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

K. L. Shaw, T. R. Southwood and J. E. McDonagh on behalf of the British Paediatric Rheumatology Group

Institute of Child Health, Division of Reproductive and Child Health, University of Birmingham, Birmingham B15 2TT, UK.

Correspondence to: J. E. McDonagh, Institute of Child Health, Diana, Princess of Wales Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK. E-mail: j.e.mcdonagh{at}bham.ac.uk


    Abstract
 Top
 Abstract
 Introduction
 Methods and participants
 Results
 Discussion
 References
 
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.

KEY WORDS: Juvenile idiopathic arthritis, Adolescence, Transition, Survey, Multidisciplinary.


    Introduction
 Top
 Abstract
 Introduction
 Methods and participants
 Results
 Discussion
 References
 
In April 2003, the need to develop transitional care services for young people was highlighted in the first set of standards of the forthcoming National Service Framework for children in the UK [1]. However, despite increasing calls for the development of transitional care in rheumatology [25] changes have been slow to occur. This is exemplified in a recent survey that demonstrated that only 18% of rheumatology units treating children with rheumatic disease in the UK had dedicated adolescent clinics [6]. As yet, most adolescents with juvenile idiopathic arthritis (JIA) continue to be cared for within frameworks designed specifically for children or adults. Unfortunately, this either/or approach means that relationships between health professionals, parents and adolescents may not parallel developmental progressions and fail to uncover important adolescent issues [7]. JIA can certainly disrupt the normative tasks of adolescence, including the consolidation of identity, achievement of independence from parents, establishment of adult relationships outside the family and finding a vocation. Adolescents with JIA are also at risk of long-term disadvantage [811].

These findings provide compelling support for the development of transitional services within rheumatology, where ‘transition’ is typically defined as ‘a multi-faceted, active process that attends to the medical, psychosocial and educational/vocational needs of adolescents as they move from child- to adult-centred care’ [12]. Preliminary evidence for transitional care is limited, but does suggest positive outcomes [13], as in other chronic illnesses [1416]. However, whilst the rationale and aims of transitional care are evident, the ideal transitional service has yet to be identified [6] or implemented. Accordingly, the aims of the present study were to identify the perceived transitional needs of adolescents with JIA from the perspectives of professionals involved in their care and to determine how these needs can be addressed within a structured programme of transitional care.


    Methods and participants
 Top
 Abstract
 Introduction
 Methods and participants
 Results
 Discussion
 References
 
Measures
A postal questionnaire was developed to identify the perceived transitional needs of adolescents with JIA from the perspectives of professionals involved in their care. Development followed standardized procedures [17] and was guided by an advisory board that included representatives of the target recipients.

The questionnaire had one format and each professional group was required to complete relevant sections (Table 1). Sections 1–7 employed closed questions with a five-point response format, anchored by ‘not important/useful’ and ‘very important/useful’. Sections 8–11 used open questions to ensure that respondents’ answers were not constrained by the researchers’ assumptions about which features of transitional care may be important.


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TABLE 1. Questionnaire sections

 
Procedure
Designed for self-completion, the questionnaire (n = 1670) was distributed to the organizations listed in Table 2. To enhance validity, all key terms were defined explicitly. Reminders were sent to non-respondents where possible.


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TABLE 2. Organizations included in the study

 
Analyses
Statistical analyses were performed using SPSS version 10.0 (SPSS, Chicago, IL, USA). Responses to the closed questions were summarized as proportions. The association between the perceived importance of information and whether the recipient was an adolescent or parent was investigated using the McNemar test. Qualitative data were analysed independently by two researchers using content analysis. Where relevant, actual quotations from the respondents were used to support the findings.


    Results
 Top
 Abstract
 Introduction
 Methods and participants
 Results
 Discussion
 References
 
Response rates
Five hundred and two surveys were returned. Of these, 478 were completed (an additional 24 were returned blank because addressees were no longer at the marked address or no longer in post). Where given, explanations for non-return included insufficient knowledge of JIA (n = 17), insufficient time to complete questionnaire (n = 2), and questionnaire not considered a business priority (n = 1). The overall response rate was 29%. However, this varied considerably between the professional organizations, ranging between 9 and 90% (Table 2).

Section 1: respondent demographics and practice data
As illustrated by Fig. 1, the sample reflected a multidisciplinary composition. The data also reflected geographical diversity, including contributions from urban and rural environments within England, Wales, Scotland and Northern Ireland. Respondents were employed within a wide range of settings, including a range of rheumatology centres (secondary, tertiary, university hospitals), voluntary organizations and educational and vocational agencies as well as the private sectors. Most respondents (91%) had direct professional involvement with adolescents with chronic illness. Sixteen per cent worked with them every day, 26% worked with them several times a week, 20% worked with them several times a month and 29% worked with them several times a year. Nine per cent reported no working relationship with adolescents with chronic illness (primarily employers, teachers and adult rheumatologists).



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FIG. 1. Response rate as a function of discipline (n = 478).

 
Section 2: multidisciplinary involvement in planning transitional care
As shown in Table 3, respondents perceived the planning of transitional care as a multidisciplinary activity that should also include patients and parents. Respondents suggested a number of other professionals who may be important in planning transitional care, most notably career advisers, who were nominated by 8% of the sample.


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TABLE 3. Persons involved in planning transitional care (n = 478)

 
Section 3: informational needs of adolescents with JIA and their parents
The informational/advice needs of adolescents and their parents are displayed in Table 4, where they are related to aspects of their physical health, psychosocial well-being, and academic/vocational potential. Most topics were frequently rated as ‘very important’ for both adolescents and parents. However, where comparisons could be made, analyses indicated that respondents generally rated information as more important for adolescents than for parents. There were two exceptions: information concerning ‘self-advocacy for the adolescent’ and ‘managing the adolescents’ emotions’. These were rated as more important for parents than for adolescents.


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TABLE 4. Topics of information/advice rated as ‘very important’ in planning the transitional care of adolescents and their parents (n = 478)

 
Section 4: resources for patients
The perceived importance of different resource modalities is shown in Table 5. Respondents suggested several other resources, but not so consistently to warrant further discussion.


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TABLE 5. Resources rated as ‘very important’ in delivering transitional care to adolescents with JIA (n = 478)

 
Section 5: views of health professionals about the importance of making individualized transition plans for adolescents with JIA
Over three-quarters of health-care professionals (77%) considered individualized transition plans to be ‘very important’ for adolescents with JIA. Of the remainder, 19% rated it as ‘moderately important’ and only 3% as ‘minimally important’. No respondent rated it as ‘not important’ (1% did not know).

Section 6: views of health professionals about the importance of addressing the transitional needs of parents of adolescents with JIA
The majority of health professionals felt that it was also important to address the transitional needs of parents, 75% rating this as ‘very important’, 23% rating it as ‘moderately important’, 1% rating it as ‘minimally important’ and only 1% rating it as ‘not important’ (1% did not know).

Section 7: views of health professionals about the usefulness of transitional plans in current practice
Over half of the health professionals (53%) reported that a programme of transitional care would be ‘very useful’ in their current practice. Of the remainder, 28% rated a programme of transitional care as ‘moderately useful’, 10% as ‘minimally useful’ and 5% as ‘not useful’ (4% did not know).

Section 8: views of health professionals about the transitional issues encountered in their current practice
In an open question with qualitative response format, 161 (65%) health professionals reported that they had encountered transitional issues in their current practice. These are presented in Table 6.


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TABLE 6. Transitional issues encountered in the current practice of health professionals (n = 171)*

 
Transfer was a key issue, reported by 46% of respondents, and a recurrent theme was the emotional impact for patients and their parents:

‘I am currently attempting to transfer a 17 year old to adult services, I am very aware of the trauma of transferring from a cosy paediatric clinic to the busy elderly rheumatology out patient department.’

Some health professionals noted that some young people failed to attend the adult clinic and became ‘lost in the system’. Several respondents attributed this to inadequate preparation for transfer, which was also cited as a main factor in patients’ willingness to move.

Several respondents reported that transfer was less difficult for those patients who remained with the same specialist and within the same environment. However, this was not problem-free. Clinic time was often reduced and there were significant losses of multidisciplinary support in the adult clinic.

One concern was the lack of policy to guide transfer, especially in relation to timing and criteria for decision-making. Difficulties in coordination were also evident. Recurrent themes included limited continuity of multidisciplinary support, poor liaison between paediatric and adult providers and inadequate transfer of patient records. For example:

‘There is a tremendous difference in the care that they receive in the ‘adult world’ becoming a ‘small fish in a big sea’ as opposed to a ‘big fish in a small pond’.

‘Poor communication ... Confusion with different approaches to patient care in terms of discussing management with parents or child’.

After transfer, the next most recurrent themes were (i) patients’ self-advocacy, decision-making and consent, and (ii) parents. Many respondents acknowledged the reciprocal links between adolescents and their parents and frequently mentioned the need to help empower young people by facilitating interdependence. Parental reluctance to withdraw from young people's care was a major issue and respondents noted that helping parents to ‘let go’ was central to adolescents’ future self-management. Several people also highlighted the difficulties encountered as a result of discordance between adolescents and their parents:

‘Balance of parents/guardians wishes re: treatment, consent, medication, promoting physical/emotional maturity/independence, with adolescents. Often end up feeling like "ACAS [e.g. mediator] in a trade dispute".’ [health professional]

Of those who did not identify transitional issues (n = 92, 35%), 46 said that this was not applicable to them, one said that they did not know and 10 said that they had not experienced any transitional issues. Thirty-five respondents left the section blank. Almost two-thirds (63%) of the ‘not applicable’ responses were given by rheumatology professionals. Moreover, the number of rheumatology professionals who responded ‘not applicable’ (n = 29) equated to 15% of the total number of rheumatology professionals who participated in the study (n = 196).

Section 9: views of health professionals about the geographical and local issues encountered in providing transitional care
Local issues specific to the working practice of the respondent were reported by 121 (46%) health-care professionals. The specific issues reported are presented in Table 7.


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TABLE 7. Geographical issues encountered in the current practice of health professionals (n = 121)*

 
Of those who did not identify geographical issues (n = 142), 11% said that this was not applicable to them, 8% said they did not know, 31% said they had not identified any geographical issues and 50% left the section blank.

Section 10: views of health professionals about the factors that place adolescents at risk of transitional difficulties
Risk factors were identified by 176 (67%) health professionals and are displayed in Table 8. The main risk factors identified were related to family/parent dynamics (57% of respondents identifying risk factors, 38% of the total health professional sample), including family composition, overprotectiveness, reliance on financial benefits etc. Of those who did not identify risk factors (n = 87), 21% said that this was not applicable to them, 9% said they did not know and 70% left the section blank.


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TABLE 8. Risk factors considered to place adolescents at risk of transitional difficulties (n = 176)

 
Section 11: views of health professionals about the barriers faced (or anticipated) in providing transitional care
Barriers to providing transitional care were reported by 182 (69%) of the health professionals and are presented in Table 9. The main barrier identified was that of inadequate resources (68% of respondents who identified barriers). Of those who did not identify barriers (n = 81), 22% said that this was not applicable to them, 2% said they did not know, 5% said they did not face/anticipate any barriers and 70% left the section blank.


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TABLE 9. Barriers encountered (anticipated) in the provision of transitional care (n = 182)*

 

    Discussion
 Top
 Abstract
 Introduction
 Methods and participants
 Results
 Discussion
 References
 
This study forms part of the first controlled national study of transitional care in a childhood-onset chronic illness in the UK [18] and, as such, contributes to a previously scarce evidence base. The value of this research also extends beyond the rheumatology field, in that many issues identified as important are generic to many chronic illnesses.

Transitional plans
The majority of professionals in this study considered individualized transition plans to be very important for adolescents with JIA and their parents. This is reassuring in that a US report says that lack of planning was second only to finance as a main reason for failure of successful transition into the adult health-care system [19]. The current results were also concordant with the recent consensus statement from the American Academy of Pediatrics [2], which considers the preparation of a written health-care transition plan by age 14 as one of the six most critical steps in ensuring a successful transition. This, they propose, should be undertaken in conjunction with the young person and family and should include regular reviews and updates [2]. Unfortunately, although transitional planning is deemed important it does not appear to be reflected in current practice. This is exemplified by an audit of the rheumatology centres participating in the second phase of this study, which has revealed limited documentation of transitional issues [20]. The perceived importance of transitional planning is also at odds with the fact that only 53 and 28% of the professionals surveyed reported that in their current practice such plans would be very or moderately useful, respectively. Such discrepancies may be explained by lack of formal experience in transitional care. Over half (57%) of the health professional respondents certainly identified themselves as having information and/or training needs (data not shown). Recognition of training needs in this area has also been highlighted in the US literature [2].

Multidisciplinary involvement
In planning transitional care, respondents indicated a preference for multidisciplinary involvement. It is important to state, however, that the level of importance assigned to many services may be artificially low, in that respondents may not have appreciated the importance of those services that were not available within their area of practice. The results certainly echo the premise that health professionals should not work in isolation from other professionals who have an effect on young people's special health-care needs (SHCN) [2]. Within the multidisciplinary team, respondents strongly agreed that young people and parents should assume a central role (Table 3). As such, the results also concur with the Children's Act (1989) [21] and Article 12 of the UN Convention on the Rights of the Child (1989) [22], which both state that children should be consulted about issues and events that directly affect or shape their lives.

Less reassuring is that only 71% respondents rated involvement of adult rheumatologists in transitional care planning as very important (Table 3). Yet, by definition, transition involves both paediatric and adult providers and an interested capable adult service is one of six key elements identified for the development of an effective transitional care programme [1, 23]. As such, these results potentially indicate a lack of awareness about the concept of transition. Of additional note is that only 43% of respondents rated the involvement of the general practitioner (GP) as very important. Yet primary care involvement has been acknowledged to be a key element of effective transitional care [1, 23] and the GP may be the only health professional that remains constant during the transfer from paediatric to adult care.

Informational needs
Transitional needs were perceived to be wide-reaching and to necessitate a programme of care that addresses the structural, economic, social and cultural aspects of adolescents’ health (Table 4). As such, the results paralleled users’ views of patient and parent needs [18].

In meeting these needs, information/advice was seen to be very important for both adolescents and parents, and where comparisons could be made the needs of adolescents were frequently perceived to be greater than those of parents. This view, however, is not reflected in practice, where there is a paucity of age-appropriate information for adolescents with JIA [6].

Information about treatment and disease-specific issues were most frequently rated as very important areas of need for young people and their parents (Table 4). Similar findings have been shown in a needs assessment of Canadian children with rheumatic diseases and their parents [24]. Other important informational needs included independent living and vocation/employment issues. The latter is of particular significance when one acknowledges that the likelihood that a young adult with JIA is unemployed is greater than the national average, and that this is not necessarily related to the level of disability [9, 10]. It is reassuring, therefore, that in addition to those professionals listed in Table 3, career advisers were nominated most frequently as other professionals relevant to transitional care. Unfortunately, a UK audit of adolescent rheumatology provision has shown that access to career advisers by adolescent clinics is less than optimal [6]. It is possible, however, that the advent of the Connexions programme in the UK will improve this situation significantly at the national level [see www.connexions.gov.uk]. It has been suggested that lack of knowledge about such career and vocational education services can impede the transition process for young people with SHCN [25]. The findings of this study support recent calls for improved training for paediatricians in vocational issues for young people with chronic illnesses [26] and echo similar appeals in adult rheumatology [27].

The results also indicate a need to provide information about sexual health. This is relevant to both generic and disease-specific health (e.g. delayed puberty and teratogenic drug therapies). A significant proportion of individuals are reported to be sexually active before transfer to adult rheumatology [11] and problems regarding sexual health have been reported in previous studies [28, 29]. Information about substance misuse was another area of identified need (Table 4), and is again relevant to both generic and disease-specific health (e.g. interaction of alcohol and methotrexate) [30].

Informational resources
Provision of information was seen to require multiple methods (Table 5). However, methods most frequently rated as very important were skills-based and included social skills training and self-medication teaching programmes, which are not provided formally in many rheumatology clinics currently.

Care must be taken to involve young people in the planning and development of such informational resources. In a recent German study, nearly half of the adolescents judged their available informational services (lectures, structured patient education, support group and self-help group) as not very attractive [31]. Further work to explore which resources the young people themselves value as important is ongoing.

Transitional issues in current clinical practice
Two-thirds of health professionals reported transitional issues in their current practice, more being reported by non-medical personnel. This finding could reflect the fact that adolescent health does not sit comfortably with the current medical model and hence is not acknowledged as easily by medical personnel. Moreover, almost two-thirds (63%) of the ‘not applicable’ responses were given by rheumatology professionals (data not shown). This is of particular concern because most of these individuals will have to deal with adolescents/young adults with JIA at some point in their careers, and the figure potentially demonstrates a lack of awareness regarding the developmental tasks involved in the transition from adolescence into young adulthood. However, this said, the range of issues reported by health professionals did reflect the broad remit of transitional care (Table 6).

The main issue identified (by 46% of respondents) was transfer, a key event during the transition process (Table 6). Another main area was that of self-advocacy, decision-making and consent, reported by 32% of respondents. Adolescents’ abilities to manage their arthritis depend not only upon their own personal skills, but also upon the support services and social networks that support these behaviours. Whilst the achievement of this is undoubtedly a difficult task, the results of this study offer evidence to support further developments in this area.

The study also highlighted the significance of parental factors in transitional care for adolescents with JIA, which were reported by 30% of those respondents who identified transitional issues (Table 6). With respect to parental informational needs, issues concerned with the transfer of responsibility to adolescents were most frequently rated as very important, more so than disease-specific issues. Family dynamics were also reported to influence the success of transition (Table 8). In a recent study of primary care providers in the USA, family resistance and adolescent resistance were reported to be significant barriers to health transitions for young people with SHCN, but were also considered surmountable [32]. Family support, including negotiation of boundaries, has been reported to be important for successful transition [12]. Risk factors for experiencing transitional difficulties proposed by respondents (Table 8) parallel previous findings that suggest that young people's adaptation to JIA is positively related to increased family cohesion and adaptability [33], fewer chronic life events and family stressors [33, 34], better parental mood and emotional resources [3537] and fewer parental health-risk behaviours [36]. Meeting parental needs during transition therefore requires recognition in the future development of adolescent rheumatology services, especially as they will have implications for staffing levels, clinic space, the number of patients seen in an adolescent clinic, etc.

Risk factors for transitional difficulties
It is not known which patients are most in need of a transitional programme. However, the risk factors most frequently reported by respondents included family/parent dynamics, adolescent intrapersonal characteristics and disease severity (Table 8). With reference to the latter, however, there is contradictory evidence that young people with less severe disease may be more at risk of morbidity [37]. This said, 70% of respondents did not identify any risk factors for suboptimal transition for young people with JIA. This finding can be interpreted as either true lack of perceived risk factors or lack of awareness. Interestingly, two population-based studies of young people with chronic conditions have reported uneventful transitions [38, 39]. Conversely, Florentino et al. [40] reported that the quality of medical care for young people with disabilities in the UK declines after transfer to adult services. Further studies of both risk factors and markers of resilience are needed to explore this area further.

Barriers to provision of transitional care
Over two-thirds (69%) of respondents perceived barriers to transitional care for adolescents with JIA in current UK practice. The most frequently reported barrier concerned inadequate resources. The recent report from Bent et al. [41], showing that a young adult team approach for young people with physical disabilities costs no more to implement than an ad hoc approach and is more likely to enhance the participation in society of young people with physical disabilities, will be useful supportive economic evidence for future service development. Problems of institutional support (e.g. hospital cut-off age and the inability to find an adult provider) have been reported elsewhere to be true rate-limiting steps in developing an organized transition plan for young people with SHCN [32]. Conversely, professional and environmental support was one of four key elements for successful transition proposed by Blum et al. [12]. Barriers to providing transitional care also included poor intra- and inter-agency coordination, which is already well recognized in the literature [23, 42]. Given the financial and time constraints that clinicians now face, research is needed to pilot and evaluate effective strategies for delivering transitional care with limited resources. This is currently being undertaken as the second phase of this study.

Limitations of the study
A number of limitations of this study must be borne in mind. First, the response rate was low (29%). This was despite using several strategies that have been shown to enhance response rates to questionnaires [43] (e.g. using stamped addressed envelopes and providing non-respondents with a second copy of the questionnaire). Unfortunately, with no opportunity to compare the characteristics of respondents with those of non-respondents, it was impossible to ascertain whether the sample exhibited characteristics that may have biased the results. The most frequently reported reason for not responding was insufficient knowledge of JIA. The low response may also reflect the fact that transitional care is a fairly new concept in the UK. With little practical experience of transitional care, it may be that many people felt unable to comment. The response rate is also likely to have been affected by the ‘cold-calling’ method of delivery and the length of the questionnaire. It can be postulated, therefore, that the sample includes those people most able and/or motivated to identify the transitional needs of adolescents with JIA.

Another potential caveat concerns the format of the qualitative questions. These were posed as open questions (e.g. What barriers do you face/anticipate facing in providing transitional care?) and relied upon written responses that were analysed using content analysis. Unfortunately, it was impossible to determine the reasons for non-responses. For example, failure to answer the above question could indicate that (i) no barriers were faced/anticipated, (ii) the respondent felt unqualified to answer or (iii) the respondent unintentionally missed the question. Thus, the percentage of professionals who, in this case, report barriers may be artificially low, as one is not able to exclude all those people for whom the question is not applicable (e.g. because of a lack of experience). However, most respondents (91%) reported having direct working experience with adolescents who have a chronic physical condition, such as JIA.

Finally, it is important to remember that the data rely upon the respondents’ written reports and may therefore be considered anecdotal. However, whilst peoples’ perceptions may not necessarily reflect actual situations, it is individuals’ interpretations of their world that guide their actions. Thus, using the example above, addressing perceived barriers may be as important as addressing actual barriers. Several authors have emphasized the important significance of attitudinal barriers to transitional care [29, 32].

Summary
This study forms part of the first controlled study of transitional care in JIA or indeed, any chronic illness, and, by including a range of disciplines, acknowledges the inter-agency involvement that is integral to transitional care for adolescents with chronic illnesses like JIA. The results are a major contribution to the evidence to support the standards of care proposed for the National Service Framework for Children in the UK, which addresses the needs of young people until the age of 19 yr and is therefore of relevance to providers of care for both paediatric and adult patients [1]. The study highlights the importance of transitional care in the context of JIA and there is consensus across disciplines in the areas of unmet need identified in adolescent rheumatology health-care in the UK. Within the context of JIA, these results have provided part of the evidence base for a structured programme of transitional care. This is currently being implemented in a controlled fashion in 10 rheumatology centres across the UK and coordinated by research personnel in the role of key workers. Evaluation of the short-term outcomes is due for completion in early 2004.


    Acknowledgments
 
This work was funded by a Special Purpose Grant (SO635) from the Arthritis Research Campaign (www.arc.org.uk) and undertaken on behalf of the British Paediatric Rheumatology Group, the Children's Chronic Arthritis Association, the Lady Hoare Trust for physically disabled children, and Arthritis Care. KLS co-ordinated the project, co-designed and distributed the questionnaires, performed the data analyses and co-wrote the paper. JEMcD is an Arthritis Research Campaign Clinical Senior Lecturer in Paediatric Rheumatology. She co-conceived the study, wrote the grant application, obtained funding, directed the project, co-designed the questionnaire and co-wrote the paper. TRS co-conceived the study, supervised the grant application and reviewed the paper prior to submission. Dr L. Wedderburn helped review the provisional draft. Sincere thanks are extended to all the organizations that participated in the study and members of the advisory board who provided advice regarding the questionnaire. Thanks are also offered to Mrs B. Thomas, who helped input the data.

The authors have declared no conflicts of interest.


    References
 Top
 Abstract
 Introduction
 Methods and participants
 Results
 Discussion
 References
 

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Submitted 20 June 2003; Accepted 22 July 2003