Patient-centred outcome measure design: the perspectives and preferences of children and young people with life-limiting or life-threatening conditions
outcome assessment; adolescent; child; clinical article; conference abstract; feasibility study; female; genetic transcription; human; interview; male; malignant neoplasm; nervous system; pain; preschool child; recall; self report; voice
Background: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) face specific challenges when self-reporting health outcomes, including communication difficulties and sensitivities around subject matter. No ideal self-reported patientcentred outcome measure (PCOM) currently exists for this population. Practical aspects of design need to be considered in line with CYP's preferences and capabilities to ensure meaningful participation in measurement, and to enable child- and family-centred care. Aim(s): To identify preferences for PCOM response format, recall period, administration mode, and length, among CYP with LLLTC. Method(s): Semi-structured qualitative interviews with CYP aged 5-17 years with LLLTC. CYP were purposively sampled from nine UK sites. Verbatim transcripts were analysed in NVivo using Framework analysis with inductive and deductive coding. Result(s): 26 CYP with a range of LLLTC (primary diagnosis: 10 gastrointestinal, 6 cancer, 5 neurological, 3 congenital, 1 metabolic, 1 respiratory) were interviewed. Response format: many participants reported familiarity with numeric response scales, especially for pain. However, most preferred response formats with pictures, most often emojis. Children under 10 years old in particular preferred emojis, while preferences among older CYP were more variable. Recall period: Participants preferred a short recall, either because they cannot remember far back, or they do not want to think about past ill health. Most felt that they could report health-related outcomes from between the past day up to the past week. Older CYP tended to favour longer recall periods compared to younger children. Administration mode: whilst most participants preferred to complete measures electronically or had no preference, a small number had a strong preference for paper-based measures, suggesting PCOMs should be available in multiple formats. Length: ten or fewer questions were preferred. Conclusion(s): CYP with LLLTC interviewed are accustomed to answering questions about their own health and can communicate preferences to inform PCOM design. Generally, they prefer visually appealing response formats, short measures, and electronic administration. Importantly, respondent burden needs to be considered at the design stage, as demonstrated by preferences for a brief measure and short recall period. The results presented have practical implications for design and development of PCOMs for CYP with LLLTC, whose voices must be included early in measure development to ensure acceptability, feasibility, and enhance valid and reliable self-report.
Haroardottir D; Coombes L; Braybrook D; Scott H; Roach A; Bristowe K; Ellis-Smith C; Downing J; Bluebond-Langner M; Laddie J; Hills M; Ramsenthaler C; Fraser LK; Murtagh FEM; Harding R
Quality of Life Research
2023
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<a href="http://doi.org/10.1007/s11136-023-03353-w" target="_blank" rel="noreferrer noopener">10.1007/s11136-023-03353-w</a>
The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncology
cancer; literacy; patient-reported outcomes; pediatric
Age is often used to determine when children can begin completing patient-reported outcome (PRO) instruments or transition to adult instruments. This study’s purpose was to determine relationships between literacy, age, and race and their influence on a child’s ability to understand and complete a PRO instrument.
Withycombe J S; McFatrich M; Pinheiro L; Hinds P S; Keller F G; Baker J N; Mack J W; Sung L; Waldron M K; Reeve B B
Quality of Life Research
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s11136-019-02109-9" target="_blank" rel="noreferrer noopener">10.1007/s11136-019-02109-9</a>
Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review
Cross-Sectional Studies; Young Adult; Child; Humans; Adult; Adolescent; Reproducibility of Results; Biomedical Research; Quality of Life/psychology; Psychometrics; Adverse event self-report; Pediatric oncology; Self Report; Self-report instruments; Medical Oncology/standards
OBJECTIVE: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality self-report instruments to be used in pediatric oncology research studies. This study's objective was to conduct a systematic literature review of existing English language instruments used to measure self-reported symptoms in children and adolescents undergoing cancer treatment. METHODS: A comprehensive literature search was conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published through November 10, 2016. Using pre-specified inclusion/exclusion criteria, six trained reviewers carefully screened abstracts and full-text articles for eligibility. RESULTS: There were 7738 non-duplicate articles identified in the literature search. Forty articles met our eligibility criteria, and within these articles, there were 38 self-report English symptom instruments. Most studies evaluated only cross-sectional psychometric properties, such as reliability or validity. Ten studies assessed an instrument's responsiveness or ability to detect changes in symptoms over time. Eight instruments met our criteria for use in future longitudinal pediatric oncology studies. CONCLUSIONS: This systematic review aids pediatric oncology researchers in identifying and selecting appropriate symptom measures with strong psychometric evidence for their studies. Enhancing the child's voice in pediatric oncology research studies allows us to better understand the impact of cancer and its treatment on the lives of children.
Pinheiro LC; McFatrich M; Lucas N; Walker JS; Withycombe JS; Hinds PS; Sung L; Tomlinson D; Freyer DR; Mack JW; Baker JN; Reeve BB
Quality of Life Research
2018
<a href="http://doi.org/%2010.1007/s11136-017-1692-4" target="_blank" rel="noreferrer noopener">10.1007/s11136-017-1692-4</a>
Self-perceived quality of life of children and adolescents with physical disabilities in Hong Kong
Non-U.S. Gov't; PedPal Lit; Adolescent Analysis of Variance Child Hong Kong Humans; Quality of Life Research Support; Self Assessment (Psychology)
2005
Chow SM; Lo SK; Cummins RA
Quality of Life Research
2005
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Journal Article
<a href="http://doi.org/10.1007/s11136-004-0728-8" target="_blank" rel="noreferrer">10.1007/s11136-004-0728-8</a>
A two-year prospective study of the health-related quality of life of children with chronic illness--the parents' perspective
PedPal Lit; Adolescent Asthma/physiopathology/psychology Child Chronic Disease Diabetes Mellitus/physiopathology/psychology Family Humans Parents/psychology Peer GroupQuality of Life Questionnaires Research Support; Non-U.S. Gov't Schools
The aim of this study was to assess prospectively changes in the health-related quality of life (HRQL) of children and adolescents with diabetes, asthma or cystic fibrosis (CF). One hundred and twenty-two parents of children aged 10-16 years with asthma, diabetes, or CF were recruited from specialist paediatric clinics. Parents described their children's HRQL using the Child Health Questionnaire (PF98) at baseline, 6, 12, 18 and 24 months post-baseline. They reported that the general health of children with CF was significantly worse than that of children with asthma and diabetes at baseline. In other domains there were few differences between the HRQL of children in the three groups. In several domains, the HRQL of children with asthma or diabetes improved over the 2 years of the study. This improvement was less evident for children with CF.
2005
Sawyer MG; Reynolds KE; Couper JJ; French DJ; Kennedy D; Martin J; Staugas R; Baghurst PA
Quality of Life Research
2005
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Journal Article
<a href="http://doi.org/10.1007/s11136-004-0786-y" target="_blank" rel="noreferrer">10.1007/s11136-004-0786-y</a>
Quality of life related to type 1 Gaucher disease: Spanish experience
Humans; Questionnaires; Prospective Studies; Spain; quality of life; IM; Exercise; Gaucher Disease/pp [Physiopathology]
The impact of type 1 Gaucher disease and its therapy on health-related quality of life (QOL) was investigated and the results were compared with a Spanish adult normative group. PATIENTS AND METHODS: Between January 1998 and December 2002, a prospective clinical QOL trial was conducted by application of a Spanish version of the Health Survey SF-36 questionnaire. Patients receiving ERT (69 cases) filled in the questionnaire two times, prior to starting ERT and after two years under ERT. The patients were stratified by gender and age group. Clinical and X-ray data to assess bone disease were obtained from the Spanish Gaucher Register. Demographic, clinical, genotype and analytical data and the response to therapy were evaluated. Four grades of severity were established according to bone disease (no symptoms = 0, moderate bone pain = 1, severe bone crisis = 2, fracture/necrosis = 3). Correlation analysis was made between QOL score and grade of bone disease. RESULTS: Mean age+/-SD 33.6+/-11.7 (range 18-66), M/F,ratio 33/36; bone disease: 0 in 27 patients (47.3%), 1 in 11 (19.3%), 2 in 5 (8.8%) and 3 in 14 (24.5%). Physical activity: 11 patients (19.3%) showed severe restriction and 41 patients (71.9%) were only limited for strenuous activities. The mean score for QOL questionnaire was 11.9+/-10.4 (range 2-46). Correlation between score and bone disease was significant only for 1 and 3 grades (p = 0.02). Improvement in self perception of global health was observed ranging from 34.3% before ERT to 91.4% after ERT (p = 0.001). Nevertheless physical activity remained unsatisfactory in 24.5% of patients due mainly to bone sequelae. COMMENTS: Physical activities and bone disease grade 1 and 3 are negatively related to QOL. Nevertheless no correlation was found with bone pain crisis, possibly due to the transitory character of this event. In spite of the improvement induced by ERT, a quarter of patients remained with physical limitations related to bone disease as well as in need of orthopaedic correction of bone sequelae. In order to improve the QOL an accurate evaluation of bone disease to define therapeutic approaches must be considered.
2005
Giraldo P; Solano V; Perez-Calvo JI; Giralt M; Rubio-Felix D; Spanish Group on Gaucher disease
Quality of Life Research
2005
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Journal Article
<a href="http://doi.org/10.1007/s11136-004-0794-y" target="_blank" rel="noreferrer">10.1007/s11136-004-0794-y</a>
Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective
Epilepsy; PedPal Lit; emotion; 'Independence'; 'Physical'; 'Social Exclusion') with acceptable internal consistency.; 'Social Inclusion'; 13-16 years) with different chronic health conditions (asthma; Adolescent Child Chronic Disease/psychology Disabled Children/psychology Europe Health Status Humans Pilot Projects Quality of Life/psychologyQuestionnaires Research Support; and cystic fibrosis) as well as their families were included. Data were analysed according to predefined psychometric and content criteria. Psychometric an alyses resulted in a 56-item chronic generic HRQOL questionnaire with six domains ('Medication'; and implement European instruments for the assessment of HRQOL of children and adolescents with disabilities and their families. The current paper describes the development and pilot testing of a chronic generic HRQOL measure. Using literature searches; Arthritis; atopic dermatitis; Cerebral Palsy; Diabetes; expert consulting and focus groups with children/adolescents and their families; items of the instruments were developed and translated into the respective languages. A pilot test with 360 children and adolescents was conducted. Children and adolescents (8-12; Non-U.S. Gov'tSickness Impact Profile%X Health-related quality of life (HRQOL) assessment in children and adolescents with chronic health conditions is increasingly considered as a relevant topic. The aim of the EU-funded DISABKIDS project is to develop; test
2005
Petersen C; Schmidt S; Power M; Bullinger M
Quality of Life Research
2005
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Journal Article
<a href="http://doi.org/10.1007/s11136-004-2575-z" target="_blank" rel="noreferrer">10.1007/s11136-004-2575-z</a>
Health-related quality of life of mothers of children with leukemia in Japan
Non-U.S. Gov't; PedPal Lit; 'general health perception' (GH); 'social functioning' (SF) and 'mental health' (MH). Their SF-36 domain scores; 'vitality' (VT); Adolescent Adult Caregivers/psychology Child Child; and are at a greater risk for depression. These results suggest that the current system for treating leukemic diseases of children in Japan should also include close monitoring of mothers' mental health; and compared their scores to those of 240 mothers of children without leukemia matched to the children with leukemia. MAIN RESULTS: Of the eight unadjusted domain scores of the SF-36; and provision of appropriate treatment and psycho-social support.; approximately 20 points (1 standard deviation (SD); five were significantly low among mothers of children with leukemia compared to mothers of children without leukemia: 'role-physical functioning' (RP); GH; Newborn JapanLeukemia/nursing Male Mother-Child Relations Mothers/psychology Quality of Life/psychology Questionnaires Research Support; p < 0.0001) and 30 points (1.5 SD; p < 0.0001) lower than that of mothers of children without leukemia. CONCLUSION: Mothers of children with leukemia requiring hospital care have poor HRQOL; particularly with regard to mental health and social functioning; Preschool Comparative StudyCost of Illness Female Health Status Humans Infant Infant; range 0-14) with leukemia diagnosed between 1999 and 2000; RE and MH. The MH and SF scores in mothers of children with leukemia requiring hospital care w ere; respectively; SF; VT; when adjusted for demographic and clinical factors were also significantly low in RP
2005
Yamazaki S; Sokejima S; Mizoue T; Eboshida A; Fukuhara S
Quality of Life Research
2005
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Journal Article
<a href="http://doi.org/10.1007/s11136-004-3288-z" target="_blank" rel="noreferrer">10.1007/s11136-004-3288-z</a>
Development, reliability and validity of a new measure of overall health for pre-school children
PedPal Lit; Cohort 2 (AUS)-150 VLBW 3-years old from Australia
2005
Saigal S; Rosenbaum P; Stoskopf B; Hoult L; Furlong W; Feeny D; Hagan R
Quality of Life Research
2005
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Journal Article
<a href="http://doi.org/10.1007/s11136-004-4228-7" target="_blank" rel="noreferrer">10.1007/s11136-004-4228-7</a>
Proxy assessment of quality of life in pediatric clinical trials: application of the Health Utilities Index 3
symptoms; U.S. Gov't; PedPal Lit; Extramural Research Support; N.I.H.; Non-U.S. Gov't Research Support; Adolescent ChildClinical Trials Female Health Status Humans Leukemia/drug therapy/physiopathology/psychology MalePediatricsProxy Quality of Life/psychology Research Support; domains specific and sensitive to both disease and treatment; P.H.S.Sickness Impact Profile%X BACKGROUND: With increased cure rates; pediatric oncology protocols increasingly seek to document the impact of treatment on patients' disease; the proxy respondents evaluated the ease of use of the instrument and the data quality. RESULTS: As patients' health status declined
2005
Cox CL; Lensing S; Rai SN; Hinds P; Burghen E; Pui CH
Quality of Life Research
2005
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Journal Article
<a href="http://doi.org/10.1007/s11136-004-4714-y" target="_blank" rel="noreferrer">10.1007/s11136-004-4714-y</a>
Is treatment adherence associated with better quality of life in children with sickle cell disease?
Anemia; PedPal Lit; Preschool HumansPatient ComplianceQuality of Life United States; Sickle Cell/physiopathology/therapy Child Child
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.
2005
Barakat LP; Lutz M; Smith-Whitley K; Ohene-Frempong K
Quality of Life Research
2005
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Journal Article
<a href="http://doi.org/10.1007/s11136-004-5328-0" target="_blank" rel="noreferrer">10.1007/s11136-004-5328-0</a>
Translation and cultural adaptation of Health Utilities Index (HUI) Mark 2 (HUI2) and Mark 3 (HUI3) with application to survivors of childhood cancer in Brazil
PedPal Lit; Sickness Impact Profile Survivors/psychology Translating; Adult Brazil ChildCulture Female Humans Male Neoplasms/ethnology/physiopathology/therapy Psychometrics/instrumentationQuality of Life Quality-Adjusted Life YearsQuestionnaires Research Support; and review of the back-translat ions by original developers of the HUI. The final questionnaires were tested by surveying a sample of convenience of 50 patients recruited at the Centro de Tratamento e Pesquisa-Hospital do Cancer in Sao Paulo; back-translation by two independent translators of the forward translation; Brazil. RESULTS: Fifty patients were enrolled in the study. No assessor; consensus between translators on a forward translation; patient or nurse or physician; preference-based systems for describing health status and HRQL. Developed in Canada; understandabl(TRUNCATED)
2005
Shimoda S; De Camargo B; Horsman J; Furlong W; Lopes LF; Seber A; Barr RD
Quality of Life Research
2005
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Journal Article
<a href="http://doi.org/10.1007/s11136-004-6127-3" target="_blank" rel="noreferrer">10.1007/s11136-004-6127-3</a>
Preliminary psychometric evaluation of the Child Health Ratings Inventory (CHRIs) and Disease-Specific Impairment Inventory-Hematopoietic Stem Cell Transplantation (DSII-HSCT) in parents and children
PedPal Lit
2005
Parsons SK; Shih MC; Mayer DK; Barlow SE; Supran SE; Levy SL; Greenfield S; Kaplan SH
Quality of Life Research
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1007/s11136-005-1004-2" target="_blank" rel="noreferrer">10.1007/s11136-005-1004-2</a>
Psychometrics of Child Health Questionnaire parent short form (CHQ-28) used to measure quality of life in HIV-infected children on complex anti-retroviral therapy
U.S. Gov't; PedPal Lit; Adolescent Antiretroviral Therapy; Highly Active/psychology ChildChild Welfare Child; P.H.S.Sickness Impact Profile; Preschool Disease Transmission; Vertical Female HIV Infections/drug therapy/physiopathology/psychology Humans Male Psychometrics/instrumentationQuality of Life Questionnaires Research Support
2005
Byrne MW; Honig J
Quality of Life Research
2005
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Journal Article
<a href="http://doi.org/10.1007/s11136-005-2750-x" target="_blank" rel="noreferrer">10.1007/s11136-005-2750-x</a>
Validation of the German version of the Pediatric Quality of Life Inventory (PedsQL) in childhood cancer patients off treatment and children with epilepsy
PedPal Lit; Adolescent Child Child; physiopathology; methods Psychometrics; psychology Germany; psychology Parents Pediatrics; psychology Self Assessment (Psychology)Sickness Impact Profile Translating United States; and test the usefulness of the instrument in other clinical populations and healthy children.; epidemiology Humans Neoplasms; instrumentation Quality of Life; Preschool Comparative Study Epilepsy; score distributions tended to be skewed toward higher HRQL; sensitivity and responsiveness; the German PedsQL seems to be equivalent to the original version. Future methodologic research should evaluate construct validity
2004
Felder-Puig R; Frey E; Proksch K; Varni JW; Gadner H; Topf R
Quality of Life Research
2004
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Journal Article
<a href="http://doi.org/10.1023/b:qure.0000015305.44181.e3" target="_blank" rel="noreferrer">10.1023/b:qure.0000015305.44181.e3</a>
The World Health Organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group
quality of life; Psychological; Adolescent Adult Aged Aged; PedPal Lit; 80 and over Child Comparative Study Cross-Cultural Comparison Cross-Sectional Studies Female Humans Male Middle Aged Psychometrics/; 830). Sick and well respondents were sampled from the general population; and to test its main psychometric properties. The WHOQOL-BREF is a 26-item version of the WHOQOL-100 assessment. Its psychometric properties were analysed using cross-sectional data obtained from a survey of adults carried out in 23 countries (n = 11; as reflected by its four domains: physical; as well as from hospital; clinical settings and clinical trials. Using data from the WHOQOL-BREF field trials; cross-culturally valid assessment of QOL; discriminant validity and construct validity through confirmatory factor analysis; indicate that the WHOQOL-BREF has good to excellent psychometric properties of reliability and performs well in preliminary tests of validity. These results indicate that overall; instrumentation; item-total correlations; rehabilitation and primary care settings; serving patients with physical and mental disorders and with respect to quotas of important socio-demographic variables. The WHOQOL-BREF self-assessment was completed; Sickness Impact Profile World Health Organization%X Quality of life (QOL) assessments that are easily administered and which do not impose a great burden on the respondent are needed for use in large epidemiological surveys; social and environment.; the objectives of this work are to examine the performance of the WHOQOL-BREF as an integrated instrument; the WHOQOL-BREF is a sound; together with socio-demographic and health status questions. Analyses of internal consistency
2004
Skevington SM; Lotfy M; O'Connell KA
Quality of Life Research
2004
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Journal Article
<a href="http://doi.org/10.1023/b:qure.0000018486.91360.00" target="_blank" rel="noreferrer">10.1023/b:qure.0000018486.91360.00</a>
Quality of life as conveyed by pediatric patients with cancer
adolescent; U.S. Gov't; PedPal Lit; Non-U.S. Gov't Research Support; psychology Questionnaires Research Support; Adolescent Psychology Cancer Care Facilities Child; Child Psychology Female Humans Interviews Male Neoplasms/physiopathology/; methods Quality of Life/; P.H.S. Self Assessment (Psychology); psychology/therapy Pediatrics Pilot Projects Psychometrics/instrumentation/; Sickness Impact Profile Tennessee; the domain most frequently missing was the meaning of being ill domain. Here we present a new definition of the quality of life of pediatric oncology patients that is based on six domains; this definition may ensure the completeness and sensitivity of these important instruments.
2004
Hinds PS; Gattuso JS; Fletcher A; Baker E; Coleman B; Jackson T; Jacobs-Levine A; June D; Rai SN; Lensing S; Pui CH
Quality of Life Research
2004
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Journal Article
<a href="http://doi.org/10.1023/b:qure.0000021697.43165.87" target="_blank" rel="noreferrer">10.1023/b:qure.0000021697.43165.87</a>
Functional ability, social support, and depression in rheumatoid arthritis
Humans; Adult; Aged; Middle Aged; social support; Netherlands; Longitudinal Studies; Activities of Daily Living; Regression Analysis; Sickness Impact Profile; Depressive Disorder; quality of life; Arthritis; Rheumatoid; Social Support and Chronic Pain
OBJECTIVE: First, to investigate the patterns of functional ability, depressive feelings, and social support in early stage rheumatoid arthritis (RA) patients. Second, to demonstrate the stress buffering effect of social support. Social support is thought to reduce the impact of chronic stress on psychological well-being; for patients without social support the impact of functional ability on depressive feelings will be stronger. METHODS: In 4 waves with an intervening period of 1 year, longitudinal data was collected of 264 Dutch RA patients, of which 65% was female. At T1, the mean age of these patients was 53 years, while their mean disease duration was 22 months. In an interview at the patients' homes, data was collected on functional ability, social support en psychological well-being. The buffering effect of social support was examined by testing the significance of the (computed) stressor by social support interaction term in a regression analysis on depressive feelings. RESULTS: Although large differences between subjects existed, the mean scores on functional ability, social support, and depressive feelings barely changed from year to year. Patients who deteriorated in functional ability during one year had the best chances to improve next year, and visa versa. Furthermore, the stress by support interaction terms had no significant effect on depressive feelings in a regression analysis. CONCLUSIONS: This study demonstrated clearly the fluctuating pattern of RA in the first years after onset. The patients' level of depressive feelings was linearly related to the level of functional ability. Like many other studies, also this study could not provide evidence for the stress buffering effect of social support.
2004-08
Doeglas DM; Suurmeijer Th PBM; van den Heuvel WJA; Krol B; van Rijswijk MH; van Leeuwen MA; Sanderman R
Quality of Life Research
2004
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Journal Article
<a href="http://doi.org/10.1023/b:qure.0000031339.04589.63" target="_blank" rel="noreferrer">10.1023/b:qure.0000031339.04589.63</a>
How well do parents know their children? Implications for proxy reporting of child health-related quality of life
PedPal Lit; 26 and 11% of the parents gave > or = 3 and 6 > or = DK responses to 33 items comprising the PPQ. DK responses were associated with child's age and clinical co ndition; Adolescent Chi-Square Distribution ChildChild Welfare Female Humans MaleOral Health Parents/psychologyProxyQuality of Life Questionnaires Research Support; given that parental and child reports are measuring different realities; imputation of the value zero and adjustment of scores to account for items with DK responses. RESULTS: Respectively; information provided by parents is useful even if it is incomplete.; item mean imputation; Non-U.S. Gov't%X OBJECTIVES: This study examined parental knowledge of their children's oral-health-related quality of life (OHRQoL) (Objective 1)
2004
Jokovic A; Locker D; Guyatt G
Quality of Life Research
2004
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Journal Article
<a href="http://doi.org/10.1023/b:qure.0000037480.65972.eb" target="_blank" rel="noreferrer">10.1023/b:qure.0000037480.65972.eb</a>
A review of subjective impact measures for use with children and adolescents with epilepsy
Sickness Impact Profile; Psychology; PedPal Lit; Adolescent Child Child; instrumentation Quality of Life; physiopathology/psychology Female Great Britain Humans Male Outcome Assessment (Health Care) Psychometrics/; Preschool Epilepsy/
2004
Cowan J; Baker GA
Quality of Life Research
2004
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Journal Article
<a href="http://doi.org/10.1023/b:qure.0000040796.54498.69" target="_blank" rel="noreferrer">10.1023/b:qure.0000040796.54498.69</a>