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- Algurén, Beatrix, 1977, et al.
(författare)
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Development of an international standard set of patient-centred outcome measures for overall paediatric health: a consensus process
- 2021
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Ingår i: Archives of Disease in Childhood. - : BMJ. - 0003-9888 .- 1468-2044. ; 106:9, s. 868-876
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Tidskriftsartikel (refereegranskat)abstract
- Objective To develop an Overall Pediatric Health Standard Set (OPH-SS) of outcome measures that captures what matters to young people and their families and recognising the biopsychosocial aspects of health for all children and adolescents regardless of health condition. Design A modified Delphi process. Setting The International Consortium for Health Outcomes Measurement convened an international Working Group (WG) comprised of 23 international experts from 12 countries in the field of paediatrics, family medicine, psychometrics as well as patient advisors. The WG participated in 11 video-conferences, through a modified Delphi process and 9 surveys between March 2018 and January 2020 consensus was reached on a final recommended health outcome standard set. By a literature review conducted in March 2018, 1136 articles were screened for clinician and patient-reported or proxy-reported outcomes. Further, 4315 clinical trials and 12 paediatric health surveys were scanned. Between November 2019 and January 2020, the final standard set was endorsed by a patient validation (n=270) and a health professional (n=51) survey. Results From a total of 63 identified outcomes, consensus was formed on a standard set of outcome measures that comprises 10 patient-reported outcomes, 5 clinician-reported measures, and 6 case-mix variables. The four developmental age-specific packages (ie, 0–5, 6–12, 13–17, 18–24 years) include either five or six measures with an average time for completion of 20min. Conclusions The OPH-SS is a starting point to drive value-based paediatric healthcare delivery from a global perspective for enhancing child and adolescent physical health and psychosocial well-being.
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| 2. |
- Dalaei, Farima, et al.
(författare)
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Body Contouring Surgery after Bariatric Surgery Improves Long-Term Health-Related Quality of Life and Satisfaction with Appearance : An International Longitudinal Cohort Study Using the BODY-Q
- 2024
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Ingår i: Annals of Surgery. - 0003-4932. ; 279:6, s. 1008-1017
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To examine health-related quality of life (HRQL) and satisfaction with appearance in patients who have undergone bariatric surgery (BS) with or without subsequent body contouring surgery (BCS) in relation to the general population normative for the BODY-Q. Background: The long-term impact of BS with or without BCS has not been established using rigorously developed and validated patient-reported outcome measures. The BODY-Q is a patient-reported outcome measure developed to measure changes in HRQL and satisfaction with appearance in patients with BS and BCS. Methods: Prospective BODY-Q data were collected from 6 European countries (Denmark, the Netherlands, Finland, Germany, Italy, and Poland) from June 2015 to February 2022 in a cohort of patients who underwent BS. Mixed-effects regression models were used to analyze changes in HRQL and appearance over time between patients who did and did not receive BCS and to examine the impact of patient-level covariates on outcomes. Results: This study included 24,604 assessments from 5620 patients. BS initially led to improved HRQL and appearance scores throughout the first postbariatric year, followed by a gradual decrease. Patients who underwent subsequent BCS after BS experienced a sustained improvement in HRQL and appearance or remained relatively stable for up to 10 years postoperatively. Conclusions: Patients who underwent BCS maintained an improvement in HRQL and satisfaction with appearance in contrast to patients who only underwent BS, who reported a decline in scores 1 to 2 years postoperatively. Our results emphasize the pivotal role that BCS plays in the completion of the weight loss trajectory.
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| 3. |
- Klassen, Anne F., et al.
(författare)
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Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries
- 2018
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Ingår i: CMAJ. - : CMA Joule Inc.. - 0820-3946. ; 190:15, s. 455-462
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Patients with cleft lip and/or palate can undergo numerous procedures to improve appearance, speech, dentition and hearing. We developed a cleft-specific patientreported outcome instrument to facilitate rigorous international measurement and benchmarking. METHODS: Data were collected from patients aged 8-29 years with cleft lip and/or palate at 30 hospitals in 12 countries between October 2014 and November 2016. Rasch measurement theory analysis was used to refine the scales and to examine reliability and validity. Normative CLEFT-Q values were computed for age, sex and cleft type. RESULTS: Analysis led to the refinement of an eating and drinking checklist and 12 scales measuring appearance (of the face, nose, nostrils, teeth, lips, jaws and cleft lip scar), health-related quality of life (psychological, social, school, speech distress) and speech function. All scales met the requirements of the Rasch model. Analysis to explore differential item functioning by age, sex and country provided evidence to support the use of a common scoring algorithm for each scale for international use. Lower (worse) scores on CLEFT-Q scales were associated with having a speech problem, being unhappy with facial appearance, and needing future cleft-related treatments, providing evidence of construct validity. Normative values for age, sex and cleft type showed poorer outcomes associated with older age, female sex and having a visible cleft. INTERPRETATION: The CLEFT-Q represents a rigorously developed instrument that can be used internationally to collect and compare evidence-based outcomes data from patients aged 8-29 years of age with cleft lip and/or palate.
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| 4. |
- Tsangaris, Elena, et al.
(författare)
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Translation and cultural adaptation of the CLEFT-Q into Arabic, Dutch, Hindi, Swedish, and Turkish
- 2018
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Ingår i: European Journal of Plastic Surgery. - : Springer Science and Business Media LLC. - 0930-343X .- 1435-0130. ; 41:6, s. 643-652
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Tidskriftsartikel (refereegranskat)abstract
- Background: Treatment for cleft lip and/or palate (CL/P) involves a multidisciplinary team of experts who aim to improve ones’ appearance, health-related quality of life, and speech function. To appropriately measure outcomes in CL/P from the patient perspective, a CL/P-specific patient-reported outcome (PRO) instrument is needed. The CLEFT-Q is a self-report PRO instrument developed to evaluate treatment outcomes in patients with CL/P. The aim of this study was to translate and culturally adapt the CLEFT-Q. Methods: The CLEFT-Q was translated and culturally adapted from English into Arabic, Dutch, Hindi, Swedish, and Turkish using guidelines set forth by the International Society for Pharmacoeconomics and Outcomes Research. For each language, two forward translations, one back translation, and cognitive debriefing interviews with patients were conducted. Results: The field test version of the CLEFT-Q consisted of 154 items across 13 scales. Forward translations for each language revealed few items that were difficult to translate into the various languages. Comparison of each back translation to the English version identified that a change in the meaning of an item was more common in the Turkish (n = 40, 26%) and Arabic (n = 17, 11%) translations, and required re-translation. Cognitive debriefing interviews involved 41 participants from plastic surgery centers in India, Qatar, Sweden, the Netherlands, and Turkey. Participants reported few difficulties in understanding the items, instructions, and response options in each CLEFT-Q translation. Conclusions: Semantic, idiomatic, experiential, and conceptual equivalence of the CLEFT-Q was achieved for all language versions, thus providing evidence of the CLEFT-Q’s transferability to other languages and cultures. Level of Evidence: Not ratable
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