Instrument For Assessing Quality Of Life Research Articles

Quality of life assessment in domestic dogs: An evidence-based rapid review

Assessment of quality of life (QoL) is an important, increasingly popular outcome measure in veterinary research and practice, particularly in dogs. In humans, QoL is commonly assessed by self-reporting and since this is not possible for animals, it is crucial that instruments designed to measure QoL are tested for reliability and validity. Using a systematic, replicable literature search strategy, the aim of this study was to find published, peer-reviewed instruments for QoL assessment in dogs and to assess the quality of these. CAB Abstracts and PubMed were searched in July 2013 using terms relevant to dogs, wellbeing and QoL. Inclusion and exclusion criteria were applied. When instruments were not published in full, authors were contacted to obtain them. Criteria were applied to assess the quality, validity and reliability of the 52 instruments obtained. Twenty-seven additional instruments used in peer-reviewed publications were not included because they had not been fully described in the publication or were not provided by authors upon request.Most of the instruments reviewed (48/52) were disease-specific rather than generic. Only four publications provided a definition of QoL or wellbeing. Only 11/52 instruments demonstrated evidence of assessing reliability or validity, and the quality of these instruments was variable. Many novel, unvalidated instruments have been generated and applied as clinical outcomes before it was known whether they measured QoL. This rapid review can be used to identify currently available and validated canine QoL instruments, and to assess the validity and quality of new or existing instruments.

QUALITY OF LIFE OF STROKE PATIENT CAREGIVERS AT SRINAGARIND HOSPITAL, KHON KAEN PROVINCE, THAILAND

Stroke is a chronic disease requiring patients to be treated for a long period of time. Patients need to been given close and attentive care, and this has an impacton the health and daily lives of caregivers. The aim of this cross-sectional descriptive study was to investigate the quality of life of stroke patient caregivers at Srinagarind Hospital, Khon Kaen Province, Thailand. The subjects were 166 caregivers of all stroke patients who received treatment at Srinagarind Hospital during the period 1 July 10 September, 2011. The research tool was a questionnaire which was intwo parts: Part 1 was designed to collect baseline data about the patients and their caregivers, and Part 2 was the Thai version of the brief WHO quality of life assessment instrument (WHOQOL-BREF-THAI). Data were collected from the patients medical histories and from interviews conducted by the researchers and were analyzed using descriptive statistics. The results showed that the overall quality of life of caregivers was at a moderate level with a mean score of92.5. In terms of each component domain of the quality of lifeinstrument, the mean scores for physical health, mental health, social relationships, and the environment were24.1, 21.3, 10.7, and 29.3 points, respectively.Even though the quality of life of caregivers was moderatelyhigh, medical professionals who provide care for stroke patients should assist and support caregivers in various ways by, for example, giving advice on sources of information which are useful to the caregivers themselves and for the physical and mental health care of the patients in. They should also provide assistance to families when they require help in continuing to care for the patients in their own homes.

Decrease in blood pressure and improved psychological aspects through meditation training in hypertensive older adults: A randomized control study.

The present study aimed to evaluate the effects of Zen meditation on blood pressure (BP) and quality of life in elderly subjects. A total of 59 volunteers (21 men and 38 women), aged ≥60 years with systolic BP between 130 and 159 mmHg and diastolic BP between 85 and 99 mmHg, were randomly divided into a meditation group (MG), n = 28 and a control group (CG), n = 31. The MG meditated twice a day for 20 min for 3 months, and the CG remained on a waiting list. The BP levels were measured monthly in both groups. The volunteers' medication was kept stable. A quality of life assessment instrument was applied at the beginning and end of the study. For systolic BP, analysis of variance showed the influence of time (F(4,228) = 4.74, P < 0.01, β = 0.98) and the interaction group × time (F(4,228) = 3.07, P < 0.01, β = 0.89). The MG showed a significant decrease in systolic BP levels in the second measurement after 1 month of meditation practice when compared with the CG (Newman-Keuls test, P < 0.05). Starting at the second measurement, systolic BP levels in the MG were lower than the baseline and first measurement levels; however, the systolic BP levels were similar to those observed in the CG. In the quality of life assessment evaluation, a significant improvement in psychological aspects and overall quality of life in the MG compared with the CG was observed. These results suggest that Zen meditation is an interesting tool as a complementary treatment for hypertension in elderly subjects.

Quality of Life in Bile Duct Injury: 1-, 5-, and 10-year Outcomes After Surgical Repair

BackgroundQuality of life after bile duct injury is a relevant health issue besides physician-oriented outcomes. A prospective study was performed to explore short- and long-term outcomes after surgical repair. MethodWe studied a cohort of patients with Strasberg E injuries who underwent Roux-en-Y jejunal anastomosis from 1990 to 2008. The Short Form Health Survey (SF-36) was selected as the appropriate quality of life assessment instrument. Two groups were comprised: Group I included patients with 10-year follow-up after surgery. Group II included patients operated during 2008 with preoperative 1- and 5-year questionnaires. ResultsGroup I patients (N = 41) were operated from 1990 to 2003 and Group II (N = 44) during 2008. There is a significant improvement in quality of life after the first year of repair in all domains. Readmissions (48 vs 25 %; p < 0.01), colangitis (46 vs 14 %; p < 0.001), and hepatojejunal redo (26 vs. 4 %; p < 0.0001) were less frequent in Group II. No differences in quality of life summary scores were found between Group I and II. ConclusionsQuality of life improves significantly after the first year of surgical repair, reaching a plateau at 5 years. No correlation exists with physician-centered outcomes.

Self-reported quality of life of young children with conditions from early infancy: a systematic review.

There is little consistency in the use of instruments for measuring self-reported quality of life (QoL) in young children. To systematically review studies of self-reported QoL in children aged <12 years with congenital health conditions, and to examine the agreement between self- and proxy-reports. Literature databases (MEDLINE, EMBASE, Web of Science, PsychINFO) were systematically searched, reference lists of eligible studies were scanned. We included studies published in English between January 1989 and June 2013 which used validated instruments to assess self-reported QoL in children aged <12 years with a distinct congenital health condition identified in early infancy. We extracted data on study design, objective, sample characteristics, QoL assessment instrument, statistical techniques and results. From 403 full-text articles assessed for eligibility, 50 studies underwent detailed review, and 37 were included in a narrative synthesis. Children's self-reported QoL was assessed by using a variety of generic and/or condition-specific instruments, with the Pediatric Quality of Life Inventory being the most frequently used (25% [9 studies]). Regardless of the condition or the instrument used, children often reported QoL similar to the reference population, except for lower scores in the physical functioning/health domain. There were differences between younger and older age groups according to QoL domain. The child's perception of QoL differed from that of his or her parents, in particular for subjective domains such as emotional functioning, and these differences were age related. The main limitation of the review resulted from the lack of published studies on self-reported QoL in young children, in particular, lacking both self-reports and proxy reports. Existing studies demonstrated wide variability in the QoL instruments used and approaches to statistical analyses, lack of information about the formation of the study sample (response rate; comparison of responders and nonresponders) and low sample sizes in the age group of interest. The reviewed studies demonstrated that, even for younger children, both child and parent perspectives are essential to understanding the impact of a condition on a child's QoL.

Mental health of single fathers living in an urban community in South Korea

ObjectiveThe aims of this study were to understand the mental health of single fathers relative to married fathers as the population of single fathers continues to increase and to use the resultant data for the establishment of public health policies. MethodsWe evaluated the mental health of 58 single fathers and 256 married fathers living in an urban community in South Korea. Self-reported questionnaires including the Global Assessment of Recent Stress, Center for Epidemiologic Studies–Depression, Scale for Suicidal Ideation, the Korean version of the Alcohol Use Disorder Identification Test, and the World Health Organization Quality of Life Assessment Instrument were used for evaluation. The mental health scale scores and the prevalence of mental health problems were compared between the single and the married fathers. We also assessed the factors associated with poor QOL, depressive symptoms, and severe stress among single fathers. ResultsThe single fathers had poorer quality of life (OR 7.30, 95% CI 2.82–18.74), more depressive symptoms (OR 3.85, 95% CI 1.29–11.45), and more stress (OR 3.36, 95% CI 1.25–8.98) than did the married fathers even after controlling for socio-demographic factors. Among the single fathers, poor socioeconomic conditions, such as no house ownership, manual occupations, having two or more children, and having a youngest child in elementary school or middle school, were significantly associated with poorer mental health. ConclusionsThis study demonstrated that single fathers have poorer mental health than do married fathers. Single parenthood was significantly associated with their mental health. Therefore, we should attempt to provide practical support to reduce the social burden and offer earlier psychological interventions to reduce distress in single fathers.

Translation, cultural adaptation, and validation of the American Skindex-29 quality of life index.

BACKGROUND Measuring the quality of life measure of patients with dermatologic diseases is an important concern. The instruments to evaluate it are commonly originally written in English and need to be translated and validated to be used in different cultures. OBJECTIVE The purpose of this paper is to translate and validate the Skindex-29 questionnaire to Brazilian Portuguese to be used in our country as a quality of life assessment instrument in dermatologic patients. METHODS The first step was the translation from English to Brazilian Portuguese and the back-translation by two native speakers. The translated version was then used for the second step, when three questionnaires were applied to 75 patients (43 of whom were classified as lightly affected and 32 as heavily affected by their dermatologic conditions): an identification questionnaire, the translated version of Skindex-29, and the Brazilian Portuguese version of Dermatologic Life Quality Index (DLQI). Additionally, the generic questionnaire Short Form 36 (SF-36) was applied to 41 of these patients. The last step to evaluate reproducibility was repeating the Skindex-29 questionnaire by the same researcher one week later in 44 patients. RESULTS Reliability was observed in global Skindex-29 scale (α=0.934), and its domains emotions (α=0.926), symptoms (α=0,702), and psycosocial functioning (α=0.860). The reproducibility showed high intraclass correlations. High intra class correlations was observed, thus validating reliability. CONCLUSIONS The Skindex-29 quality of life questionnaire was properly translated and validated to Brazilian Portuguese.

Desenvolvimento e validação da versão brasileira do Diagnóstico do Trabalho (Job Diagnostic Survey) de Hackman e Oldham

O presente estudo teve por objetivo desenvolver e validar a versão brasileira do instrumento Diagnóstico do Trabalho de Hackman e Oldham. O processo de tradução e adaptação cultural do instrumento seguiu o procedimento adotado pelo Instrumento de Avaliação de Qualidade de Vida da Organização Mundial da Saúde - WHOQOL na elaboração das versões traduzidas dos instrumentos WHOQOL. O coeficiente alfa de Cronbach apresentou valores significativos para todas as dimensões avaliadas. Com relação à validade de critério, todas as dimensões apresentaram correlações significativas entre si. No que concerne à validade concorrente, inferiu-se que a correlação entre média das dimensões do Diagnóstico do Trabalho com o escore global do Instrumento de Avaliação da Qualidade de Vida no Trabalho de Walton foi significativa. A confiabilidade teste-reteste mostrou que em nenhuma das dimensões houve variação significativa e em todas as dimensões o índice de correlação entre ambas as aplicações demonstrou-se significativo. A versão brasileira do instrumento Diagnóstico do Trabalho de Hackman e Oldham foi validada, apresentando propriedades psicométricas satisfatórias, mantendo as características originais do instrumento.

Comparison of health-related quality of life assessment instruments in diabetes patients

The objective of the study was to compare the sensitivity, reliability and the preference measures derived from SF-6D, EQ-5D and WHO-5 in a group of diabetes patients.

Comparative Study of the Perceived Quality of Life of Patients in Treatment for Cocaine and Heroin Dependence in Spain: Differences by Gender and Time in Treatment

This is a cross-sectional study in which we compared the perceived quality of life (QoL) of patients receiving outpatient treatment for cocaine (n = 727) and heroin dependence (n = 469), by analyzing differences by gender and time in treatment. Participants were recruited from addictive behavior centers in Spain in 2004. The World Health Organization Quality of Life Assessment Instrument (WHOQOL-Bref) was used as a measure. Analysis of covariance and multivariate linear regression were used. This study shows the relevance of considering the role of gender in QoL studies, and the need to evaluate the effectiveness of treatment in the improvement of QoL. Limitations of the study were noted.

Psychometric properties of the forensic inpatient quality of life questionnaire: quality of life assessment for long-term forensic psychiatric care

A substantial group of forensic psychiatric patients require (life)long forensic psychiatric care. Instead of aiming at re-entry into society, treatment in long-term forensic psychiatric care (LFPC) is principally aimed at medical and psychiatric care and optimising quality of life (QoL). To assess QoL in LFPC, the influence of both the mental disorder and the restrictive context should be considered. Therefore, a new instrument was developed: the Forensic inpatient QoL questionnaire (FQL). The FQL is based on the results of concept-mapping with patients and staff within LFPC. The main purpose of this study is to evaluate the psychometric properties of the FQL. One hundred and sixty-three FQLs, filled out by 98 male long-term forensic psychiatric patients, were included for testing reliability and content validity. For testing construct validity, 53 patients additionally completed the World Health Organisation Quality of Life-Brief version and 50 of them the Affect Balance Scale. Outcomes indicate that the FQL has good psychometric properties. Fifteen of the 16 FQL domains showed adequate to good reliability (Cronbach's α range .69–.91) and 9 domains met the criteria for homogeneity. Content validity was demonstrated by exploratory factor analysis, which revealed a three-factor structure: social well-being, physical well-being and leave. Construct validity was supported by 59% correctly hypothesised inter- and intrascale Pearson's correlation coefficients. Good psychometric properties and its clinical-based development make the FQL a valid and useful instrument for QoL assessment in LFPC. The FQL could therefore contribute to evidence-based and more advanced treatment programmes in LFPC.

Health-related quality of life in persons after traumatic brain injury: a systematic review of the literature

BackgroundTraumatic brain injury (TBI) results in significant mortality and long-term disability. Valid health-related quality of life (HRQL) measures are necessary to quantify the burden of TBI, functional impairment in survivors, and the impact of interventions being studied. Numerous different HRQL instruments are available, but the validity for use in patients with TBI is insufficiently clear. We performed a systematic review of studies measuring HRQL in patients with TBI to evaluate the measurement properties of HRQL instruments in TBI. MethodsTBI studies measuring HRQL (1991–2012) were identified in Medline (PubMed), Web of Science, and Embase. Articles were collated by study design, HRQL instrument, timing of assessment(s), and HRQL outcomes by two reviewers. Methodological quality of measurement properties was evaluated with the COnsensus-based Standards for selection of health status Measurement INstruments (COSMIN) checklist. FindingsA total of 53 HRQL studies were included (45 descriptive and eight validation studies of a HRQL instrument), including 18 different HRQL instruments. The 36-item short form (SF-36) was used in 26 studies; paediatric quality of life inventory (PedsQL) in five; EQ-5D and sickness impact profile (SIP) in five; WHO quality of life assessment instrument, brief version (WHOQOL-BREF) and perceived quality of life scale (PQOL) in three; and quality of life after brain injury (QOLIBRI) and child health questionnaire (CHQ) in two studies. Other instruments were used once. Assessment timepoints of HRQL ranged from baseline to 24 years post-TBI. 16 studies performed multiple assessments. The validity of the SF-36 was most frequently evaluated and showed positive results for internal consistency and validity. Other instruments (QOLIBRI, EBIQ, CHQ, WHOQOL-BREF) showed positive results as well, but evidence for each measurement property was limited. InterpretationThere is large variation in use of HRQL instruments and assessment timepoints. This impedes comparison of HRQL outcomes between studies aiming to quantify the impact of TBI on population health over time. The use of the SF-36 in combination with a TBI-specific instrument seems promising. Development of guidelines for the measurement of HRQL in TBI would facilitate comparability across studies, resulting in improved burden of TBI estimates. FundingPersonal Fellowship of Department of Public Health, Erasmus MC, Rotterdam, Netherlands.

D 유형 성격에 따른 관상동맥질환자의 정신건강과 삶의 질

본 연구는 D 유형 성격에 따른 관상동맥질환자의 정신건강과 삶의 질 수준을 파악하기 위한 서술적 조사연구이다. 연구 대상자는 2012년 3월부터 5월까지 경기도 소재 일 대학병원의 심장내과에 입원한 관상동맥질환자 111명이었다. D 유형 성격 분류는 Type D Personality Scale (DS14)를 이용하였으며, 정신건강은 간이정신진단검사(Symptom Checklist-90-Revision, SCL-90R), 삶의 질은 세계보건기구 삶의 질 척도(World Health Quality Of Life assessment instrument, WHOQOL-BREF)를 이용하여 측정하였다. 연구결과 대상자 중 D 유형 성격은 36.1%이었다. 정신건강은 D 유형 성격 군과 D 유형 성격이 아닌 군 간에 신체화, 강박증, 대인 예민성, 우울, 불안, 적대감, 공포불안, 편집증, 정신증 영역 모두에서 유의한 차이가 있었다(p<.001). 삶의 질은 D 유형 성격 군이 49.69점으로 D 유형 성격이 아닌 군의 58.21점에 비해 낮았다(p<.001). 이상의 결과를 토대로 관상동맥질환자의 정신건강과 삶의 질 향상을 위한 간호중재프로그램의 개발을 시도하는 경우 D 유형 성격에 대한 고려가 필요하며, 부정적 정서가 강하고 사회적 제한이 심한 D 유형 성격 환자의 경우 신체적, 정신적 기능회복은 물론 사회적 적응력 향상을 위한 노력이 필요하다. The purpose of this study was to confirm the mental health and quality of life by type-D personality of the patients with coronary artery disease (CAD). The participants in the study were 111 hospitalized patients with CAD at a hospital in Gyeonggi-do. The type-D personality was assessed by the Type-D Personality Scale (DS14). The mental health was measured with Symptom Checklist-90-Revision (SCL-90R) while quality of life was assessed with World Health Quality of Life Assessment Instrument (WHOQOL-BREF). The data analysis revealed that 36.1% of CAD patients were identified as having type-D personality traits. Non type-D personality patients have shown better mental health state than type-D personality patients (p<.001) have. The level of quality of life in the type D personality patients were significantly lower than that of non type-D counterparts (p<.001). It is necessary for type-D personality to be considered, when the nursing intervention programs for improving the mental health and quality of life of the patients with CAD are developed.

Reliability and Validity of the Korean Version of the Pain Disability Questionnaire

ObjectiveTo translate the English version of the Pain Disability Questionnaire (PDQ) into Korean and to investigate the reliability and validity of the Korean version of the PDQ (K-PDQ) in patients suffering chronic disabling musculoskeletal disorders (CDMDs).MethodsThe English version of the PDQ was translated into Korean. Ten patients with CDMDs were randomly selected for a pilot study to assess the comprehensibility of the pre-final version. One hundred and thirty-nine patients suffering from CDMDs for more than 3 months were enrolled in this study. Follow-up questionnaires were obtained to examine the test-retest reliability. Concurrent validity was evaluated by comparing the K-PDQ with the visual analogue scale (VAS). Construct validity was evaluated by comparing the K-PDQ with the brief form of the World Health Organization quality of life assessment instrument (WHOQOL-BREF) using Pearson correlation coefficient. Reliability was assessed using the intraclass correlation coefficient (ICC), and internal consistency was determined by Cronbach's alpha.ResultsTest-retest reliability was assessed in 70 patients, with an average time interval of 12 days. The ICC was 0.958 (p<0.001). Internal consistency reached Cronbach's alpha of 0.933 for the functional component and 0.870 for the psychosocial component. The correlation coefficient for the K-PDQ when compared with the VAS was 0.834 in the first assessment and 0.831 in the second assessment. All domains of the WHOQOL-BREF showed a significant negative correlation with the K-PDQ.ConclusionThe K-PDQ is a reliable and valid instrument for measuring disability and can be used to assess disability and treatment outcomes in Korean patients with CDMD.

The minimal clinical important difference in the World Health Organization Quality of Life instrument—100

The aim of this study was to estimate the minimal clinical important difference (MCID) of the World Health Organization Quality of Life assessment instrument (WHOQOL-100) for women with early-stage breast cancer. If the MCID is known, then the instrument is also useful for individual patients and thus useful in clinical practice. In this study, the MCID is the smallest change in quality of life (QOL) scores considered clinically relevant for patients. Data were derived from a prospective study in which 223 women with early-stage breast cancer and 383 women with benign breast problems completed the WHOQOL-100. MCID values were determined by two distribution-based methods (0.5 standard deviation (SD) and 1 standard error of measurement (SEM)) and an anchor-based method. For 0.5 SD, MCID estimates ranged from 0.64 to 0.94, and for 1 SEM, MCID estimates ranged from 0.69 to 1.18. The anchor-based approach resulted in MCID estimates ranging from -1.56 to -0.71 for decline and from 0.51 to 1.27 for improvement. A change in score of 1 on the WHOQOL-100 is proposed as the MCID for women with early-stage breast cancer.

A relação dos aspectos profissionais na qualidade de vida dos enfermeiros das equipes Saúde da Família

Este estudo teve como objetivo conhecer os aspectos profissionais relacionados à Qualidade de Vida dos enfermeiros das equipes saúde da família da Macrorregião de Saúde do Triângulo Sul. Trata-se de um estudo descritivo e transversal. Os 90 enfermeiros sujeitos da pesquisa responderam a um questionário contendo as variáveis profissionais e o instrumento para avaliação da Qualidade de Vida WHOQOL-100. Os resultados mostram o impacto negativo do número de vínculos, do vínculo empregatício inseguro, da excessiva carga horária de trabalho e da insatisfação com o trabalho nos domínios da Qualidade de Vida dos enfermeiros. Considera-se necessária a (re)definição de políticas públicas voltadas para as condições de trabalho desses profissionais. Ações que contribuam no desenvolvimento da Qualidade de Vida dos enfermeiros são importantes considerando sua forte influência na qualidade da assistência prestada.

Effects of Family Support on Quality of Life among Alcohol Dependent Patients : Moderating Effect of Abstinence Self-Efficacy

ObjectivesZZQuality of life (QoL) was a important factor of treatment outcome in alcoholics. This study was to examine the relationship between family support and quality of life among alcohol- ics, to explore the moderating effect of abstinence self-efficacy on those relationship and to sug - gest practical implications for intervention services. MethodsZZData for this study were collected through the use of a survey instrument completed by 771 alcohol dependent admitted to inpatient treatment from 20 psychiatric hospital. Subjects were screened using the Family support, Drug Taking Confidence Questionnaire-8, World Health Organization Quality of Life Assessment Instrument. Collected data were analysed by moderated multiple regression and simple slope analysis. ResultsZZFamily support was directly associated with QoL. Also the abstinence self-efficacy had moderating effects on relationship between family support and QoL. Simple slope analysis showed that the effects of family support on QoL were significant at low and high levels of absti - nence self-efficacy and especially the effects of family support on QoL were more higher at the high levels of abstinence self-efficacy. ConclusionZZThis findings suggest that abstinence self-efficacy is an important factor to QoL among alcohol dependents. Increasing self-efficacy, family support will be improve the QoL and recovering process. Based on these findings suggest practical intervention. J Korean Neuropsychiatr Assoc 2012;51:277-284

Quality of Life in Perspective to Treatment of Postoperative Edema After Peripheral Bypass Surgery

To examine the effects of peripheral bypass surgery on patients' quality of life (QoL) as well as to compare two treatment modalities to reduce postoperative edema with regard to patients' QoL. This was a randomized controlled trial set in the department of vascular surgery in a nonacademic teaching hospital. Ninety-three patients (mean age, 70 years; 33% Rutherford 5-6), enrolled between August 2006 and September 2009, who underwent peripheral bypass surgery (autologous 57, polytetrafluoroethylene 36). Patients were assigned to intermittent pneumatic compression (n = 46) or to compression stockings (n = 47). The main outcome measure was QoL, measured with the World Health Organization Quality of Life assessment instrument (short form: WHOQOL-BREF). QoL improved on the domain of Physical Health by 7.18 points (P < 0.001 [range, 0-100]) after 2 weeks and by 10.03 points (P < 0.001) after 3 months. Patients who received a polytetrafluoroethylene bypass scored 0.45 points (P = 0.0008 [range, 1-5]) lower at baseline on Global QoL than patients who received an autologous bypass. Type of bypass or edema treatment method did not affect the improvements. Edema did not correlate with QoL. Improvement in QoL on the domain Physical Health following femoropopliteal bypass surgery was found as soon as 2 weeks after surgery. Improvement in QoL domains was not influenced by the type of bypass reconstruction. No specific effects of edema on QoL were detected.

A Systematic Review of Studies on Quality of Life in Children with Congenital Gastro-Intestinal Anomalies

Background and Aims: Few studies have assessed quality of life (QoL) for children born with major congenital anomalies. We aimed to review studies reporting QoL in children born with congenital gastro-intestinal anomalies requiring neonatal surgery. Methods: The inclusion criteria for this review were: studies published in English from 1990 to 2010, using validated instruments for assessment of QoL in children born with congenital diaphragmatic hernia, oesophageal atresia or abdominal wall defects. Literature search, development of the research protocol and data extraction were performed according to standard systematic review methodology. Results: Of 185 hits, 104 papers were excluded after applying search restrictions and removing duplicates. After scanning 81 abstracts, 32 full-text papers were reviewed, of which 9 were included. All studies measured health-related QoL, none measured subjective wellbeing. Instruments used to assess health-related QoL in children varied considerably. Many studies had major methodological flaws, e.g. from a single institution, retrospective cohorts, low sample size, and/or low follow up rates. There was substantial age variation (children 1-15y). Higher quality papers were from Northern Europe (Netherlands, Norway). Data from the included studies suggest that QoL of children with congenital gastro-intestinal anomalies changes during the life-course and by young adulthood, is comparable with that of the general population. Conclusion: The reviewed studies consider health status and functioning as a major determinant of QoL. Current concepts of QoL suggest that subjective wellbeing should be an integral part of QoL assessment. Further studies need to include age-adjusted, validated instruments to measure QoL throughout the life-course.

Quality of life in children and adults with congenital gastro-intestinal anomalies: a systematic review

BackgroundFew studies have assessed quality of life (QoL) for children born with major congenital anomalies.AimTo review studies reporting QoL in children and adults born with congenital gastro-intestinal anomalies requiring neonatal...