Validity and Reliability of the German Version of the CP QOL-Child and CP QOL-Teen Questionnaire

2021 ◽  
Author(s):  
Manuel Maier ◽  
Corinna Stoltenburg ◽  
Akosua Sarpong-Bengelsdorf ◽  
Susanne Lebek
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Children And Adolescents ◽  
Well Being ◽  
Self Report ◽  
Life Questionnaire ◽  
German Version ◽  
Validity And Reliability ◽  
German Speaking

AbstractThe aim of the study was to determine the psychometric properties of the German version of the Cerebral Palsy Quality of Life Questionnaire for Children and Adolescents (CP QOL-Child and -Teen). It is a condition-specific questionnaire with a self-report version, measuring well-being rather than ill-being, which differs from existing measurement methods. Fourteen children (9–12 years) and 64 caregivers (4–12 years) answered the child questionnaire. Twenty-one adolescents and 26 caregivers (all adolescents 13–18 years) replied to the teen version. Functioning was categorized by the Gross Motor Function Classification System. For CP QOL-child internal consistency (Cronbach's α) ranged from 0.58 to 0.88 and for CP QOL-Teen from 0.68 to 0.95. Test–retest reliability after 2 to 4 weeks ranged between 0.75 and 0.94 in children's version and 0.89 and 0.96 in teen's version. Correlation with well-established generic KIDSCREEN-10 questionnaire was moderate to strong. The German versions of CP QOL-Child and -Teen are appropriate tools for assessing the quality of life of children and adolescents with cerebral palsy in the German-speaking population.

Children and adolescents with cerebral palsy have reliable knowledge about their own condition - Self- and parent reported quality of life

2019 ◽  
Author(s):  
Melinda Fejes ◽  
Varga Beatrix ◽  
Hollody Katalin
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
General Population ◽  
Children And Adolescents ◽  
Well Being ◽  
Home Life ◽  
European Values ◽  
Reliable Knowledge ◽  
Parent Relation

Abstract Background: to assess health related quality of life (HRQoL) of children (8–12 years) and adolescents (13–18 years) with cerebral palsy (CP) and to compare it with age-matched healthy control children from the general population (GP). Methods: prospective cohort study. HRQoL was self-reported by KIDSCREEN questionnaires. 99 families with children with CP and 237 children from the GP and their parents were enrolled. Collected data were evaluated and compared to each other across all dimensions of KIDSCREEN: European values compared to our GP’ groups, scores of children with CP and of their parents with general population groups (both children and parents); parents’ reports with childrens’,child and adolescent reports, age, sex, special features of CP on HRQoL. Results: patients with CP and their parents rated their HRQoL as poorer than their GP counterparts did, except for the parent relation/home life and social support/peers dimensions. Reports given by children and their parents were correlated. Children and adolescents had similar scores. Assessments of children and their parents were in a medium-strong positive relationship regarding psychological well-being, moods/emotions, self-perception, autonomy, parent relation/home life dimensions (0.552

scholarly journals Emotional well-being and social support as important factors affecting the quality of life of parents of a child with cerebral palsy

2019 ◽  
Vol 18 ◽  
pp. e019002
Author(s):  
Katarína Molnárová Letovancová ◽  
Miriam Slaná ◽  
Michaela Hromková
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Cerebral Palsy ◽  
Well Being ◽  
Average Score ◽  
Family Quality Of Life ◽  
Life Questionnaire ◽  
Quality Of Life Scale ◽  
Children With Cerebral Palsy

The birth of a child with cerebral palsy is an enormous challenge for the parents which has a direct impact on their quality of life. Therefore, we believe it is important to pay attention to this topic. To that end, we conducted research on the quality of life of parents of children with cerebral palsy in 2018. To achieve our goal, we applied quantitative research strategy and used a valid research tool, i.e. a standardized quality of life questionnaire – Family Quality of Life Scale ("FQOL"). The average score reached by respondents was 94.0918 points which indicates a higher quality of life in respondents than expected. The evaluation of the average score for each dimension of the scale showed that respondents scored the lowest in the "Emotional Well-Being" dimension (13.2551 points) and "Social Support" (15.6429 points). The research further confirmed that there were statistically significant differences in the quality of life of respondents depending on their age (t = -2.341, p = 0.021), marital status (F = 3.476, p = 0.019) and the territorial region (χ2 = 15.39, p = 0.031). A statistically significant relationship between the quality of life of respondents and the age of the child with cerebral palsy (0.288 **, p = 0.004) was confirmed. Despite a relatively high score that indicated a higher quality of life in respondents, the research identified two areas in which parents of children with cerebral palsy had a lower quality of life, namely, their emotional well-being and social support.

Reliability and validity of the Functional Assessment of Cancer Therapy-Breast quality-of-life instrument.

1997 ◽  
Vol 15 (3) ◽  
pp. 974-986 ◽  
Author(s):  
M J Brady ◽  
D F Cella ◽  
F Mo ◽  
A E Bonomi ◽  
D S Tulsky ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Cancer Therapy ◽  
Functional Assessment ◽  
Performance Status ◽  
Well Being ◽  
Self Report ◽  
Sensitivity To Change ◽  
Validity And Reliability

PURPOSE This is the first published report on the validation of the Functional Assessment of Cancer Therapy-Breast (FACT-B), a 44-item self-report instrument designed to measure multidimensional quality of life (QL) in patients with breast cancer. The FACT-B consists of the FACT-General (FACT-G) plus the Breast Cancer Subscale (BCS), which complements the general scale with items specific to QL in breast cancer. The FACT-B was developed with an emphasis on patients' values and brevity and is available in nine languages. METHODS AND RESULTS Two validation samples were used for this report. The first (n = 47) was tested twice over a 2-month period to assess sensitivity to change. Significant sensitivity to change in performance status rating (PSR) was demonstrated for the FACT-B total score, the Physical Well-Being (PWB) subscale, the Functional Well-Being (FWB) subscale, and the BCS. Sensitivity to change in QL as measured by the Functional Living Index-Cancer (FLIC) was documented in the FACT-B total score, PWB, FWB, and Emotional Well-Being (EWB). Additional validity and reliability data were obtained from a larger sample (n = 295). The alpha coefficient (internal consistency) for the FACT-B total score was high (alpha = .90), with subscale alpha coefficients ranging from .63 to .86. Evidence supported test-retest reliability, as well as convergent, divergent, and known groups validity. CONCLUSION The FACT-B is appropriate for use in oncology clinical trials, as well as in clinical practice. It demonstrates ease of administration, brevity, reliability, validity, and sensitivity to change.

scholarly journals Health-related quality of life in children and adolescents with cerebral palsy

2017 ◽  
Vol 56 (1) ◽  
pp. 1-10 ◽  
Author(s):  
Anja Radsel ◽  
Damjan Osredkar ◽  
David Neubauer
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Children And Adolescents ◽  
Social Inclusion ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Mean

Abstract Introduction In a cross-sectional cohort study, health-related quality of life of Slovenian children and adolescents with cerebral palsy was examined, and factors associated with it have been identified. Methods Caregivers of 122 children and adolescents with cerebral palsy were addressed to fill out proxy versions of HRQoL questionnaires (DISABKIDS generic and cerebral palsy module). Children and adolescents without cognitive deficit were asked to fill out the self-report versions. Results Ninety-one families of 43 children (the mean age is 10 years, 6 months, SD 1.2; 26 males and 17 females) and 48 adolescents (the mean age is 14 years, SD 0.9; 23 males and 25 females) completed proxyreports. Forty-eight individuals were able to self-report (26 children and 22 adolescents). Health-related quality of life was perceived as good. Self-reporting participants scored higher than their caregivers (mean score 75.6, SD 15.9 versus mean 72.3, SD 17.9; p=0.048). Adolescents scored lower than children in all domains (mean score 69.4, SD 19.4 versus mean 80.8, SD 10.0; p=0.01). Higher age (p<0.001), pain (p<0.001) and disturbed sleep (p=0.002) were strong predictors of worse health-related quality of life. Social Inclusion and Independence domains received the lowest scores. Conclusions Slovenian children and adolescents with cerebral palsy have a good health-related quality of life, with Social Inclusion and Independence being the weakest domains. Children reported higher scores than adolescents or their caretakers. Pain was the strongest predictor of poor health-related quality of life.

scholarly journals Protocol for a systematic review of instruments for the assessment of quality of life and well-being in children and adolescents with cerebral palsy

BMJ Open ◽  
2017 ◽  
Vol 7 (9) ◽  
pp. e015924 ◽  
Author(s):  
Christine Mpundu-Kaambwa ◽  
Gang Chen ◽  
Elisabeth Huynh ◽  
Remo Russo ◽  
Julie Ratcliffe
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Cerebral Palsy ◽  
Young People ◽  
Children And Adolescents ◽  
Well Being ◽  
Measurement Properties ◽  
Cochrane Library ◽  
Economic Evaluations

IntroductionCerebral palsy is the most common cause of physical disability in children and adolescents and is associated with impairments that may reduce the quality of life (QOL) of this population. Patient-reported outcome measures (PROMs) can facilitate the assessment of the effect of disease and treatment on QOL, from a patient viewpoint. The purpose of this systematic review is to identify PROMs that are used to measure QOL and subjective well-being (SWB) outcomes in young people with cerebral palsy and to evaluate the suitability of these PROMs for application in economic evaluations within this population.Methods and analysisMEDLINE, Scopus, the Cochrane Library, Web of Science Core Collection, EconLit, PsycINFO, CINAHL, EMBASE and Informit will be systematically searched from inception to date of search. Published peer-reviewed, English-language articles reporting PROMs measuring QOL or SWB outcomes in children and adolescents with cerebral palsy will be included. One reviewer will conduct the initial search and screen titles and abstracts for potentially eligible studies. The search will be performed in November 2017. To reduce the likelihood of reviewer selection bias, two other reviewers will independently screen a randomly selected subsample (10%) of the citations. Two reviewers will then retrieve full texts of potentially eligible studies and assess them against predefined inclusion criteria. The suitability of selected PROMs for use in economic evaluations of young people with cerebral palsy will be assessed using the International Society of Quality of Life Research recommended Minimum Standards and the Patient-Centered Outcomes and Comparative Effectiveness Research checklist. A narrative synthesis of extracted data will be presented including study descriptive data, PROMs measurement properties, settings in which they were applied and the valuation methods. Recommendations for practice on the selection of PROMs for use in economic evaluations of children and adolescents with cerebral palsy will be presented.Ethics and disseminationEthical approval is not required as the proposed systematic review will not use primary data. The results of this study will be widely disseminated through publication in a peer-reviewed journal and conference presentation(s).Systematic review registration numberInternational Prospective Register of Systematic Reviews number: CRD42016049746.

scholarly journals Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review

2015 ◽  
Vol 23 (4) ◽  
pp. 769-777 ◽  
Author(s):  
Eliza Cristina Macedo ◽  
Leila Rangel da Silva ◽  
Mirian Santos Paiva ◽  
Maria Natália Pereira Ramos
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Caregiver Burden ◽  
Chronically Ill ◽  
Self Report ◽  
Integrative Review ◽  
World Health ◽  
Life Questionnaire ◽  
World Health Organization Quality

AbstractObjective:to identify and analyze the evidence available regarding evaluation of burden and quality of life of mothers who are caregivers for children and adolescents with chronic illnesses.Method:an integrative review, undertaken in the electronic sources MEDLINE; Academic Search Premier; CINAHL; LILACS; SciELO and PubMed, between 2010 and 2014.Results:among the 22 documents selected, there was a predominance of convenience samples and non-experimental transversal designs, at the levels IV and III2. The caregiver burden scales used were the Zarit Burden Interview and Montgomery-Borgatta Caregiver Burden Scale-Revised along with the following instruments for evaluating quality of life: The World Health Organization Quality of Life-BREF Scale; Self-report questionnaires; The Ulm Quality of Life Inventory for Parents of chronically ill children; Asthma Caregiver Quality of Life Questionnaire; and the Nottingham Health Profile. Quality-of-life appears to be influenced in a complex and interrelated way by the physical and mental health of the mothers who are caregivers, in accordance with their level of independence, social relationships, environment, and the extent to which they see themselves as burdened.Conclusion: the revealing of the results for the evaluation of burden and quality of life of mothers who are caregivers has implications for the planning and implementation of effective interventions, by the multidisciplinary team, if they are to relieve the burden.

scholarly journals Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cerebral Palsy ◽  
Young People ◽  
General Population ◽  
Transition Period ◽  
Well Being ◽  
Personal Factors ◽  
The Impact

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

Quality of life in multiple sclerosis patients in Spain

2002 ◽  
Vol 8 (6) ◽  
pp. 527-531 ◽  
Author(s):  
C-H Chang ◽  
D Cella ◽  
O Fernández ◽  
G Luque ◽  
P de Castro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Well Being ◽  
Cross Sectional Study ◽  
Self Report ◽  
Regression Analyses ◽  
Cross Sectional ◽  
Scale Scores ◽  
Multiple Sclerosis Patients

Objective: The cross-sectional study evaluated the psychometric properties of the Functional Assessment of Multiple Sclerosis (FAMS) Spanish version and its use in measuring quality of life (QOL) of multiple sclerosis (MS) patients in Spain. Methods: The FAMS is a factorially derived self-report scale designed to assess six primary aspects of QOL of patients with MS: Mobility, Symptoms, Emotional Well-Being, General Contentment, Thinking and Fatigue, and Family/Social Well-Being. Its Spanish translated version was used to assess QOL of 625 MS patients recruited in an outpatient clinic setting from 58 hospitals in Spain. Internal consistency of the Spanish FAMS was evaluated. Multiple regression analyses were performed to identify significant predictors from demographic, clinical and treatment characteristics, and Kurtzke Expanded Disability Status Scale (EDSS) scores in predicting FAMS scale scores. Results: Most of the patients are females (66%), and 74% were of the relapsing-remitting (RR) clinical subtype. Cronbach’s alpha coefficients were high (range=0.78-0.96), indicating subscale homogeneity comparable to that of the original English version. Linear multivariate regression analyses revealed that the EDSS is a dominant variable in predicting all the FAMS subscales, especially mobility (R2=0.51) and the total scores. Conclusions: The Spanish FAMS is a psychometrically valid instrument that allows clinicians and clinical researchers the ability to measure the QOL concerns of MS patients in Spain.

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