Parent Reports of Quality of Life for Pediatric Patients With Cancer With No Realistic Chance of Cure

Purpose To compare quality of life of children with cancer with no reasonable chance of cure reported by parents 6 months or fewer versus more than 6 months before death. Patients and Methods This cross-sectional study included children between the ages of 2 and 18 years with cancer and no reasonable chance of cure at The Hospital for Sick Children, Toronto, Ontario, Canada. Parents reported quality of life on behalf of their children. Outcomes were the PedsQL 4.0 Generic Core Scales, Acute Cancer Module, and Multidimensional Fatigue Scale. Results Seventy-three parents of children participated. Compared with children who survived more than 6 months (n = 43), those who died at 6 months or fewer (n = 30) had significantly worse physical health (mean difference, 15.9; 95% CI, 1.8 to 30.0; P = .028), more pain and hurt (mean difference, 15.5; 95% CI, 0.9 to 30.0; P = .037), and worse general fatigue (mean difference, 15.8; 95% CI, 2.4 to 29.1; P = .021) and sleep/rest fatigue (mean difference, 16.0; 95% CI, 3.5 to 28.5; P = .013). Among the entire cohort, those with leukemia/lymphoma had worse physical and psychosocial quality of life compared with those with solid or brain tumors. Recent stem-cell transplantation was associated with worse psychosocial health. Conclusion Parents of children with cancer reported worse physical health, pain, and fatigue proximal to death. Those with leukemia/lymphoma were at higher risk for impaired quality of life. This knowledge can help in the design of targeted interventions to improve quality of life for children dying as a result of cancer.

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Quality of life evaluation in patients with mucopolysaccharidosis using PedsQL

Journal of Child Health Care ◽

10.1177/1367493518787319 ◽

2018 ◽

Vol 23 (2) ◽

pp. 278-285 ◽

Cited By ~ 1

Author(s):

Marcos Almeida Matos ◽

Fábio Ferri-de-Barros ◽

Roberto Guarniero

Keyword(s):

Quality Of Life ◽

Physical Health ◽

Internal Consistency ◽

Psychosocial Health ◽

Cross Sectional Study ◽

Cross Sectional ◽

Health Domain ◽

Pedsql 4.0 ◽

Physical Health Domain

Mucopolysaccharidosis (MPS) is a rare and neglected disorder. Only a few studies to date have focused on humanistic impacts of the disease, particularly health-related quality of life (HRQOL). The objective of our research is to (1) evaluate HRQOL in Brazilian patients with MPS and (2) assess the validity of the PedsQL 4.0 Generic Core Scales (PedsQL) in this specific disease. We performed an analytical cross-sectional study using the Brazilian Portuguese version of the PedsQL in 22 patients with MPS between the ages of 8 and 21. With regard to assessing the validity of the PedsQL for MPS, we evaluated internal consistency using Cronbach’s α coefficient and reliability using the Spearman–Brown estimate of agreement. The mean HRQOL score in our sample was 63.6 points. The worst score was obtained in the Psychosocial domain (61.9) on account of interference with school (56.1), while the Physical Health domain had the highest score (67.6). The total PedsQL internal consistency was .764 points. The Physical Health domain obtained the highest internal consistency (.914), whereas the Psychosocial Health domain obtained the lowest one (.754). MPS was demonstrated to decrease HRQOL, and PedsQL seems to be a valid instrument to perform this kind of analysis.

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Quality of Life in Chilean Transgender Children and Adolescents

Hormone Research in Paediatrics ◽

10.1159/000520606 ◽

2021 ◽

Author(s):

Carolina Mendoza ◽

Helena Poggi ◽

Mónica Flores ◽

Cristóbal Morales ◽

Alejandro Martínez-Aguayo

Keyword(s):

Quality Of Life ◽

Children And Adolescents ◽

School Environment ◽

Social Acceptance ◽

Well Being ◽

Psychosocial Health ◽

Cross Sectional Study ◽

Cross Sectional ◽

Psychological Well Being

Introduction: Transgender (TG) children and adolescents experience problems in school as well as with family and social relationships that can adversely affect their physical and psychosocial health and impair their quality of life (QOL). This study aims to assess health-related quality of life (HRQOL) in TG children. Methods: We performed a cross-sectional study comparing HRQoL in gender nonconforming (Trans) and gender conforming (CIS) children and adolescents using the Spanish version of KIDSCREEN-52 in 120 Chilean Trans and CIS children (aged 8–18 years) and their parents. All scores were standardized according to the KIDSCREEN manual. Results: Among the 100 questionnaires answered, 38 corresponded to children and adolescents aged 8.4–18 years. Twenty-one of them were TG (71% trans males) and 17 were CIS (76% females). Sixty-two parents answered the questionnaires: 33 from families of TG children (PTrans) and 29 from families of CIS children (PCis). Trans children had lower HRQOL scores in all domains compared to CIS children. The lowest-scoring domains for TG children were “Moods and Emotions”, “Psychological Well-Being” and “Social Acceptance”, and the highest-scoring domain was “School Environment”. The PTrans group had significantly higher scores than the Trans group for 3 of the 10 domains: “Psychological Well-Being”, “Moods and Emotions”, and “Parent Relations and Home Life”. Conclusion: Our results revealed that TG children and adolescents have lower QOL than their CIS counterparts, especially regarding items related to mental health. Furthermore, their parents may underestimate their well-being, confirming the vulnerability of the TG population. This finding underlies the need to perform early assessments of QOL for early detection and intervention in aspects that could deteriorate their quality of life.

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Nutritional screening and assessment, and quality of life in children with cancer: A cross-sectional study in mainland China

Journal of Pediatric Nursing ◽

10.1016/j.pedn.2020.07.013 ◽

2020 ◽

Author(s):

Na Ouyang ◽

Xia Lu ◽

Ruiqing Cai ◽

Meiling Liu ◽

Ke Liu

Keyword(s):

Quality Of Life ◽

Mainland China ◽

Cross Sectional Study ◽

Sectional Study ◽

Nutritional Screening ◽

Children With Cancer ◽

Cross Sectional

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Women’s Quality of Life at 6 Weeks Postpartum: Influence of the Discomfort Present in the Puerperium

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph16020253 ◽

2019 ◽

Vol 16 (2) ◽

pp. 253 ◽

Cited By ~ 2

Author(s):

Juan Martínez-Galiano ◽

Antonio Hernández-Martínez ◽

Julián Rodríguez-Almagro ◽

Miguel Delgado-Rodríguez ◽

Ana Rubio-Alvarez ◽

...

Keyword(s):

Quality Of Life ◽

Ad Hoc ◽

Cross Sectional Study ◽

Postnatal Period ◽

Study Data ◽

Mean Difference ◽

Postpartum Woman ◽

Online Questionnaire ◽

Cross Sectional

Background: Discomfort during the puerperium period is very frequent in the lives of women but the influence of this discomfort on the women’s quality of life has been little studied. The objective of this study is to establish the association between discomfort and frequent problems of women in the puerperium and their quality of life score. Methods: A cross-sectional study on postpartum Spanish women was performed. Women older than 18 years and who had had a live birth were included. Less than 1% of women refused to participate in the study. Data were collected on socio-demographic, obstetric and newborn variables, on maternal problems/ discomfort in the postnatal period and on parameters that are quality of life indicators. An ad hoc online questionnaire which included the SF-36 Health Survey was used. Crude mean difference (cMD) and adjusted mean difference (aMD) were calculated through multiple linear regression. Results: 2990 women participated in the study. The greater problems causing quality of life loss were depressive symptoms (aMD = −12.40, CI 95%: −10.79, −14.01), lactation problems (aMD = −4.30, CI 95%: −2.97, −5.63), problems for sexual intercourse after childbirth (aMD = −6.34, CI 95%: −5.07, −7.60) and urinary incontinence (aMD = −4.97, CI 95%: −6.30, −3.65), among others. These have been detected as risk factors that affect the quality of life of the postpartum woman. Conclusions: The discomfort and problems manifested in the 6 weeks after childbirth have an influence that deeply affects the quality of life of postpartum women.

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Quality of life of adolescents with cerebral palsy: agreement between self-report and caregiver’s report*

Revista Latino-Americana de Enfermagem ◽

10.1590/1518-8345.3928.3300 ◽

2020 ◽

Vol 28 ◽

Author(s):

Mariana Ceravolo Ferreira ◽

Nathália Ribeiro Garcia ◽

Cejane Oliveira Martins Prudente ◽

Maysa Ferreira Martins Ribeiro

Keyword(s):

Quality Of Life ◽

Cerebral Palsy ◽

Physical Health ◽

Cross Sectional Study ◽

The Self ◽

Self Report ◽

Cross Sectional ◽

School Activities ◽

Pedsql 4.0

Objective: to assess the quality of life (QOL) of adolescents with cerebral palsy (CP) by self-report and by the caregiver’s report, and to analyze the agreement between these reports. Method: cross-sectional study conducted with 101 adolescents with CP and 101 caregivers. Both answered the Pediatric Quality of Life Inventory (PedsQL), module 4.0 - Generic (PedsQL 4.0) and module 3.0 - PC (PedsQL 3.0). Agreement between reports was analyzed using the Mann-Whitney test and the intra-class correlation coefficient (ICC) (p<0.05). Results: the lowest scores were in physical health, school activities and fatigue in the self-report. The lowest scores were in physical health and daily activities, in the caregivers’ report. Perceptions among adolescents and caregivers differed in physical health, movement and equilibrium, daily and school activities, with a lower score for caregivers in all of them. The agreement between the self-report and the caregivers’ report was poor (ICC<0.44) and in both instruments, the caregivers’ report was less optimistic. Conclusion: physical health is the most impaired domain of the QOL of adolescents with CP, both in the self-report and in the caregivers’ report. However, there is poor agreement between these reports, emphasizing that the use of the caregivers’ report should be cautious.

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Pain and quality of life of adolescents with primary dysmenorrhea in Tbilisi, Georgia, 2008. Cross sectional study

Revista Colombiana de Obstetricia y Ginecología ◽

10.18597/rcog.116 ◽

2013 ◽

Vol 64 (2) ◽

pp. 100-106

Author(s):

Tinatin Gagua ◽

Tkeshelashvili Besarion ◽

David Gagua

Keyword(s):

Quality Of Life ◽

Psychosocial Health ◽

Cross Sectional Study ◽

Control Group ◽

Primary Dysmenorrhea ◽

Sectional Study ◽

Cross Sectional ◽

Health Related Qol ◽

Health Related

Objective: The study aimed to measure the effect of primary dysmenorrhea on the quality of life of female adolescents living in Tbilisi, Georgia, and to compare Quality of Life (QoL) with healthy controls.Materials and methods: Cross-sectional study of 424 women aged 14-20, living in Tbilisi, Georgia, coming from academic and research institutions. The women were divided into those suffering dysmenorrhea (exposure group) and those without pain (control group). Reproductive history, demographic features, menstrual pattern, severity of dysmenorrhea and quality of life using the generic instrument EQ-5D, were measured. The Independent T student test was used for group comparison.Results: The group with dysmenorrhea (276) showed a lower Quality of Life score of 0.69 ± 0.20 vs. 0.94 ± 0.10 in the control group (p = 0.000); the Quality of Life VAS was also lower at 74.38 ± 17.83 vs. 87.02 ± 12.03 (p = 0.000). Of the subjetcs with primary dismenorrhea, 56.6% reported school absenteeism due to pain.Conclusion: Primary dysmenorrhea is a common problem in the adolescent population of Tbilisi, Georgia. The results of this study demonstrate that adolescents with primary dysmenorrhea in Georgia experience significantly lower physical and psychosocial health-related QoL than their healthy peers.

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Quality of Life Following Surgical Treatment of Post Cholecystectomy Bile Duct Injury

Journal of Nepal Health Research Council ◽

10.33314/jnhrc.v17i3.1544 ◽

2019 ◽

Vol 17 (3) ◽

pp. 336-339

Author(s):

Anip Joshi ◽

Subodh Adhikari

Keyword(s):

Quality Of Life ◽

Bile Duct ◽

Physical Health ◽

Bile Duct Injury ◽

Surgical Repair ◽

Gastrointestinal Surgery ◽

Cross Sectional Study ◽

Life Questionnaire ◽

Cross Sectional

Background: The Roux-en-Y hepaticojejunostomy surgery provides the mainstay of treatment in cases of bile duct injury following cholecystectomy.The aim of this study is to assess the quality of life in patients who underwent surgical repair of bile duct injury following cholecystectomy.Methods: The prospective cross sectional study was conducted in Gastrointestinal Surgery Unit, Bir Hospital, National Academy of Medical Sciences. The cases of bile duct injury following cholecystectomy who underwent surgical repair from April 2013 to March 2018 were included. The data collection was done using SF-36 quality of life questionnaire tool.The study was conducted after ethical clearance from Institutional Review Board of National Academy of Medical Sciences.Results: There were 26 cases of referred bile duct injury admitted in gastrointestinal surgery department from 2013 April till 2018 March out of which 19 (73%) were included in the study.More than half of the patients had limitations in carrying out vigorous activities (as running or lifting heavy objects) and 5.2% had a lot of limitations in carrying our moderate activities (as moving a table).63.1% of the patients did not have any interference with social activities with family, friends, neighbors or social groups because of their physical health or emotional problems. Conclusions: The surgical repair of bile duct injury following laparoscopic cholecystectomy has an impact on ability to perform work or daily activities as a result of physical health. However, it has little impact on patient’s perception of general health and social activities.Keywords: Cholecystectomy; BDI; QoL.

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Quality of Life Among Malaysian University Students: A Cross-Sectional Study

Malaysian Journal of Social Sciences and Humanities (MJSSH) ◽

10.47405/mjssh.v5i6.423 ◽

2020 ◽

Vol 5 (6) ◽

pp. 11-18

Author(s):

Patricia Pawa Pitil ◽

Norshella Syakila Binti Kadir ◽

Wan Juliana Emeih Wahed

Keyword(s):

Quality Of Life ◽

University Students ◽

Physical Health ◽

Psychological Health ◽

Student Athletes ◽

Cross Sectional Study ◽

Sectional Study ◽

Cross Sectional ◽

Health Domain

Quality of life reflects the health of individuals, physically and mentally. The aim of this study is to evaluate the quality of life among university students. A total sample of N=377 full-time students from various faculties of a single university were recruited following a cross-sectional study design. The World Health Organization QOL-BREF questionnaire was administered to measure the quality of life in four domains: physical quality, psychological quality, social relationship quality and environment quality. The total quality of life score obtained was 64.33 ± 8.02, which is in the fair category. For demographic comparisons, all domains were similar in distribution, except for age groups in the psychological health domain and sports involvement in the physical health domain. Older students reported a significantly higher mean scores for psychological health compared to the younger age group, while student-athletes scored higher in physical health than the non-athletes. Environment was scored lowest at (13.25 ± 1.78), while social relation was rated highest at (15.10 ± 3.07) among the participants. The overall quality of life and general health, and physical domains exhibited significant positive relationships, but some nonsignificant relationships were observed among student-athletes. Understanding the quality of life among university students would provide a beneficial information on their well-being. This study should become a benchmark to conduct other studies on similar topic especially among young adults. University counsellors and student’s affair departments should acknowledge this study as a reference for organizing students development programs and planning for intervention in improving students’ productivity if needed.

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Effect of Resilience on Health-Related Quality of Life during the COVID-19 Pandemic: A Cross-Sectional Study

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph182111394 ◽

2021 ◽

Vol 18 (21) ◽

pp. 11394

Author(s):

Monira I. Aldhahi ◽

Shahnaz Akil ◽

Uzma Zaidi ◽

Eman Mortada ◽

Salwa Awad ◽

...

Keyword(s):

Quality Of Life ◽

Saudi Arabia ◽

Physical Health ◽

Psychological Health ◽

Cross Sectional Study ◽

Sectional Study ◽

Cross Sectional ◽

Gender Based ◽

Physical Health Domain

The unprecedented outbreak of coronavirus disease 2019 (COVID-19) has caused a huge global health and economic crisis. The aim of the study was to examine the extent to which the resilience of a person is associated with the quality of life (QoL) of adults amongst Saudi Arabia. A cross-sectional study was conducted among a sample of adults in Saudi Arabia. A total of 385 adults voluntarily participated in and completed the survey. The quality of life was measured using the “World Health Organization QoL”. The “Connor-Davidson Resilience Scale” instrument was also used to assess resilience during the COVID-19 pandemic. Amongst the 385 participants, 179 (46%) showed a good QoL, and 205 (54%) reported a relatively poor QoL. The resilience was found to be significantly associated with QoL. The study further revealed that gender-based differences were dominant in the QoL; the men respondents reported a significantly higher QoL in all the domains in comparison to the women respondents. The gender, income, and psychological health and interaction effect of resilience and age explained 40% of the variance in the total score of QoL. In reference to the predictors of the physical health domain of QoL, resilience, gender, and psychological health were significantly associated with the physical health domain of the QoL (R2 = 0.26, p = 0.001). It was also noted that gender was not associated with the social relationships and environmental domains of QoL (p > 0.05). Findings showed a statistically significant association between the score of QoL and resilience, age, gender, income, and psychological health. These findings highlight the significant contribution of gender-based differences, psychological health, and resilience on the domains of QoL.

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