The PedsQL™ Infant Scales: feasibility, internal consistency reliability, and validity in healthy and ill infants

Varni, James W.; Limbers, Christine A.; Neighbors, Katie; Schulz, Kris; Lieu, Judith E. C.; Heffer, Robert W.; Tuzinkiewicz, Krista; Mangione-Smith, Rita; Zimmerman, Jerry J.; Alonso, Estella M.

doi:10.1007/s11136-010-9730-5

Cited by 206 publications

(227 citation statements)

References 33 publications

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“…Note that the fourth item of both versions, can cause the presented effect, since studies indicate that participants with some problem or limitation of health can present a sense of negation (22) and on the other hand parents of children and adolescents with some limitation tend to underestimate their health or even weaken it (23)(24) . Yet Abbott et al (5) indicate that CF patients tend to have a ceiling effect and caution should be taken so that it does not limit the responsiveness of the instrument, since it changes over time cannot be assigned to the interventions but the presence of this effect.…”

Section: Discussionmentioning

confidence: 99%

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Adaptação cultural e propriedades psicométricas iniciais do instrumento DISABKIDS ® – Cystic Fibrosis Module – versão brasileira

Santos

Deon

Fegadolli

et al. 2013

Rev. esc. enferm. USP

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RESUMOEste estudo objetivou adaptar culturalmente e descrever as propriedades psicométricas iniciais do instrumento de mensuração de qualidade de vida relacionada à saú-de DISABKIDS® − Cystic Fibrosis Module para crianças e adolescentes e seus pais/ cuidadores. Estudo metodológico de desenvolvimento sequencial, incluindo 126 participantes em quatro estados brasileiros. Envolveu tradução e retrotradução dos itens, equivalência conceitual e semântica, validade de face e descrição das propriedades psicométricas iniciais relacionadas ao construto e fidedignidade. Para equivalência semântica da versão adaptada houve ajustes na redação de um item. O instrumento apresentou consistência interna satisfatória com valores de alfa de Cronbach entre 0,70 e 0,85, validade convergente com valores de correlação acima 0,40 em 85% dos itens e validade divergente com valores de ajuste superiores a 75%. A versão brasileira do DISABKIDS® -CFM certamente se constituirá em um instrumento válido e confiável para a mensuração da qualidade de vida de crianças e adolescentes brasileiros com fibrose cística. DESCRITORES RESUMENEste estudio tuvo como objetivo adaptar culturalmente y describir las propiedades psicométricas iniciales del instrumento de medida de la calidad de vida relacionada a la salud, DISABKIDS® -Cystic Fibrosis Module para niños/adolescentes y sus padres/cuidadores. Estudio metodológico de desarrollo secuencial, incluyendo 126 participantes en cuatro estados brasileños. Envolvió la traducción y retro-traducción de los ítems, la equivalencia conceptual y semántica, la validez externa y la descripción de las propiedades psicométricas iniciales con relación al constructo y la confiabilidad. Para la equivalencia semántica de la versión adaptada hubo ajustes en la redacción de un ítem. El instrumento presentó consistencia interna satisfactoria con valores de alfa de Cronbach entre 0,70 y 0,85, validez convergente con valores de correlación superiores a 0,40 en 85% de los ítems y validez divergente con valores de ajuste superiores a 75%. La versión brasileña del DISABKIDS® -CFM ciertamente será un instrumento válido y confiable para medir la Calidad de Vida de niños y adolescentes con fibrosis quística.

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Section: Discussionmentioning

confidence: 99%

“…The substantial agreement among parents or caregivers and children and adolescents is very important, since after validated and in the impossibility of the usage of the self version, either for physical, clinical or psychological reasons of the participants, the proxy instrument may be used (24) .…”

Section: Discussionmentioning

confidence: 99%

Adaptação cultural e propriedades psicométricas iniciais do instrumento DISABKIDS ® – Cystic Fibrosis Module – versão brasileira

Santos

Deon

Fegadolli

et al. 2013

Rev. esc. enferm. USP

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“…16 The QOL study described in this paper was performed using the PedsQL 4.0, developed by Dr. James W. Varni (http://www.pedsql.org). 4,[26][27][28][29][30][31] The German, Spanish, and Croatian translations of the PedsQL 4.0 were used. 9,10,15 Table 2 summarizes the 23 items calculated into the final QOL scores.…”

Section: Methodsmentioning

confidence: 99%

“…This latter aspect is especially useful given that the current study design is necessarily retrospective. 4,9,10,15,[26][27][28][29][30][31] …”

mentioning

confidence: 99%

Quality of life after surgical treatment of primary intramedullary spinal cord tumors in children

Schneider¹,

Hidalgo²,

Schmitt‐Mechelke

et al. 2014

PED

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Object Presently, the best available treatment for intramedullary spinal cord tumors (IMSCTs) in children is microsurgery with the objective of maximal tumor removal and minimal neurological morbidity. The latter has become manageable with the development and standard use of intraoperative neurophysiological monitoring. Traditionally, the perioperative neurological evaluation is based on surgical or spinal cord injury scores focusing on sensorimotor function. Little is known about the quality of life after such operations; therefore, this study was designed to investigate the impact of surgery for IMSCTs on the quality of life in children. Methods Twelve consecutive pediatric patients treated for IMSCT were included in this retrospective fixed cohort study. A multidimensional questionnaire-based quality of life instrument, the Pediatric Quality of Life Questionnaire version 4 (PedsQL 4.0), was chosen to analyze follow-up data. This validated instrument particularly allows for a comparison between a patient cohort and a healthy pediatric sample population. Results Of 11 mailed questionnaires (1 patient had died of progressive disease), 10 were returned, resulting in a response rate of 91%. There were 8 low-grade lesions (5 pilocytic astrocytomas, 1 ganglioglioma, 1 hemangioblastoma, and 1 cavernoma) and 4 high-grade lesions (2 anaplastic gangliogliomas, 1 glioblastoma, and 1 glioneuronal tumor). The mean age at diagnosis was 7.5 years, the mean follow-up was 4.2 years, and 83% of the patients were male. Total resection was achieved in 5 patients and subtotal resection in 7. Four patients had undergone 2 or more resections. The 4 patients with high-grade tumors and 2 with incompletely resected low-grade tumors underwent adjuvant treatment (2 chemotherapy and 4 both radiotherapy and chemotherapy). The mean modified McCormick Scale score at the time of diagnosis was 1.7; at the time of follow-up, 1.5. The mean PedsQL 4.0 total score in the low-grade group was 78.5; in the high-grade group, 82.6. There was no significant difference in PedsQL 4.0 scores between the patient cohort and the normal population. Conclusions In a small cohort of children who had undergone surgery for IMSCTs with a mean follow-up of 4.2 years, quality of life scores according to the PedsQL 4.0 instrument were not different from those in a normal sample population.

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“…l Child Health and Illness Profile (CHIP) -age groups and short/long (four versions) 74 l Child Health Questionnaire (CHQ) -child/parent and short/long (three versions) [75][76][77] l Functional Status II Revised (FSIIR) -age group and short/long (six versions) 78 l KIDSCREEN -long/short (three versions) [79][80][81] l KINDL -age group (three versions) 82 l Pediatric Quality of Life Inventory (PedsQL) -age group and short/long (10 versions) [83][84][85] l Personal Wellbeing Index (PWI) -revised and age groups (three versions) 86 l Student Life Satisfaction Scale (SLSS) 87 /Multidimensional SLSS (MSLSS) -revised and short/long (three versions) [88][89][90] l Youth Quality of Life instrument (YQoL) -short/long (two versions).…”

Section: Generic Patient-reported Outcome Measuresmentioning

confidence: 99%

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

Morris

Janssens

Allard

et al. 2014

Health Services and Delivery Research

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BackgroundThe identification of suitable outcome measures will improve the evaluation of integrated NHS care for the large number of children affected by neurodisability, and has the potential to encourage the provision of more appropriate and effective health care. This research sought to appraise the potential of patient-reported outcome measures (PROMs) for children and young people with neurodisability.AimThis research aimed (i) to identify key outcomes of health care for children with neurodisability, beyond morbidity and mortality, from the perspectives of children, parents and professionals; (ii) to critically appraise existing generic multidimensional PROMs; and (iii) to examine whether or not the key outcomes might be measured by existing PROMs. We also sought agreement on a definition of neurodisability.MethodsData were gathered in three main ways, (i) a systematic review identified eligible generic multidimensional PROMs and peer-reviewed studies evaluating psychometric performance using English-language questionnaires. Studies were appraised for methodological quality and psychometric performance was appraised using standard criteria. (ii) Focus groups and interviews with children and young people with neurodisability, and separately with parents, sought to identify important outcomes of NHS care, and their feedback on example PROM questionnaires. (iii) An online Delphi survey was conducted with a multidisciplinary sample of health professionals to seek agreement on appropriate NHS outcomes. In addition, we convened a consensus meeting with a small nominal group of young people, parents and professionals; the group sought agreement on a core set of important health outcomes.ResultsFrom the systematic review, we identified 126 papers that reported eligible evidence regarding the psychometric performance of 25 PROMs. Evidence of psychometric robustness was more favourable for a small number of PROMs: KIDSCREEN (generic), DISABKIDS (chronic-generic) and Child Health Utility 9D (preference-based measure). The Pediatric Quality of Life Inventory and KINDL offer both self-report and a proxy report version for a range of age bands, but evidence of their psychometric performance was weaker. Evidence was lacking in one or more respects for all candidate PROMs, in both general populations and those with neurodisability. Proxy reporting was found generally to be poorly correlated with self-report. Focus groups and interviews included 54 children and young people, and 53 parents. The more important health outcomes were felt to be communication, emotional well-being, pain, mobility, independence/self-care, worry/mental health, social activities and sleep. In addition, parents of children with intellectual impairment identified behaviour, toileting and safety as important outcomes. Participants suggested problems with the face validity of example PROM questionnaires for measuring NHS care. In the Delphi survey, 276 clinicians from a wide range of professions contributed to at least one of four rounds. Professionals rated pain, hearing, seeing, sleep, toileting, mobility and communication as key goals for the NHS but also identified treating neurological symptoms as important. Professionals in the Delphi survey and parents working with the research team agreed a proposed definition for neurodisability. The consensus meeting confirmed overlap between the outcomes identified as important by young people, parents and professionals, but not complete agreement.ConclusionsThere was agreement between young people, parents and professionals regarding a core suite of more important health outcomes: communication, emotional well-being, pain, mobility, independence/self-care, worry/mental health, social activities and sleep. In addition, behaviour, toileting and safety were identified as important by parents. This research suggests that it would be appropriate to measure these constructs using PROMs to assess health care. None of the candidate PROMs in the review adequately captures all of the identified constructs, and there is inadequate evidence that candidate PROMs are psychometrically robust for use across children with neurodisability. Further consultation with young people, families and professionals is warranted to support the use of PROMs to measure NHS outcomes. Research to test potential PROMs with different age groups and conditions would be valuable.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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The PedsQL™ Infant Scales: feasibility, internal consistency reliability, and validity in healthy and ill infants

Abstract: The results demonstrate the initial measurement properties of the PedsQL™ Infant Scales in healthy and ill infants. The findings suggest that the PedsQL™ Infant Scales may be utilized in the evaluation of generic HRQOL in infants ages 1-24 months.

Cited by 206 publications

References 33 publications

Adaptação cultural e propriedades psicométricas iniciais do instrumento DISABKIDS ® – Cystic Fibrosis Module – versão brasileira

Adaptação cultural e propriedades psicométricas iniciais do instrumento DISABKIDS ® – Cystic Fibrosis Module – versão brasileira

Quality of life after surgical treatment of primary intramedullary spinal cord tumors in children

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

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