scholarly journals Is the Kidscreen-27 a valid measure of health-related quality of life in 10-year-old Norwegian children?

Author(s):  
John Roger Andersen ◽  
Gerd Karin Natvig ◽  
Kristin Haraldstad ◽  
Turid Skrede ◽  
Eivind Aadland ◽  
...  

The aim of this study was to investigate the reliability and validity of the Norwegian Kidscreen-27 questionnaire, a measure of generic health-related quality of life, in 10 year-old children. The Kidscreen-27 consists of five domains and was validated in a sample of 56 school children (29 boys). The children completed the questionnaire at three different time points during two consecutive school days. For convergent validity, the study was powered to detect a statistically significant correlation coefficient of 0.4. Cronbach's alpha values ranged from 0.73 to 0.83. Floor effects were all zero and ceiling effects ranged from 1.7% to 23.7%. Intraclass correlation values over time ranged from 0.71 to 0.81. However, some individual variability over time occurred and was illustrated by Bland Altman plots. The domains of physical well-being, psychological well-being and autonomy & parents improved over time (Ps < 0.05), while social support and school environment domains did not. We assessed convergent validity using general life satisfaction scores obtained by administering the Cantrils Ladder. All the Kidscreen-27 domains were significantly associated with general life satisfaction (Spearman rank correlations ranged from 0.29 to 0.59, Ps < 0.05). In conclusion, the Norwegian version of Kidscreen-27 has good reliability and validity.

2015 ◽  
Author(s):  
John Roger Andersen ◽  
Gerd Karin Natvig ◽  
Kristin Haraldstad ◽  
Turid Skrede ◽  
Eivind Aadland ◽  
...  

The aim of this study was to investigate the reliability and validity of the Norwegian Kidscreen-27 questionnaire, a measure of generic health-related quality of life, in 10 year-old children. The Kidscreen-27 consists of five domains and was validated in a sample of 56 school children (29 boys). The children completed the questionnaire at three different time points during two consecutive school days. For convergent validity, the study was powered to detect a statistically significant correlation coefficient of 0.4. Cronbach's alpha values ranged from 0.73 to 0.83. Floor effects were all zero and ceiling effects ranged from 1.7% to 23.7%. Intraclass correlation values over time ranged from 0.71 to 0.81. However, some individual variability over time occurred and was illustrated by Bland Altman plots. The domains of physical well-being, psychological well-being and autonomy & parents improved over time (Ps < 0.05), while social support and school environment domains did not. We assessed convergent validity using general life satisfaction scores obtained by administering the Cantrils Ladder. All the Kidscreen-27 domains were significantly associated with general life satisfaction (Spearman rank correlations ranged from 0.29 to 0.59, Ps < 0.05). In conclusion, the Norwegian version of Kidscreen-27 has good reliability and validity.


Author(s):  
Ulric S. Abonie ◽  
Bregje L. Seves ◽  
Femke Hoekstra ◽  
Trynke Hoekstra ◽  
Lucas H.V. van der Woude ◽  
...  

Abstract Background: Activity pacing is a behavioral strategy for coping with fatigue, optimizing physical activity (PA) levels, and achieving a paced approach to lifestyle and sustainable self-regulated exercise practice to optimize health and well-being. Yet little is known about how activity pacing affects PA and health-related quality of life (HRQOL) while controlling for fatigue and demographic characteristics over time in adults with multiple sclerosis (MS). This study examined the natural use of activity pacing and how it is associated with PA and HRQOL over time in adults with MS. Methods: Sixty-eight adults with MS (mean ± SD age, 45.2 ± 10.9 years) completed questionnaires on their activity pacing, fatigue, PA, and HRQOL 14, 33, and 52 weeks after rehabilitation. Associations between the variables were examined using multilevel models. Results: No associations were found between activity pacing and PA (β = −0.01, P = .89) or between activity pacing and HRQOL (β = −0.15, P = .09). Conclusions: This study provides an initial understanding of how activity pacing relates to PA and HRQOL in people with MS over time and indicates that there is no clear strategy among adults with MS that is successful in improving PA and HRQOL in the short- or long-term. Persons with MS may benefit from goal-directed activity pacing interventions to improve longitudinal engagement in PA, and the present study provides a foundation for further intervention development.


2019 ◽  
Vol 21 (2) ◽  
pp. 154-172 ◽  
Author(s):  
Kelly Jones ◽  
Alice Theadom ◽  
Philip Prah ◽  
Nicola Starkey ◽  
Suzanne Barker-Collo ◽  
...  

AbstractObjective:The impact of traumatic brain injury (TBI) extends beyond the person who was injured. Family caregivers of adults with moderate to severe TBI frequently report increased burden, stress and depression. Few studies have examined the well-being of family members in the mild TBI population despite the latter representing up to 95% of all TBIs.Methods:Five areas of well-being were examined in 99 family members (including parents, partners, siblings, other relatives, adult children, friends or neighbours) of adults (aged ≥16 years) with mild TBI. At 6- and 12-month post-injury, family members completed the Bakas Caregiver Outcomes Scale, Short Form-36 Health Survey, EQ-5D-3L, Hospital Anxiety and Depression Scale and the Pittsburgh Sleep Quality Index. Outcomes and change over time and associated factors were examined.Results:At 6 months, group mean scores for health-related quality of life for mental and physical components and overall health status were similar to the New Zealand (NZ) population. Mean scores for sleep, anxiety and depression were below clinically significant thresholds. From 6 to 12 months, there were significant improvements in Bakas Caregiver Outcomes Scale scores by 2.61 (95% confidence interval: 0.72–4.49), health-related quality of life (mental component) and EQ-5D-3L overall health (P = 0.01). Minimally clinically important differences were observed in overall health, anxiety, health-related quality of life and depression at 12 months. Female family members reported significant improvements in physical health over time, and more positive life changes were reported by those caring for males with TBI.Conclusions:The findings suggest diminished burden over time for family members of adults with mild TBI.


Author(s):  
Eline Verhaak ◽  
Wietske C. M. Schimmel ◽  
Karin Gehring ◽  
Wilco H. M. Emons ◽  
Patrick E. J. Hanssens ◽  
...  

Abstract Purpose Increasingly more patients with multiple (> 4) brain metastases (BM) are being treated with stereotactic radiosurgery (SRS). Preserving patients’ health-related quality of life (HRQoL) is an important treatment goal. The aim of this study was to assess (individual) changes in HRQoL in patients with 1–10 BM over time. Methods A total of 92 patients were assessed before (n = 92) and at 3 (n = 66), 6 (n = 53), and 9 (n = 41) months after Gamma Knife radiosurgery (GKRS), using the Functional Assessment of Cancer Therapy-Brain (FACT-Br). The course of HRQoL was analyzed using linear mixed models. Clinical minimally important differences were used to evaluate individual changes. Results At group level, patients’ physical well-being worsened, whereas emotional well-being improved over 9 months. Scores on other HRQoL subscales did not change significantly. Number (1–3 versus 4–10) and volume (small, medium, and large) of BM did not influence HRQoL over time, except for the subscale additional concerns; medium intracranial tumor volume was associated with less additional concerns. On the individual level as well, physical well-being declined while emotional well-being improved in most patients over 9 months after GKRS. At patient level, however, most patients had both declines as well as improvements in the different HRQoL aspects. Conclusion Our results indicate that even in patients with up to 10 BM, both at group and individual subscale level, aspects of HRQoL remained stable over nine months after GKRS, except for an improvement in emotional well-being and a decline in physical well-being. Nevertheless, HRQoL scores varied considerably at the individual patient level. Trail registration number ClinicalTrials.gov Identifier: NCT02953756, November 3, 2016.


2021 ◽  
Author(s):  
Isis Danyelle D. Custódio ◽  
Fernanda S. Mazzutti ◽  
Mariana T. M. Lima ◽  
Kamila P. de Carvalho ◽  
Paula P. L. Canto ◽  
...  

Abstract Background: Potentially, instruments to manage adverse effects may improve adherence and persistence of treatment, health-related quality of life (HRQL) and breast cancer (BC) outcomes. In this sense, we consider the Cervantes Scale an appropriate option to assess HRQL in BC survivors undergoing adjuvant endocrine therapy with Aromatase Inhibitors (AI), as it is a specific HRQL questionnaire that considers particularities of the perimenopausal and postmenopausal women. The purpose of this study was to analyze the psychometric properties of the 31-item Cervantes Scale (CS-31), 16-item Cervantes Short-Form Scale (CS-16) and 10-item Cervantes Scale (CS-10) and to promote the additional validation for breast cancer (BC) survivors during adjuvant endocrine therapy.Methods: This prospective study included 89 postmenopausal BC survivors in endocrine therapy. The women completed the CS, Functional Assessment of Chronic Illness Therapy - fatigue (FACIT-F) and Hospital Anxiety and Depression Scale (HADS). The internal consistency, convergent validity, responsiveness analyses and known-group validity of CS were evaluated. Also, simple linear regression assessed the predictive capacity of the CS in relation to the FACIT-F.Results: The internal consistency was good (Cronbach's alpha: CS-10=0.76; CS-16=0.80; CS-31=0.89). For convergent validity, in general, we identified negative and strong correlations (r>0.6) with exception of moderate correlation between Social/Family Well-Being of FACIT-F and Sexual (r=-0.453) and Couple (r=-0.436) of CS-31, and weak correlation between Social/Family Well-Being of FACIT-F and Sexual (r=-0.289) and Couple (r=-0.287) of CS-16. A prospective improvement in health-related quality of life (HRQL) were identified, except for domains Sexual and Couple of CS-16/CS-31, as well as FACT-G, Social/Family and Functional Well-Being of FACIT-F. The CSs were able to predict changes in the FACIT-F. Furthermore, women with anxiety and depression by HADS presented worse HRQL by CS (p<0.001).Conclusions: We identified that the CS, highlighting the CS-31, proved to be appropriate for use in routine medical oncology with BC survivors during adjuvant endocrine therapy, although larger studies are needed to confirm these results.


Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 7-8
Author(s):  
Carla Casulo ◽  
Tanzy Love ◽  
Xiang Lu ◽  
Melissa C. Larson ◽  
Kathleen J. Yost ◽  
...  

Introduction: Lymphoma is the most common cancer among adolescents and young adults (AYAs). We examined changes in health-related quality of life (HRQoL) and its predictors in AYA patients (pts). Patients and Methods: We identified AYA pts (aged 18-39) enrolled 2002-2015 in a prospective cohort of pts with newly diagnosed lymphoma from the University of Iowa and Mayo Clinic Molecular Epidemiology Resource, part of the Lymphoma Epidemiology of Outcomes cohort. Enrollment could occur prior to or after initiation of treatment. We measured HRQoL using the Functional Assessment of Cancer Therapy-General (FACT-G) questionnaire at baseline, 12, and 24 months. FACT-G yields five HRQoL domain scores: emotional well-being (EWB), functional WB (FWB), physical WB (PWB), social/family WB (SFWB), and total FACT-G score (a sum of the domains). Pts completing &lt;80% of the FACT-G questions were excluded. Linear mixed models with random subject intercepts estimated changes in FACT-G scores from baseline. The covariates in multivariate analysis were lymphoma subtype, stage, and treatment. Interaction effects between treatment (chemotherapy and/or radiation) and subtype were added to the model. We calculated effect sizes (ES) for the magnitude of mean change scores: 0.2, 0.5, and 0.8 were considered small, medium, and large ESs, respectively. Only ESs for mean score differences with p&lt;0.05 are reported. Results: We identified 467 pts; median age at diagnosis was 30 years, median follow up was 5.9 years. 53% of pts completed the baseline FACT-G assessment pre-treatment, 47% completed after treatment began. Pts assessed after treatment initiation had lower baseline total FACT-G (ES -0.25), FWB (ES -0.27), and PWB scores (-0.46); but baseline EWB was higher in pts assessed prior to treatment (ES 0.20). There was no association between HRQoL scores at baseline or over time and lymphoma subtype, stage, or treatment type, or interactions. Total FACT-G scores modestly improved over time, ES 0.32 at 1 year and ES 0.45 at 2 years after enrollment. EWB, FWB, and PWB also improved over time (ES 0.36, 0.44, 0.30 at 1 year; and 0.49, 0.56, 0.38 at 2 years, respectively). SFWB scores slightly worsened over time (ES -0.24 at 1 year and -0.12 at 2 years). Conclusions: AYA pts with lymphoma had higher baseline total FACT-G scores, FWB and PWB prior to therapy initiation compared to after initiation. HRQoL improved from diagnosis through the first 2 years after diagnosis, except for SFWB. Neither stage, lymphoma subtype, nor treatment type affected change in HRQoL. The lack of improvement in SFWB suggests social interventions and future studies should examine factors impacting SFWB in AYA pts. Disclosures Cohen: Genentech, BMS, Novartis, LAM, BioInvent, LRF, ASH, Astra Zeneca, Seattle Genetics: Research Funding; Janssen, Adicet, Astra Zeneca, Genentech, Aptitude Health, Cellectar, Kite/Gilead, Loxo: Consultancy. Flowers:Leukemia and Lymphoma Society: Membership on an entity's Board of Directors or advisory committees; National Cancer Institute: Research Funding; AbbVie: Consultancy, Research Funding; Cancer Prevention and Research Institute of Texas: Research Funding; Eastern Cooperative Oncology Group: Research Funding; Burroughs Wellcome Fund: Research Funding; Kite: Research Funding; V Foundation: Research Funding; TG Therapeutics: Research Funding; Millennium/Takeda: Consultancy, Research Funding; Acerta: Research Funding; Spectrum: Consultancy; Pharmacyclics/Janssen: Consultancy; Karyopharm: Consultancy; OptumRx: Consultancy; Gilead: Consultancy, Research Funding; Genentech, Inc./F. Hoffmann-La Roche Ltd: Consultancy, Research Funding; Denovo Biopharma: Consultancy; Celgene: Consultancy, Research Funding; BeiGene: Consultancy; Bayer: Consultancy. Cerhan:BMS/Celgene: Research Funding; NanoString: Research Funding.


2019 ◽  
Author(s):  
Zahari Ishak ◽  
Suet Fin Low ◽  
Wan Abdul Hakim Wan Ibrahim ◽  
Abqariyah Yahya ◽  
Fuziah Md. Zain ◽  
...  

<p>Obesity has been shown to impact the health-related quality of life (HRQOL) among children. This study aimed to determine the effectiveness of MyBFF@school program on HRQOL among overweight and obese primary school children in Malaysia. KINDL<sup>R</sup> Questionnaire was used to collect data on their HRQOL before and after the program. ANCOVA was used to analyse the comparison between intervention and control group after 6 months. There are significant effect on family functioning, F(2,1103)=7.452, p<0.05 and school functioning, F(1,1117)=7.103, p<0.05 after the intervention. Effects can also be seen on physical well-being, emotional well-being and friends functioning. The program is effective in improving the HRQOL significantly in two dimensions namely the family and school functioning. In order to achieve greater overall success,social support should be an integral part of the program and stigma on obesity should be managed and reduced by including normal-weight children in the program.</p>


Author(s):  
Vera Arsenyeva ◽  
Boris Martynov ◽  
Gennadiy Bulyshchenko ◽  
Dmitriy Svistov ◽  
Boris Gaydar ◽  
...  

Gliomas make up about 8 cases per 100,000 population and the number of patients with this disease is only increasing. There can be not only various types of neurological deficits among the symptoms, but also personal and emotional changes, that seriously affects the quality of life. The modern model of health care includes not only recovery of the patient’s physical functions, but also his or her psychosocial well-being. In particular, the assessment and study of the characteristics of health-related quality of life, as well as cognitive functions in patients with gliomas, is increasingly recognized as an important criterion when considering the effectiveness of treatment. To date, the features of health related quality of life and cognitive functions of patients with epilepsy and acute cerebral circulation disorders have been studied sufficiently, and, as a result, techniques have been developed that accurately assess the QOL and CF in patients with these diseases. These are QOLIE-31 and QOLIE-AD-48 questionnaires for patients with epilepsy. This is the National Institutes of Health Stroke Scale (NIHSS), Orgogozo stroke scale (OSS), World Federation of Neurological Surgeons (WFNS) scale for the clinical assessment of subarachnoid hemorrhage (SAH) for patients with acute cerebrovascular accident. At the same time, there are no generally accepted methods for assessing quality of life and neurocognitive functions that are sensitive to changes in the condition of patients with gliomas in the early postoperative period by the time of discharge from the hospital. As a result, there is no systematic information on the dynamics of the quality of life of such patients, their neurocognitive functioning. The purpose of this article was to study the literature on QOL and CF in patients affected by neurological and neurosurgical disorders for the further selection of optimal methods for assessing dynamics of the condition of patients with glial brain tumors before and after surgery. At the moment, such requirements are only partially met by the EORTC QLQ-C30 questionnaire and its application EORTC QLQ-BN20.


Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Andrew Smith ◽  
Bishma Saqib ◽  
Rebecca Lee ◽  
Wendy Thomson ◽  
Lis Cordingley

Abstract Background Juvenile idiopathic arthritis (JIA) is a heterogeneous group of arthritic conditions presenting in children and young people, in which physical limitations and associated complications can have detrimental effects on physical and psychosocial wellbeing. This study aims to investigate the impact of living with JIA on different aspects of health-related quality of life (HRQoL) and to explore how this changes over time, using data from the Childhood Arthritis Prospective Study (CAPS). Methods Longitudinal data collected as part of CAPS were analysed. HRQoL was assessed at baseline, 1 year and 3 years’ post-diagnosis using the Child Health Questionnaire (CHQ), a parent-completed form for children from 5 years of age. The CHQ measures physical, emotional and social components of child health status. Raw domain scores were transformed via algorithm into values ranging from 0-100, with higher scores indicating better health status. Mean (standard deviation) and median (interquartile range) for each domain were determined, both for the full cohort and by gender. Differences between median scores at baseline and 3 years were assessed using the Wilcoxon signed-rank test. Mean scores of each domain were visually compared with a reference population sample of healthy children from the United States. Results 184 participants completed the questionnaire at all 3 time points. At baseline, compared to the reference population, children with JIA scored lower in every domain although scores were closer between the 2 groups at 3 years. Median scores improved over time, the exception being the general health perceptions domain which decreased after baseline. Domains with the greatest improvement were physical functioning,“bodily pain and social-physical. The largest changes occurred from baseline to 1 year. Statistically significant differences between baseline and 3-year scores were found for all domains. Domain scores for male and female participants were very similar at baseline, though scores for male participants indicated slightly better health at 1 and 3 years for both physical and psychosocial domains. Conclusion JIA has significant impact on HRQoL, which improves within 3 years of diagnosis with the greatest improvement occurring within the first year. Physical health domains show greater improvement over time than psychosocial domains, although psychosocial scores were generally higher throughout the study. Male participants tend to score slightly higher than female participants in both physical and psychosocial domains after baseline. Further research should explore measurable patient, age or disease-related drivers of HRQoL. Disclosures A. Smith None. B. Saqib None. R. Lee None. W. Thomson None. L. Cordingley None.


2021 ◽  
Vol 11 (6) ◽  
pp. 771
Author(s):  
Fany Chuquilín-Arista ◽  
Tania Álvarez-Avellón ◽  
Manuel Menéndez-González

Parkinson’s disease (PD) is a complex disorder characterized by a wide spectrum of symptoms. Depression and anxiety are common manifestations in PD and may be determinants of health-related quality of life (HRQoL). The objective of this study is to determine the association of depression and anxiety with the dimensions of HRQoL in subjects with PD enrolled in an association of patients. Ninety-five community-based patients with PD diagnosis at different disease stages were studied. HRQoL was assessed using the Parkinson’s Disease Questionnaire (PDQ-39); depression and anxiety were assessed using the Beck Depression Inventory (BDI-II) and the State-Trait Anxiety Inventory (STAI), respectively. Our results showed that depression and anxiety were negatively associated with HRQoL measured by PDSI. Higher motor dysfunction measured by Hoehn and Yahr (H&Y) staging was also associated with worse HRQoL. Depression was the most influential variable in the model. All PDQ-39 dimensions except social support and bodily discomfort were associated with depression. Anxiety was associated with the emotional well-being and bodily discomfort dimensions. These results suggest that physicians should pay attention to the presence of psychiatric symptoms and treat them appropriately.


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