Parents’ perception of the quality of life of preschool children at risk or having developmental disabilities

Despite increased concern for the health related quality of life (HRQOL) of people with disabilities, little is known about the HRQOL of children with developmental disabilities. The present study aimed to explore the HRQOL of children who were at risk or having developmental disabilities in Hong Kong. Using the parent-reported Chinese Pediatric Quality of Life Inventory (PedsQL), the HRQOL of 173 children (2–4 years) with signs of delays in development was contrasted with that of 132 children with typical development. We found that those who exhibited high risk of developing a developmental disability had significantly lower overall well-being (76.3 ± 13.7 vs. 84.2 ± 11.3; p<0.001) and psychosocial health (71.3 ± 15.6 vs. 82.5 ± 12.9; p<0.001) but not necessarily physical health. The findings are consistent with previous findings in children with different disabilities and chronic illnesses. They suggest children at risk or having DDs need help in restoring their quality of life up to the standard experienced by their healthy peers, particular in psychosocial aspects such as social functioning, emotion functioning, and school functioning.     

Optimism and health-related quality of life in adolescents with cancer

Objective   To delineate the relationship between optimism and health-related quality of life (HRQOL) and quality of life (QOL) in adolescents with cancer living in the Bronx, New York.
Methods   Optimism was assessed using the Life Orientation Test, Revised (LOT-R). HRQOL and QOL were measured using the Pediatric Quality of Life Inventory, Cancer Module, Acute Version and The Pediatric Quality of Life Inventory, Generic Core Scale, respectively. Associations between optimism and HRQOL and QOL were assessed using Pearson's product-moment correlations.
Results   Twenty-three adolescents participated in this study; the mean age was 16 and the majority was male. This sample was highly optimistic and reported high HRQOL and QOL. Optimism was correlated with less reported pain and hurt, better communication with doctors, higher reported psychological functioning and higher overall QOL.
Conclusion   Optimism is associated with higher QOL in inner city adolescents with cancer. Further research should assess whether interventions that increase optimism lead to greater QOL in this population.     

Development of a condition-specific measure of quality of life for children with cerebral palsy: empirical thematic data reported by parents and children

BACKGROUND: Although there is increasing recognition that quality of life (QOL) and health-related quality of life (HRQOL) are important outcome variables in clinical trials for children with cerebral palsy, there are substantial limitations in existing measures of QOL. This study identify themes of QOL for children with cerebral palsy and their parents to guide the development of a new condition-specific QOL scale. METHODS: A qualitative study of parent and child views on QOL composition was conducted, using a grounded theory framework. Families participated in semistructured interviews on QOL until thematic saturation was reached (n = 28 families). RESULTS: Overall, 13 themes emerged from the interviews: physical health, body pain and discomfort, daily living tasks, participation in regular physical and social activities, emotional well-being and self-esteem, interaction with the community, communication, family health, supportive physical environment, future QOL, provision of, and access to services, financial stability, and social well-being. CONCLUSIONS: Research with parents and children with cerebral palsy, representative of severity across the disease spectrum and socio-economic status, reinforced and expanded on the traditional themes that have underpinned QOL measurement development. This has implications not only for the development of a new QOL scale for children with cerebral palsy, but also for clinical interventions and community care management.     

The evolution of health-related quality of life assessment in epilepsy

The purpose of this article is to review the ways in which quality of life has been assessed in patients with epilepsy. It is specifically proposed that there have been three phases or types of studies examining the effects of epilepsy on cognitive, behavioural, social and physical function. The first and oldest phase was characterized by the use of traditional forms of clinical evaluation and available generic measures of cognitive, behavioural and psychosocial function to study the general effects of epilepsy, effects of epilepsy-specific clinical variables (e.g. seizure type, age at onset), and the consequences of treatment with antiepileptic medications on patients' lives. The second phase of research was characterized by the development of epilepsyspecific measures of cognitive ability, psychological status and psychosocial status, which were designed to meet the special research and clinical needs not provided by previous generic measures (e.g. Washington Psychosocial Seizure Inventory, Fear of Seizures Scale). The third and most recent phase is characterized by the use of models, techniques, and measures developed from the health services research field to assess formally contemporary definitions of health-related quality of life (HRQOL) (e.g. ESI-55, QOLIE-89, Seizure Severity Scale) and develop models of the effects of epilepsy on HRQOL. Thus, concern regarding the impact and consequences of epilepsy is not a new development, but has evolved over the years, resulting in new models and methods of assessment of disease impact on well-being and functional status.     

医学生生命质量评价研究回顾与展望

生命质量（quality of life,QOL）又称为生存质量或生活质量,是一种用于评价人体健康水平的指标体系。随着生命质量及健康相关生命质量的概念被越来越普遍的接受与应用,各个群体及各类人群的健康相关生命质量都受到了关注。对医学生生命质量及健康相关生命质量的评价不仅有利于了解医学生群体总体的健康体验与健康状况,了解其相关影响因素,还能因此采取相应的措施来提高和改善医学生的健康体验与健康状况,对医学教育政策的研究与制定以及医学课程改革都有重要的指导意义。本文通过检索并筛选医学生健康生命质量评价的相关文献,来分析与介绍相关的评价方法以及研究结果,对影响医学生健康相关生命质量的因素进行总结分析,从而为进一步的研究提供参考。     

Symbiotic relationships of quality of life,health services research and other health research

Clinical biomedical research, the traditional research orientation of quality of life (QOL) researchers, is chiefly concerned with disease processes and assessing the impact of therapeutic interventions on improving health status and QOL outcomes. This paper suggests, however, that the biomedical paradigm limits utility of QOL research findings in terms of its ability to shape health policy and improve health-related QOL in populations at risk. This paper proposes that health services research (HSR) and other health research paradigms can be used to assess QOL from multiple perspectives. HSR and QOL research can be mutually beneficial. The models for understanding health services utilized in HSR may assist in defining major determinants of QOL and the interaction of QOL with its environment. Conversely, QOL measures may be used to establish the relevance of HSR to people's well-being. The paper first defines the domain of HSR and the domain of quality of life. In order to understand their relationship, we consider what a model or paradigm for each might be, and how they would overlap. Finally, a merging of conceptual frameworks is proposed, linking QOL research to HSR and other health research. Ultimately, expanding the QOL paradigm beyond the biomedical model will promote two objectives. First, it will permit research findings to contribute more fully to shaping national health policy by considering the broader community and the delivery system factors which influence QOL. Second, researchers will be more aware of a broader range of factors affecting patients and will incorporate this in their research.     

Parent proxy‐reported quality of life for children with cerebral palsy: is it related to parental psychosocial distress?

Background Parent‐proxy reports of quality of life (QOL) are often used to guide decisions about children with cerebral palsy (CP), although little is known about the factors that influence parent‐proxy reports. The aim of this study was to examine (i) the relationship between parental psychosocial distress and parent proxy‐reported QOL; and (ii) whether parental psychosocial distress mediates the relationship between child impairment and proxy‐reported QOL. Methods A sample of 201 primary caregivers of children aged 4–12 years with CP completed the Cerebral Palsy Quality of Life Questionnaire for Children, a condition‐specific QOL instrument, and a measure of psychosocial distress, the Kessler 10. The children, evenly distributed by gender (56% male) were sampled across Gross Motor Function Classification System levels (Level I = 18%, II = 28%, III = 14%, IV = 11%, V = 27%). Results Consistent with the hypotheses, parental distress was negatively correlated with all domains of parent proxy‐reported QOL (r=?0.18 to r=?0.55). The relationship between impairment and proxy‐reported QOL was mediated by parental distress for five of the seven domains of QOL (social well‐being and acceptance, feelings about functioning, participation and physical health, emotional well‐being and self‐esteem, and pain and impact of disability). Child impairment did not predict access to services or family health. Conclusion This is the first study that assesses the relationship between parental distress and proxy‐reported QOL for children with CP. Although the cross‐sectional nature of the available data precludes any statements of causality, the results suggest that, when using parent proxy, the parents' psychological state should also be measured. This is particularly important when, as is often the case for child disability research, proxy‐reported QOL are the only available data.     

Agreement between parent and child report of quality of life in children with attention-deficit/hyperactivity disorder

BACKGROUND: There is little information in the research literature of agreement between parent and child in reports of child quality of life (QOL) for a sample of children diagnosed with attention-deficit/hyperactivity disorder (ADHD). The aim of our study was to determine whether parent and child concordance is greater for physical domains of QOL than for psychosocial domains; whether parents rate their child's QOL better or poorer than their child's ratings; and whether concordance is related to demographic, socioeconomic or clinical factors. METHODS: The study was a questionnaire survey of children aged 10-17 referred to the ADHD clinic and diagnosed with ADHD in the province of British Columbia (Canada) between November 2001 and October 2002 and their parent. RESULTS: Fifty-eight children diagnosed with ADHD and their parents completed our study questionnaire. The main outcome measure was the Child Health Questionnaire, which permitted comparisons on eight QOL domains and one single item. Intraclass correlation coefficients were moderate for five domains (range from 0.40 to 0.51), and good for three domains (range from 0.60 to 0.75). Children rated their QOL significantly better than their parents in four areas and poorer in one. Standardized Response Means indicated clinically important differences in mean scores for Behaviour and Self-esteem. Compared with population norms, across most domains, children with ADHD reported comparable health. Discrepancies between parent-child ratings were related to the presence of a comorbid oppositional/defiant disorder, a psychosocial stressor and increased ADHD symptoms. CONCLUSIONS: Although self-report is an important means of eliciting QOL data, in children with ADHD, given the discrepancies in this study between parent and child report, measuring both perspectives seems appropriate.     

Toward a general model of health-related quality of life

A health-related quality of life (HRQOL) model that fitted data collected in previous studies from two separate samples—patients with chronic physical illness and patients with chronic mental illness—was adapted and tested on a representative sample drawn from the normal population. This model, which implied that both physical and mental health influenced number of friendships, personal growth, and job satisfaction, fitted the data very well. However, an alternative model reversing the directions of the pathways so that friendships, personal growth, and job satisfaction affected physical health and mental health, with the latter two having a mutual effect on each other, fitted the data even better. This suggests that, although a medical model of HRQOL may be more important when it comes to alleviating illness, a psychosocial model of HRQOL may be more important when it comes to maintaining health and preventing illness. Moreover, the fact that essentially the same five-factor structural model fits three distinct populations, healthy and unhealthy, suggests that there may be a general model of quality of life applicable to all populations. The implications of these findings for clinical theory, policy, and practice are discussed.     

影响老年军人生活质量的相关因素研究

目的 探讨影响驻西安地区军队老年人群生活质量的相关因素。方法 采用M0ssF一36量表的中文版对西安地区军队934名老干部进行生活质量测量。结果 西安地区军队老年人的生活质量与年龄、家人对自己关心程度、健康自评、看病自付费用和对自己所患疾病治疗效果的评价呈显著相关，而与他们的性别、人均收入、原职称、子女同住情况和学历均无显著相关。结论 军队干休所医痘卫生工作的重点不仅要放在医疗保健，而且也要注重老年人的心理卫生保健，才能全面地提高老年军人的生活质量。     

Psychosocial adaptation status and health-related quality of life among older Chinese adults with visual disorders

Purpose  To examine the association of psychosocial adaptation status with vision-specific health-related quality of life (HRQOL) and the role of psychosocial adaptation in the linkage between visual impairment and vision-specific HRQOL outcomes among older adults with visual disorders. Design and methods  In this cross-sectional study, older urban adults with visual problems (N = 167) were interviewed using a structured questionnaire to assess their self-reported visual function, general health, psychosocial adaptation status, and vision-specific HRQOL. Performance-based measure of visual function marked by distance visual acuity was clinically conducted by ophthalmologists. Results  It was found in the study that psychosocial adaptation status was significantly associated with vision-specific HRQOL, including the domains of mental health symptoms due to vision and dependency on others due to vision. The results also showed that psychosocial adaptation status could buffer the effect of visual impairment on vision-specific HRQOL, including the domains of social function, mental health, and dependency. Conclusion  Psychosocial adaptation status is significantly associated with multiple domains of vision-specific HRQOL. The findings have significant implications for health education and psychosocial intervention for older adults with age-related vision loss.     

The relationship between proxy reported health-related quality of life and parental distress: gender differences

Objective Although primary caregiver proxy reports of health‐related quality of life (HRQOL) are often used for healthcare decision making when child self‐reports are unable to be collected (because of a variety of reasons such as child illness, disability or age), we have little understanding of the correlates of parent‐proxy reports. The aim of this study was to examine the relationship between parental depression and parent‐proxy reported QOL for primary caregivers (mothers and fathers), using a multidimensional HRQOL instrument. It was hypothesized that maternal depression would be negatively correlated with maternal reported HRQOL, but that paternal depression would not be correlated with paternal reported HRQOL. Methods Data were from parents of children aged 4–5 years (n = 4983) involved in the Longitudinal Study of Australian Children. A questionnaire assessing parental depression (Kessler‐6) and proxy reported HRQOL (Pediatric Quality of Life Inventory) was completed by the primary caregiver. Results For maternal primary caregivers, maternal depression was negatively correlated with all domains of maternal proxy reports of HRQOL (r = ?0.24 to r = ?0.36). For paternal primary caregivers, there was no relationship between paternal depression and paternal proxy reports of HRQOL. Multiple regression analyses demonstrated that maternal depression was a significant predictor of total HRQOL, accounting for 12% of the variance. For paternal mental health, depression did not predict parent‐proxy reported total HRQOL. Conclusion These results highlight the importance of assessing maternal mental health when measuring proxy reported QOL. Further research is needed in this area to examine the relationship between parental depression and proxy reported HRQOL (including both mothers and fathers, where possible), as well as child self‐reported HRQOL.     

Quality of Life in Diverse Groups of Midlife Women: Assessing the Influence of Menopause, Health Status and Psychosocial and Demographic Factors

This paper examines whether menopausal status is associated with global quality of life (QOL) among women aged 40-55 and whether this association varies by race/ethnicity. We further examine the contributions of other health-related and psychosocial factors to QOL and whether these associations vary by racial/ethnic group. Analyses are based on 13,874 women who participated in the multi-ethnic, multi-race study of mid-aged women called the Study of Women's Health Across the Nation (SWAN). Study participants completed a 15-min telephone or in-person interview that contained questions on a variety of health-related topics. Items of interest for these analyses include global QOL, menstrual history (to assess menopausal status), sociodemographics, health status, lifestyle, and psychosocial variables. Results showed that in unadjusted analyses, early perimenopausal women reported lower QOL compared with premenopausal women, but menopausal status was no longer associated with QOL when analyses were adjusted for other variables. In multivariable models, being married and having low levels of perceived stress were associated with better QOL across all racial/ethnic groups. While there were many consistencies across racial/ethnic groups, we also found that the nature of the associations between QOL and education, marital status, perceived stress and social support varied across racial/ethnic groups.     

急性期脑卒中患者生命质量及影响因素

目的 评价急性期脑卒中患者的生命质量,并探索其生命质量的影响因素.方法 采用简明健康测量量表(SF - 12)评价301名首次发生的急性期脑卒中患者的生命质量,采用多元线性回归探索生命质量的影响因素.结果 生理功能、躯体疼痛、总体健康、社会功能维度下降最为明显,低于美国常模值(P＜0.05);影响生命质量躯体健康总评分的因素主要有性别、年龄、教育程度及rankin评分;而影响精神健康总评分的主要因素有性别、年龄、入院时间长短;其中女性、63 ～72岁年龄组、教育程度低者、生活能力差者生命质量评分下降明显.结论 脑卒中患者急性期生命质量的下降主要是表现在躯体健康方面,积极的治疗有助于患者生命质量的提高与恢复.     

Quality of life measurement in paediatric and adolescent populations with HIV: a review of the literature

Purpose   To review the quality and utility of currently available self-report generic quality of life (QOL) and health-related quality of life (HRQOL) measures for use with children and adolescents with human immunodeficiency virus and/or acquired immunodeficiency syndrome (HIV/AIDS).
Methods   Literature searches were conducted to identify QOL and HRQOL measures developed for, adapted for, or otherwise used with paediatric and adolescent populations with HIV/AIDS. The quality of measures (i.e. item generation techniques, instrument properties including reliability, validity and responsiveness) were compared and critically evaluated.
Results   Nineteen QOL/HRQOL measures were identified. Item content was generated from the respondent (adult) population in only eight (42%) measures. Seventeen (90%) measures reported internal reliability in the accepted range between 0.70 and 0.90 and four (21%) reported reproducibility statistics in this range. Although validity was reported for 19 (100%) measures, only six (32%) showed evidence for three or more properties, with construct validity being the most commonly reported aspect. The authors of eight (42%) measures reported evidence for responsiveness.
Conclusions   While almost all measures reviewed demonstrated adequate psychometric properties, only one-third demonstrated all aspects of validity, and less than half demonstrated responsiveness. None included paediatric or adolescent populations with HIV/AIDS in their development, neglecting to obtain input from target respondents in item generation to determine what health-related and daily functioning factors are of importance to them. Despite noted limitations, the AUQUEI or the SWED-QUAL appear the best currently available generic measure, and the MQOL-HIV the preferred disease-specific measure, at least for use with older adolescents/young adults.     

Health-related quality of life among hemodialysis patients at El-Minia University Hospital, Egypt

Background

Hemodialysis results in significant change in daily living, physical and psychological impairments, disruption of marital, family, and social life. Health-related quality of life (HRQOL) assessment helps to plan individual treatment strategies, and determine the efficacy, quality of medical and social care provided.

Aim

The focus of the study was to assess HRQOL of hemodialysis patients attending El-Minia University Hospital dialysis unit, determine the relation between HRQOL and some sociodemograghic factors and clinical disorders and also to compare HRQOL between patients performing hemodialysis for less than and more than 5 years.

Subjects and methods

The study is a cross-sectional hospital-based study that included 170 hemodialysis patients; 81 males and 89 females, mean age 46.6?±?14.6 years. In all 59.4 % were rural residents. Data were collected by a questionnaire which included, demographic, social and medical data. Kidney Disease Quality of Life-36 (KDQOL-36) health survey was used for assessment of HRQOL.

Results

About two thirds (64 %) of the studied hemodialysis patients had physical and mental quality of life (QOL) scores below average level. HRQOL was lower in old, female, married, illiterate and non-worker hemodialysis patients. Hepatitis C positive (HCV), diabetic and anemic patients had decreased QOL scores. A longer duration of hemodialysis treatment was associated with reduced physical QOL.

Conclusion

The most important sociodemographic factors affecting HRQOL were age, sex, education, occupation and marital status. The most important clinical disorders affecting QOL were anemia, HCV infection, sleep disturbances and diabetes. Increase awareness of hemodialysis patients and their caregivers about disabilities associated with hemodialysis treatment and educational programs to decrease the problems which the patients face and to increase the QOL.     

Relative importance and interrelations between psychosocial factors and individualized quality of life of hemodialysis patients

Since quality of life (QOL) of hemodialysis (HD) patients is low and frequently difficult to improve by medical therapy, it is important to identify psychosocial correlates and life-domains important for HD patients' QOL. Our hypothesis was that psychosocial factors reflecting appraisal, external and internal resources/impediments correlate with QOL and compensate for adverse effects of disease-related variables on QOL. Forty-eight chronic HD-patients identified and rank-ordered life-domains important for QOL and rated their level of satisfaction with those domains. This was performed using a slightly modified version of the Self-Evaluated Individualized QOL (SEiQOL) Scale. Psychosocial factors included perceived-control (PC), social-support and hostility. Demographic and disease-related factors included age, gender, cardiovascular disease (CVD), diabetes, hematocrit, albumin and C-reactive protein. QOL was significantly correlated with PC (r = 0.65) and social-support (r = 0.38), and inversely correlated with hostility (r = –0.31), diabetes and hypoalbuminemia (all at least p < 0.05). PC mediated effects of certain variables (e.g., albumin, gender, hostility) and moderated effects of little social-support and hypoalbuminemia on QOL. Patients' most important QOL domains were health, with which satisfaction was lowest, followed by family, with which satisfaction was highest. Pending replication with larger samples, assessment and enhancement of PC may improve HD patients' QOL.     

Is treatment adherence associated with better quality of life in children with sickle cell disease?

The association of treatment adherence with quality of life (QOL) and the role of sickle cell disease complications were explored in children with sickle cell disease. Primary caregivers of 43 children, ages 5 years and older, and 21 children, ages 8 years and older, completed a standardized measure of QOL during an admission for pain or fever to the hematology acute care unit. Adherence was measured through medical staff ratings, caregiver-report of sickle cell disease-related care activities, and matching of medical staff standard recommendations for treatment of pain and fever with sickle cell disease-related care activities. Sickle cell disease complications were assessed via medical file review. Pearson correlation coefficients indicated that better adherence was associated with poorer overall QOL. In follow-up analyses, although sickle cell disease complications were associated with adherence, it did not explain the negative correlation of adherence with QOL. Higher treatment adherence may interfere with activities that contribute to QOL for some children. Further research to investigate the role of sickle cell disease complications, as well as psychosocial factors, in determining both treatment adherence and QOL is suggested.     

留守儿童生存质量与心理健康的相关性及影响因素分析

目的 分析留守儿童生存质量与心理健康的相关性及留守儿童生存质量的影响因素,为改善留守儿童生存质量提供理论依据。方法 2017年9月-2020年9月抽取本地区某小学四年级至六年级208名留守儿童进行调查,用儿童生存质量普适性核心量表(PedsQL4.0)评价留守儿童生存质量,用心理健康诊断测验(MHT)评价留守儿童心理健康状况。用Pearson相关分析法分析留守儿童生存质量与心理健康的相关性,用多元线性逐步回归模型分析影响留守儿童生存质量的因素。结果 留守儿童PedsQL4.0量表结果总分为(80.52±9.58)分,MHT测验结果显示总分为(8.27±0.99)分。留守儿童生存质量得分与心理健康得分均呈负相关(P＜0.05)。多因素分析显示影响留守儿童生存质量总分的因素有照顾者受教育程度、有无兴趣爱好、与父母联系频率、父母外出务工时间(β=3.122、4.057、2.524、-2.018,P＜0.05)。结论 留守儿童生存质量与心理健康密切相关,照顾者受教育程度、有无兴趣爱好、与父母联系频率、父母外出务工时间等因素均能影响留守儿童生存质量。     

The relation between health-related quality of life, treatment adherence and disease severity in a paediatric sickle cell disease sample

Background The purpose of this study was to provide a comprehensive examination of the potential factors associated with health‐related quality of life (HRQOL) in a paediatric sickle cell disease sample. Methods Caregivers of 78 paediatric sickle cell disease patients completed surveys, which included measures of HRQOL, treatment adherence and barriers to treatment adherence. Medical chart reviews were also conducted to assess disease severity. Results Barriers to treatment adherence and pain crisis frequency were found to be the most robust factors associated with HRQOL. Conclusions This study provides insight into the factors related to paediatric sickle cell disease and informs both clinicians and researchers interested in understanding and improving HRQOL in this population. In particular, the reduction of pain crises frequency and barriers to adherence may be particularly effective strategies to improve HRQOL.