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1.
Pediatr Rheumatol Online J ; 14(1): 57, 2016 Oct 19.
Article in English | MEDLINE | ID: mdl-27756328

ABSTRACT

BACKGROUND: Taking medicines as intended is difficult for everybody, but young people going through adolescence have greater problems than adults and younger children. One of the most important things that happen during the teenage years is the development of individual identities, which might not remain constant during this time and can be affected deeply by the diagnosis of a long-term condition. The aim of this study was to examine the relationships between identity and medication use among young people with juvenile arthritis. METHODS: A prospective qualitative study was undertaken to collect private online 'blog' style data from young people (aged 11-19 years) with juvenile arthritis, and their parents, to examine their views about their condition, identity, medication and use of health services. Participants were identified from a large paediatric hospital in the UK. RESULTS: Young people (n = 21) with a median age 14 years (range 11-17 years) posted a median (range) of 8 (1-36) blogs and parents (n = 6) posted 4 (1-12) blogs. Young people gave a strong sense of both private and public identity that was intertwined with their arthritis and treatment. It was evident that young people's self-care was intrinsically linked to their attempts to maintain a sense of individually and socially constructed definitions of normality. The act of taking medication, and the consequences (positive or negative) of that act, had an impact both personally and socially. CONCLUSIONS: Young people with juvenile arthritis reflect on their medication as a factor affecting their perception of themselves. Acknowledging the roles of both personal and social identity will be important in any strategies to support optimal medication use. This includes an understanding of the identity transformations that young people can experience and how decision-making may be affected by their attempts to retain pre-diagnosis identities and/or develop new social identities.


Subject(s)
Antirheumatic Agents/therapeutic use , Arthritis, Juvenile/psychology , Attitude to Health , Adolescent , Arthritis, Juvenile/drug therapy , Child , Female , Humans , Male , Pharmacists , Prospective Studies , Qualitative Research , Self Concept , Social Identification
2.
Child Care Health Dev ; 40(5): 663-70, 2014 Sep.
Article in English | MEDLINE | ID: mdl-24148012

ABSTRACT

OBJECTIVES: To examine the quality of transitional care in a paediatric and adult hospital by investigating (i) adherence to national transition guidance and (ii) whether implementation is associated with better patient/carer experiences. METHODS: A cross-sectional study was conducted in a UK paediatric hospital (PH) and neighbouring adult hospital. Clinics completed a questionnaire to determine characteristics of their transitional care provision and invited patients aged 11-21 years and parents/carers to complete a questionnaire ('Mind the Gap') to assess their satisfaction. RESULTS: Twenty-three clinics participated. Fourteen (70%) reported delivering a transition programme, but only 5 (25%) indicated this was holistic (addressing medical, psychosocial and vocational issues). Participants included 457 young people and 330 parents, 71% and 88% respectively attending the PH. Ratings of current care were significantly lower than ratings of best care. These 'gap' scores were not excessive, although some participants were very dissatisfied. Better satisfaction was associated with attending clinics that provided transitional care, especially when defined as 'holistic' and youth-friendly. CONCLUSIONS: Transition programmes that adhere to current guidance are associated with better satisfaction, but variations in provision suggest barriers to implementation. Attention is required to how youth-friendly transitional care is defined with particular reference to the specific clinic model.


Subject(s)
Adolescent Health Services/organization & administration , Chronic Disease/rehabilitation , Continuity of Patient Care/organization & administration , Guideline Adherence/standards , Adolescent , Child , Chronic Disease/psychology , Cohort Studies , Female , Humans , Male , Patient Satisfaction , Self Care/methods , Surveys and Questionnaires , United Kingdom , Young Adult
3.
J Evol Biol ; 26(2): 286-7, 2013 Feb.
Article in English | MEDLINE | ID: mdl-23324009
4.
J Evol Biol ; 25(8): 1676-85, 2012 Aug.
Article in English | MEDLINE | ID: mdl-22694151

ABSTRACT

Theoretically, asymmetric gene flow along an environmental gradient can limit species range expansion by keeping peripheral populations from locally adapting. However, few empirical studies have examined this potentially fundamental evolutionary mechanism. We address this possibility in the cricket Allonemobius socius, which exist along a season-length gradient where the probability of producing a single generation per year (univoltinism) increases with latitude. As the probability of univoltinism increases northwards, populations are expected to hedge their bets by producing a greater proportion of diapause eggs when exposed to a mild diapause cue. However, gene flow from southern populations may disrupt local adaptation in the north by reducing the proportion of diapause eggs (expected to be 100% in pure univoltine environments). This may limit range expansion along the northern periphery where A. socius compete with A. fasciatus, a sister species that exhibits an invariant diapause-only egg-laying strategy. To assess the potential for range limitation, we examined diapause incidence (the proportion of diapause eggs produced under diapause conditions), gene flow symmetry and population structure across nine A. socius populations. We found that gene flow was asymmetric and biased northwards towards the periphery. Furthermore, peripheral populations that inhabited pure univoltine environments produced numerous nondiapause eggs (a southern, bivoltine diapause phenotype), which we assume to be a suboptimal phenotype. These patterns suggest that asymmetric gene flow along the gradient constrains adaptation in peripheral populations, potentially constraining species range expansion.


Subject(s)
Adaptation, Physiological/genetics , Environment , Gene Flow , Gryllidae/genetics , Animals , Genetic Variation , Genetics, Population
5.
J Evol Biol ; 25(8): 1500-12, 2012 Aug.
Article in English | MEDLINE | ID: mdl-22591212

ABSTRACT

Understanding the genetic architecture of traits involved in premating isolation between recently diverged lineages can provide valuable insight regarding the mode and tempo of speciation. The repeated coevolution of male courtship song and female preference across the species radiation of Laupala crickets presents an unusual opportunity to compare the genetic basis of divergence across independent evolutionary histories. Previous studies of one pair of species revealed a polygenic basis (including a significant X chromosome contribution) to quantitative differences in male song and female acoustic preference. Here, we studied interspecific crosses between two phenotypically less-diverged species that represents a phylogenetically independent occurrence of intersexual signalling evolution. We found patterns consistent with an additive polygenic basis to differentiation in both song and preference (n(E) = 5.3 and 5.1 genetic factors, respectively), and estimate a moderate contribution of the X chromosome (7.6%) of similar magnitude to that observed for Laupala species with nearly twice the phenotypic divergence. Together, these findings suggest a similar genetic architecture underlying the repeated evolution of sexual characters in this genus and provide a counterexample to prevailing theory predicting an association between early lineage divergence and sex-linked 'major genes'.


Subject(s)
Animal Communication , Genetic Speciation , Gryllidae/genetics , Animals , Biological Evolution , Female , Hawaii , Male , Phenotype , Sexual Behavior, Animal/physiology
6.
J Evol Biol ; 24(5): 1110-9, 2011 May.
Article in English | MEDLINE | ID: mdl-21375646

ABSTRACT

Sexual behaviours often evolve rapidly and are critical for sexual isolation. We suggest that coordinated sexual signals and preferences generate stabilizing selection, favouring the accumulation of many small-effect mutations in sexual communication traits. Rapid radiation of a sexual behaviour used in signalling, song pulse rate, has been observed in the Hawaiian cricket genus Laupala. Using marker-assisted introgression, we isolated five known quantitative trait loci (QTL) influencing species-level differences in pulse rate from one species, L. paranigra, into a closely related species, L. kohalensis. All five QTL were found to have a significant effect on song and appear to be largely additive in backcross introgression lines. Furthermore, all effect sizes were small in magnitude. Our data provide support for the hypothesis that stabilizing selection on sexual signals in Laupala creates genetic conditions favourable to incremental divergence during speciation, through the evolution of alleles of minor rather than major phenotypic effects.


Subject(s)
Animal Communication , Genetic Speciation , Gryllidae/genetics , Quantitative Trait Loci , Sexual Behavior, Animal , Alleles , Animals , Biological Evolution , Female , Gene Frequency , Genotype , Male
7.
Palliat Med ; 24(3): 317-29, 2010 Apr.
Article in English | MEDLINE | ID: mdl-20156934

ABSTRACT

The Gold Standards Framework aims to optimize primary palliative care for patients nearing the end of their lives. This paper critically reviews the impact of the Gold Standards Framework since its introduction in 2001 and indicates direction for further research and development. Literature was accessed using specific databases and by contacting subject area specialists. The resultant literature was appraised using an established framework to evaluate healthcare interventions. Fifteen documents were reviewed. The quality of evidence is constrained by methodological limitations, but consistently demonstrates that the Gold Standards Framework improves general practice processes, co-working and the quality of palliative care. However, implementation of the Gold Standards Framework is variable and the direct impact on patients and carers is not known. We conclude that the Gold Standards Framework has considerable potential to improve end-of-life care, but further work is needed to support uptake and consistency of implementation. Additional evidence about patient and carer outcomes will add to existing insights.


Subject(s)
Health Knowledge, Attitudes, Practice , Primary Health Care/standards , Program Evaluation , Quality Assurance, Health Care/standards , Terminal Care/standards , Community Health Nursing , Family Practice/organization & administration , Family Practice/standards , Guideline Adherence , Health Plan Implementation/organization & administration , Humans , Interprofessional Relations , Primary Health Care/organization & administration , Review Literature as Topic , Terminal Care/organization & administration , Workload
8.
Int J Sports Med ; 31(1): 38-43, 2010 Jan.
Article in English | MEDLINE | ID: mdl-19885774

ABSTRACT

This pilot study compared the energy expenditure required to climb an indoor rock wall, in amputees utilizing five prosthetic configurations. Three experienced climbers (1M age 21 yr, 2F ages 30 and 49 yr) with unilateral transfemoral amputation climbed a 9.14 m indoor rock wall, 5.9 Yosemite Decimal Scale rating, using the following prosthetic configurations: 1. no prosthesis; 2. stubby prosthesis-foot forward; 3. stubby prosthesis-foot backward; 4. articulated prosthesis-knee unlocked; 5. articulated prosthesis-knee locked. Subjects climbed three times with each configuration resulting in 15 climbs per subject. Metabolic data was collected using the COSMED K4b(2) system. VO(2) was 15, 18 and 20% greater in the articulated unlocked condition (mean+/-SE: 20.5+/-0.8 ml.kg (-1).min (-1)), and 11, 13 and 15% greater in the articulated locked condition (19.7+/-0.9 ml.kg (-1).min (-1)), compared to the no prosthesis (17.8+/-0.7 ml.kg (-1).min (-1)), stubby backward (17.4+/-0.7 ml.kg (-1).min (-1)) and stubby forward (17.1+/-0.9 ml.kg (-1).min (-1)) conditions. Participants expended 11-20% more energy using the articulated prostheses than with the stubby and no prosthesis conditions. In persons with transfemoral amputation, use of an articulated prosthesis in indoor rock climbing may be a disadvantage in many aspects including competition, training, rehabilitation and satisfaction with the activity.


Subject(s)
Amputees , Artificial Limbs , Mountaineering/physiology , Adult , Energy Metabolism/physiology , Female , Femur , Humans , Male , Middle Aged , Oxygen Consumption/physiology , Pilot Projects , Prosthesis Design , Young Adult
9.
Gene Ther ; 16(8): 998-1008, 2009 Aug.
Article in English | MEDLINE | ID: mdl-19440227

ABSTRACT

An important goal of gene therapy is to be able to deliver genes, so that they express in a pattern that recapitulates the expression of an endogenous cellular gene. Although tissue-specific promoters confer selectivity, in a vector-based system, their activity may be too weak to mediate detectable levels in gene-expression studies. We have used a two-step transcriptional amplification system to amplify gene expression from lentiviral vectors using the human insulin promoter. In this system, the human insulin promoter drives expression of a potent synthetic transcription activator (the yeast GAL4 DNA-binding domain fused to the activation domain of the Herpes simplex virus-1 VP16 activator), which in turn activates a GAL4-responsive promoter, driving the enhanced green fluorescent protein reporter gene. Vectors carrying the human insulin promoter did not express in non-beta-cell lines, but expressed in murine insulinoma cell lines, indicating that the human insulin promoter was capable of conferring cell specificity of expression. The insulin-amplifiable vector was able to amplify gene expression five to nine times over a standard insulin-promoter vector. In primary human islets, gene expression from the insulin-promoted vectors was coincident with insulin staining. These vectors will be useful in gene-expression studies that require a detectable signal and tissue specificity.


Subject(s)
Gene Transfer Techniques , Genetic Vectors , Insulin-Secreting Cells/metabolism , Insulin/genetics , Lentivirus/genetics , Transcriptional Activation/genetics , Animals , Cell Line , Gene Expression , Green Fluorescent Proteins/genetics , Humans , Islets of Langerhans/metabolism , Mice , Organ Specificity , Phosphoglycerate Kinase/genetics , Promoter Regions, Genetic
10.
Rheumatology (Oxford) ; 47(10): 1577-82, 2008 Oct.
Article in English | MEDLINE | ID: mdl-18713769

ABSTRACT

OBJECTIVE: Effective treatment can only be given during the early stages of RA if patients are seen early. However, many patients delay for prolonged periods before seeking medical advice. This study explores factors influencing the decision to seek medical advice in RA patients. METHODS: In-depth, semi-structured interviews were carried out with 24 patients. Purposive sampling ensured a cross-section in terms of time to presentation, gender, age and ethnic background. Interview transcripts were analysed and themes identified using established methods. RESULTS: Four main themes influenced the decision to seek medical advice: (i) symptom experience: the severity of symptoms and their impact on functional ability; (ii) symptom evaluation: the patient's explanation for their symptoms and recognition of their significance; (iii) knowledge of RA and available therapies; and (iv) experience of and attitudes towards health care providers. A significant and rapid impact of the disease on functional ability characterized those presenting early. Many developed an explanation for their symptoms that related to preceding activities. Recognition that this explanation was inadequate to explain symptom progression frequently prompted a consultation. Only one patient sought advice because she thought that she might have RA. CONCLUSIONS: Symptom evaluation is a key factor influencing how quickly medical advice is sought in other diseases. In contrast to the situation with many cancers where there is widespread association of symptoms and signs with the eventual diagnosis, this was not the case in RA. Our findings should inform strategies to reduce delays in help-seeking in people with early RA.


Subject(s)
Arthritis, Rheumatoid/diagnosis , Decision Making , Patient Acceptance of Health Care/psychology , Adult , Aged , Arthritis, Rheumatoid/complications , Arthritis, Rheumatoid/physiopathology , Arthritis, Rheumatoid/psychology , Attitude to Health , Early Diagnosis , England , Family Practice , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Middle Aged , Pain/etiology , Patient Selection
11.
Child Care Health Dev ; 33(4): 368-79, 2007 Jul.
Article in English | MEDLINE | ID: mdl-17584391

ABSTRACT

BACKGROUND: To examine the quality of transitional health care from the perspectives of young people with juvenile idiopathic arthritis (JIA) and their parents. METHODS: Adolescents with JIA and their parents were recruited from 10 major UK rheumatology centres. Satisfaction with health-care delivery was measured prior to, and 12 months after, the implementation of a structured and co-ordinated programme of transitional care using self-completed questionnaires designed for this study. RESULTS: Of 359 families invited to participate, 308 (86%) adolescents with JIA and 303 (84%) parents/guardians accepted. A fifth of adolescents had persistent oligoarthritis. Median age was 14.2 (11-18) years with median disease duration of 5.7 (0-16) years. Young people and their parents rated provider characteristics more important than aspects of the physical environment or process issues. Staff honesty and knowledge were rated as the most essential aspects of best practice. Prior to implementing the programme of transitional care, parents rated service delivery for all items significantly worse than best practice. Overall satisfaction improved 12 months after entering the programme. However, while parent satisfaction improved for 70.4% of items, significant improvements were only observed for three (13.6%) items rated by adolescents. CONCLUSION: The perceived quality of health care for young people with JIA and their parents was significantly lower than what they would like. Satisfaction with many aspects of care during transition from paediatric to adult services can be improved through the implementation of a structured, co-ordinated programme of transitional care.


Subject(s)
Adolescent Health Services/organization & administration , Arthritis, Juvenile/psychology , Continuity of Patient Care/organization & administration , Quality of Life , Sickness Impact Profile , Adolescent , Adult , Arthritis, Juvenile/rehabilitation , Child , Chronic Disease , Cohort Studies , Female , Humans , Male , Parents , Patient Satisfaction , Program Development , Self Care/methods , Surveys and Questionnaires , United Kingdom
12.
Child Care Health Dev ; 33(4): 380-8, 2007 Jul.
Article in English | MEDLINE | ID: mdl-17584392

ABSTRACT

BACKGROUND: To develop a scale to assess satisfaction with transitional health care among adolescents with a chronic illness and their parents. METHODS: The 'Mind the Gap' scale was developed using evidence from a previous needs assessment, in three stages: (1) definition of the construct; (2) design of the scale items, response options and instructions; (3) full administration of the scale, item analysis and dimensionality analysis. The scale was administered to 308 adolescents with juvenile idiopathic arthritis (JIA) and 303 parents/guardians, prior to and 12 months after the implementation of an evaluation of a structured and co-ordinated programme of transitional care. The patient population involved adolescents with JIA and their parents recruited from 10 major UK rheumatology centres. RESULTS: A total of 301 (97.7%) adolescents and 286 (95.0%) parents chose to complete the questionnaire, with median item completion rates of 100.0% (0-100%) for both adolescents and parents thus confirming feasibility. Face and content validity were confirmed. Factor analyses revealed a three-factor structure which explained 49.5% and 56.1% of the variation in adolescent and parent scores respectively. The internal consistency of each subscale ('management of environment', 'provider characteristics' and 'process issues') was indicated by Cronbach's alphas of 0.71, 0.89 and 0.89 for adolescents, respectively, and 0.83, 0.91 and 0.92 for parents respectively. Cronbach's alphas for the entire scales were 0.91 and 0.94 for the adolescent and parent forms respectively. CONCLUSION: These preliminary results report the potential of the 'Mind the Gap' scale in evaluating transitional care for adolescents with JIA. In view of the generic nature of transitional care reflected in the scale, this scale has wider potential for use with adolescents with other chronic illness in view of the generic nature of transition. This development is particularly timely in the context of transitional care developments in the UK and further validation of the scale is in progress.


Subject(s)
Adolescent Health Services/organization & administration , Arthritis, Juvenile/psychology , Continuity of Patient Care/organization & administration , Quality of Life , Sickness Impact Profile , Adolescent , Adult , Aged , Arthritis, Juvenile/rehabilitation , Child , Chronic Disease/psychology , Cohort Studies , Humans , Middle Aged , Parents , Patient Satisfaction , Self Care/methods , Surveys and Questionnaires , United Kingdom
13.
Rheumatology (Oxford) ; 46(1): 161-8, 2007 Jan.
Article in English | MEDLINE | ID: mdl-16790451

ABSTRACT

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.


Subject(s)
Adolescent Health Services/organization & administration , Arthritis, Juvenile/rehabilitation , Continuity of Patient Care/organization & administration , Quality of Life , Sickness Impact Profile , Adolescent , Arthritis, Juvenile/psychology , Child , Delivery of Health Care, Integrated , Female , Follow-Up Studies , Health Behavior , Health Knowledge, Attitudes, Practice , Health Services Research , Humans , Male , Patient Satisfaction , Program Evaluation , Severity of Illness Index , Treatment Outcome
14.
Arthritis Rheum ; 55(2): 189-98, 2006 Apr 15.
Article in English | MEDLINE | ID: mdl-16583398

ABSTRACT

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.


Subject(s)
Arthritis, Juvenile , Parents , Quality of Life , Adolescent , Child , Disabled Persons , Female , Humans , Male , Pain Measurement , Surveys and Questionnaires
15.
Arthritis Rheum ; 55(2): 199-207, 2006 Apr 15.
Article in English | MEDLINE | ID: mdl-16583399

ABSTRACT

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.


Subject(s)
Arthritis, Juvenile , Quality of Life , Adolescent , Arthritis, Juvenile/physiopathology , Arthritis, Juvenile/psychology , Child , Female , Humans , Male , Psychomotor Performance
16.
Ann Rheum Dis ; 65(1): 74-80, 2006 Jan.
Article in English | MEDLINE | ID: mdl-15994281

ABSTRACT

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.


Subject(s)
Arthritis, Juvenile/therapy , Continuity of Patient Care/standards , Adolescent , Adolescent Behavior , Adolescent Health Services/standards , Adult , Age Factors , Arthritis, Juvenile/psychology , Child , Health Services Research , Humans , Medical Audit , Medical Records/standards , Needs Assessment/standards , Patient Advocacy/standards , Patient Care Team , Professional-Family Relations , Retrospective Studies , Self Care , Statistics, Nonparametric , United Kingdom
17.
Mol Phylogenet Evol ; 38(2): 510-30, 2006 Feb.
Article in English | MEDLINE | ID: mdl-16298145

ABSTRACT

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.


Subject(s)
Evolution, Molecular , Orthoptera/classification , RNA, Ribosomal, 16S/genetics , RNA, Ribosomal, 18S/genetics , RNA, Ribosomal, 28S/genetics , Vocalization, Animal , Animals , Orthoptera/genetics , Phylogeny , Sequence Alignment , Sequence Analysis, DNA
18.
Rheumatology (Oxford) ; 44(6): 806-12, 2005 Jun.
Article in English | MEDLINE | ID: mdl-15769786

ABSTRACT

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.


Subject(s)
Arthritis, Juvenile/therapy , Continuity of Patient Care/organization & administration , Adolescent , Age of Onset , Antirheumatic Agents/therapeutic use , Arthritis, Juvenile/drug therapy , Arthritis, Juvenile/physiopathology , Child , Cohort Studies , Female , Humans , Joints/physiopathology , Male , Pain Measurement/methods , Parents , Personal Autonomy , Rehabilitation, Vocational/methods , Self Care/methods , Workload
19.
Rheumatology (Oxford) ; 43(8): 1000-6, 2004 Aug.
Article in English | MEDLINE | ID: mdl-15150431

ABSTRACT

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.


Subject(s)
Arthritis, Juvenile/rehabilitation , Delivery of Health Care/methods , Adolescent , Adult , Arthritis, Juvenile/psychology , Attitude of Health Personnel , Attitude to Health , Child , Continuity of Patient Care/standards , Delivery of Health Care/standards , Delphi Technique , Humans , Parents/psychology , Professional-Patient Relations , Psychology, Adolescent , Quality of Health Care/standards , State Medicine , United Kingdom
20.
Rheumatology (Oxford) ; 43(6): 770-8, 2004 Jun.
Article in English | MEDLINE | ID: mdl-15039498

ABSTRACT

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.


Subject(s)
Adolescent Health Services/organization & administration , Arthritis, Juvenile/therapy , Continuity of Patient Care/organization & administration , Needs Assessment , Adolescent , Adult , Attitude to Health , Child , England , Female , Focus Groups , Health Services Research , Humans , Male , Professional-Patient Relations , Program Development
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