The transition from pediatric to adult health care services for young adults with a disability : an ethical perspective

Young children with disabilities and their carers or parents tend to form a long-term dependent relationship with a paediatrician throughout childhood At some stage when the young person with a disability reaches early adulthood, the relationship is severed This paper draws upon recent research undertaken by the authors that describes the difficulties experienced by young people with disabilities as they go through the transition from paediatric care to adult mainstream health care services. The purpose of this article is to present the argument that the dependent, paternalistic relationship that tends to exist between young people with disabilities (and/or their carers) and paediatricians throughout childhood does not facilitate the successful negotiation of adult mainstream health care services, nor optimally promote the well-being of these young people with disabilities. It is proposed that the promotion of autonomy (or self-determination) via a well planned transition program will increase the likelihood that young adults with disabilities and/or their carers will be empowered to successfully negotiate the current mainstream health care system in Australia, and will enhance the well-being of young adults with disabilities.

Preliminary validation of the Chinese version of the pediatric quality of life inventory

The Pediatric Quality of Life Inventory (PedsQL) is a scale for assessing health-related quality of life of children and adolescents aged 2-18 years. Three reports of PedsQL for the age ranges 2-4 years and 5-7 years were translated into Chinese and their validities were examined. A total of 186 children and parents were involved in the study. Content validity, test-retest reliability, internal consistency reliability and construct validity were assessed. The correlation of parents' and children's reports was also examined. The results showed that the internal consistency is generally good, test-retest reliability ranged from moderate to good, differences between disabled and non-disabled individuals are significant in total scores and in all subscales except for the physical functioning subscale for the children's self-report for the age ranges of 2-4 years and 5-7 years and the correlation between the reports of the parents and children for the age range of 5-7 years is moderate to high. This suggests that the newly translated Chinese PedsQL for children aged 2-4 years and 5-7 years seems to be reliable and valid to be used as a measure of health-related quality of life in Chinese pediatric research and clinical applications.

Peripheral quantitative computed tomography in children and adolescents : the 2007 ISCD pediatric official positions

Peripheral quantitative computed tomography (pQCT) has mainly been used as a research tool in children. To evaluate the clinical utility of pQCT and formulate recommendations for its use in children, the International Society
of Clinical Densitometry (ISCD) convened a task force to review the literature and propose areas of consensus and future research. The types of pQCT technology available, the clinical application of pQCT for bone health assessment in children, the important elements to be included in a pQCT report, and quality control monitoring techniques were evaluated. The review revealed a lack of standardization of pQCT techniques, and a paucity of data regarding differences between pQCT manufacturers, models and software versions and their impact in pediatric assessment. Measurement sites varied across studies. Adequate reference data, a critical element for interpretation of pQCT results, were entirely lacking, although some comparative data on healthy children were available. The elements of the
pQCT clinical report and quality control procedures are similar to those recommended for dual-energy X-ray absorptiometry. Future research is needed to establish evidence-based criteria for the selection of the measurement site, scan acquisition and analysis parameters, and outcome measures. Reference data that sufficiently characterize the normal range of variability in the population also need to be established.

Quality of reporting of randomized clinical trials in abstracts of the 2005 annual meeting of the American College of Rheumatology.

Objective: To determine the quality of abstracts reporting randomized clinical trials (RCT) at the 2005 Annual Scientific Meeting of the American College of Rheumatology.

Methods: All 2005 abstracts including late-breaking abstracts were assessed. An abstract was deemed to be reporting an RCT if it indicated that participants were randomized in the title or body of the abstract. RCT were excluded if they included only pharmacokinetic data. The CONSORT checklist was applied and relevant data extracted. We defined manufacturer support as acknowledgment of industry support or industry employee as co-author.

Results: Of 2146 abstracts, 143 (6.7%) reported RCT. Of these, 78.3% were drug trials, and 63.6% indicated manufacturer support. Only 30.8% of abstracts used "randomized" in the title, 44.1% did not explicitly state whether blinding was undertaken, and only 7.0% clearly stated who was blinded. Thirty percent of studies did not give an explicit definition of eligibility criteria of participants. While 84.6% explicitly described the experimental intervention, only 37.1% explicitly described the comparator intervention. Only 21% explicitly stated that an intention to treat analysis was performed. Baseline demographic and clinical characteristics were reported in 48.3%. While most abstracts reported summary results for each treatment group, only 35.7% reported effect size with its precision.

Conclusion: The quality of reporting is suboptimal in many RCT abstracts. Abstracts reporting RCT would benefit from a structured approach that ensures more detailed reporting of eligibility criteria, active and comparator interventions, flow of participants, and adequate summary and precision of results.

Stakeholder satisfaction with the Australian Rheumatology Association Database (ARAD)

Background: The Australian Rheumatology Association Database (ARAD) is a voluntary national registry for monitoring the long-term benefits and safety of biological disease-modifying anti-rheumatic drugs (bDMARDs) for inflammatory arthritis. Both rheumatologists and patients contribute data to the ARAD.

Objective: To evaluate the satisfaction of patients and rheumatologists with the ARAD.

Methods: Cross-sectional surveys were distributed to a random sample of 100 community-dwelling ARAD patients in 2007 and to rheumatologists attending the 2007 AustralianRheumatologyAssociation (ARA) annual scientific meeting.

Survey questions included items about the usefulness of the ARAD, workload for participants, frequency of questionnaires, and experience of contact with ARAD staff.

Results: A total of 92.5% of patients perceived the ARAD as very important (scoring 9-10 on a numeric rating scale). Patients reported minimal difficulty in completing questionnaires, and 95.0% indicated that a 6-month interval between questionnaires was reasonable. Of responding rheumatologists, 32.3%, 62.1%, and 53.8% indicated that the ARAD was very important (scoring 8-10) with respect to clinical information, research, and the profession, respectively, while 68% of those participating in the ARAD reported that the workload required to enroll patients was manageable and 30% found it difficult or onerous.

Conclusion: Key stakeholders in the ARAD view it as an important resource and are satisfied with its operations. Efforts will be directed towards assisting those rheumatologists who find the associated workload difficult and to improving the perceived clinical value of information available from the ARAD.

Ankylosing spondylitis patients commencing biologic therapy have high baseline levels of comorbidity: a report from the Australian Rheumatology Association Database

Aims: To compare the baseline characteristics of a population-based cohort of patients with ankylosing spondylitis (AS) commencing biological therapy to the reported characteristics of bDMARD randomised controlled trials (RCTs) participants.
Methods: Descriptive analysis of AS participants in the Australian Rheumatology Association Database (ARAD) who were commencing bDMARD therapy.
Results: Up to December 2008, 389 patients with AS were enrolled in ARAD. 354 (91.0%) had taken bDMARDs at some time, and 198 (55.9%) completed their entry questionnaire prior to or within 6 months of commencing bDMARDs. 131 (66.1%) had at least one comorbid condition, and 24 (6.8%) had a previous malignancy (15 nonmelanoma skin, 4 melanoma, 2 prostate, 1 breast, cervix, and bowel). Compared with RCT participants, ARAD participants were older, had longer disease duration and higher baseline disease activity.
Conclusions: AS patients commencing bDMARDs in routine care are significantly different to RCT participants and have significant baseline comorbidities.

Baseline comorbidities in a population-bases cohort of rheumatoid arthritis patients receiving biological therapy: data from the Australian Rheumatology Association database

Aims: To describe the baseline characteristics of an Australian population-based cohort of rheumatoid arthritis (RA) patients commencing biological therapy.

Methods: Descriptive analysis from the Australian Rheumatology Association Database (ARAD).

Results: Up to October 2006, there were 681 RA patients taking biologics enrolled in ARAD. Baseline data were available for 624 (72% female, mean (SD) age 57.0 (12.5) years). Of these, 59.5% reported at least one comorbid condition, most commonly hypertension (35.7%) and osteoporosis (30.4%); 61 (9.8%) had a history of malignancy (35 nonmelanoma skin, 5 breast, 4 bowel, 5 cervix, 3 melanoma, 3 prostate and 1 each of lip, lung, myeloma, testis, uterus, vagina). Self-reported infections within the previous 6 months were common (71.5%).

Conclusions: History of comorbidities, including recent infections, is common among Australian RA patients commencing biologics, and 10% have a history of malignancy. This may impact future evaluations of health outcomes among this population, including attribution of adverse events of biologic therapy.

The relationship between characteristics of context and research utilization in a pediatric setting

Background
Research utilization investigators have called for more focused examination of the influence of context on research utilization behaviors. Yet, up until recently, lack of instrumentation to identify and quantify aspects of organizational context that are integral to research use has significantly hampered these efforts. The Alberta Context Tool (ACT) was developed to assess the relationships between organizational factors and research utilization by a variety of healthcare professional groups. The purpose of this paper is to present findings from a pilot study using the ACT to elicit pediatric and neonatal healthcare professionals' perceptions of the organizational context in which they work and their use of research to inform practice. Specifically, we report on the relationship between dimensions of context, founded on the Promoting Action on Research Implementation in Health Services (PARIHS) framework, and self-reported research use behavior.

Methods
A cross-sectional survey approach was employed using a version of the ACT, modified specifically for pediatric settings. The survey was administered to nurses working in three pediatric units in Alberta, Canada. Scores for three dimensions of context (culture, leadership and evaluation) were used to categorize respondent data into one of four context groups (high, moderately high, moderately low and low). We then examined the relationships between nurses` self-reported research use and their perceived context.

Results
A 69% response rate was achieved. Statistically significant differences in nurses' perceptions of culture, leadership and evaluation, and self-reported conceptual research use were found across the three units. Differences in instrumental research use across the three groups of nurses by unit were not significant. Higher self-reported instrumental and conceptual research use by all nurses in the sample was associated with more positive perceptions of their context.

Conclusions
Overall, the results of this study lend support to the view that more positive contexts are associated with higher reports of research use in practice. These findings have implications for organizational endeavors to promote evidence-informed practice and maximize the quality of care. Importantly, these findings can be used to guide the development of interventions to target modifiable characteristics of organizational context that are influential in shaping research use behavior.