Quality of Life in Parents of Children Born with Esophageal Atresia

2018 ◽  
Vol 29 (04) ◽  
pp. 371-377 ◽  
Author(s):  
Stefanie Witt ◽  
Michaela Dellenmark-Blom ◽  
Jens Dingemann ◽  
Carmen Dingemann ◽  
Benno M. Ure ◽  
...  

Introduction For parents of chronically ill children, the experiences of caregiving are challenged by increased demands and restrictions imposed by their child's disease. Therefore, this study aims to investigate the quality of life (QoL) in parents of children born with esophageal atresia (EA) and to explore associated factors. Materials and Methods Parents of children (2–17 years) with EA recruited from two German pediatric hospitals participated in this cross-sectional study about QoL in EA. Data on QoL, sociodemographic, and clinical characteristics were collected from parents and children. Parental QoL was assessed using the Short-Form 8 questionnaire, containing eight dimensions aggregated to a mental and physical health summary score which was compared with German representative population norms. Results Forty-nine families (47 mothers and 40 fathers) participated in the study. Compared with German population norms, both mothers and fathers showed significantly lower mental component score (MCS) but no differences in physical component score (PCS). Within the study sample, parents of younger children (2–7 years), severe EA, or high school/kindergarten absence had lower MCSs compared with those with older, less severe, and less absent children. Parental female gender was associated with lower MCS as well as lower family income. Conclusion Parents of children with EA reported lower mental health compared with the general population, especially mothers, and parents of young children, with severe EA, and a frequent school/kindergarten absence. This shows that parents may experience substantial emotional burden and highlights the need for psychosocial support for EA parents, especially in the first years.

2008 ◽  
Vol 26 (16) ◽  
pp. 2754-2760 ◽  
Author(s):  
Carrie A. Karvonen-Gutierrez ◽  
David L. Ronis ◽  
Karen E. Fowler ◽  
Jeffrey E. Terrell ◽  
Stephen B. Gruber ◽  
...  

Purpose The purpose of this study was to examine whether quality of life (QOL) scores predict survival among patients with head and neck cancer, controlling for demographic, health behavior, and clinical variables. Patients and Methods A self-administered questionnaire was given to 495 patients being treated for head and neck cancer while they were waiting to be seen for a clinic appointment. Data collected from the survey included demographics, health behaviors, and QOL as measured by Short Form-36 (SF-36) physical and mental component scores and the Head and Neck QOL scores. Clinical measures were collected by chart abstraction. Kaplan-Meier plots and univariate and multivariate Cox proportional hazards models were used to determine the association between QOL scores and survival time. Results After controlling for age, time since diagnosis, marital status, education, tumor site and stage, comorbidities, and smoking, the SF-36 physical component score and three of the four Head and Neck QOL scales (pain, eating, and speech domains) were associated with survival. Controlling for the same variables, the SF-36 mental component score and the emotional domain of the Head and Neck QOL were not associated with survival. Conclusion QOL instruments may be valuable screening tools to identify patients who are at high risk for poor survival. Those with low QOL scores could be followed more closely, with the potential to identify recurrence earlier and perform salvage treatments, thereby possibly improving survival for this group of patients.


Author(s):  
V Chan ◽  
A Nataraj

Background: Cervical spondylotic myelopathy is a degenerative condition with a variable clinical course. We aim to quantify the sources of potential delay in management and understand how the timing of these events may affect quality of life measures. Methods: The Canadian Spine Outcomes Research Network Registry was used to identify patients older than 18 years of age and have received cervical decompression surgery from January 1, 2013 to March 1, 2016. The primary outcome was the Short Form-12 Physical Component Score at 12-month follow-up. Four time groups were identified: 1) duration of symptoms, 2) time awaiting surgical consult, 3) time spent monitoring symptoms, and 4) time awaiting surgery. -Multivariate regression was used for analysis. Results: A total of 208 patients were identified. The mean age was 59.5 years. 61.53% of patients had symptoms for >12 months at initial consult. Mean time awaiting surgical consult, monitoring symptoms, and awaiting surgery was 77.2, 60.9, and 46.9 days, respectively. Time awaiting surgery (β=-0.032, p=0.04) was a significant factor for change in Physical Component Score. Conclusions: We found time awaiting surgery to be a significant factor on PSC score at 12-month follow-up. Increased time awaiting surgery may result in negative impacts on quality of life outcomes.


2017 ◽  
Vol 34 (4) ◽  
pp. 337-343 ◽  
Author(s):  
Gislene C. Erbs ◽  
Marco F. Mastroeni ◽  
Mauro S. L. Pinho ◽  
Álvaro Koenig ◽  
Geonice Sperotto ◽  
...  

Purpose: To assess how preexisting disabling comorbidities (DC) affect the recovery rate of quality of life (QOL) over time in sepsis survivors. Methods: A prospective study was conducted on sepsis survivors who answered the 36-Item Short Form Health Survey (SF-36) 7 days after discharge from the intensive care unit. Subsequent interviews were held at 3, 6, and 12 months. The results of the physical component score (PCS) and mental component score (MCS) of the SF-36 were evaluated. Patients were divided into 2 groups to compare patients with DC (DC group) and without DC (no-DC group). Quantile regression was used to model changes in PCS and MCS between different time points. Results: Seventy-nine sepsis survivors were enrolled. After controlling for baseline age and QOL, the QOL scores were lower among patients with DC than in no-DC patients. The QOL of DC group got worse when compared to no-DC group. Recovery rate of PCS and MCS was higher in the DC group than in the no-DC group (PCS: 20.51 vs 16.96, P < .01; MCS: 19.24 vs 9.66, P < .01). Their baseline QOL was recovered only by 6 months after the sepsis episode. Conclusion: Quality-of-life impairment and its recovery rhythm in patients with sepsis appear to be conditioned by coexisting DC.


2018 ◽  
Vol 6 (8) ◽  
pp. 1410-1412
Author(s):  
Lada Trajceska ◽  
Daniela Mladenovska ◽  
Pavlina Dzekova-Vidimliski ◽  
Aleksandar Sikole

BACKGROUND: There is a general agreement that, besides survival, the quality of life is a highly relevant outcome in the evaluation of treatment in patients with the end-stage renal disease. Moreover, it is very important to determine whether the quality of life impacts survival.AIM: This study aims to assess whether changes or absolute scores of the quality of life (QOL) measurements better predict mortality in dialysis patients.MATERIAL AND METHODS: In a longitudinal study comprising 162 prevalent hemodialysis patients QOL was assessed with the 36-item - Short Form Health Survey Questionnaire (SF-36) at baseline and after 12 months. Patients were followed for 60 months. Mortality risk was assessed using Cox proportional hazards analysis for patients with below and above median levels of both physical and mental QOL component scores (PCS and MCS, respectively).RESULTS: At the beginning of the study the mean Physical Component score was 47.43 ± 26.94 and mean Mental Component Score was slightly higher 50.57 ± 24.39. Comparative analysis of the changes during the first year showed a marked deterioration of all quality of life scores in surviving patients. The 5-point decline for PCS was noted in 39 (24%) patients and 42 (26%) for MCS. In the follow-up period of 60 months, 69 (43%) patients died. In the Cox analysis, mortality was significantly associated with lower PCS: HR = 2.554 [95% confidence interval (CI): 1.533-4.258], (P < 0.000) and lower MCS: 2.452 (95%CI: 1.478-4.065), P < 0.001. The patients who had lower levels of PCS and MCS in the second QOL survey 1 year later, had similarly high mortality risk: 3.570 (95%CI: 1.896-6.727, P < 0.000); 2.972 (95%CI: 1.622-5.490, P < 0.000), respectively. The hazard ratios for mortality across categories for the change of PCS and MCS were not significant. In the multivariate model categorising the first and second scores as predictors and adjusted for age, only the second PCS and MCS score were associated with mortality.CONCLUSION: Low QOL scores are associated with mortality in repeated measurements, but only the more recent overwhelmed the power of the decline.


Nutrients ◽  
2021 ◽  
Vol 13 (3) ◽  
pp. 1023
Author(s):  
Nobuhiko Narukawa ◽  
Hiromasa Tsujiguchi ◽  
Akinori Hara ◽  
Sakae Miyagi ◽  
Takayuki Kannon ◽  
...  

Although epidemiological studies revealed a relationship between psychosocial states, such as depressive symptoms, and nutritional intake, limited information is currently available on vitamin intake. The Short Form-36 Health Survey (SF-36) is not limited to a specific disease, it is constructed based on a universal concept of health and is used to evaluate the Quality of life (QOL). A three-component scoring method was developed for “Physical component score (PCS)”, “Mental component score (MCS)”, and “Role/social score (RCS)”. Collectively, these summary scores are called the “QOL summary score”, which is regarded as a more detailed health summary score. In the present study, we aimed at epidemiologically examine the relationship between vitamin intake and QOL in middle-aged and elderly population in 3162 residents in Japan. In women, a multiple regression analysis showed a positive correlation between all vitamin intake and PCS scores, and between vitamin B6, folic acid, vitamin C, and MCS scores. In consideration of depression as MCS of SF-36 and chronic pain as PCS, an insufficient vitamin intake may affect QOL in women; however, a causal relationship has not yet been demonstrated.


2018 ◽  
Vol 25 (4) ◽  
pp. 140-151
Author(s):  
Markus A. Wirtz ◽  
Matthias Morfeld ◽  
Elmar Brähler ◽  
Andreas Hinz ◽  
Heide Glaesmer

Abstract. The association between health-related quality of life (HRQoL; Short-Form Health Survey-12; SF-12) and patient-reported morbidity-related symptoms measured by the Patient Health Questionnaire-15 (PHQ-15) is analyzed in a representative sample of older people in the general German population. Data from 1,659 people aged 60 to 85 years were obtained. Latent class analysis identified six classes of patients, which optimally categorize clusters of physical symptoms the participants reported: musculoskeletal impairments (39.8%), healthy (25.7%), musculoskeletal and respiratory/cardiac impairments (12.8%), musculoskeletal and respiratory impairments, along with bowel and digestion problems (12.9%), general impairments (4.9%), and general impairments with no bowel and digestion problems (4.8%). The participants’ SF-12 Physical Health Scores (η2 = .39) and their Mental Health Scores (η2 = .28) are highly associated with these latent classes. These associations remain virtually identical after controlling for age. The results provide evidence that profiles of patient-reported physical impairments correspond strongly with reduced HRQoL independently from aging processes.


Pituitary ◽  
2021 ◽  
Author(s):  
Muhammad Fahad Arshad ◽  
Oluwafunto Ogunleye ◽  
Richard Ross ◽  
Miguel Debono

Abstract Purpose There is no consensus on quality of life (QOL) in patients with acromegaly requiring medical treatment after surgery compared with those achieving remission by surgery alone. Methods QuaLAT is a cross-sectional study comparing QOL in surgery-only treated acromegaly patients versus those requiring medical treatment post-surgery. Patients attending clinics were identified and divided into—Group 1: patients who had surgery only and were in biochemical remission, Group 2: all patients on medical treatment post-surgery, Group 3: patients from Group 2 with biochemical control. Participants were asked to fill three questionnaires; Acromegaly Quality of Life Questionnaire (ACROQOL), 36-Item Short Form Survey (SF36), and Fatigue Severity Scale (FSS). Results There were 32 patients in Group 1 and 25 in Group 2. There was no difference in QOL scores between groups 1 and 2, as measured by ACROQOL (mean difference [MD] = − 2.5, 95% CI − 16.6 to 11.6; p = 0.72), SF36v2 [Physical component score (PCS) MD = − 4.9, 95% CI − 10.9 to 1.2; p = 0.12; mental component score MD = − 3.0, 95% CI − 10.5 to 4.4; p = 0.44], or FSS (MD = − 0.004, 95% CI − 1.14 to 1.33; p = 0.1). Comparison between groups 1 and 3 however showed that PCS (and 3 subdomains) was significantly better in group 3 (MD = − 8.3, 95% CI − 14.8 to -1.8; p = 0.01). All three QOL scores were lower when compared with healthy controls. Conclusions Medical treatment not only achieves a QOL comparable to surgery, it may also be associated with better QOL in physical subdomains. When compared with healthy controls, QOL remains worse in treated acromegaly patients compared to controls.


Open Heart ◽  
2021 ◽  
Vol 8 (1) ◽  
pp. e001569
Author(s):  
Fredrike Blokzijl ◽  
Frederik Keus ◽  
Saskia Houterman ◽  
Willem Dieperink ◽  
Iwan C C van der Horst ◽  
...  

ObjectiveThis study aimed to explore the influence of coronary artery bypass grafting (CABG) on both postoperative cognitive dysfunction and quality of life (QoL) and the association between the two patient-related outcomes.MethodsIn a prospective, observational cohort study, patients with elective, isolated CABG were included. Cognitive function was assessed using the Cogstate computerised cognitive test battery preoperatively, 3 days and 6 months after surgery. QoL was measured preoperatively and at 6 months using the RAND-36 questionnaire including the Physical Component Score (PCS) and the Mental Component Score (MCS). Regression analysis, with adjustment for confounders, was used to evaluate the association between postoperative cognitive dysfunction and QoL.ResultsA total of 142 patients were included in the study. Evidence of persistent cognitive dysfunction was observed in 33% of patients after 6 months. At 6 months, the PCS had improved in 59% and decreased in 21% of patients, and the MCS increased in 49% and decreased in 29%. Postoperative cognitive changes were not associated with QoL scores.ConclusionsPostoperative cognitive dysfunction and decreased QoL are common 6 months after surgery, although cognitive function and QoL were found to have improved in many patients at 6 months of follow-up. Impaired cognitive function is not associated with impaired QoL at 6 months.Trial registration numberNCT03774342.


Author(s):  
Sathesh Kumar Sukumaran ◽  
Poojitha Devi G

<p>ABSTRACT<br />Objective: Patient counseling can scientifically improve the physical and mental symptoms of certain diseases that could be a relief to the patient.<br />Non-pharmacological approaches could be an alternative to the drug therapy. Health issues affecting the quality of life (QoL) are to be studied to<br />understand the patient’s physical, mental, emotional, and social functioning.<br />Methods: The present study involves prospective analysis of QoL in men and women with arthritis. The methodology involves the collection and<br />documentation of general information of the patient including personal history, family background, clinical findings, investigations, and medical illness<br />associated with arthritis. Further, the QoL is documented using a specific questionnaire designed to assess the impact of arthritis and their complications.<br />Results: It can be seen that there is no significant changes in the physical and mental component score (MCS) in between the type of arthritis, but<br />there is an extremely significant (p&lt;0.05) values were obtained when compared between pre- and post-counseling phases of physical and MCS.<br />Conclusion: Patients counseling plays a major role in the management of signs and symptoms among patients with arthritis. The non-pharmacological<br />method is also be used for the management of arthritis.<br />Keywords: Quality of life, Arthritis, Patient counseling, Questionnaire, Physical component score, Mental component score.</p>


2009 ◽  
Vol 36 (4) ◽  
pp. 768-772 ◽  
Author(s):  
MARIE HUDSON ◽  
BRETT D. THOMBS ◽  
RUSSELL STEELE ◽  
PANTELIS PANOPALIS ◽  
EVAN NEWTON ◽  
...  

Objective.Systemic sclerosis (SSc) affects multiple physical, psychological, and social domains and is associated with impaired health-related quality of life (HRQOL).We compared the HRQOL of SSc patients with individuals in the general population and patients with other common chronic diseases.Methods.HRQOL of SSc patients in the Canadian Scleroderma Research Group registry was measured using version 2 of the Medical Outcomes Trust Short Form-36 (SF-36). Results were compared to US general population norms and scores reported for patients with other common chronic diseases, namely heart disease, lung disease, hypertension, diabetes, and depression.Results.SF-36 scores were available for 504 SSc patients (86% women, mean age 56 yrs, mean disease duration since onset of first non-Raynaud’s manifestation of SSc 11 yrs). The greatest impairment in SF-36 subscale scores appeared to be in the physical functioning, general health, and role physical domains. SF-36 subscale and summary scores in SSc were significantly worse compared to US general population norms for women of similar ages, except for mental health and mental component summary score, which were not significantly different, and were generally comparable to or worse than the scores of patients with other common chronic conditions.Conclusion.HRQOL of patients with SSc is significantly impaired compared to that of the general population and is comparable to or worse than that of patients with other common chronic conditions.


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