Development and validation of the Pediatric Stroke Quality of Life Measure

Fiume, Andrea; deVeber, Gabrielle; Jang, Shu-Hyun; Fuller, Colleen; Viner, Shani; Friefeld, Sharon

doi:10.1111/dmcn.13684

Cited by 11 publications

(4 citation statements)

References 26 publications

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“…The realization of problems in general in an affected person will draw our attention to these aspects. The organization of the problems into the three subgroups as being, belonging, and becoming, as suggested by Kirou‐Mauro et al is convincing. They have tackled three of the most important areas for children growing into adulthood.…”

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confidence: 75%

“…The analyses of the answers to the many sub questions will further improve our understanding and thus our support for these children and their families. We welcome this new questionnaire from the group of the longstanding Canadian Paediatric Stroke Registry with great pleasure and hope that widespread use will improve not only research in this area, but also help the individual child in the long‐term.…”

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confidence: 99%

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Improved survival after paediatric stroke – but at what price?

Steinlin

2018

Develop Med Child Neuro

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confidence: 75%

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confidence: 99%

Improved survival after paediatric stroke – but at what price?

Steinlin

2018

Develop Med Child Neuro

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“…Nineteen of the measures involved CYP's parents/guardians or carers in item development either alongside CYP in paired interviews or focus groups, or in separate data collection. Four papers gave justification for involving parents or guardians, stating that their perspectives can offer additional valuable and valid insight into CYP's quality of life [24,[42][43][44]. Others also mentioned practical reasons for involving them-to act as proxies in instances where CYP are not able to participate [20,43,45].…”

Section: Characteristics Of Included Studiesmentioning

confidence: 99%

A Systematic Review of the Use and Quality of Qualitative Methods in Concept Elicitation for Measures with Children and Young People

Husbands

Mitchell

Coast

2020

Patient

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Background Qualitative research is recommended in concept elicitation for patient-reported outcome measures to ensure item content validity, and those developing measures are encouraged to report qualitative methods in detail. However, in measure development for children and young people, direct research can be challenging due to problems with engagement and communication. Objectives The aim of this systematic review was to (i) explore the qualitative and adapted data collection techniques that research teams have used with children and young people to generate items in existing measures and (ii) assess the quality of qualitative reporting. Methods Three electronic databases were searched with forward citation and reference list searching of key papers. Papers included in the review were empirical studies documenting qualitative concept elicitation with children and young people. Data on qualitative methods were extracted, and all studies were checked against a qualitative reporting checklist. Results A total of 37 studies were included. The quality of reporting of qualitative approaches for item generation was low, with information missing on sampling, data analysis and the research team, all of which are key to facilitating judgements around measure content validity. Few papers reported adapting methods to be more suitable for children and young people, potentially missing opportunities to more meaningfully engage children in concept elicitation work. Conclusions Research teams should ensure that they are documenting detailed and transparent processes for concept elicitation. Guidelines are currently lacking in the development and reporting of item generation for children, with this being an important area for future research.

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“…There are several questionnaires evaluating diseasespecific quality of life in children, adolescents, and adults with thrombophilia disorders including thromboembolism and pediatric stroke [1,2] or with hereditary and acquired bleeding disorders (HABD) [3][4][5][6][7][8][9]. In patients with bleeding disorders, health-related quality of life (HRQoL) varies with occurrence of bleeds, pain, and related limitations in everyday activities [10].…”

Section: Introductionmentioning

confidence: 99%

Cross-Sectional and Longitudinal Construct Validity of the Generic KINDL-A(dult)B(rief) Questionnaire in Adults with Thrombophilia or with Hereditary and Acquired Bleeding Disorders

et al. 2020

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Background/Aims: The newly adapted generic KINDL-A(dult)B(rief) questionnaire showed satisfactory cross-sectional psychometric properties in adults with bleeding disorders or thrombophilia. This investigation aimed to evaluate its cross-sectional and longitudinal construct validity. Methods: After ethical committee approval and written informed consent, 335 patients (mean age 51.8 ± 16.6 years, 60% women) with either predominant thrombophilia (n = 260) or predominant bleeding disorders (n = 75) participated. At baseline, patients answered the KINDL-AB, the MOS 36-item Short-Form Health Survey (SF-36), and the EQ-5D-3L. A subgroup of 117 patients repeated the questionnaire after a median follow-up of 2.6 years (range: 0.4–3.5). A priori hypotheses were evaluated regarding convergent correlations between KINDL-AB overall well-being and specific subscales, EQ-5D-3L index values (EQ-IV), EQ-5D visual analog scale (EQ-VAS), and SF-36 subscales. Results: Contrary to hypothesis, baseline correlations between the KINDL-AB and EQ-IV/EQ-VAS were all moderate while, as hypothesized, several KINDL-AB subscales and SF-36 subscales correlated strongly. At follow-up, no significant changes in all three instruments occurred. Correlations between instruments over the follow-up were mostly moderate and partially strong. Contrary to hypothesis but consistent with no significant changes in health-related quality of life, convergent correlations between changes in KINDL-AB overall well-being, physical and psychological well-being, and EQ-IV/EQ-VAS were all weak. Conclusions: While repeated measures of KINDL-AB showed moderate to strong correlations, changes in KINDL-AB overall well-being and subscales correlated more weakly than expected with changes involving two established instruments of generic health status.

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Development and validation of the Pediatric Stroke Quality of Life Measure

Cited by 11 publications

References 26 publications

Improved survival after paediatric stroke – but at what price?

Improved survival after paediatric stroke – but at what price?

A Systematic Review of the Use and Quality of Qualitative Methods in Concept Elicitation for Measures with Children and Young People

Cross-Sectional and Longitudinal Construct Validity of the Generic KINDL-A(dult)B(rief) Questionnaire in Adults with Thrombophilia or with Hereditary and Acquired Bleeding Disorders

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