scholarly journals Psychological Effects and Parent Quality of Life in Children of Vision Loss for Uveitis

Author(s):  
Silvana Guerriero ◽  
Roberta Palmieri ◽  
Francesco Craig ◽  
Francesco La Torre ◽  
Valeria Albano ◽  
...  

Abstract Purpose: Juvenile idiopathic arthritis (JIA) is a chronic inflammatory disease common in children and young adults. Uveitis is most frequent serious extra-articular JIA manifestation and can lead to severe ocular complications, vision loss and permanent blindness. The aim of this study is to evaluate the quality of life and the psychological effects of JIA associated with uveitis (JIA-U) on these children and to explore the effect of a child’s chronic illness on parents. Materials and Methods: 30 children and adolescents with active uveitis referred to Unit of Ophthalmology, Giovanni XXIII Hospital of Bari and 30 subjects of control group were enrolled with their parents. Informed consent was signed by the subjects and four questionnaires were administered: Child Behaviour Checklist (CBCL), Parent Stress Index in short form (PSI), Pediatric Quality of Life Inventory (PedsQL) and Coping Inventory for Stressful Situations (CISS). Data were collected from February 2020 to December 2020.Results: The analysis of the emotional and behavioral problems of children (CBCL) with JIA associated with uveitis, the rate of parent’s stress (PSI) and the strategies of coping with the stress (CISS) of their families did not show statistically significant differences between the clinical sample and the control group. Significant differences were observed in quality of life between the two groups. In particular, significant differences (p<0,05) were found in all domains of PedsQL: physical functioning (PF), emotional functioning (EF), social functioning (SF) and school functioning (ScF). Conclusions: This study shows a worse quality of life in children with JIA-U. Several ocular complications, eye examinations and the rigor of long-term treatment influence health-related quality of life in these children. This study suggests the importance of helping children with uveitis cope with chronic disease and may improve outcome. Inclusion of a screening related quality of life should be considered in management of children with JIA-U. Further studies are needed to evaluate the long-term impact on psychological health in these children.

Circulation ◽  
2021 ◽  
Vol 144 (Suppl_2) ◽  
Author(s):  
Brian A Haskins ◽  
Ziad Nehme ◽  
Emily Andrew ◽  
Stephen Bernard ◽  
Peter Cameron ◽  
...  

Introduction: To assess the long-term functional recovery and health related quality-of-life (HRQoL) outcomes for out-of-hospital cardiac arrest (OHCA) survivors stratified by shock provider. Methods: We included adult OHCA in initial shockable rhythms between 2010-2019. Those surviving to 12 months post arrest were invited to participate in telephone interviews to identify functional recovery and HRQoL outcomes, using the following assessment tools, Glasgow Outcome Scale-Extended (GOS-E), EuroQol-5D (EQ-5D), and 12-Item Short Form (SF-12). Results: Of the 1,581 patients surviving to 12 months, 1,325 (85.5%) responded to the interviews, of these, 227 (17.1%) and 144 (10.9%) were initially shocked by bystanders and first responders, respectively. A higher proportion of patients shocked by bystanders were located in public (p<0.001), received bystander CPR (p<0.001) and received initial defibrillation faster from time of collapse (P<0.001). Survivors receiving bystander defibrillation reported higher rates of living at home without care (p=0.004), upper good recovery (GOS-E) (p=0.008) and EQ-5D index score of 1 (perfect health) (p=0.023). After adjustment, bystander defibrillation was associated with a 64% increase in the odds of an EQ-5D current Visual Analogue Scale ≥ 80 (AOR 1.64, 95%CI: 1.17-2.31; p=0.004) and a 45% increase in the odds of a good functional recovery (GOS-E ≥ 7) (AOR 1.45, 95% CI: 1.02-2.06; p=0.037), than those initially shocked by paramedics. No improvement in adjusted outcomes were observed for survivors initially defibrillated by first responders. Conclusion: Patients receiving bystander defibrillation reported better functional recovery and HRQol outcomes at 12 months compared to those defibrillated by first responders and paramedics.


2009 ◽  
Vol 37 (4) ◽  
pp. 1108-1114 ◽  
Author(s):  
Y Chai ◽  
Y Shao ◽  
S Lin ◽  
K-Y Xiong ◽  
W-S Chen ◽  
...  

The potential impact of the surgical correction of strabismus on vision-related quality of life (VRQOL) and the symptoms of anxiety and depression in children with strabismus remain unclear. The present study included 60 children with strabismus: 30 with heterophoria and 30 with heterotropia. A healthy age-and gender-matched control group ( n = 60) was also recruited. The psychological instruments that were used were the short-form 25-item National Eye Institute Visual Functioning Questionnaire (NEI-VFQ-25) and the Hospital Anxiety and Depression Scale (HADS). The results demonstrated that eight of the 12 NEI-VFQ-25 subscales were significantly impaired in children with strabismus compared with matched controls. Compared with pre-operative values, significant improvements were noted after surgery in the NEI-VFQ-25 summary score, and the anxiety and depression scores. This study demonstrated that the NEI-VFQ-25 instrument can be used in strabismus children and that surgical interventions can improve VRQOL, anxiety and depression in strabismus patients.


2009 ◽  
Vol 27 (28) ◽  
pp. 4664-4670 ◽  
Author(s):  
Robert S. Krouse ◽  
Lisa J. Herrinton ◽  
Marcia Grant ◽  
Christopher S. Wendel ◽  
Sylvan B. Green ◽  
...  

Purpose Intestinal stomas can pose significant challenges for long-term (≥ 5 years) rectal cancer (RC) survivors. Specifying common challenges and sociodemographic or clinical differences will further the development of tailored interventions to improve health-related quality of life (HRQOL). Patients and Methods This was a matched cross-sectional study of long-term RC survivors conducted in three Kaiser Permanente regions. The mailed questionnaire included the modified City of Hope Quality of Life-Ostomy (mCOH-QOL-Ostomy) and Medical Outcomes Study 36-Item Short-Form Health Survey, version 2 (SF-36v2). Groups surveyed were permanent ostomates (cases) and those who did not require an ostomy (controls). RC survivors were matched on sex, age, and time since diagnosis. Comparisons between groups used regression analysis with adjustment for age, comorbidity score, history of radiation therapy, income, and work status. Results Response rate was 54% (491 of 909). Cases and controls had similar demographic characteristics. On the basis of the mCOH-QOL-Ostomy, both male and female cases had significantly worse social well-being compared with controls, while only female cases reported significantly worse overall HRQOL and psychological well-being. For younger females (< age 75 years), ostomy had a greater impact on physical well-being compared with older females. Based on the SF-36v2, statistically significant and meaningful differences between female cases and controls were observed for seven of the eight scales and on the physical and mental component summary scores. Conclusion Men and women report a different profile of challenges, suggesting the need for targeted or sex-specific interventions to improve HRQOL in this population. This may include focus on physical HRQOL for female ostomy survivors younger than age 75.


2017 ◽  
Vol 35 (6_suppl) ◽  
pp. 268-268
Author(s):  
Peter Hammerer ◽  
Lukas Manka ◽  
Manfred Wirth

268 Background: LHRH analogs are the gold standard for treatment of patients with hormone-sensitive advanced PCa. In this study, we investigated the quality of life (QoL) of PCa patients under long-term treatment with leuprorelin acetate in microcapsules (1, 3, and 6 month depot formulation) for up to 19.8 years. Methods: Observational and retrospective analysis of data from 536 PCa patients treated with leuproreline and 116 patients of a control group (CG, ≥ 77 years of age, > 5 years urological treatment, no cancer, no ADT). Data was collected in 30 German office based urological practices using EORTC questionnaires QLQ-C30 and QLQ-PR25. Results: Mean treatment duration was 8.6 years (range: 4.5 - 19.8 years). Mean age ± SD of PCa patients (79.6 ± 6.3 years) was comparable to CG (80.5 ± 3.1 years), as were body height, weight, BMI, and Karnofsky-Index (88.0 ± 12.7 vs. 88.4 ± 12.0). The general health status (QLQ-C30) was comparable for PCa patients vs. CG: 64.6 ± 20.5 vs. 66.8 ± 20.3; p = 0.3117. Marginal differences were observed regarding physical functioning (73.2 ± 23.1 vs. 78.1 ± 21.0; p = 0.0402) and role functioning (70.6 ± 30.4 vs. 74.4 ± 25.7; p = 0.1648). PCa patients rated fatigue (33.6 ± 25.1 vs. 28.8 ± 23.3; p = 0.0629), dyspnoea (24.0 ± 28.5 vs. 19.6 ± 26.9; p = 0.1307), and insomnia (28.9 ± 32.6 vs. 23.7 ± 27.2; p = 0.0751) slightly worse than CG. As assessed by QLQ-PR25, PCa patients scored lower on sexual activity (12.0 ± 20.6 vs. 23.7 ± 25.7; p < 0.0001) and sexual function (43.3 ± 25.8 vs. 55.9 ± 27.0; p = 0.0067) compared to CG. PCa patients had less urinary tract symptoms (28.2 ± 19.8 vs. 31.2 ± 19.2; p = 0.1472) but stronger symptoms of androgen deprivation (21.4 ± 17.3 vs. 10.8 ± 13.2; p < 0.0001), and they had a higher need of incontinence aids (29.6 ± 34.2 vs. 16.7 ± 20.5; p = 0.0056) – however, 136 of the 536 PCa patients had a prostatectomy. Conclusions: In this study, PCa patients treated with leuprorelin for up to 19.8 years (8.6 years on average) had an overall QoL comparable to an age-matched control group. As expected, sexual activity and sexual function were lower in PCa patients under ADT. Overall, treatment with leuprorelin is a well-tolerated long-term therapy for patients with hormone-sensitive advanced PCa. Clinical trial information: ENA E005(a) / DE-N-LEU-019(a).


2015 ◽  
Vol 122 (4) ◽  
pp. 833-842 ◽  
Author(s):  
Matthew L. Carlson ◽  
Oystein Vesterli Tveiten ◽  
Colin L. Driscoll ◽  
Frederik K. Goplen ◽  
Brian A. Neff ◽  
...  

OBJECT The optimal treatment for sporadic vestibular schwannoma (VS) is highly controversial. To date, the majority of studies comparing treatment modalities have focused on a narrow scope of technical outcomes including facial function, hearing status, and tumor control. Very few publications have investigated health-related quality of life (HRQOL) differences between individual treatment groups, and none have used a disease-specific HRQOL instrument. METHODS All patients with sporadic small- to medium-sized VSs who underwent primary microsurgery, stereotactic radiosurgery (SRS), or observation between 1998 and 2008 were identified. Subjects were surveyed via postal questionnaire using the 36-Item Short Form Health Survey (SF-36), the 10-item Patient-Reported Outcomes Measurement Information System short form (PROMIS-10), the Glasgow Benefit Inventory (GBI), and the Penn Acoustic Neuroma Quality-of-Life (PANQOL) scale. Additionally, a pool of general population adults was surveyed, providing a nontumor control group for comparison. RESULTS A total of 642 respondents were analyzed. The overall response rate for patients with VS was 79%, and the mean time interval between treatment and survey was 7.7 years. Using multivariate regression, there were no statistically significant differences between management groups with respect to the PROMIS-10 physical or mental health dimensions, the SF-36 Physical or Mental Component Summary scores, or the PANQOL general, anxiety, hearing, or energy subdomains. Patients who underwent SRS or observation reported a better total PANQOL score and higher PANQOL facial, balance, and pain subdomain scores than the microsurgical cohort (p < 0.02). The differences in scores between the nontumor control group and patients with VS were greater than differences observed between individual treatment groups for the majority of measures. CONCLUSIONS The differences in HRQOL outcomes following SRS, observation, and microsurgery for VS are small. Notably, the diagnosis of VS rather than treatment strategy most significantly impacts quality of life. Understanding that a large number of VSs do not grow following discovery, and that intervention does not confer a long-term HRQOL advantage, small- and medium-sized VS should be initially observed, while intervention should be reserved for patients with unequivocal tumor growth or intractable symptoms that are amenable to treatment. Future studies assessing HRQOL in VS patients should prioritize use of validated disease-specific measures, such as the PANQOL, given the significant limitations of generic instruments in distinguishing between treatment groups and tumor versus nontumor subjects.


RSBO ◽  
2017 ◽  
Vol 13 (3) ◽  
pp. 163
Author(s):  
Monalisa Klingenfuss Klingenfuss ◽  
Denise Piotto Leonardi ◽  
Estela Maris Losso ◽  
Tatiana Miranda Deliberador ◽  
Bárbara Pick Ornaghi

The success of oral reabilitation treatment depend on the re-establishment of the masticatory function and oral comfort of the patient. Objective: To evaluate the oral health-related quality of life (OHRQoL) of patients undergoing rehabilitation with implant-supported prostheses by Oral Health Impact Profile - short form questionnaire (OHIP-14) and a questionnaire associated to the Visual Analog Scale (VAS). Material and methods: Fourteen patients requiring implant-supported prostheses on anterior region were asked to complete the OHIP-14 before, 1 and 3 months, and the VAS questionnaire, 1 and 3 months after the prosthesis installation (sample group). Moreover, fourteen complete dentate patients were asked to complete the OHIP-14 (control group). For each OHIP-14 category, the sample group’s answers were compared between the evaluation periods by the Kruskal-Wallis test, and to the control group’s answers by the U-test. The answers of the questionnaire associated to VAS were compared between the evaluation periods by t-test ( α=0.05). Results: For OHIP-14, there was no statistical difference between the answers after 1 and 3 months; however, there was difference among the answers of baseline, and 1 and 3 months after the prostheses installation, excepted for functional limitation. Comparing to the control group, before the prostheses installation, there was statistical difference for functional limitation, physical pain, psychological discomfort, physical and psychological disability; and, there was no difference after 3 months of prostheses installation. For the questionnaire associated to the VAS, there was no statistical difference between the responses for both evaluation periods, excepted for the prosthesis’ comfort and stability. Conclusion: The rehabilitated patients showed a significant improvement in function, aesthetics, self-esteem, and the quality of life.


2012 ◽  
Vol 20 (2) ◽  
pp. 346-353 ◽  
Author(s):  
Lígia da Silva Leroy ◽  
Maria Helena Baena de Moraes Lopes

This case-control study evaluated whether UI in the puerperium compromises the health-related quality of life (HRQoL) and if so, in which aspects. The study included 344 women (77 case group and 267 control group) up to 90 days postpartum, who were attended the Obstetrics Outpatient Clinic of a public teaching hospital, for the postpartum follow up consultation. A socio-demographic and clinical data questionnaire formulated and validated for the study, the International Consultation on Incontinence Questionnaire - Short-Form (ICIQ-SF), the King's Health Questionnaire (KHQ) and the Medical Outcomes Study 36 - Item Short Form Health Survey (SF-36), were applied. The mean score of the ICIQ-SF was 13.9 (SD: 3.7). The case group presented high mean scores in the domains Impact of the Incontinence, Emotions, Daily Activity Limitations and Physical Limitations, of the KHQ. The groups differed significantly in the domains Physical Aspects, Pain, General Health Status, Vitality, Social Aspects and Mental Health of the SF-36. It is concluded that UI significantly affects the physical and mental health of puerperae.


2013 ◽  
Vol 9 (1) ◽  
pp. 120-124 ◽  
Author(s):  
MG Carta ◽  
V Ruggiero ◽  
F Sancassiani ◽  
F Cutrano ◽  
AR Manca ◽  
...  

Background: Antidepressant (AD) drugs are effective in the short term treatment of fibromyalgia (FM). It may be useful to study the long-term impact of AD on patients with FM. Methods: One-year follow-up study on 23 females with FM divided into groups on AD (ADg-N=7), and not taking AD (NADg-N=11). Evaluation at t1 and at the end (t2) with the Fibromyalgia Impact Questionnaire (FIQ); at t2 with: SCID-IV; Mood Disorder Questionnaire (MDQ); Short Form-12; Hamilton Depression Rating Scale (HAM-D); Functioning Assessment Short Test (FAST) Results: After a year the AD group showed a worst impact of the disease by FIQ (p=0.017), worsened quality of life by SF-12 (p<0.01), and disability linked to bipolar symptoms by FAST (p=0.05). About 40% of the sample was screened positive at MDQ without difference in the two groups. The patients who recovered from a depressive episode did not differ between ADg and NADg (20% vs 33.3%), and were fewer than expected from the literature (40-60%). The HAM-D score at the end of the trial was worse in the ADg (p<0.03). Limitations: Observational research on few patients, not specifically designed to test the hypothesis. The results have a heuristic value only. Discussion: The results should be read in the light of the high prevalence of patients screened positive for Bipolar Disorders and of the well-known poor response of the mood symptoms to antidepressants in Bipolar Depression. The deterioration in the long-term management of FM patients following AD treatments suggests the need for new and robust studies.


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