Tricia A. Burke

Reasons for hospital admissions among youth and young adults with cerebral palsy.

OBJECTIVE To identify the most common reasons for acute care hospital admissions among youth (age range, 13-17.9y) and young adults (age range, 23-32.9y) with cerebral palsy (CP). DESIGN We completed a secondary analysis of data from the Canadian Institute for Health Information (CIHI) to determine the most frequently observed reasons for admissions and the associated lengths of stay (LOS). SETTING Participants were identified from 6 childrens treatment centers in Ontario, Canada. PARTICIPANTS Health records data from youth with CP (n=587) and young adults with CP (n=477) contributed to this study. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES The most common reasons for hospital admission, relative frequencies of admissions for each reason, and mean LOS were reported. RESULTS The analysis of CIHI records identified epilepsy and pneumonia as the top 2 reasons for admissions in both age groups. Both age groups were commonly admitted because of infections other than pneumonia and urinary tract infections (UTIs), gastrointestinal (GI) problems such as malabsorption, and mental illness. The reasons that were unique to youth included orthopedic and joint-related issues, other respiratory problems, and scoliosis. In young adults, mental illness was the third most common reason for admission, followed by lower GI or constipation problems, malnutrition or dehydration, upper GI problems, fractures, and UTIs. CONCLUSIONS This article provides important clinical information that can be used in the training of physicians and health care providers, and to guide future planning of ambulatory care services to support the clinical management of persons with CP over their lifespan.

Quality of life in childhood immune thrombocytopenia: international validation of the kids' ITP tools.

The Kids ITP Tools (KIT) is a disease‐specific measure of health‐related quality of life for children with immune thrombocytopenia (ITP). To facilitate use in international trials it has been cross‐culturally adapted for France, Germany, the United Kingdom and Uruguay. This study assessed the validity and reliability of the translated KIT in comparison to generic quality of life measures.

Health Outcomes among Youths and Adults with Spina Bifida

OBJECTIVE To describe the health and health-related quality of life (HR-QoL) outcomes of youths and young adults with spina bifida. STUDY DESIGN One global rating of self-rated health and 2 generic measures of HR-QoL were administered to a group of youths and young adults with spina bifida. HR-QoL was measured using the Health Utilities Index Mark 3 (HUI3) and the Assessment of Quality of Life version 1 (AQoL). RESULTS Data was obtained from 40 youth (mean age 16.0 years) and 13 young adults (mean age 26.6 years). Most youth rated their overall health as either excellent or very good (65%) compared with fewer adults (23%) (P = .007). The mean HR-QoL scores for youths versus adults were 0.57 versus 0.36 (P = .03) for the HUI(3) and 0.37 versus 0.25 for the AQoL (P = .09). HUI(3) and AQoL scores were correlated with level of anatomic lesion (rho = 0.64 and rho = 0.42, respectively). CONCLUSIONS The HR-QoL of youths and young adults with spina bifida was low on measures that are aggregated using societal values (the HUI3 and AQoL). This is in contrast to their single global self-ratings of health, which were more favorable. These findings underscore the distinction between ratings of HR-QoL based on societal values versus the personal lived experiences of adults with childhood-onset disability.

Cross-cultural validation of the CHO-KLAT and HAEMO-QoL-A in Canadian French.

Summary.  Multi‐site studies are necessary in the field of haemophilia to ensure adequate sample sizes. Quality of life (QoL) instruments need to be harmonized across languages and cultures to facilitate their inclusion. The purpose of this study was to adapt the Canadian Haemophilia Outcomes – Kids Life Assessment Tool (CHO‐KLAT©) and HAEMO‐QoL‐A© to French for Canada. The CHO‐KLAT and the HAEMO‐QoL‐A are haemophilia‐specific measures of QoL for boys and men respectively. Both measures originated in English, were translated into Canadian French by clinicians with expertise in haemophilia care, back‐translated by expert translators and harmonized by a multi‐disciplinary team. The harmonized versions were evaluated through a cognitive debriefing process with 6 boys with haemophilia, their parents and 10 men with haemophilia. The final versions were validated in a sample of 19 boys with haemophilia, 19 parents, and 22 men with haemophilia along with a generic QoL scale: the PedsQL for children; and the SF‐36 for adults. The translation and cognitive debriefing processes resulted in a preliminary version that maintained the intent of the original questions. The validation study estimated the mean score for the child‐reported CHO‐KLAT at 71.9 (SD 10.4), and the adult‐reported HAEMO‐QoL‐A at 79.1 (SD 21.3). The CHO‐KLAT correlated 0.64 with the PedsQL and the HAEMO‐QoL‐A correlated 0.78 with the SF‐36 physical component summary score. The French‐Canadian version of the CHO‐KLAT and HAEMO‐QoL‐A are valid. These measures are available for use in multi‐site haemophilia trials and clinical practices to capture QoL data from French Canadians.

International cross‐cultural validation study of the Canadian Haemophilia Outcomes: Kids’ Life Assessment Tool

Health‐related quality of life (HRQoL) assessment is recognized as an important outcome in the evaluation of different therapeutic regimens for persons with haemophilia. The Canadian Haemophilia Outcomes–Kids’ Life Assessment Tool (CHO‐KLAT) is a disease‐specific measure of HRQoL for 4 to 18‐year‐old boys with haemophilia. The purpose of this study was to extend this disease‐specific, child‐centric, outcome measure for use in international clinical trials.

Cross-cultural adaptation of the CHO-KLAT for boys with hemophilia in rural and urban china

BackgroundQuality of life (QoL) is increasingly recognized as an important outcome measure in clinical trials. The Canadian Hemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT) shows promise for use in China.ObjectiveTo adapt the CHO-KLAT version 2.0 for use in clinical trials in China.MethodsForward and back translations of the CHO-KLAT2.0 were completed in 2008. Between October 2009 and June 2010, a series of 3 focus groups were held with 20 boys and 31 parents in rural and urban China to elicit additional concepts, important to their QoL, for the Chinese CHO-KLAT2.0. All of the items identified by boys and parents were reviewed by a group of experts, resulting in a Chinese version of the CHO-KLAT2.0. This version underwent a detailed cognitive debriefing process between October 2010 and June 2011. Thirteen patient-parent pairs participated in this cognitive debriefing process until a stable and clearly understood Chinese version of the CHO-KLAT2.0 was obtained.ResultsThe initial back translation of the Chinese CHO-KLAT2.0 was slightly discrepant from the original English version on 12 items. These were all successfully adjudicated. The focus groups identified 9 new items that formed an add-on Socio-Economic Context (SEC) module for China. Linguistic improvements were made after the 2nd, 5th, 7th and 13th cognitive debriefings pairs and affected a total of 18 items. The result was a 35 item CHO-KLAT2.0 and a SEC module in Simplified Chinese, both of which have good content validity.ConclusionThis detailed process proved to be extremely valuable in ensuring the items were accurately interpreted by Chinese boys with hemophilia ages ≤18 years. The need for the additional SEC module highlighted the different context that currently exists in China with regard to hemophilia care as compared to many Western countries, and will be important in tracking progress within both rural and urban China over time. Changes based on the cognitive debriefings suggest that expert verbatim translation alone is not sufficient. The Chinese version of the CHO-KLAT2.0 is well understood by boys with hemophilia in China. Next steps will be to test its construct validity and reliability in boys with hemophilia in China.

Updating the Canadian Hemophilia Outcomes–Kids Life Assessment Tool (CHO-KLAT Version2.0)

OBJECTIVES Hemophilia is an X-chromosome-linked disorder associated with recurrent bleeding into muscles and joints, leading to pain and limitations in physical function that may diminish quality of life. The Canadian Hemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT) is a disease-specific measure of quality of life that was recently revised to facilitate cross-cultural adaptation. This study assessed the validity and reliability of version 2.0 of the CHO-KLAT (CHO-KLAT2.0). METHODS Content validity was assessed via detailed cognitive debriefing to confirm that Canadian boys understood the CHO-KLAT2.0. The measurement properties of the CHO-KLAT2.0 were assessed in comparison to those of the PedsQL, the Haemo-QoL, and two global ratings. Most children completed the CHO-KLAT2.0 a second time to assess test-retest reliability. RESULTS Cognitive debriefing was completed with 12 boys (age 8.6-17.8 years) and 9 of their parents and resulted in no substantive changes. Sixty boys (mean age 11.8 years) participated in the validation phase, which showed a mean CHO-KLAT2.0 score of 75.4±12.0, strong correlations with the PedsQL (r = 0.62, P<0.001) and Haemo-QoL (r = 0.64, P<0.001), and moderate correlations with global ratings of hemophilia bother (ρ =-0.39, P = 0.002) and health (ρ =-0.47, P = 0.0002). Test-retest concordance was better among parents (0.79) than among boys (0.63). CONCLUSIONS This study establishes the measurement properties of the CHO-KLAT2.0. The summary scores are very similar to those from the original development study, and thus, these have not been affected by the revisions. These results provide reference standards for comparing data from other countries to the Canadian experience and to estimate sample sizes for future clinical trials.

Process and experience of cross-cultural adaptation of a quality of life measure (CHO-KLAT) for boys with haemophilia in Brazil.

Health‐related quality of life (HRQoL) is an important outcome from the perspective of boys with haemophilia and their parents. Few studies have captured the HRQoL of boys with haemophilia in developing countries. This article reports on the cross‐cultural adaptation of the Canadian Haemophilia Outcomes – Kids Life Assessment Tool (CHO‐KLAT) for use in São Paulo, Brazil. The CHO‐KLAT2.0 was translated into Portuguese, and then translated back into English. The original English and back‐translation versions were compared by a group of three clinicians, whose first language was Portuguese. The resulting Portuguese version was assessed through a series of cognitive debriefing interviews with children and their parents. This process identified concepts that were not clear and revised items to ensure appropriate understanding through an iterative process. The initial back‐translation was not discrepant from the original English version. We made changes to 66% of the CHO‐KLAT2.0 items based on clinical expert review and 26% of the items based on cognitive debriefings. In addition, two new items were added to the final Portuguese version to reflect the local cultural context. The final result had good face validity. This process was found to be extremely valuable in ensuring the items were accurately interpreted by the boys/parents in São Paulo Brazil. The results suggest that professional translators, clinical experts and cognitive debriefing are all required to achieve a culturally appropriate instrument. The Portuguese CHO‐KLAT2.0 is well understood by Sao Paulo boys/parents. The next step will be to test its validity and reliability locally.

Importance of literacy for self‐reported health‐related quality of life: a study of boys with haemophilia in Brazil

Psychosocial outcomes are important in the perspective of boys with haemophilia. However, health‐related quality of life (HRQoL) is based on self‐report, and assumes adequate literacy. Yet, literacy is rarely assessed prior to data collection. This study sought to identify criteria that might indicate the level of literacy of children being recruited for clinical trials and to develop a simple method to prescreen those whose literacy was uncertain. We developed a brief screening tool in the form of two stories, at a grade 3 reading level, followed by comprehension questions. We applied the screening test to a sample of haemophilic boys between the ages of 7 and 13 years to assess their literacy. The data were analysed to determine the best criteria to use in identifying the ability to independently self‐report for HRQoL studies. Twenty‐four Brazilian boys (7.9–12.8) completed the testing. The results showed that 17 (70.8%) were literate (were able to both read and comprehend), and could complete a questionnaire without assistance. All boys over 11.0 years of age were sufficiently literate. Grade level was not found to be a helpful criterion. We recommend that all children under the age of 11.0 years be prescreened before providing self‐reported HRQoL data. Those with limited literacy should be provided assistance to ensure comprehension of the questions. This is important to ensure high‐quality data on HRQoL for future clinical trials.

Reliability of the Aboriginal Children’s Health and Well-Being Measure (ACHWM)

PurposeThe aim of this research was to evaluate the reliability of the Aboriginal Children’s Health and Well-Being Measure© (ACHWM).MethodsTwo cohorts of children from Wiikwemkoong Unceded Territory were recruited for this study. Each child completed the ACHWM independently on a computer tablet running a customized survey app. The data from the first and second cohorts were used to estimate the internal consistencies using Cronbach’s alpha. A subgroup of the second cohort completed the survey twice, within the same day. The data from this subgroup was used to evaluate the test–retest reliability using a random effects Intra-class Correlation Coefficient (ICC).ResultsThere were 124 participants in the first cohort and 132 participants in the second cohort. The repeated measures subgroup was comprised of 29 participants from the second cohort. The internal consistency statistic (Cronbach’s alpha) was 0.93 for the first and second cohorts. The test–retest reliability ICC was 0.94 (95% CI 0.86–0.97) for the ACHWM summary scores based on the repeated measures subgroup.ConclusionsThese results establish the internal consistency and the test–retest validity of the ACHWM. This important finding will enable Aboriginal communities to use this measure with confidence and promote the voices of their children in reporting their health. The ACHWM is an essential data gathering tool that enables evidence-based health care for Aboriginal communities.