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1.
Artigo em Inglês | MEDLINE | ID: mdl-32286729

RESUMO

OBJECTIVES: As young people enter adulthood, the interchangeable use of child and adult outcome measures may inaccurately capture changes over time. This study aimed to use item response theory (IRT) to model a continuous score for functional ability that can be used no matter which questionnaire is completed. METHODS: Adolescents (11-17 yrs) in the UK Childhood Arthritis Prospective Study self-completed an adolescent-Childhood Health Assessment Questionnaire (A-CHAQ) and a Health Assessment Questionnaire (HAQ). Their parents completed the proxy-CHAQ (P-CHAQ). Those with at least two simultaneously completed questionnaires at initial presentation or one year were included. Psychometric properties of item responses within each questionnaire were tested using Mokken analyses to assess the applicability of IRT modelling. A previously developed IRT model from the Pharmachild-NL registry was validated in CAPS participants. Agreement and correlations between IRT-scaled functional ability scores were tested using intra-class correlations and Wilcoxon signed-ranked tests. RESULTS: In 303 adolescents, median age at diagnosis was 13 years and 61% were female. CHAQ scores consistently exceeded HAQ scores. Mokken analyses demonstrated high scalability, monotonicity and that each questionnaire yielded reliable scores. There was little difference in item response characteristics between adolescents enrolled to CAPS and Pharmachild (maximum item residual 0.08). Significant differences were no longer evident between IRT-scaled HAQ and CHAQ scores. CONCLUSION: IRT modelling allows the direct comparison of function scores regardless of different questionnaires being completed by different people over time. This facilitates ongoing assessment of function as adolescents transfer from paediatric clinics to adult services.

2.
Clin Child Psychol Psychiatry ; : 1359104520907147, 2020 Feb 21.
Artigo em Inglês | MEDLINE | ID: mdl-32081019

RESUMO

There is increasing global attention on the health and wellbeing needs of young people. Preventive and proactive approaches will likely lead to the clearest dividends for young people, their own children and wider society. A brief overview of the international context for young people's health care is given. As well as influencing policy, there are important roles for the health care team, including psychologists, to influence the organisations they work within, advocating for the needs of young people and their families. This is the focus of this article. The concept of developmentally appropriate health care (DAH) for young people is explored. It could help when planning services and approaches that respond to the needs of young people. Building relationships is likely to be key, to connect with young people to help them make health and wellbeing decisions, and provide individualised support. The 'connectedness' research could also be helpful in looking beyond the health care evidence. A key challenge for psychologists and their multi-disciplinary health care colleagues, in practice and research, is to move away from a reliance on binary, easier-to-measure health and wellbeing outcomes and, instead, find ways to promote and measure developmental outcomes that are meaningful to young people and their families.

3.
Clin Med (Lond) ; 20(1): 74-80, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31941736

RESUMO

BACKGROUND: During transition from children's to adults' healthcare, young adults with long-term conditions may show delays in psychosocial development compared to their peers without long-term conditions, and deterioration of their conditions' medical control. METHODS: This paper integrates the findings, already published in 10 separate papers, of a 5-year transition research programme. IMPLICATIONS: There is an important role for funders (commissioners) of adults' services to fund transitional healthcare, in addition to funders of children's services who currently take responsibility.It is important that healthcare provider organisations adopt an organisation-wide approach to implementation to ensure that good practice is adopted in children's and adults' services, not just adopted by enthusiasts in some specialties. This includes provision of 'developmentally appropriate healthcare' which recognises the changing biopsychosocial developmental needs of young people.Three features of transitional healthcare were associated with improved outcomes: appropriate parent involvement, promotion of young people's confidence in managing their health and meeting the adult team before transfer. These should be maintained or introduced as a priority.Child and adult healthcare providers should routinely explore with a young person how they approach transition and personalise their clinical approach thereafter.These implications are relevant for a range of stakeholders, including funders of transitional healthcare, organisations providing transitional healthcare and clinical practitioners.

4.
Curr Rheumatol Rep ; 21(10): 57, 2019 Sep 06.
Artigo em Inglês | MEDLINE | ID: mdl-31492991

RESUMO

PURPOSE OF REVIEW: Effective transitional care for adolescents and young adults (AYA) with rheumatic musculoskeletal disease (RMD) is fundamental to rheumatology care provision. Here we review the recent evidence from the literature on transition in rheumatology and debate why universal implementation has yet to be recognised. RECENT FINDINGS: Evidence of need for transitional care continues to be reported. The triphasic nature of transitional care remains poorly recognised, and the third phase following transfer to adult rheumatology is particularly under-researched in spite of the recognition of the age-related trajectories of transition skill development during young adulthood. Several rheumatology-specific transitional care interventions have now been evaluated but the search for valid measures including outcome continues. Finally, the need to study transition at a health system level is increasingly recognised. Future research in this area should consider the developmental trajectories of AYA as well as the social-ecological model of transition readiness, which focuses on the interactions between AYA, caregivers and providers (and the systems they are part of) as these are the likely targets of any intervention to improve health transitions.

5.
BMJ Open ; 9(9): e029107, 2019 Sep 09.
Artigo em Inglês | MEDLINE | ID: mdl-31501109

RESUMO

OBJECTIVE: The WHO has argued that adolescent-responsive health systems are required. Developmentally appropriate healthcare (DAH) for young people is one approach that could underpin this move. The aim of this study was to explore the potential for DAH to become normalised, to become a routine, taken-for-granted, element of clinical practice. DESIGN: Qualitative ethnographic study. Analyses were based on procedures from first-generation grounded theory and theoretically informed by normalisation process theory. SETTING: Two tertiary and one secondary care hospital in England. PARTICIPANTS: 192 participants, health professionals (n=121) and managers (n=71) were recruited between June 2013 and January 2015. Approximately 1600 hours of non-participant observations in clinics, wards and meeting rooms were conducted, alongside 65 formal qualitative interviews. RESULTS: We observed diverse values and commitments towards the care of young people and provision of DAH, including a distributed network of young person-orientated practitioners. Informal networks of trust existed, where specific people, teams or wards were understood to have the right skill-mix, or mindset, or access to resources, to work effectively with young people. As young people move through an organisation, the preference is to direct them to other young person-orientated practitioners, so inequities in skills and experience can be self-sustaining. At two sites, initiatives around adolescent and young adult training remained mostly within these informal networks of trust. At another, through support by wider management, we observed a programme that sought to make the young people's healthcare visible across the organisation, and to get people to reappraise values and commitment. CONCLUSION: To move towards normalisation of DAH within an organisation, we cannot solely rely on informal networks and cultures of young person-orientated training, practice and mutual referral and support. Organisation-wide strategies and training are needed, to enable better integration and consistency of health services for all young people.

7.
Pediatr Transplant ; 23(6): e13530, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31240785

RESUMO

INTRODUCTION: Transition from pediatric to adult services of young people with a liver transplant is an important priority due to increasing numbers of young people surviving into adulthood. There is increased incidence of graft loss and non-adherence following transfer to adult services. Although studies have considered the views and perceptions of young people who have undergone liver transplantation and their parents about transition, there is currently no qualitative research with healthcare professionals working in the field of liver transplantation. The aim of this study was to elicit the views of this group of stakeholders about barriers and facilitators of an effective transition process. METHODS: Semi-structured interviews were carried out with 11 HCPs from pediatric and adult liver transplant programs and from a range of professional backgrounds. Interviews were transcribed verbatim and analyzed using thematic analysis. RESULTS: Four themes were identified: "non-adherence and psychosocial issues," "need for better psychological support," "the role of parents," and "the emotional impact of transition on healthcare professionals." Within these themes, professionals described factors which hindered or promoted an effective transition process. CONCLUSIONS: Screening tools which address psychological and social aspects of the lives of young people should be used in routine practice to identify patients requiring psychosocial support and to identify those at risk of non-adherence. All staff involved with transition should be trained in the use of psychosocial screening strategies. The development of a formal referral pathway so that young people can access psychological support in adult services is recommended.

8.
Artigo em Inglês | MEDLINE | ID: mdl-30875458

RESUMO

OBJECTIVE: In paediatric research, investigators rely on proxy reports of outcome, such as the proxy-completed Childhood Health Assessment Questionnaire (P-CHAQ), to assess function in JIA. As children mature, they may self-complete the adult Health Assessment Questionnaire (HAQ) or the un-validated adolescent-specific CHAQ (A-CHAQ). It is unclear how these measures compare and whether they are directly interchangeable. METHODS: Adolescents aged 11 to 17 years participating in the Childhood Arthritis Prospective Study, a UK multicentre inception cohort, were included. In a CAPS sub-study, adolescents self-completed the A-CHAQ and HAQ and proxies simultaneously completed the P-CHAQ at baseline and one year. Correlation and agreement between scores were assessed at baseline. Agreement and ability to similarly classify clinically important changes over time were assessed at one year following initial presentation to rheumatology. RESULTS: 107 adolescents (A-CHAQ and HAQ) or their proxies (P-CHAQ) had completed all three measures at baseline. Median age at diagnosis was 13 years and 61% were female. Although the three scores demonstrated strong correlations (r>0.8), they were not completely interchangeable, with agreement ranging between 70 and 80%. There was similar agreement between the changes in scores between baseline and one year. Using P-CHAQ minimal clinically important cut-offs, the A-CHAQ and HAQ similarly classified 80 to 90% of adolescents as having improved or worsened. CONCLUSION: Whilst there is relatively high agreement and similar classification of change between HAQ and two CHAQ scores, these are not completely interchangeable. This impacts the comparison of function when measured in different ways over the lifespan.

9.
Artigo em Inglês | MEDLINE | ID: mdl-30851159

RESUMO

Introduction Young people's transition into adulthood is intertwined with the worlds of education and work. Poor health in adolescence has been associated with poorer education and employment outcomes in adulthood. This paper explores the impact of arthritis on the educational and early work experiences of young people with arthritis. Methods We undertook a supplementary secondary analysis of a qualitative dataset comprising narrative and semi-structured interviews of 39 young people who had been diagnosed with arthritis in childhood, adolescence or young adulthood. Results Our findings illustrate how young people living with arthritis are faced with a range of added disruptions and challenges in their educational/vocational lives. There is an important element of resilience associated with the process of making a career choice and acting upon personal aspirations. Appropriate support and flexibility in the workplace/educational setting can enable successful outcomes, but disclosure is not a straightforward process for young people living with arthritis. Conclusions It is paramount that health providers consistently and effectively address self-advocacy skills with the young person, particularly during educational and vocational transitions. Alongside this, there is the need to further strengthen the health-school/work interface to ensure that young people living with chronic illness can meet their full potential in adulthood.

11.
Best Pract Res Clin Rheumatol ; 32(2): 206-222, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-30527427

RESUMO

Juvenile idiopathic arthritis (JIA) is the most common inflammatory joint condition of childhood and represents seven JIA subtypes characterised by distinct clinical and laboratory variables. Genetic and environmental factors are known to influence JIA, although many unanswered questions remain. Measurement of health outcomes in JIA is imperative for both clinical practice and research. Patient-reported outcomes present particular challenges in paediatric rheumatology in view of the importance of collecting reports from both the child/young person and the parent. Another challenge is the need for continuity of outcome measurement across the paediatric-adult interface during the process of transition in terms of both measurement tools and the mechanisms in the system to facilitate tracking of the young person into adult care. Finally, the need for adults with JIA to be seen as a distinct group in adult rheumatology practice is important for both service provision and outcome research.


Assuntos
Artrite Juvenil/epidemiologia , Artrite Juvenil/etiologia , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Reumatologia , Fatores de Risco
13.
Pediatr Rheumatol Online J ; 16(1): 35, 2018 May 24.
Artigo em Inglês | MEDLINE | ID: mdl-29793489

RESUMO

BACKGROUND: Involving people of all ages in health research is now widely advocated. To date, no studies have explored whether and how young people with chronic rheumatic conditions want to be involved in influencing health research. This study aimed to explore amongst young people with rheumatic conditions, 1) their experiences of research participation and involvement 2) their beliefs about research involvement and 3) beliefs about how young people's involvement should be organized in the future. METHODS: Focus groups discussions with young people aged 11-24 years with rheumatic conditions across the UK. Data was analysed using a qualitative Framework approach. RESULTS: Thirteen focus groups were held involving 63 participants (45 F: 18 M, mean age 16, range 10 to 24 years) across the UK. All believed that young people had a right to be involved in influencing research and to be consulted by researchers. However, experience of research involvement varied greatly. For many, the current project was the first time they had been involved. Amongst those with experience of research involvement, awareness of what they had been involved in and why was often low. Those who had previously participated in research appeared more positive and confident about influencing research in the future. However, all felt that there were limited opportunities for them to be both research participants and to get involved in research as public contributors. CONCLUSIONS: These findings suggest that there is an on-going need to both increase awareness of research involvement and participation of young people in rheumatology as well as amongst young people themselves.


Assuntos
Pesquisa Biomédica , Conhecimentos, Atitudes e Prática em Saúde , Participação do Paciente/psicologia , Doenças Reumáticas/psicologia , Adolescente , Criança , Cultura , Feminino , Grupos Focais , Humanos , Masculino , Pesquisa Qualitativa , Reino Unido , Adulto Jovem
14.
Arthritis Rheumatol ; 70(9): 1519-1529, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29648683

RESUMO

OBJECTIVE: Potential targets for treat-to-target strategies in juvenile idiopathic arthritis are minimal disease activity (MDA) and clinically inactive disease (CID). We undertook this study to compare short- and long-term outcomes following achievement of MDA and CID on the 10-joint clinical Juvenile Arthritis Disease Activity Score (cJADAS10) and following achievement of CID on Wallace et al's preliminary criteria. METHODS: Children recruited to the Childhood Arthritis Prospective Study, a UK multicenter inception cohort, were selected if they were recruited prior to January 2011 and diagnosed as having oligoarthritis or rheumatoid factor-negative or -positive polyarthritis. One year following diagnosis, children were assessed for MDA on the cJADAS10 and for CID on both Wallace et al's preliminary criteria and the cJADAS10. Associations were tested between those disease states and functional ability, absence of joints with limited range of motion, psychosocial health, and pain at 1 year and annually to 5 years. RESULTS: Of 832 children, 70% were female and the majority had oligoarthritis (68%). At 1 year, 21% had achieved CID according to both definitions, 7% according to Wallace et al's preliminary criteria alone, and 16% according to the cJADAS10 alone; 56% had not achieved CID. Only 10% of children in the entire cohort achieved MDA without also achieving CID. Achieving either early CID state was associated with a greater absence of joints with limited range of motion. However, only CID according to the cJADAS10 was associated with improved functional ability and psychosocial health. Achieving CID was superior to achieving MDA in terms of short- and long-term pain and the absence of joints with limited range of motion. CONCLUSION: CID on the cJADAS10 may be preferable as a treatment target to CID on Wallace et al's preliminary criteria in terms of both feasibility of application and long-term outcomes.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Juvenil/patologia , Quimioterapia de Indução/estatística & dados numéricos , Índice de Gravidade de Doença , Adolescente , Artrite Juvenil/tratamento farmacológico , Criança , Feminino , Humanos , Masculino , Estudos Prospectivos , Qualidade de Vida , Fatores de Tempo , Resultado do Tratamento
15.
Health Expect ; 21(4): 730-740, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29424066

RESUMO

BACKGROUND: We explore the concept of "untimely diagnosis," where the onset of a long-term condition occurs at a life stage which does not conform to traditional expectations, focusing on two conditions (asthma and arthritis) typically associated with a particular life stage (childhood and older adulthood, respectively). Previous literature has focused on the meaning of chronic illness in terms of life history, and the biographical lens has been used in various ways to make sense of the experience. Less attention has been paid to the condition onset when it seems dissonant with chronological age. METHODS: Secondary analysis of two qualitative data sets (total 58 interviews) exploring the experiences of people with adult-onset asthma and young people diagnosed with arthritis. Data from the original interview transcripts relating to diagnosis and symptom recognition were re-analysed using a "candidacy" framework to examine how age and diagnosis intersect. RESULTS: People did not always assert their candidacy for either condition because of pre-conceived expectations around age. Similarly, health professionals sometimes failed to recognize patients' candidacy, instead pursuing "age-plausible" possibilities. In some cases, participants were proactive in suggesting a diagnosis to the health professional where diagnosis was delayed. CONCLUSION: The diagnosis of adult-onset asthma, and arthritis in young people, may be regarded as "untimely." We suggest that being diagnosed with what is perceived to be a "childhood" condition in adulthood, or "an older person's" condition in childhood, may be viewed as a "biographical paradox" and an "untimely breach" to the expected order.


Assuntos
Idade de Início , Artrite Juvenil/diagnóstico , Asma/diagnóstico , Doença Crônica/psicologia , Adolescente , Adulto , Idoso , Feminino , Pessoal de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade de Vida/psicologia , Adulto Jovem
16.
Arthritis Res Ther ; 20(1): 5, 2018 01 11.
Artigo em Inglês | MEDLINE | ID: mdl-29325599

RESUMO

Significant progress has been made in the understanding of transitional care in rheumatology over the last few decades, yet universal implementation has not been realised and unmet needs continue to be reported. Possible explanations for this include lack of evidence as to which model is most effective; lack of attention to the multiple dimensions, stakeholders and systems involved in health transitions; and lack of consideration of the developmental appropriateness of transition interventions and the services/organisations/systems where such interventions are delivered.Successful transition has major implications to both the young people with juvenile-onset rheumatic disease and their families. Future research in this area will need to reflect both the multidimensional (biopsychosocial) and the multisystemic (multiple systems and stakeholders across personal/social/family support networks and health/social care/education systems). Only then will we be able to determine which aspects of transition readiness and service components influence which dimension. It is therefore imperative we continue to research and develop this area, involving both paediatric and adult rheumatology clinicians and researchers, remembering to look beyond both the condition and our discipline. Neither should we forget to tap into the exciting potential associated with digital technology to ensure further advances in transitional care are brought about in and beyond rheumatology.


Assuntos
Artrite Juvenil/terapia , Doenças Reumáticas/terapia , Reumatologia/métodos , Cuidado Transicional , Adolescente , Adulto , Idade de Início , Artrite Juvenil/diagnóstico , Criança , Humanos , Doenças Reumáticas/diagnóstico , Reumatologia/tendências
19.
Disabil Rehabil ; 40(16): 1921-1928, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-28503954

RESUMO

PURPOSE: This study explored expectations and experiences of employment among young people with juvenile idiopathic arthritis and the role of health professionals in promoting positive employment outcomes. METHODS: Semistructured interviews (n = 13) and three focus groups (n = 9, n = 4, n = 3) were conducted with young people (16-25 y) and adults (26-31 y) with juvenile idiopathic arthritis and semistructured interviews (n = 9) were conducted with health professionals. Transcripts were analyzed thematically. RESULTS: Young people with juvenile idiopathic arthritis have concerns about employers' attitudes toward employees with long-term health conditions and lack knowledge of antidiscrimination legislation. Young people not in education, employment or training identify arthritis as a key barrier. Challenges associated with arthritis (e.g., pain, psychological distress) may not be visible to employers. Decisions about disclosing arthritis are challenging and cause anxiety. Young people associate good disease management and access to flexible and convenient care with their capacity to succeed in employment. Psychosocial and vocational interventions have benefited some young people but are not routinely available. CONCLUSIONS: Low expectations of employers may affect young people's decisions about disclosure and seeking appropriate support in the work place. Health professionals can equip young people with knowledge and skills to negotiate appropriate support, through signposting to antidiscrimination information and offering practice of transferable skills such as disclosure in consultations. Implications for rehabilitation Young people with juvenile idiopathic arthritis encounter challenges with regard to employment; many lack the knowledge and skills to negotiate appropriate support from employers. Rehabilitation professionals could play a more substantial role in equipping them with relevant knowledge and skills by signposting to antidiscrimination information and nurturing transferable skills, such as disclosure, in consultations. Potentially helpful interventions, such as group activities or assessment by a psychologist, have benefited some but need more evaluative scrutiny with respect to employment outcomes.


Assuntos
Artrite Juvenil/epidemiologia , Emprego , Adulto , Ansiedade , Revelação , Gerenciamento Clínico , Feminino , Grupos Focais , Acesso aos Serviços de Saúde , Humanos , Entrevistas como Assunto , Masculino , Preconceito , Apoio Social , Reino Unido/epidemiologia , Adulto Jovem
20.
Clin Med (Lond) ; 17(5): 424-428, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28974591

RESUMO

Sleep has an important role in maintaining health and wellbeing; this relationship is becoming increasingly recognised for adolescents and young adults. Many physicians will encounter young people who present with complaints or conditions that have some relation to poor sleep. This review article looks at why sleep matters within this population group, how it can impact on longer term health consequences and discusses some tools to help enable the clinician to evaluate and address sleep within clinical practice.


Assuntos
Adolescente/fisiologia , Transtornos do Sono-Vigília , Sono/fisiologia , Adulto , Doença Crônica , Fadiga , Humanos , Adulto Jovem
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