Measuring health-related quality of life in children with chronic medical conditions

Beh, Khaled A. El; Khalifa, Hosam; Hassaan, Shehab H; Noomani, Mostafa

doi:10.1097/01.xme.0000526929.54570.05

Cited by 7 publications

(8 citation statements)

References 40 publications

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“…In addition, our reported PEDSQL scores have shown to be lower than those of healthy children in Egypt, but similar to the mean scores of Egyptian children with chronic conditions [30]. This deviance from the healthy population emphasizes the need for the evolving advanced surgical techniques and individualized tools that are being introduced in orthopedic oncology [52,53].…”

Section: Responses and Different Characteristicssupporting

confidence: 77%

“…This is a cross-sectional study in which data were collected using the modi ed pTESS and TESS, which contain mental domains, in addition to the PEDSQL 4.0 generic core instrument. Since the Arabic PEDSQL had been already validated in Egypt, its scores were used to validate the culturally adapted pTESS and TESS [30].…”

Section: Methods Study Design and Settingmentioning

confidence: 99%

“…The adult forms of PEDSQL were used for those who were ≥ 18 years at the time of the survey. The nal scores range from 0 to 100 with higher scores indicating superior HRQOL [30,36].…”

Section: Instrumentsmentioning

confidence: 99%

“…The MSTS scoring system is the only routine measure for assessing the functional outcomes in this population [28]. The recently validated Egyptian version of PEDSQL represents a great opportunity for evaluating the validity of other disease-speci c and patient-derived tools [30]. Accordingly, the cultural adaptation and validation of pTESS and TESS, as well as modifying them to include mental domains, would provide a single self-reporting instrument for assessing the functional outcome and HRQOL in Egyptians with extremity bone cancer.…”

mentioning

confidence: 99%

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Cross-cultural adaptation and validation of a self-reporting tool to assess health-related quality of life for Egyptians with extremity bone sarcomas in childhood or adolescence.

Farid

Chun

Hassanain

et al. 2023

Preprint

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Purpose Our study pursued cross-cultural adaptation, and validation of the pediatric Toronto Extremity Salvage Score (pTESS) and Toronto Extremity Salvage Score (TESS) to assess the functional outcome for Egyptian children and adult survivors of childhood bone cancer. Mental domains were added to allow the evaluation of health-related quality of life (HRQOL) Methods The internal consistency and test-retest reliability of the studied forms were assessed. For convergent validity, correlations between scores of the generic Pediatric Quality of Life Inventory (PEDSQL 4.0) and pTESS /TESS scores were reported. Exploratory Factor Analysis (EFA) was feasible for pTESS-leg; due to the insufficient samples, only the average inter-item correlation coefficients were reported for the remaining versions. Results Out of 233 participants, 134 responded to pTESS leg, 53 to TESS-leg, 36 to pTESS-arm, and only 10 to TESS-arm. All versions showed excellent internal consistency (Cronbach’s alpha > 0.9), good test-retest reliability (Intra-class coefficients > 0.8), moderate to strong correlations with PEDSQL, and acceptable average inter-item correlation coefficients (≥ 0.3). In the EFA, all mental items were loaded on one separate factor with factor loadings exceeding 0.4. Chemotherapy, primary surgery within one year, or tibial tumors showed significantly inferior pTESS/TESS scores in lower extremities. Conclusion The Egyptian pTESS and TESS are valid and reliable self-reporting tools for assessing the functional outcome following surgeries of extremity bone sarcomas. The mental domains enabled the assessment of the overall health status in our population. Future studies should include larger sample size and evaluate the ability of pTESS/TESS to track progress over time.

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Section: Responses and Different Characteristicssupporting

confidence: 77%

Section: Methods Study Design and Settingmentioning

confidence: 99%

“…The adult forms of PEDSQL were used for those who were ≥ 18 years at the time of the survey. The nal scores range from 0 to 100 with higher scores indicating superior HRQOL [30,36].…”

Section: Instrumentsmentioning

confidence: 99%

mentioning

confidence: 99%

See 2 more Smart Citations

Cross-cultural adaptation and validation of a self-reporting tool to assess health-related quality of life for Egyptians with extremity bone sarcomas in childhood or adolescence.

Farid

Chun

Hassanain

et al. 2023

Preprint

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show abstract

“…Although MSTS is disease-specific, it is not a patient-reported tool lacking the patients’ perceptions of their outcomes and increasing the risk of assessment bias [ 14 , 17 , 31 ]. The recently validated Egyptian version of PedsQL represents a great opportunity for evaluating the validity of other disease-specific and patient-derived tools like pTESS/TESS [ 32 ]. Accordingly, the cultural adaptation and validation of the original pTESS and TESS and their modified versions, which include mental domains, would provide a single self-reporting instrument for assessing the functional outcome and HRQOL in Egyptians with extremity bone cancer.…”

Section: Introductionmentioning

confidence: 99%

Cross-cultural adaptation and validation of a self-reporting tool to assess health-related quality of life for Egyptians with extremity bone sarcomas in childhood or adolescence

Farid¹,

Chun²,

Hassanain³

et al. 2023

Health Qual Life Outcomes

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Background Validated self-reporting tools are required to evaluate the functional outcome and health-related quality of life (HRQOL) for those who had extremity bone sarcomas in their childhood or adolescence. Our study pursued cross-cultural adaptation and validation of the pediatric Toronto Extremity Salvage Score (pTESS) and Toronto Extremity Salvage Score (TESS) to assess the functional outcome for Egyptian children and adult survivors following surgeries of extremity bone sarcomas. In the modified versions of pTESS and TESS, mental domains were added to allow the evaluation of HRQOL using a specific instrument for childhood bone cancer. Methods The internal consistency and test–retest reliability of the studied forms were assessed with Cronbach’s alpha and Intra-class coefficients (ICC), respectively. For convergent validity, correlations between scores of the generic Pediatric Quality of Life Inventory (PedsQL 4.0) and pTESS /TESS scores were reported. Factor Analysis was feasible for pTESS-leg; due to the insufficient samples, only the average inter-item correlation coefficients were reported for the remaining versions. Results Out of 233 participants, 134 responded to pTESS-leg, 53 to TESS-leg, 36 to pTESS-arm, and only 10 to TESS-arm. All versions showed excellent internal consistency (Cronbach’s alpha >0.9), good test–retest reliability (ICC >0.8), moderate to strong correlations with PedsQL, and acceptable average inter-item correlation coefficients (≥0.3). Three factors were extracted for the pTESS-leg, in which all mental items were loaded on one separate factor with factor loadings exceeding 0.4. Active chemotherapy, less than one year from primary surgery, or tibial tumors were associated with significantly inferior pTESS/TESS scores in the lower extremity group. Conclusion The Egyptian pTESS and TESS are valid and reliable self-reporting tools for assessing the functional outcome following surgeries for extremity bone sarcomas. The modified pTESS and TESS versions, which include additional mental domains, enabled the assessment of the overall health status of our population. Future studies should include a larger sample size and evaluate the ability of pTESS/TESS to track progress over time.

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Patient-reported outcome measures in Arabic-speaking populations: a systematic review

et al. 2021

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Measuring health-related quality of life in children with chronic medical conditions

Cited by 7 publications

References 40 publications

Cross-cultural adaptation and validation of a self-reporting tool to assess health-related quality of life for Egyptians with extremity bone sarcomas in childhood or adolescence.

Cross-cultural adaptation and validation of a self-reporting tool to assess health-related quality of life for Egyptians with extremity bone sarcomas in childhood or adolescence.

Cross-cultural adaptation and validation of a self-reporting tool to assess health-related quality of life for Egyptians with extremity bone sarcomas in childhood or adolescence

Patient-reported outcome measures in Arabic-speaking populations: a systematic review

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