Impact Of Juvenile Idiopathic Arthritis Research Articles

Uncovering the hidden socioeconomic impact of juvenile idiopathic arthritis and paving the way for other rare childhood diseases: an international, cross-disciplinary, patient-centered approach (PAVE Consortium).

Juvenile idiopathic arthritis (JIA) refers to a heterogeneous group of rheumatic conditions in children. Novel drugs have greatly improved disease outcomes; however, outcomes are impacted by limited awareness of the importance of early diagnosis and adequate treatment, and by differences in access across health systems. As a result, patients with JIA continue to be at risk for short- and long-term morbidity, as well as impacts on virtually all aspects of life of the child and family. Literature on the socioeconomic burden of JIA is largely focused on healthcare costs, and the impact of JIA on patients, families, and communities is not well understood. High quality evidence on the impact of JIA is needed to ensure that patients are receiving necessary support, timely diagnostics, and adequate treatment, and to inform decision making and resource allocation. This commentary introduces the European Joint Programme on Rare Diseases: Producing an Arthritis Value Framework with Economic Evidence: Paving the Way for Rare Childhood Diseases (PAVE) project, which will co-develop a patient-informed value framework to measure the impact of JIA on individuals and on society. With a patient-centered approach, fundamental to PAVE is the involvement of three patient advocacy organizations from Canada, Israel, and Europe, as active research partners co-designing all project phases and ensuring robust patient and family engagement. The framework will build on the findings of projects from six countries: Canada, Germany, Switzerland, Spain, Israel, and Belgium, exploring costs, outcomes (health, well-being), and unmet needs (uveitis, mental health, equity). This unique international collaboration will combine evidence on costs (from family to societal), outcomes (clinical, patient and family outcomes), and unmet needs, to co-design and build a framework with patients and families to capture the full impact of JIA. The framework will support the development of high-quality evidence, encompassing economic and clinical considerations, unmet needs, and patient perspectives, to inform equitable resource allocation, health system planning, and quality of care better aligned with the needs of children with JIA, their families, and communities. Knowledge gained from this novel approach may pave the way forward to be applied more broadly to other rare childhood diseases.

P157 Poverty and paediatric rheumatology

Abstract Background/Aims 30% of UK children live in poverty, which is associated with a multitude of long-lasting adverse outcomes. Healthcare workers have a vital role in addressing the psychosocial wellbeing of children, which extends to identifying children living in poverty and how this impacts upon their health. Navigating this is challenging. This project reviews the literature to present how poverty impacts child health, with particular reference to patients with juvenile idiopathic arthritis (JIA). Practical suggestions are outlined to signpost and support children and families in need. Methods Information was sought from resources such as the Royal College of Paediatricians, British society of Rheumatology and Child Poverty Action Group. Further literature was sought via sequential PubMed searches with relevant terms. This project provides a report, rather than systematic review, of the literature. Results Poverty disproportionately affects children with JIA from diagnosis to adulthood. A US study demonstrated that children living in deprived areas were significantly more likely to experience delays in presenting to a paediatric rheumatologist. In the UK poorer children are more likely to present via the emergency department, reflecting potential areas to improve the patient journey. Low socioeconomic status is a strong predictor of poor medication adherence and appliance poverty may prevent appropriate drug storage. Families that are experiencing in-work poverty may also be ‘time poor’, which could result in suboptimal appointment attendance and engagement. JIA places an additional financial stressor on families in poverty due to the cost of travel, parking, childcare and loss of income. Additionally, JIA may impact on the earning potential of young people themselves. JIA impacts school attendance and achievement and is associated with reduced employment. The impact of JIA on education is likely to be amplified for children living in poverty, which has a strong link with absenteeism. Children with JIA from low socioeconomic groups experience more severe disease outcomes and are more likely to have a poorer health reported quality life. Lower socioeconomic status in childhood is also associated with higher prevalence of chronic pain in both childhood and adulthood. Conclusion It is vital that we think beyond the investigations we order and drugs we prescribe, and consider social investigation and prescribing as part of our practice. An ‘Ask, Action, Advocate’ strategy is recommended. Evidence suggests that families welcome healthcare staff asking about financial difficulty during consultations. Professionals can take action by signposting families to the wealth of resources available to help meet basic needs, increase income, and provide social and emotional support. Advocating for the most vulnerable families by considering where your service could be improved for those in financial hardship is crucial. Professionals are encouraged to learn more, and share knowledge. Disclosure L. Crosby: None.

P023 Impact of Juvenile Idiopathic Arthritis on schooling and family life

Abstract Background Juvenile Idiopathic Arthritis (JIA) and its related symptoms have been associated with interference in the daily life of children and adolescents with JIA including their friendships, their school attendance and sometimes their family life. The aim of the study was to describe the impact of JIA on schooling, social and family life from the point of view of children. Methods We interviewed 23 children and adolescents, diagnosed with JIA according to the classification criteria of the International League of Associations for Rheumatology (ILAR). Results The mean age of our group was 16 years, with a sex ratio of 3. Eight percent of the children were in elementary school, 21.7% in high school and 8.7% in university. Eighty-seven per cent reported school absenteeism due to JIA (pain, being hospitalized,) with a mean of 8 missed school days. Forty-three per cent failed in their schooling at some point. Thirty percent thought it was related to the consequences of their disease. Only 47.8% found the school staff to be helpful and supportive. Seventy eight percent felt understood and supported by their family in dealing with the different aspects of JIA. Twenty-six per cent felt more spoiled than their other siblings, creating tension sometimes. Fifty two percent felt different and not accepted by their peers because of the JIA. Conclusions Children with JIA are already suffering from the physical aspect of their disease. Initiating an open discussion with them might reduce the burden these children are carrying often in silence, and improve long-term outcomes in terms of schooling, social and, family life.

P028 Impact of Juvenile Idiopathic Arthritis on schooling

Abstract Background Juvenile idiopathic arthritis (JIA) is the most common chronic rheumatic disease in children and is one of the major causes of morbidity and physical disability. Due to frequent absences, children with chronic health impairments are also often confronted with educational difficulties. The aims of this study were to assess the impact of JIA on children’s schooling and to determine the factors that influence their school level. Methods This is a cross-sectional study including patients with JIA (ILAR criteria). A detailed questionnaire was completed for each participant by interviewing them or their parents as well as by information obtained from their medical records. Collected data included age, sex, subtype of JIA, disease duration, level of disability according to the Childhood Heath Assessment Questionnaire (CHAQ), visual analogue scale for patient’s overall assessment of disease activity (VASOA), duration of morning stiffness, tender joint counts (TJCs), swollen joint counts (SJCs), erythrocyte sedimentation rate (ESR), C-Reactive Protein (CRP), Disease Activity Score (DAS28) for polyarticular and oligoarticular JIA, Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) for Enthesitis-related arthritis. Medications used for JIA treatment were also documented. Data on the school performance of patients and their siblings were obtained using telephone interviews (educational level, absenteeism, school delay by repetition, drop-out). Results A total of 43 patients with JIA were included, 25 female and 18 male, with a mean age of 26 years [12–51] and a mean disease duration of 237 months (5–496). The average age of the onset of the disease was 7.4 years [1.5–16]. The most common subtype was rheumatoid factor-positive polyarthritis (n = 18) followed by systematic (n = 8), oligoarticular (n = 8), rheumatoid factor-negative polyarthritis (n = 5) and Enthesitis-related arthritis (n = 4). The mean DAS28 was 3.02 [0.76 – 5.55] and the median CHAQ was 0.66 [0–3]. Twenty-nine of the children were receiving corticosteroid. Disease-modifying anti-rheumatic drugs were used by 38 of the 43 patients: methotrexate (n = 27), sulfasalazine (n = 8), leflunomide (n = 7), biotherapies (n = 16). Twenty patients had complications: Hip arthritis (n = 18), growth stunting (n = 14), uveitis (n = 5). Joint replacement was required in 11 cases. Four patients were illiterate, 14 had dropped out of school, 24 reported repeated absences due to illness. A year of schooling was repeated by 50.85% of patients. Eleven out of 32 patients over the age of 20 had an university level. Almost 80% of patients were exempted of physical education. There were no significant associations between the school-related problems, the socio-demographic characteristics and the various parameters of clinical and biological activity studied. Conclusion Our study suggested that JIA negatively affects schooling of children. More studies, with a larger sample of children, are needed to identify the variables associated with school failure in order to ensure the proper management of these patients and to increase their academic performance.

Effect of Juvenile Idiopathic Arthritis on the Temporomandibular Joint and Occlusion in Children and Young Adolescents: A Descriptive Cross-sectional Study

Introduction: Juvenile Idiopathic Arthritis (JIA) is a chronic rheumatic disease, with a prevalence of 1 in 1000 children under the age of 16 years. The clinical symptoms include inflammation of joints, swelling of synovial membrane resulting in growth disturbances and loss of bone density. Aim: To assess the effect of JIA on the development of Temporomandibular Joint (TMJ) and occlusion in children and young adolescents in the age group of 8-16 years and to evaluate the effect of TMJ arthritis on the growth of maxilla and mandible. Materials and Methods: This is a descriptive cross-sectional study with a study and control group. A total of 44 children with JIA attending the Department of Rheumatology, Nizam Institute of Medical Sciences (NIMS), within the age group of 8-16 years were screened and enrolled in study from May-July 2014. A gender and sex-matched healthy control group were enrolled from Paediatric Dentistry outpatient specialty. For the measurement and comparison of arch perimeters of mandible and maxilla, the JIA and control group were divided into sub-groups 1 (8-10 y), 2 (11-13 y), and 3 (14-16 y). All the parameters were recorded and subjected to statistical analysis. An Independent sample t-test was used to find a significant difference for maxillary and mandibular arch perimeters among both the groups. Chi-square test was used to know the difference for TMJ parameters, occlusion and occlusal abnormalities. The level of significance was set at p<0.05 for all tests. Results: Children in the JIA group had reported TMJ pain on movement (40.9%), clicking sounds (36.4%), and dislocation (22.7%). Angle’s class II malocclusion was seen in 36.4% compared to the control group (4.5%). The mean arch perimeter of the mandible was significantly less among JIA children in subgroups 2 (73.00±3.03 mm), and 3 (71.77±6.27 mm) when compared to healthy controls. Other occlusal abnormalities such as increased overjet (34.1%), decreased overbite (31.8%), and crowding (54.5%) were reported in significant percentages compared to healthy controls. Conclusion: The mean arch perimeter of the mandible in the JIA group is less when compared to children of the same age in the control group. There is increased predilection of developing Angle’s class II Malocclusion in the JIA group. From a paediatric dentist perspective, it’s important to understand the overall impact of JIA on stomatognathic system, and an early intervention is recommended.

299 The impact of juvenile idiopathic arthritis on adolescents and young adults: a qualitative study

299 The impact of juvenile idiopathic arthritis on adolescents and young adults: a qualitative study

Influence of juvenile idiopathic arthritis on the quality of life of young adults in the transition period to adult rheumatologic care

Background Young adults with juvenile idiopathic arthritis (JIA) often have an active disease with significant functional impairment in adulthood that can affect their physical and mental functions Aim To determine the impact of JIA on quality of life (QoL) in young adults with JIA during the transition healthcare Materials and methods The cross-sectional study of 89 young adults aged 16 to 22 years with a history of JIA regardless of the presence or absence of active inflammation at the time of the survey was performed in the Oleksandrivsky Central Clinical Hospital in Kyiv, Ukraine in the period between April 2015 and February 2017. 25 age- and sex-matched controls (without rheumatic disease) were included. There was performed an evaluation of the age at disease onset, duration, JIA activity, received therapy and quality of life Results Out of 89, 37 (41,6%) patients were considered to be in remission. Juvenile idiopathic arthritis had a large impact on the physical scales of quality of life. Patients with JIA had worse (p <0.001) physical health in comparison with the control group. The pain was the most important factor affecting the quality of life in cases of juvenile idiopathic arthritis. The indices responsible for the physical (p<0.001), role (borderline significance, p=0.04) functioning, and intensity of pain (p<0.001) were decreased, compared with the control group. However, the indicators responsible for psychological function in patients with JIA did not differ from the control group. The correlation analysis revealed significant negative association between disability severity (HAQ) and physical function (r=-0,56, p<0.001), role function (r=-0,33, p<0.001), pain intensity (r=-0,60, p<0.001), general health (r=-0,40, p=0.01), vital activity (r=-0,46, p<0.001), social function (r=-0,48, p<0.001), mental health (r=-0,42, p<0.001) Conclusion In our transitional cohort of patients at the era of biological therapies, juvenile idiopathic arthritis had a larger effect on the physical than mental SF-36 subscale. The pain was the main factor influencing the quality of life

Growth patterns in early juvenile idiopathic arthritis: Results from the Childhood Arthritis Prospective Study (CAPS).

ObjectivesTo investigate early vertical growth patterns and factors associated with poor growth in a modern inception cohort of UK children with juvenile idiopathic arthritis (JIA) using data from the Childhood Arthritis Prospective Study (CAPS).MethodsA study period of 3 years was chosen. Children included in this analysis had a physician diagnosis of JIA and had height measurements available at both baseline and at 3-years of follow-up. Height is presented as z-scores calculated using World Health Organisation growth standards for age and gender. Growth over the 3-year period was assessed using change in z-score and height velocity. Univariable and multivariable linear regressions were used to identify factors associated with height z-score at baseline and change of height z-score at 3 years.Results568 patients were included; 65% female, median baseline age 7.4 years [interquartile range (IQR) 3.6, 11.2], median symptom duration at presentation 5.5 months [IQR 3.1, 11.6]. Height z-score decreased significantly from baseline to 3 years (p ≤ 0.0001); baseline median height z-score was −0.02 (IQR −0.71, 0.61), decreasing to −0.47 (IQR −1.12, 0.24) at 3 years. Growth restriction, defined as change of height z-score ≤−0.5, was observed in 39% of patients. At 3 years, higher baseline height z-score was the strongest predictor for a negative change in height z-score [−0.3 per unit of baseline height z-score (95% CI: −0.36, −0.24), p < 0.0001].ConclusionsAlthough overall height at 3 years after initial presentation to rheumatology is within the population norm, as a cohort, children with JIA experience a reduction of growth in height over the first 3 years of disease. Late presentation to paediatric rheumatology services is associated with lower height at presentation. However, patients with the lowest height z scores at presentation were also the most likely to see an improvement at 3 years. The impact of JIA on growth patterns is important to children and families and this study provides useful new data to support informed clinical care.

Impact of Juvenile Idiopathic Arthritis on School Attendance and Performance

Juvenile idiopathic arthritis (JIA) includes a group of disorders characterized by chronic arthritis. It is the most common chronic rheumatic illness in children and is a significant cause of morbidity, disability and dysfunction. Therefore, the potential for school attendance and academic performance become compromised and these children are often confronted with educational difficulties. Objectives: To assess the impact JIA on academic difficulty, academic performance, potential causes of absenteeism, school failure and relationship between schooling and different types of JIA. Materials and Methods: All school going JIA patients between 6-16 years of age who had at least 2 years of schooling (1 year before disease onset and 1 year during the course of disease) were included for the analysis. Two hundred JIA patients were selected by purposive sampling method. A detailed questionnaire was completed for each participant which included socio-demographic, clinical and laboratory characteristics, data related to schooling, academic difficulties and their causes, absenteeism and causes, sports and cultural activities, school failure and school re-entry if any. Fifty four controls were taken who were the healthy sibs of those JIA patients having at least 2 previous years of schooling. Results: Mean age of JIA patients were 10.8 years, 67% were male and male female ratio was 2:1. Academic difficulties were observed for reading, writing and both due to disease process and deformity. Number of absent days and poor attendance in examination was significantly higher in JIA patients (p value < 0.001). Moreover, in case group, only 18% had improved result than the academic year prior to disease onset, 3% had no change, 57% deteriorated and 22% stopped schooling. There were 44 cases of school failure among JIA patients, 30 had school re-entry. No children had school failure or re-entry among the control group. Multiple causes of absenteeism like flare, hospitalization, side effects of drugs, movement difficulties, parental non-interest and some other factors like rainfall, delayed rising from sleep etc co-existed for most of the cases. In control group, mean percentage of absenteeism was 1.6%, mostly due to some febrile illness, cold weather, rainfall, lack of transport, sickness of caregiver etc. Children who did not participate in sports activities were 9.3% in control group and 48.5% in case group (p value < 0.001). Conclusion: It is evident from this study that JIA has negative impact on schooling characterized by poor attendance and academic performance.

Juvenile idiopathic arthritis activity and function ability: deleterious effects in periodontal disease?

The impact of juvenile idiopathic arthritis (JIA) in periodontal diseases is controversial probably due to gender and age heterogeneity. We therefore evaluated a homogeneous female post-pubertal JIA population for these conditions. Thirty-five JIA patients and 35 gender/age comparable healthy controls were evaluated according to demographic data, complete periodontal evaluation, fasting lipoproteins, and anti-lipoprotein lipase antibodies. JIA scores, laboratorial tests, X-rays, and treatment were also assessed. Current age was similar in JIA patients and controls (11.90 ± 2.0 vs. 12.50 ± 3.0 years, p = 0.289). Complete periodontal assessments revealed that gingival index, dental plaque, gingival bleeding, and clinical dental attachment indices were alike in JIA patients and controls (p > 0.05), except for gingival enlargement in former group (p < 0.0001). Further analysis of patients with and without gingivitis revealed that cyclosporine use was more often observed in JIA patients with gingivitis (37 vs. 0%, p = 0.01), whereas no differences were evidenced in demographic, JIA scores, inflammatory markers, and lipid profile in both groups. Of note, two parameters of periodontal assessment were correlated with JIA scores [gingival index (GI) and Childhood Health Assessment Questionnaire (CHAQ) (r s = +0.402, p = 0.020)] and plaque index (PI) and visual analog scale (VAS) physician (r s = +0.430, p = 0.013). In addition, evaluation of dental assessment demonstrated that JIA activity scores had positive correlation with decayed, missing, and filled teeth (DMF-T) and junvenile athritis disease activity score (JADAS) (r s = +0.364,p = 0.037), VAS physician (r s = +0.401,p = 0.021) and VAS patient (r s = +0.364,p = 0.037). We demonstrated, using rigorous criteria, that periodontal and dental condition in JIA is similar to controls. In spite of that, the finding of a correlation with disease parameters provides additional evidence that increased activity and reduced functional ability underlies the deleterious effect of JIA in oral health.

Impact of juvenile idiopathic arthritis on quality of life during transition period at the era of biotherapies

ObjectiveFew studies have assessed Health-Related Quality of Life (HR-QoL) in adults following juvenile idiopathic arthritis, and none since the advent of biotherapies. The aim of our study is to assess the impact of juvenile idiopathic arthritis on quality of life in a large transitional cohort, evaluate which factors influence quality of life in juvenile idiopathic arthritis, and determine which questionnaire should be used in practice. MethodsAll consecutive juvenile idiopathic arthritis patients followed during adulthood in a transitional care program were included. Demographical, clinical and biological data were collected. The following quality of life questionnaires were administered: SF36 and EuroQoL. Age- and sex-matched controls (without rheumatic disease) were included. ResultsOne hundred and sixty-one juvenile idiopathic arthritis (120 women and 41 men) and 76 (51/25) controls were included. Out of 161, sixty-five (40%) were considered to be in remission. Juvenile idiopathic arthritis had a large impact on the physical scales of quality of life. Pain seemed to be the most important factor affecting quality of life in cases of juvenile idiopathic arthritis. No significant difference was found between sub-types of juvenile idiopathic arthritis. ConclusionIn this large transitional cohort of patients at the era of biotherapies, juvenile idiopathic arthritis has a larger effect on physical than mental scale of quality of life measures. Pain was the main factor influencing quality of life. Sub-types of juvenile idiopathic arthritis do not seem to influence quality of life.

Long-term impact of juvenile idiopathic arthritis in the Greek adults' psychosocial life

last follow-up visit (r=0.446, p<0.001). The presence of disease activity was correlated with higher degree of depression (p=0.032) and social dysfunction (p=0.008). Interestingly, patients without or with mild physical disability (HAQ-DI=0-0.49) differed from those with moderate-to-severe disability (HAQ-DI=0.5-3) in the fields of somatization (p=0.004) and social dysfunction (p<0.001), but not of depression. Higher degree of depression was recorded in the unemployed patients (p=0.018) and in those with mandatory education (p=0.018). In contrast, structural damage (JADI-A, TmSvdHS), marital status and current use or duration of corticosteroid treatment didn’ tf ind to influence patients’ psychosocial profile. Global disease activity as rated by the patient, was found to be the only significant predictor of psychosocial distress in the multivariate analysis [B=0.057 95%CI (0.017, 0.097), P=0.005]. Conclusion Psychosocial distress is evident in a considerable proportion of the patients (~19%), indicating a constant impact of the disease on every-day life. The tight control of disease activity is therefore crucial in order to prevent symptoms of depression in these JIA adults.

PReS-FINAL-2063: Proposed criteria for activity, damage and impact of juvenile idiopathic arthritis associated uveitis: consensus effort from the multinational interdisciplinary working group for uveitis in childhood (MIWGUC)

Uveitis is the most common extraartricular manifesation of juvenile idiopathic arthritis (JIA) with an.incidence of approx. 10 - 15 per 100,000 children. Uveitis, a potentially blinding disorder, is present in approx 10-18% of JIA patients, with a wide spectrum of presentations. Despite advances in treatment of childhood arthritis there are no definitions for assessment of activity, damage and impact of JIA associated uveitis.

AB0684 Proposed criteria for activity, damage and impact of juvenile idiopathic arthritis associated uveitis: consensus effort from the multinational interdisciplinary working group for uveitis in childhood (miwguc)

BackgroundUveitis is the most common extraartricular manifesation of juvenile idiopathic arthritis (JIA). Uveitis, a potentially blinding disorder, is present in approx 10-18% of JIA patients, with a wide spectrum of...

Impact of juvenile idiopathic arthritis on schooling

BackgroundJuvenile idiopathic arthritis (JIA) is the most common arthropathy of childhood. Different diseases affect school attendance to varying degrees. The aim of this study was to assess the impact of juvenile idiopathic arthritis (JIA) on Moroccan children’s schooling.MethodsThirty-three children with JIA were included in this study, having been previously diagnosed according to the classification criteria of the International League of Associations for Rheumatology (ILAR). Seventy-four healthy children were recruited to serve as controls. Data was obtained for all children on their school level, educational performance, and attendance. The rate of absenteeism due to health complications was noted.ResultsAll healthy children were able to attend school (p<0.0001), while 33% of children with JIA were unable to attend school due to their condition. The students with JIA who were able to attend school were absent much more often than controls (63% compared to 20%), with a highly significant p value (p<0.0001). Slightly less than half of the JIA patients (48.5%) failed in their schooling. In univariate analysis, there was an association between absenteeism and tender joints (p=0.02), disease activity score (DAS28) (p=0.007), Childhood Health Assessment Questionnaire (CHAQ) (p=0.01), and erythrocyte sedimentation rate (ESR) (p=0.03). In multivariate analysis, the only association persisted between DAS28 and absenteeism.ConclusionsOur study suggested that the schooling of children with JIA was negatively impacted due to the disorder. More studies, with a larger sample of children, are needed to confirm our findings.

Juvenile idiopathic arthritis—and now?

To conduct a systematic literature review on the impact of juvenile idiopathic arthritis (JIA) on craniofacial morphology. Several electronic databases (PubMed, Medpilot, Web of Science, DIMDI) were systematically searched for studies that were published up to and including May 2011. In addition, a manual search of the orthodontic and rheumatologic literature was conducted, and reference lists of the selected articles were checked for relevant publications. The identified articles were independently assessed by two investigators and selected according to a three-step process (title/abstract/full text). After completion of the selection procedure, 19articles were identified possessing great heterogeneity. In most of them, no differentiated analysis of the various JIA subtypes was performed, and type-specific analyses according to mandibular joint effects were seldom. Additional factors such as patient age, disease duration, medication, previous orthodontic treatment as well as the inclusion of a control group were also highly inhomogeneous, which made a meta-analysis of the data impossible. Nevertheless, it appears as if JIA patients tend to develop a hyperdivergent vertical jaw base relationship and a skeletal ClassII pattern. Due to the heterogeneous patient samples, it is currently not possible to draw a differentiated conclusion on the influence of various types of JIA on craniofacial morphology.

Living with juvenile idiopathic arthritis

AbstractPurpose The purpose of the current study was to get a deeper insight into adolescents' experience of life with juvenile idiopathic arthritis (JIA) in the transition process from childhood to adult life, as described by young adults with JIA.Methods The method used was individual qualitative interview, and 15 young adults were interviewed. The interviews were tape recorded and transcribed. Data were analysed using a qualitative content analysis approach.Results From childhood into adult life, living with JIA involves struggle and adjustment to an insecure everyday life and an unpredictable life course. The informants' experiences emerged as dicotomies on a continuum describing the dynamics in life experiences individually and over time. The categories include bodily experiences of limitations or freedom, being acknowledged or set aside in interpersonal relationships, and intrapersonal experiences of insecurity or confidence. The findings indicate a change to greater acceptance and adjustment to the disease over time. However, the perception of being weak and different continued, and in adult life concerns about future health and life were more pronounced.Conclusion The impact of JIA on life in a time of transition from childhood to adult life involves complex challenges on coping strategies and adjustment processes. Understanding this complexity is urgent for health professionals in order to contribute to both normal developmental task achievements and overall well‐being for young people with JIA.

Economic impact of juvenile idiopathic arthritis and familial Mediterranean fever.

The aim of the study was to determine the economical impact of juvenile idiopathic arthritis (JIA) and familial Mediterranean fever (FMF) in Turkey. A total of 100 patients (69 F/31 M) with JIA and 100 with FMF (68 F/32 F) who were consecutively seen in the outpatient clinic of the pediatric rheumatology department at Cerrahpasa Medical School between August 2008 and January 2009 were studied. Cost data were collected through a questionnaire filled out by the parents. The mean age (JIA: 11 ± 5 years; FMF:12 ± 4 years) and mean disease duration (JIA:5 ± 3 years; FMF: 4 ± 3 years) of the patients were similar. JIA patients were assigned to 5 subtypes (polyarticular: n = 45, oligoarticular: n = 30, systemic onset: n = 13, psoriatic: n = 6, and enthesopathy-related JIA: n = 6). Forty-nine percent of the patients with JIA were treated with anti-TNF drugs and 61% with DMARDs. All patients with FMF were using colchicine. The total annual cost of JIA (€3,994 ± 4,101) was considerably higher than that of FMF (€162 ± 77) (P < 0.001). Medication fee was the major determinant of total costs in both diseases constituting 85% in JIA and 39% in FMF. Among the subtypes of JIA, total annual costs were the highest among patients with polyarticular type (€6,045 ± 4,078). Medications especially anti-TNF drugs were the major contributor among all determinants of costs in JIA. The low costs of health care system and prominent changes in the health care policies for the last 5 years in Turkey might have played role in our findings.

Living with Juvenile Idiopathic Arthritis from childhood to adult life. An 18 year follow-up study from the perspective of young adults

PURPOSE: . To obtain a deeper understanding of the meaning of living with juvenile idiopathic arthritis (JIA) through childhood and adolescence into adult life as described by young adults with JIA themselves.METHOD: Based on a qualitative study design, 15 young adults were interviewed individually. The data were analysed using a qualitative content analysis approach.RESULTS: Living with JIA involves struggle and adjustment to an insecure everyday life and an unpredictable life course. The informants' experiences emerged as dichotomies on a continuum describing the dynamics in life experiences individually and over time. The categories include bodily experiences of limitations or freedom, being acknowledged or set aside in interpersonal relationships, and intrapersonal experiences of insecurity or confidence. The findings indicate a change to greater acceptance and adjustment to the disease over time.CONCLUSION: The impact of JIA on life in a time of transition from childhood to adult life involves complex challenges on coping strategies and adjustment processes. Understanding this complexity is urgent for health professionals to contribute to both normal developmental task achievements and overall well-being for young people with JIA. Further investigations should focus on coping and adjustment processes when facing disease fluctuations and unpredictability in a life-span perspective.

Struggle and adjustment to an insecure everyday life and an unpredictable life course

Purpose. To obtain a deeper understanding of the meaning of living with juvenile idiopathic arthritis (JIA) through childhood and adolescence into adult life as described by young adults with JIA themselves.Method. Based on a qualitative study design, 15 young adults were interviewed individually. The data were analysed using a qualitative content analysis approach.Results. Living with JIA involves struggle and adjustment to an insecure everyday life and an unpredictable life course. The informants' experiences emerged as dichotomies on a continuum describing the dynamics in life experiences individually and over time. The categories include bodily experiences of limitations or freedom, being acknowledged or set aside in interpersonal relationships, and intrapersonal experiences of insecurity or confidence. The findings indicate a change to greater acceptance and adjustment to the disease over time.Conclusion. The impact of JIA on life in a time of transition from childhood to adult life involves complex challenges on coping strategies and adjustment processes. Understanding this complexity is urgent for health professionals to contribute to both normal developmental task achievements and overall well-being for young people with JIA. Further investigations should focus on coping and adjustment processes when facing disease fluctuations and unpredictability in a life-span perspective.