICC). Results: Both Vietnamese versions of the self-report and parent-proxy CHEQOL-25 were shown to be consistent with the English ones, easy to understand for Vietnamese children and parents. Thus, no further modification was required. Cronbach’s α coefficient for each subscale of the Vietnamese version of the self-report and parent-proxy CHEQOL-25 was 0.65 to 0.86 and 0.83 to 0.86, respectively. The ICC for each subscale of the self-report and parent-proxy CHEQOL-25 was in the range of 0.61 to 0.86 and 0.77 to 0.98, respectively. Conclusion: The Vietnamese version of the self-report and parent-proxy CHEQOL-25 were the first questionnaires about quality of life of epileptic children in Vietnam. This Vietnamese version was shown to be reliable to assess the quality of life of children with epilepsy aged 8–15 years.

scholarly journals The effect of intravenous golimumab on health-related quality of life and work productivity in patients with active psoriatic arthritis: results of the Phase 3 GO-VIBRANT trial

2021 ◽  
Author(s):  
Alexis Ogdie ◽  
Jessica A. Walsh ◽  
Soumya D. Chakravarty ◽  
Steven Peterson ◽  
Kim Hung Lo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psoriatic Arthritis ◽  
Disease Activity ◽  
Productivity Loss ◽  
Health Related Quality ◽  
Functional Capability ◽  
Related Quality ◽  
Health Related ◽  
Eq Vas

Abstract Introduction/objectives To evaluate changes in health-related quality of life (HRQoL) and productivity following treatment with intravenous (IV) golimumab in patients with psoriatic arthritis (PsA). Methods Patients were randomized to IV golimumab 2 mg/kg (n=241) at Weeks 0, 4, then every 8 weeks (q8w) through Week 52 or placebo (n=239) at Weeks 0, 4, then q8w, with crossover to IV golimumab 2 mg/kg at Weeks 24, 28, then q8w through Week 52. Change from baseline in EuroQol-5 dimension-5 level (EQ-5D-5L) index and visual analog scale (EQ-VAS), daily productivity VAS, and the Work Limitations Questionnaire (WLQ) was assessed. Relationships between these outcomes and disease activity and patient functional capability were evaluated post hoc. Results At Week 8, change from baseline in EQ-5D-5L index (0.14 vs 0.04), EQ-VAS (17.16 vs 3.69), daily productivity VAS (−2.91 vs −0.71), and WLQ productivity loss score (−2.92 vs −0.78) was greater in the golimumab group versus the placebo group, respectively. At Week 52, change from baseline was similar in the golimumab and placebo-crossover groups (EQ-5D-5L index: 0.17 and 0.15; EQ-VAS: 21.61 and 20.84; daily productivity VAS: −2.89 and −3.31; WLQ productivity loss: −4.49 and −3.28, respectively). HRQoL and productivity were generally associated with disease activity and functional capability, with continued association from Week 8 through Week 52. Conclusion IV golimumab resulted in early and sustained improvements in HRQoL and productivity from Week 8 through 1 year in patients with PsA. HRQoL and productivity improvements were associated with improvements in disease activity and patient functional capability. Key Points• In patients with active psoriatic arthritis (PsA), intravenous (IV) golimumab improved health-related quality of life (HRQoL) and productivity as early as 8 weeks and maintained improvement through 1 year• Improvements in HRQoL and productivity outcomes in patients with PsA treated with IV golimumab were associated with improvements in disease activity and patient functional capability outcomes• IV golimumab is an effective treatment option for PsA that can mitigate the negative effects of the disease on HRQoL and productivity

scholarly journals Development and validation of a parent-proxy health-related quality of life survey for Australian First Nations children

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e046007
Author(s):  
Kaley Butten ◽  
Lee Jones ◽  
Peter A Newcombe ◽  
Anne B Chang ◽  
Jeanie K Sheffield ◽  
...  
Keyword(s):  
Quality Of Life ◽  
First Nations ◽  
Convergent Validity ◽  
Related Quality ◽  
Health Related ◽  
Psychological Distress Scale ◽  
Distress Scale ◽  
Kessler Psychological Distress Scale ◽  
Parent Proxy

ObjectiveWithin Australia, Aboriginal and Torres Strait Islander (First Nations) populations perceive health and well-being differently to non-Indigenous Australians. Existing health-related quality of life (HR-QoL) measurement tools do not account for these differences. The objective of this study was to develop and validate a culturally specific parent-proxy HR-QoL measurement tool for First Nations children.DesignScale development was informed by parents/carers of children with a chronic illness and an expert panel. The preliminary 39-item survey was reviewed (n=12) and tested (n=163) with parents/carers of First Nations children aged 0–12 years at baseline with comparative scales: the Kessler Psychological Distress Scale, generic HR-QoL (Paediatric QoL Inventory 4.0, PedsQL4.0) and Spence Children’s Anxiety Scale, and repeated (n=46) 4 weeks later. Exploratory Factor Analysis was used for scale reduction. Reliability and validity were assessed by internal consistency, test–retest, and correlations with comparison scales.ResultsItems within our First Nations-Child Quality of Life (FirstNations-CQoL) were internally consistent with Cronbach’s alpha coefficients of ≥0.7 (quality of life, 0.808; patient experience, 0.880; patient support, 0.768) and overall test–retest reliability was good (r=0.75; 95% CI 0.593 to 0.856). Convergent validity was observed with the PedsQL4.0 with Pearson’s coefficients of r=0.681 (ages 2–4 years); r=0.651 (ages 5–12 years) and with the Kessler Psychological Distress scale (r=−0.513). Divergent validity against the Spence Anxiety Scale was not demonstrated.ConclusionsThe FirstNations-CQoL scale was accepted by the participants, reliable and demonstrated convergent validity with comparison measures. This tool requires further evaluation to determine responsiveness, its minimal important difference and clinical utility.

BMI, disease activity, and health-related quality-of-life in systemic lupus erythematosus

2010 ◽  
Vol 29 (12) ◽  
pp. 1413-1417 ◽  
Author(s):  
Li-Wei Zhu ◽  
Tao Zhang ◽  
Hai-Feng Pan ◽  
Xiang-Pei Li ◽  
Dong-Qing Ye
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Health Related Quality ◽  
Systemic Lupus ◽  
Related Quality ◽  
Health Related
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