Biomedical subjects

K L Shaw

Publications and source records attributed to K L Shaw.

At least 19 recordsLinked to original sources

PubMed2006

The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis.

OBJECTIVE: There is an extensive evidence base for the need of transitional care, but a paucity of robust outcome data. The aim of the study was to determine whether the quality of life of adolescents with juvenile idiopathic arthritis (JIA) could be improved by a co-ordinated, evidence-based programme of transitional care. METHODS: Adolescents with JIA aged 11, 14 and 17 yrs and their parents were recruited from 10 rheumatology centres in the UK. Data were collected at baseline, 6 and 12 months including core outcome variables. The primary outcome measure was health-related quality of life (HRQL): Juvenile Arthritis Quality of Life Questionnaire (JAQQ). Secondary outcome measures included: knowledge, satisfaction, independent health behaviours and pre-vocational experience. RESULTS: Of the 359 families invited to participate, 308 (86%) adolescents and 303 (84%) parents accepted. A fifth of them had persistent oligoarthritis. Median disease duration was 5.7 (0-16) yrs. Compared with baseline values, significant improvements in JAQQ scores were reported for adolescent and parent ratings at 6 and 12 months and for most secondary outcome measures with no significant deteriorations between 6 and 12 months. Continuous improvement was observed for both adolescent and parent knowledge with significantly greater improvement in the younger age groups at 12 months (P = 0.002). CONCLUSIONS: This study represents the first objective evaluation of an evidence-based transitional care programme and demonstrates that such care can potentially improve adolescents' HRQL.

Adolescent↗

PubMed2006

Growing up and moving on in rheumatology: parents as proxies of adolescents with juvenile idiopathic arthritis.

OBJECTIVE: To examine agreement about physical health, functional ability, and health-related quality of life (HRQOL) between adolescents with juvenile idiopathic arthritis (JIA) and their parents. METHODS: The study group comprised 303 adolescent-parent dyads who completed individual questionnaires, including the Childhood Health Assessment Questionnaire with visual analog scales for pain and general well-being, and the Juvenile Arthritis Quality of Life Questionnaire. Agreement was determined using the Bland and Altman method. RESULTS: Approximately half of the adolescent-parent dyads showed clinically acceptable agreement for pain, general well-being, functional disability, and HRQOL. Where discrepancies occurred, there were similar numbers of parental overestimation and underestimation, with the exception that parents rated functional ability worse than did adolescents. Parents were also consistent with respect to overestimation or underestimation, irrespective of the health domain in question. Agreement was associated with better disease-related outcome variables, but was not significantly influenced by demographic factors. Agreement between adolescents and parents was dependent on the level of disease outcome and the health domain under scrutiny, and was less for moderate disease outcomes (as compared with mild or severe) and less visible phenomena (e.g., pain, global well-being). CONCLUSION: There is a wide variation in agreement between adolescents with JIA and their parents that is dependent on which health-related variable is under scrutiny. Proxy report is likely to be valid for adolescents with JIA at either the mild or severe end of the spectrum and/or for the visible manifestations of the disease. Consideration of both adolescent and parent-proxy reports is therefore important in future research.

Adolescent↗

PubMed2006

Health-related quality of life in adolescents with juvenile idiopathic arthritis.

OBJECTIVE: To describe the health-related quality of life (HRQOL) of adolescents with juvenile idiopathic arthritis (JIA), and to examine the usefulness of the Juvenile Arthritis Quality of Life Questionnaire (JAQQ) in a UK context. It was hypothesized that HRQOL would decrease with worsening disease and disability. METHODS: Patients with JIA ages 11, 14, and 17 years were recruited from 10 major rheumatology centers. HRQOL was measured using the JAQQ. Other data were core outcome variables including the Childhood Health Assessment Questionnaire, demographic characteristics, arthritis-related knowledge, and satisfaction with health care. RESULTS: Questionnaires were completed by 308 adolescents. One-fifth had persistent oligoarthritis. Median disease duration was 5.7 years (range <1-16 years). The JAQQ was shown to have good psychometric properties when used in the UK, but was not without limitations. HRQOL of adolescents with JIA was less than optimal, particularly in the domains of gross motor and systemic functioning. Items most frequently rated as adolescents' biggest psychological problems were "felt frustrated" and "felt depressed," rated by 30.2% and 23.4%, respectively. These were particularly problematic for the 17-year-olds, with 39% reporting frustration as one of their biggest problems and 63.6% reporting depression. Variation in the adolescent JAQQ scores was explained by functional disability, pain, and disease activity. CONCLUSION: JIA can have a significant adverse effect on the HRQOL of adolescents. The JAQQ is a useful tool to assess the HRQOL of UK adolescents with JIA, but there is need for improved measures that incorporate developmentally appropriate issues.

Adolescent↗

PubMed2005

Phylogeny of Ensifera (Hexapoda: Orthoptera) using three ribosomal loci, with implications for the evolution of acoustic communication.

Representatives of the Orthopteran suborder Ensifera (crickets, katydids, and related insects) are well known for acoustic signals produced in the contexts of courtship and mate recognition. We present a phylogenetic estimate of Ensifera for a sample of 51 taxonomically diverse exemplars, using sequences from 18S, 28S, and 16S rRNA. The results support a monophyletic Ensifera, monophyly of most ensiferan families, and the superfamily Gryllacridoidea which would include Stenopelmatidae, Anostostomatidae, Gryllacrididae, and Lezina. Schizodactylidae was recovered as the sister lineage to Grylloidea, and both Rhaphidophoridae and Tettigoniidae were found to be more closely related to Grylloidea than has been suggested by prior studies. The ambidextrously stridulating haglid Cyphoderris was found to be basal (or sister) to a clade that contains both Grylloidea and Tettigoniidae. Tree comparison tests with the concatenated molecular data found our phylogeny to be significantly better at explaining our data than three recent phylogenetic hypotheses based on morphological characters. A high degree of conflict exists between the molecular and morphological data, possibly indicating that much homoplasy is present in Ensifera, particularly in acoustic structures. In contrast to prior evolutionary hypotheses based on most parsimonious ancestral state reconstructions, we propose that tegminal stridulation and tibial tympana are ancestral to Ensifera and were lost multiple times, especially within the Gryllidae.

Animals↗

PubMed2005

Growing up and moving on. A multicentre UK audit of the transfer of adolescents with juvenile idiopathic arthritis from paediatric to adult centred care.

OBJECTIVE: To assess the provisions made for the transfer of adolescents with juvenile idiopathic arthritis to adult rheumatology clinics in the UK and the impact of a transitional care programme. METHODS: An audit of the documentation of the provisions made for transfer in 10 centres participating in a controlled trial of transitional care. Each centre conducted a retrospective case note audit of the recent patients transferred to adult care before and 12-24 months after the start of the trial. Demographic details, age when transition was first discussed, age at transfer, transitional issues, multidisciplinary team involvement, adolescent self advocacy, and readiness were documented. RESULTS: There were improvements at follow up in documentation of transitional issues, disease specific educational needs, adolescent readiness, and parental needs with the exception of dental care, dietary calcium, and home exercise programmes. The age at which the concept of an independent clinic visit was introduced was lower (mean (SD): 16.8 (1.06) v 15.8 (1.46) years, p = 0.01) but there were no other changes in age related transitional milestones. Significantly more participants had preparatory visits to the adult clinic, had a transition plan, and had joint injections while awake at follow up. CONCLUSIONS: The improvement in documentation suggests that involvement in the research project increased awareness of transitional issues. The difficulty of changing policy into practice was highlighted, with room for improvement, particularly at the paediatric/adult interface. The reasons for this are likely to be multiple, including resources and lack of specific training.

Adolescent↗

PubMed2005

Growing up and moving on in rheumatology: a multicentre cohort of adolescents with juvenile idiopathic arthritis.

OBJECTIVES: To define the transitional care workload of a multicentre cohort of adolescents with juvenile idiopathic arthritis (JIA) including disease, self-advocacy and vocational issues prior to the implementation of a transitional care programme. METHODS: Data were collected using questionnaires completed by senior clinicians, patients and parents in 10 UK paediatric rheumatology centres. Entry criteria for patients included a confirmed diagnosis of JIA for at least 6 months and an age of 11, 14 or 17 yr. RESULTS: Of 359 families invited to participate, 308 (85.79%) adolescents with JIA and 303 parents/guardians accepted. Of these, 19.5% had persistent oligoarthritis. Despite their imminent transfer to adult care, ongoing transitional issues were identified in the 17-yr-old cohort: 55.8% were still seeing the rheumatologists with their parent, 20% were not self-medicating, 68.5% had not had intra-articular injections under local anaesthetic and 14% had received no careers counselling. This age group also had significant disease-related issues; 54.6% had moderate to severe functional disability, 67.5% were still on disease-modifying anti-rheumatic drugs and, as a group, they had significantly greater pain than younger patients. CONCLUSIONS: This study has objectively identified the transitional care workload facing paediatric and adult rheumatologists in terms of disease-related, self-advocacy and vocational issues. Outcome data following the implementation of a coordinated transitional care programme are awaited.

Adolescent↗

PubMed2004

Transitional care for adolescents with juvenile idiopathic arthritis: a Delphi study.

OBJECTIVE: To identify the ideal programme of transitional care for adolescents with juvenile idiopathic arthritis (JIA) as perceived by users and providers, and to examine the feasibility of achieving this within a UK National Health Service context. METHODS: A modified two-stage Delphi study was undertaken with rheumatology health professionals, young people with JIA (aged 12-25 yr) and their parents. Participants were presented with statements about transitional care and asked to rate (i) the extent to which these constituted best practice, and (ii) their feasibility. RESULTS: Second-round questionnaires were completed by 83 individuals, representing an overall response rate of 90%. Items strongly agreed to constitute best practice and highly feasible included: 'addressing young people's psychosocial and educational/vocational needs'; 'using an individualized approach'; 'providing honest explanations of the adolescent's condition and health-care'; 'providing opportunities for adolescents to express opinions and make informed decisions'; 'having continuity in health personnel'; and 'giving adolescents the option of being seen by professionals without their parents'. However, providing adolescent-focused environments, professionals knowledgeable in transitional care and opportunities for young people with JIA to meet similar others were seen as feasible in only a few hospitals. CONCLUSIONS: There is considerable agreement as to the most important elements of transitional care. Those that are easily achievable should be undertaken in all hospitals that care for adolescents with JIA. However, not all elements identified were perceived as easily feasible; further research is required to determine how to implement these elements.

Adolescent↗

PubMed2004

User perspectives of transitional care for adolescents with juvenile idiopathic arthritis.

OBJECTIVES: To gain insight into the transitional needs of adolescents with juvenile idiopathic arthritis (JIA) and to examine how these needs may be addressed within a structured programme of transitional care. METHODS: A qualitative study using focused group discussions was performed. Groups comprised (i) adolescents with JIA aged 12-18 yr, (ii) young adults with JIA aged 19-30 yr, (iii) parents of adolescents with JIA, and (iv) parents of young adults with JIA. RESULTS: Transitional needs included aspects of participants' physical, social, psychological and vocational lives. Participants (n = 55) called for developmentally appropriate care based upon shared decision-making, continuity of health professionals, and wider access to information and community services. Suggestions for improved care included individualized assessment of patient's holistic needs and increased transfer preparation. CONCLUSIONS: These results provide a useful guide to transitional care and suggest an approach that is adolescent-focused and evidence-based.

Adolescent↗

PubMed2004

Unmet education and training needs of rheumatology health professionals in adolescent health and transitional care.

OBJECTIVES: To determine the perceived education and training needs of health professionals involved in transitional care for adolescents with juvenile idiopathic arthritis (JIA). METHODS: Two distinct questionnaires to identify transitional issues in JIA were distributed to key health professionals (n = 908) and clinical personnel involved in the implementation of a transitional care programme (n = 22). RESULTS: The first survey was completed by 263 professionals. Education needs were reported by 114 (43%) of health professionals. Transition issues and informational resources were the most frequently reported areas of need. The second survey was completed by 22 clinical personnel who rated 'lack of training', 'lack of teaching materials geared towards adolescents' and 'limited clinic time' as the main barriers to providing developmentally appropriate care to adolescents. CONCLUSION: Unmet education and training needs of health care professionals exist in key areas of transitional care and provide useful directions for the development of future training programmes.

Adolescent↗

PubMed2003

Developing a programme of transitional care for adolescents with juvenile idiopathic arthritis: results of a postal survey.

OBJECTIVES: To explore the transitional needs of adolescents with juvenile idiopathic arthritis (JIA), as perceived by a range of professionals, and to examine how these needs may be addressed within a structured programme of transitional care. METHODS: Postal surveys (n = 1670) were distributed to key professionals employed in health, social support, education and vocation. RESULTS: Surveys were completed by 478 individuals. The majority of respondents (91%) were currently active in the care of adolescents with JIA. Planning for transitional care was perceived to be important for both adolescents and parents and to require multidisciplinary involvement. Respondents rated a wide range of resources to be important in supporting adolescents, including self-medication teaching packages and social skills training. A number of barriers to providing transitional care were identified, including inadequate resources, coordination and training. CONCLUSION: Transitional care in the context of JIA is perceived as necessary by a wide variety of professionals.

Adolescent↗

PubMed2002

Mapping unexplored genomes: a genetic linkage map of the Hawaiian cricket Laupala.

As with many organisms of evolutionary interest, the Hawaiian cricket Laupala genome is not well characterized genetically. Mapping such an unexplored genome therefore presents challenges not often faced in model genetic organisms and not well covered in the literature. We discuss the evolutionary merits of Laupala as a model for speciation studies involving prezygotic change, our choice of marker system for detecting genetic variation, and the initial genetic expectations pertaining to the construction of any unknown genomic map in general and to the Laupala linkage map construction in particular. We used the technique of amplified fragment length polymorphism (AFLP) to develop a linkage map of Laupala. We utilized both EcoRI/MseI- and EcoRI/PstI-digested genomic DNA to generate AFLP bands and identified 309 markers that segregated among F(2) interspecific hybrid individuals. The map is composed of 231 markers distributed over 11 and 7 species-specific autosomal groups together with a number of putative X chromosome linkage groups. The integration of codominant markers enabled the identification of five homologous linkage groups corresponding to five of the seven autosomal chromosomal pairs found in Laupala.

Animals↗

PubMed2001

Development and preliminary validation of a children's arthritis self-efficacy scale.

OBJECTIVE: To develop a valid and reliable measure of arthritis self-efficacy for use with school-age children with juvenile idiopathic arthritis (JIA). METHODS: Construction of the 11-item Children's Arthritis Self-Efficacy Scale (CASE) was based on an existing body of knowledge and the results of focus groups with children, their parents, and health professionals. Data for validation of the CASE were collected by self-administered questionnaires completed by 89 children and 151 caregivers. RESULTS: Analyses revealed a 3-factor structure relating to self-efficacy for managing symptoms, emotional consequences, and activities, explaining 76.5% of the total variance. The CASE demonstrated high internal consistency, concurrent validity, and construct validity. CONCLUSION: Preliminary findings suggest that the CASE is worthy of further psychometric testing and may have the potential to help delineate variations in adjustment among children with JIA.

Adolescent↗

PubMed2001

Mating asymmetry and the direction of evolution in the Hawaiian cricket genus Laupala.

Based on studies from native Hawaiian Drosophila, a model was proposed to explain sexual isolation and mating asymmetry, from which one could potentially infer the 'direction of evolution'. We examined sexual isolation between allopatric cricket species of the genus Laupala, another endemic Hawaiian insect with an elaborate mating system, to begin to explore the nature of sexual isolation and mating asymmetry in closely related Hawaiian organisms. We studied sexual isolation and mating asymmetry in two contrasts. First, an inter-island comparison, including L. makaio from the older island of Maui and L. paranigra from the younger island of Hawaii, and second, an intra-island (Hawaii) comparison, including L. nigra from the older volcano of Mauna Kea and L. paranigra with a primary distribution on the younger volcanoes of Mauna Loa and Kilauea. We used a 'no-choice' experimental design, pairing individual males and females in homospecific or heterospecific combinations. Several behavioural aspects of courtship (proportion of male singing, latency to male singing, production of spermatophores and courtship initiation speed) were quantified as well as the success or failure of matings. We demonstrate asymmetry in sexual isolation between reciprocal combinations of L. makaio and L. paranigra. This result is examined in light of the differences in courtship behaviour manifest in the experiments with these two species. We did not find evidence of asymmetry in sexual isolation between L. nigra and L. paranigra, although differences in courtship initiation speed were evident between reciprocal combinations of these two species. In addition to the geological argument that species on older islands and older volcanoes give rise to species on younger islands and younger volcanoes, we discuss phylogenetic evidence consistent with these biogeographic hypotheses of relationships among the focal taxa. The patterns of asymmetrical sexual isolation and mating asymmetry are consistent with those found in the native Hawaiian Drosophila.

Animals↗

PubMed2001

Species boundaries and genetic diversity among Hawaiian crickets of the genus Laupala identified using amplified fragment length polymorphism.

Crickets of the genus Laupala represent one of the many morphologically cryptic groups of insects, with the most closely related species distinguished only by the male calling song. Cryptic groups provide a challenge in determining the genetic boundaries between closely related populations and species. We have addressed the question of species boundaries in the Hawaiian cricket, Laupala, using nuclear DNA patterns sampled by the amplified fragment length polymorphism (AFLP) technique. This method has been used widely by plant researchers to facilitate the rapid assessment of genetic diversity in very closely related species and varieties. The AFLP technique is simple and robust, can be applied to any organism, and overcomes problems associated with cost, development time, information content and reproducibility that can plague other marker systems. Our results support previously hypothesized taxonomic relationships among sympatric populations and suggest close genetic relationships among allopatric, conspecific populations.

Animals↗

PubMed2001

The effect of net charge on the solubility, activity, and stability of ribonuclease Sa.

The net charge and isoelectric pH (pI) of a protein depend on the content of ionizable groups and their pK values. Ribonuclease Sa (RNase Sa) is an acidic protein with a pI = 3.5 that contains no Lys residues. By replacing Asp and Glu residues on the surface of RNase Sa with Lys residues, we have created a 3K variant (D1K, D17K, E41K) with a pI = 6.4 and a 5K variant (3K + D25K, E74K) with a pI = 10.2. We show that pI values estimated using pK values based on model compound data can be in error by >1 pH unit, and suggest how the estimation can be improved. For RNase Sa and the 3K and 5K variants, the solubility, activity, and stability have been measured as a function of pH. We find that the pH of minimum solubility varies with the pI of the protein, but that the pH of maximum activity and the pH of maximum stability do not.

Aspartic Acid↗

PubMed2000

Acoustic preference functions and song variability in the Hawaiian cricket Laupala cerasina.

Female preference functions for different sexual traits can differ significantly, from 'unimodal' to 'open ended'. Through the study of acoustic communication in anurans, several studies have reported an association between static (stereotyped) traits versus dynamic (variable) traits and preference function shape (unimodal versus open ended, respectively). Observing a similar pattern in a phylogenetically independent group would suggest that deterministic forces have caused a relationship between signal variability and preference function shape in acoustic signalling systems. We examined this phenomenon in crickets, another animal characterized by intersexual acoustic communication. We measured the within-male variability for three acoustic features of the male calling song in Laupala cerasina and the corresponding shape of the female preference function for each of these features. We offer support for the generalization that open-ended preference functions correspond to relatively dynamic courtship traits and unimodal preference functions correspond to relatively static courtship traits. We discuss the evolutionary significance of these findings in the context of the natural history of the Laupala species radiation.

Acoustic Stimulation↗

PubMed2000

Evidence for DNA loss as a determinant of genome size.

Eukaryotic genome sizes range over five orders of magnitude. This variation cannot be explained by differences in organismic complexity (the C value paradox). To test the hypothesis that some variation in genome size can be attributed to differences in the patterns of insertion and deletion (indel) mutations among organisms, this study examines the indel spectrum in Laupala crickets, which have a genome size 11 times larger than that of Drosophila. Consistent with the hypothesis, DNA loss is more than 40 times slower in Laupala than in Drosophila.

Animals↗

PubMed2000

Linear extrapolation method of analyzing solvent denaturation curves.

The two most common methods of measuring the conformational stability of a protein are differential scanning calorimetry and an analysis of solvent denaturation curves by using the linear extrapolation method. In this article, we trace the history of the linear extrapolation method, review how the method is used to measure protein stability, and then discuss some of the other important uses.

Calorimetry, Differential Scanning↗