612 Assessing the Impact of Burns on Children Aged 5–18 Years: A Narrative Review of Health Outcomes Literature

2020 ◽  
Vol 41 (Supplement_1) ◽  
pp. S150-S150
Author(s):  
Amelia Austen ◽  
Carina Hou ◽  
Khushbu Patel ◽  
Keri Brady ◽  
Gabrielle G Grant ◽  
...  

Abstract Introduction Burn injuries can have major long-term effects on the health and quality of life for children and adolescents. This study narratively reviewed the health outcomes literature focusing on the impact of burn injury for children aged 5–18. Methods Literature targeting pediatric outcomes was reviewed to identify the effects of burns on children aged 5–18 (n=16). Inclusion criteria included studies that focused on the impact of burns on health and quality of life and were age-appropriate for this population. Articles were identified via PubMed, Web of Science, and manual reference checks. Data collected included the outcomes and health domains assessed in each article and the findings of the effects of the burn injury on those specific outcomes. The Preschool LIBRE Conceptual Model served as a ‘domains framework’ to guide the identification of outcomes and health domains. Results Long-term burn-specific outcomes and broad health domains identified were physical functioning (n=9), psychological functioning (n=12), social functioning (n=4), symptoms (n=8), and family (n=7). Some studies exclusively focused on one domain whereas others assessed two domains or more. Subdomains such as upper extremity functioning and functional independence were addressed in the physical functioning domain. Psychological functioning outcomes included subdomains such as emotional health and behavioral problems. Social functioning outcomes evaluated subdomains such as problems with peers and social participation. The symptoms domain addressed post-burn pain and itch. Family outcomes subdomains such as parental satisfaction with appearance and general family functioning were identified. Conclusions Burn-specific outcomes and health domains assessing the effects of burns on children aged 5–18 were identified among 16 studies. There is a need for a comprehensive assessment tool that more precisely measures the impact of burn injury across these domains. This work will inform the development of the School-Aged Life Impact Burn Recovery Evaluation (LIBRE) Computer Adaptive Test (CAT) Profile – a new outcome metric for children and adolescents with burns. Applicability of Research to Practice This review is relevant to researchers and clinicians assessing health outcomes and measuring burn recovery in children aged 5–18.

2017 ◽  
Vol 29 (7) ◽  
pp. 1085-1093 ◽  
Author(s):  
Joel Olayiwola Faronbi ◽  
Adenike Ayobola Olaogun

ABSTRACTBackground:This study investigated the impact of caregivers’ burden on health-related quality of life (HRQoL) among the caregivers of older adults, and tested the predictive effect of burden and socio-demographic factors on HRQoL.Methods:The study employed a cross-sectional design. Three hundred and twenty-five caregivers of older adults with chronic illness were purposively selected. Data were collected using the Zarit Burden Interview and Short Form (SF-36) Health Survey. Data were analyzed descriptively and inferentially.Results:Findings revealed that 59.1% of caregivers experienced severe burden. In measuring the HQRoL, respondents performed poorly in seven domains: Role limitation due to emotional problems (19.69 ± 9.46), Energy/fatigue (43.47 ± 16.46), Emotional well-being, (45.83 ± 13.93), Social functioning (49.09 ± 18.46), Role limitation due to physical function (43.33 ± 10.15), Physical functioning (43.6 ± 18.73), and General health (37.31 ± 12.09). Respondents, however, showed a higher score in the pain domain (56.77 ± 35.79). Furthermore, findings revealed a positive correlation between caregivers’ burden and General health (r = 0.342), Emotional well-being (r = 0.222), and Physical functioning (r = 0.083). Similarly, there is a negative correlation between caregivers’ burden and Social functioning (r = –0.618), Role limitation due to physical activities (r = 0.459), Role limitation due to emotional well-being (r = –0.530), and Energy/fatigue domains (r = –0.509). In addition, burden of caregiving (β=–3.142119, p = 0.000) and age (β=0.612752, p = 0.011) are predictors of the quality of life of caregivers.Discussion:This study concluded that there is a high prevalence of caregivers’ burden resulting in poor HQRoL. In addition, burden and age are predictors of the quality of life of caregivers.


2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Ariane Mamguem Kamga ◽  
Leila Bengrine-Lefevre ◽  
Valérie Quipourt ◽  
Laure Favier ◽  
Ariane Darut-Jouve ◽  
...  

Abstract Background With the growing number of older endometrial cancer (EC) and ovarian cancer (OC) survivors, data on long-term health-related quality of life (HRQoL) became an important issue in the management of older patients. So, the aim of this study was to describe and compare according to age long-term HRQoL, sexual function, and social deprivation of adults with either EC or OC. Methods A cross-sectional study was set up using data from the Côte d’Or gynecological cancer registry. A series of questionnaires assessing HRQoL (SF-12), sexual function (FSFI), anxiety/depression (HADS), social support (SSQ6) and deprivation (EPICES) were offered to women with EC or OC diagnosed between 2006 and 2013. HRQoL, sexual function, anxiety/depression, social support and deprivation scores were generated and compared according to age (< 70 years and ≥ 70 years). Results A total of 145 women with EC (N = 103) and OC (N = 42) participated in this study. Fifty-six percent and 38% of EC and OC survivors respectively were aged 70 and over. Treatment did not differ according to age either in OC or EC. The deprivation level did not differ between older and younger survivors with OC while older survivors with EC were more precarious. The physical HRQoL was more altered in older EC survivors. This deterioration concerned only physical functioning (MD = 24, p = 0.012) for OC survivors while it concerned physical functioning (MD = 30, p < 0.0001), role physical (MD = 22, p = 0.001) and bodily pain (MD = 21, p = 0.001) for EC survivors. Global health (MD = 11, p = 0.011) and role emotional (MD = 12, p = 0.018) were also deteriorated in elderly EC survivors. Sexual function was deteriorated regardless of age and cancer location with a more pronounced deterioration in elderly EC survivors for desire (p = 0.005), arousal (p = 0.015) and orgasm (p = 0.007). Social support, anxiety and depression were not affected by age regardless of location. Conclusion An average 6 years after diagnosis, the impact of cancer on HRQoL is greatest in elderly survivors with either EC or OC.


2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Mads G. Jørgensen ◽  
Navid M. Toyserkani ◽  
Frederik G. Hansen ◽  
Anette Bygum ◽  
Jens A. Sørensen

AbstractThe impact of breast cancer-related lymphedema (BCRL) on long-term quality of life is unknown. The aim of this study was to investigate the impact of BCRL on health-related quality of life (HRQoL) up to 10 years after breast cancer treatment. This regional population-based study enrolled patients treated for breast cancer with axillary lymph node dissection between January 1st 2007 and December 31th 2017. Follow up and assessments of the included patients were conducted between January 2019 and May 2020. The study outcome was HRQoL, evaluated with the Lymphedema Functioning, Disability and Health Questionnaire, the Disabilities of the Arm, Shoulder and Hand Questionnaire and the Short Form (36) Health Survey Questionnaire. Multivariate linear logistic regression models adjusted for confounders provided mean score differences (MDs) with 95% confidence intervals in each HRQoL scale and item. This study enrolled 244 patients with BCRL and 823 patients without BCRL. Patients with BCRL had significantly poorer HRQoL than patients without BCRL in 16 out of 18 HRQoL subscales, for example, in physical function (MDs 27, 95%CI: 24; 30), mental health (MDs 24, 95%CI: 21; 27) and social role functioning (MDs 20, 95%CI: 17; 23). Age, BMI, BCRL severity, hand and dominant arm affection had only minor impact on HRQoL (MDs < 5), suggesting a high degree of inter-individual variation in coping with lymphedema. This study showed that BCRL is associated with long-term impairments in HRQoL, especially affecting the physical and psychosocial domains. Surprisingly, BCRL diagnosis rather than clinical severity drove the largest impairments in HRQoL.


Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Rosie Barnett ◽  
Anita McGrogan ◽  
Matthew Young ◽  
Charlotte Cavill ◽  
Mandy Freeth ◽  
...  

Abstract Background/Aims  Axial spondyloarthritis (axSpA) is a chronic rheumatic condition, characterised by inflammatory back pain - often associated with impaired function and mobility, sleep disturbance, fatigue, and reduced quality of life. Despite the vast advances in pharmacological treatments for axSpA over the last few decades, physical activity and rehabilitation remain vital for effective disease management. At the Royal National Hospital for Rheumatic Diseases in Bath (RNHRD), the 2-week inpatient axSpA rehabilitation programme has been integral to axSpA care since the 1970’s. Prior research has demonstrated significant short-term improvements in spinal mobility (BASMI), function (BASFI) and disease activity (BASDAI) following course attendance. However, the long-term outcomes are yet to be evaluated in this unique cohort. Methods  Since the early 1990’s, clinical measures of spinal mobility, function and disease activity have been routinely collected at the RNHRD at all clinical appointments through administration of the BASMI, BASFI and BASDAI, respectively. Dates of attending the axSpA course and standard clinical and treatment follow-up data were also collected. Multiple linear regression models were used to investigate the impact of course attendance on final reported BASMI, BASDAI and BASFI scores (final score=most recent). Length of follow-up was defined as time between first and last recorded BASMI. Results  Of the 203 patients within the Bath SPARC200 cohort, 77.8% (158/203) had attended at least one rehabilitation course throughout follow-up. 70.0% (140/203) of patients were male. The mean duration of follow-up was 13.5 years (range 0-35 years); 28.1% (57/203) of individuals with 20+ years of follow-up. Course attendance (yes versus no) significantly reduced final BASMI score by 0.84 (p = 0.001, 95%CI -1.31 to -0.37) and final BASDAI score by 0.74 (p = 0.018, 95%CI -1.34 to -0.13). Although course attendance reduced final BASFI by 0.45 (95%CI -1.17 to 0.28), this relationship did not reach significance (p = 0.225). Whilst minimally clinically important difference (MCID) is, to our knowledge, yet to be defined for BASMI, MCIDs were achieved long-term for both BASDAI and BASFI - defined by van der Heijde and colleagues in 2016 as 0.7 and 0.4 for BASDAI and BASFI, respectively. Conclusion  These results provide novel evidence to support the integral role of education, physical activity and rehabilitation in the management of axSpA. Future work should investigate additional outcomes of critical importance to patients and clinicians, such as fatigue, quality of life and work productivity. Furthermore, a greater understanding of the factors that confound these outcomes may provide insights into those patients who may most benefit from attending a 2-week rehabilitation course. In addition to facilitating identification of those patients who may require additional clinical support. Disclosure  R. Barnett: None. A. McGrogan: None. M. Young: None. C. Cavill: None. M. Freeth: None. R. Sengupta: Honoraria; Biogen, Celgene, AbbVie, Novartis, MSD. Grants/research support; Novartis, UCB.


2006 ◽  
Vol 64 (1) ◽  
pp. 20-23 ◽  
Author(s):  
Mara Renata Fernandes ◽  
Luciane B.C. Carvalho ◽  
Gilmar F. Prado

CONTEXT: Hemiparesia changes quality of life of patients with stroke making difficult a normal life. OBJECTIVE: To evaluate the effect of Functional Eletric Orthesis (FEO) applied over the paretic leg in the quality of life of stroke patients. METHOD: The quality of life of 50 stroke patients of Associacao de Assistencia a Crianca Deficiente (AACD) was evaluated with SF-36 questionnaire before and after the treatment with a FEO for rehabilitation of walking. We analyzed data according to gender and affected hemisphere. RESULTS: The average values from all domains of SF-36 improved significantly (p<0.001). Female patients improved more than male in Emotional Domain (p=0.04) and presented a trend to be better regarding Bodily Pain and Social Functioning. Patients with right hemiparesia improved more than those with left hemiparesia (p=0.02). CONCLUSION: FEO over a paretic leg is efficient to improve quality of life of stroke patients, mainly Physical Functioning.


2000 ◽  
Vol 6 (5) ◽  
pp. 338-342
Author(s):  
J HA Arnoldus ◽  
J Killestein ◽  
L EMA Pfennings ◽  
B Jelles ◽  
B MJ Uitdehaag ◽  
...  

Objectives: To determine the quality of life (QoL) of MS patients during the initial 6 months of treatment with interferon-b (IFN-b). Furthermore, to determine whether changes in QoL relate to disability, emotional state, therapeutic expectations or side effect profile. Background: IFN-b has been shown to have beneficial effects on the course of MS. Since the aim of IFN-b treatment is not to cure but to slow down the disease it is important to know how this treatment affects QoL. Surprisingly, the impact of treatment with IFN-b on QoL measures has not been extensively studied so far. Methods: Case report documentation, including EDSS, SF-36 and MADRAS scores, of 51 relapsing-remitting MS patients treated with IFN-b was obtained at baseline and at months 1, 3 and 6. Patients also filled in a form about their expectations of therapy and a questionnaire on side effects. Results: During treatment there was a significant linear trend indicating improvement in the role-physical functioning (RPF) scale of the SF-36 (F1,50=4.9, P=0.032). A transient decrease at month 1 was found in the scale for bodily pain, indicating more experienced pain (F1,50=19.8, P50.001). Subgroup analysis showed that patients with most depressive symptoms on the MADRAS at baseline contributed most to the increase in RPF scores over time (F1,24=5,6 P=0.026). Furthermore, we found associations between adverse event scores and several domains of QoL. Conclusions: Our findings suggest that IFN-b therapy has an impact on QoL of MS patients in that it improves role-physical functioning and transiently worsens experienced bodily pain. QoL during treatment with IFN-b is influenced by depressive symptoms at baseline as well as by treatment-associated side-effects.


2021 ◽  
Vol 42 (Supplement_1) ◽  
pp. S59-S60
Author(s):  
Stephanie A Mason ◽  
Emma L Gause ◽  
Helena Archer ◽  
Stephen H Sibbett ◽  
Radha K Holavanahalli ◽  
...  

Abstract Introduction Individual- and community-level socioeconomic disparities impact overall health and injury incidence, severity, and outcomes. However, the impact of community-level socioeconomic disparities on recovery after burn injury is unknown. We aimed to characterize the association between community-level socioeconomic disparities and health-related quality of life (HRQL) after burn injury. These findings might inform rehabilitation service delivery and policy making at administrative levels. Methods Participants with the NIDILRR Burn Model System who were ≥14 years with a zip code were included. Sociodemographic and injury characteristics and 12-item Short Form Health Survey (SF-12) and Veterans RAND (VR-12) physical (PCS) and mental (MCS) component summary scores 6 months after injury were extracted. Data were deterministically linked by zip code to the Distressed Communities Index (DCI), which combines seven census-derived metrics into a single indicator of economic well-being that ranges from 0 (lowest distress) to 100 (highest distress). Multilevel linear regression models estimated the association between DCI and HRQL. Results The 342 participants were mostly male (239, 69%) had a median age of 48 years (IQR 33–57) and sustained a median burn size of 10% TBSA (IQR 3–28%). More than one-third of participants (117, 34%) lived in a neighborhood within the two most distressed quintiles. After adjusting for age, race/ethnicity, and pre-injury HRQL, increasing neighborhood distress was negatively associated with PCS (ß-0.05, SE 0.02, p=0.01). Age and pre-injury PCS were also significantly associated with 6-month PCS. There was no association between neighborhood distress and 6-month MCS. However, pre-injury MCS was significantly associated with 6-month MCS (0.56, SE 0.07, p&lt; 0.001). Conclusions Neighborhood distress is associated with lower PCS after burn injury but is not associated with MCS. Regardless of neighborhood distress, pre-injury HRQL is significantly associated with both PCS and MCS during recovery.


2017 ◽  
Vol 31 (1) ◽  
pp. 109-138 ◽  
Author(s):  
Mark J. Siedner

Objective: The number of people living with HIV (PLWH) over 50 years old in sub-Saharan Africa is predicted to triple in the coming decades, to 6-10 million. Yet, there is a paucity of data on the determinants of health and quality of life for older PLWH in the region. Methods: A review was undertaken to describe the impact of HIV infection on aging for PLWH in sub-Saharan Africa. Results: We (a) summarize the pathophysiology and epidemiology of aging with HIV in resource-rich settings, and (b) describe how these relationships might differ in sub-Saharan Africa, (c) propose a conceptual framework to describe determinants of quality of life for older PLWH, and (d) suggest priority research areas needed to ensure long-term gains in quality of life for PLWH in the region. Conclusions: Differences in traditional, lifestyle, and envirnomental risk factors, as well as unique features of HIV epidemiology and care delivery appear to substantially alter the contribution of HIV to aging in sub-Saharan Africa. Meanwhile, unique preferences and conceptualizations of quality of life will require novel measurement and intervention tools. An expanded research and public health infrastructure is needed to ensure that gains made in HIV prevention and treamtent are translated into long-term benefits in this region.


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