scholarly journals Changes over time in family members of adults with mild traumatic brain injury

2019 ◽  
Vol 21 (2) ◽  
pp. 154-172 ◽  
Author(s):  
Kelly Jones ◽  
Alice Theadom ◽  
Philip Prah ◽  
Nicola Starkey ◽  
Suzanne Barker-Collo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Well Being ◽  
Anxiety And Depression ◽  
Health Related Quality ◽  
Mild Tbi ◽  
Related Quality ◽  
Health Related ◽  
Over Time

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.

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

2015 ◽  
Author(s):  
John Roger Andersen ◽  
Gerd Karin Natvig ◽  
Kristin Haraldstad ◽  
Turid Skrede ◽  
Eivind Aadland ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Convergent Validity ◽  
Reliability And Validity ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
General Life Satisfaction ◽  
Over Time

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.

scholarly journals Symptom severity and its effect on health-related quality of life over time in patients with pulmonary hypertension: a multisite longitudinal cohort study

2018 ◽  
Vol 5 (1) ◽  
pp. e000263 ◽  
Author(s):  
Janelle Yorke ◽  
Christi Deaton ◽  
Malcolm Campbell ◽  
Linda McGowen ◽  
Paul Sephton ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pulmonary Hypertension ◽  
Cohort Study ◽  
Symptom Severity ◽  
Anxiety And Depression ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Over Time

IntroductionThe aim of this cohort study was to examine health-related quality of life (HRQoL) and symptomatology in patients with pulmonary hypertension (PH) and explore factors that influence its evolution over time.MethodsA prospective longitudinal multisite cohort study. Participants were recruited from specialist UK PH centres and completed a questionnaire pack at baseline, 6, 12 and 18 months to assess HRQoL (emPHasis-10), dyspnoea, fatigue, sleep, anxiety and depression.Results185 patients entered the study at baseline and 126 (68%) completed month 18. At baseline, patients had significant impairment of HRQoL, anxiety, depression, dyspnoea and severe fatigue. No significant changes, apart from a reduction in the Hospital Anxiety and Depression Scale-Anxiety score (P=0.04), were observed over 18 months. Depression and dyspnoea were predictors of HRQoL (P=0.002 and P=0.03, respectively). Oxygen use was also associated with diminished HRQoL and increased symptom severity.ConclusionPatients with PH experience high levels of symptom severity and the negative impact on HRQoL was unchanged over time. The use of oxygen therapy, in particular, was associated with a significant impact on HRQoL. Further study of factors impacting HRQoL and interventions that target a combination of physiological and psychosocial consequences of living with PH are needed.

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

2015 ◽  
Author(s):  
John Roger Andersen ◽  
Gerd Karin Natvig ◽  
Kristin Haraldstad ◽  
Turid Skrede ◽  
Eivind Aadland ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Convergent Validity ◽  
Reliability And Validity ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
General Life Satisfaction ◽  
Over Time

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.

scholarly journals Assessment of Activity Pacing in Relation to Physical Activity and Health-Related Quality of Life in Adults with Multiple Sclerosis: A Foundation for Further Intervention Development

2021 ◽  
Author(s):  
Ulric S. Abonie ◽  
Bregje L. Seves ◽  
Femke Hoekstra ◽  
Trynke Hoekstra ◽  
Lucas H.V. van der Woude ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Multiple Sclerosis ◽  
Intervention Development ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Over Time

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.

scholarly journals Predictors of Poststroke Health-Related Quality of Life in Nigerian Stroke Survivors: A 1-Year Follow-Up Study

2014 ◽  
Vol 2014 ◽  
pp. 1-7 ◽  
Author(s):  
Ashiru Mohammad Hamza ◽  
Nabilla Al-Sadat ◽  
Siew Yim Loh ◽  
Nowrozy Kamar Jahan
Keyword(s):  
Quality Of Life ◽  
Functional Status ◽  
Family Members ◽  
Rehabilitation Service ◽  
Stroke Survivors ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Over Time

This study aims to identify the predictors in the different aspects of the health-related quality of life (HRQoL) and to measure the changes of functional status over time in a cohort of Nigerian stroke survivors. A prospective observational study was conducted in three hospitals of Kano state of Nigeria where stroke survivors receive rehabilitation. The linguistic-validated Hausa versions of the stroke impact scale 3.0, modified Rankin scale, Barthel index and Beck depression inventory scales were used. Paired samplest-test was used to calculate the amount of changes that occur over time and the forward stepwise linear regression model was used to identify the predictors. A total of 233 stroke survivors were surveyed at 6 months, and 93% (217/233) were followed at 1 year after stroke. Functional disabilities were significantly reduced during the recovery phase. Motor impairment, disability, and level of depression were independent predictors of HRQoL in the multivariate regression analysis. The involvement of family members as caregivers is the key factor for those survivors with improved functional status. Thus, to enhance the quality of poststroke life, it is proposed that a holistic stroke rehabilitation service and an active involvement of family members are established at every possible level.

scholarly journals Health-related quality of life after Gamma Knife radiosurgery in patients with 1–10 brain metastases

2020 ◽  
Author(s):  
Eline Verhaak ◽  
Wietske C. M. Schimmel ◽  
Karin Gehring ◽  
Wilco H. M. Emons ◽  
Patrick E. J. Hanssens ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Gamma Knife Radiosurgery ◽  
Well Being ◽  
Health Related Quality ◽  
Patient Level ◽  
Related Quality ◽  
Health Related ◽  
The Individual ◽  
Over Time

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.

scholarly journals Beyond Mortality: Health-Related Quality of Life in Adolescent and Young Adult Patients with Lymphoma: A Longitudinal Study

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 7-8
Author(s):  
Carla Casulo ◽  
Tanzy Love ◽  
Xiang Lu ◽  
Melissa C. Larson ◽  
Kathleen J. Yost ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Research Funding ◽  
Well Being ◽  
Health Related Quality ◽  
Treatment Type ◽  
Related Quality ◽  
Health Related ◽  
Over Time ◽  
Lymphoma Subtype

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.

Effects of MyBFF@school Intervention in Health-related Quality of Life among Overweight and Obese Primary School Children

2019 ◽  
Author(s):  
Zahari Ishak ◽  
Suet Fin Low ◽  
Wan Abdul Hakim Wan Ibrahim ◽  
Abqariyah Yahya ◽  
Fuziah Md. Zain ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary School ◽  
School Children ◽  
Well Being ◽  
School Functioning ◽  
Primary School Children ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

<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>

Features and methods of assessing health-related quality of life and cognitive functions in patients with glial tumors

2020 ◽  
pp. 47-56
Author(s):  
Vera Arsenyeva ◽  
Boris Martynov ◽  
Gennadiy Bulyshchenko ◽  
Dmitriy Svistov ◽  
Boris Gaydar ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Functions ◽  
Well Being ◽  
Health Related Quality ◽  
Number Of Patients ◽  
Related Quality ◽  
Health Related ◽  
Eortc Qlq ◽  
Patients With Epilepsy

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.

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