Education and employment in patients with juvenile idiopathic arthritis – a standardized comparison to the German general population

Schlichtiger, Jenny; Haas, Johannes‐Peter; Barth, Swaantje; Bisdorff, Betty; Hager, Logan; Michels, H.; Hügle, Boris; Radon, Katja

doi:10.1186/s12969-017-0172-2

Cited by 21 publications

(13 citation statements)

References 29 publications

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“…We found less work participation in our patients compared to controls. Occupational outcomes in adults with a history of JIA have varied in previous studies 6,7,38,39,43,44,45 , and differences in the social insurance system and level of disease severity among the study populations may influence these differences. Physical disability (CHAQ ≥ 1) at baseline predicted more pain at 19-year followup, and CHAQ ≥ 1 at 3 years predicted physical limitations, lower physical HRQOL, and more pain at 19 years.…”

Section: Discussionmentioning

confidence: 94%

Longitudinal Health Status from Early Disease to Adulthood and Associated Prognostic Factors in Juvenile Idiopathic Arthritis

Tollisen

Selvaag²,

Aasland³

et al. 2019

J Rheumatol

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Objective.To describe the longitudinal health status from childhood to adulthood in patients with juvenile idiopathic arthritis (JIA), compare outcomes after 19 years with those of controls, and identify early predictors of physical functioning, pain, and physical health-related quality of life (HRQOL).Methods.Between 1995–2003, 96 patients with JIA (mean 6.1 ± 4.0 yrs, 67% female) were assessed within 18 months of diagnosis and every 6 months for the next 3 years with measures of JIA disease activity, physical functioning, pain, fatigue, and well-being. They were reassessed a mean of 18.9 ± 1.5 years later (mean age 25.1 ± 4.2 yrs) with measures of physical disability [Health Assessment Questionnaire–Disability Index (HAQ-DI)], pain, fatigue, well-being (visual analog scale), and physical and mental health-related quality of life (HRQOL; Medical Outcomes Study 12-item Short Form Health Survey, version 2).Results.During the first 3 years, physical disability improved (p < 0.001) and the proportion of patients reporting best possible well-being increased (p = 0.013), while pain and fatigue did not change. At 3- and 19-year followups, patients had similar levels of physical disability, well-being, and pain, but fatigue increased (p = 0.016) and the number of patients with HAQ-DI = 0 decreased (p = 0.001). After 19 years, patients had worse pain and physical HRQOL than controls (p < 0.001). Pain, active joints, and physical disability during the first 3 years were associated with more disability and pain and worse physical HRQOL after 19 years (p < 0.001–0.047).Conclusion.Patients with JIA reported similar physical functioning, well-being, and pain at 3- and 19-year followups, but more fatigue after 19 years. Patients also had worse health status than controls after 19 years. Pain, active joints, and physical disability were early predictors of unfavorable outcomes.

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Section: Discussionmentioning

confidence: 94%

Longitudinal Health Status from Early Disease to Adulthood and Associated Prognostic Factors in Juvenile Idiopathic Arthritis

Tollisen

Selvaag²,

Aasland³

et al. 2019

J Rheumatol

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“…Even though this kind of support might actually be available, these answers implied that patients were not aware of their existence. Given that pain and fatigue burden the patients’ daily lives considerably [ 16 , 23 ] and that many JIA patients experience difficulties at school or work, [ 24 – 28 ] these forms of supportive care are of utmost importance and should be made available widely.…”

Section: Discussionmentioning

confidence: 99%

Patient’s experiences with the care for juvenile idiopathic arthritis across Europe

Dijkhuizen

Egert²,

Egert³

et al. 2018

Pediatr Rheumatol

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BackgroundTo assess the views of juvenile idiopathic arthritis (JIA) patients and their parents on the care and treatment they receive in referral pediatric rheumatology centers throughout Europe.MethodsIn a collaboration between physicians and patient associations, a questionnaire was developed, covering various domains of JIA care, including demographics, diagnosis, referrals to various health care professionals, access to pain and fatigue management and support groups, information they received about the disease and awareness of and participation in research. The questionnaire was translated and distributed by parent associations and pediatric rheumatologists in 25 countries, 22 of which were European. After completion the replies were entered on the PRINTO website. Replies could either be entered directly by parents on the website or on paper. In these cases, the replies were scanned and emailed by local hospital staff to Utrecht where they were entered by I.R. in the database.ResultsThe survey was completed by 622 parents in 23 countries. The majority (66.7%) of patients were female, with median age 10–11 years at the completion of the questionnaire. Frequencies of self-reported JIA categories corresponded to literature. Some patients had never been referred to the ophthalmologist (22.8%) or physiotherapist (31.7%). Low rates of referral or access to fatigue (3.5%) or pain management teams (10.0%), age appropriate disease education (11.3%), special rehabilitation (13.7%) and support groups (20.1%) were observed. Many patients indicated they did not have contact details for urgent advice (35.9%) and did not receive information about immunizations (43.2%), research (55.6%) existence of transition of care clinics (89,2%) or financial support (89.7%). While on immunosuppressive drugs, about one half of patients did not receive information about immunizations, travelling, possible infections or how to deal with chickenpox or shingles.ConclusionsLow rates of referral to health care professionals may be due to children whose illness is well managed and who do not need additional support or information. Improvements are needed, especially in the areas of supportive care and information patients receive. It is also important to improve doctor patient communication between visits. Physicians can be instrumental in the setting up of support groups and increasing patients’ awareness of existing support. Suggestions are given to convey crucial pieces of information structurally and repeatedly to ensure, among other things, compliance.Electronic supplementary materialThe online version of this article (10.1186/s12969-018-0226-0) contains supplementary material, which is available to authorized users.

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“…Although there is importance of this period, it is generally undermined in previous studies [18]. Previous studies about the educational achievement of patients with JIA reported generally comparable or higher educational level [19,20]. In a previous study, Archenholtz et al have reported lower educational level in early adult life in patients with JIA [21].…”

Section: Discussionmentioning

confidence: 99%

Health-Related Quality of Life Outcomes of Young Adults with Juvenile Idiopathic Arthritis in Turkish Population

Yılmaz

Umay

Aras

et al. 2019

SN Compr. Clin. Med.

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The aim of the present study is to evaluate the functional status, life quality, mood and functionality of the adult patients with juvenile idiopathic arthritis (JIA) in Turkish population. Forty-seven patients with JIA were included in the study. Demographic features, disease characteristics, number of tender and swollen joints, pain score according to visual analogue scale and disease activity according to Disease Activity Score 28 (DAS28) were calculated and recorded. Functional disability was evaluated with a modified Health Assessment Questionnaire (m-HAQ). Quality of life was evaluated with Arthritis Impact Measurement Scale-2 (AIMS-2). Mood status was evaluated with Beck Depression Inventory (BDI) and Beck Anxiety Inventory (BAI). The average DAS28 score of the patients was 4.37. Mean m-HAQ score was 1.25. According to AIMS-2 subscales, the average mobility level score was 5.5, walking and bending score was 6.0, hand and finger function score was 5.0, arm function score was 3.5, self-care score was 2.5, household tasks score was 3.75, social activities score was 6.0, support from family and friends score was 3.13, arthritis pain score was 6.0, level of tension score was 5.5, mood score was 6.0, satisfactory of health score was 7.31, and the general perception of health score was 5.0. The average BDI score was 19.0 while BAI score was 20.0. Although patients have mild disease activity and functional disability, their mood status and life quality are better. Patients may adapt to their disability status and survive their functional independence.

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Education and employment in patients with juvenile idiopathic arthritis – a standardized comparison to the German general population

Cited by 21 publications

References 29 publications

Longitudinal Health Status from Early Disease to Adulthood and Associated Prognostic Factors in Juvenile Idiopathic Arthritis

Longitudinal Health Status from Early Disease to Adulthood and Associated Prognostic Factors in Juvenile Idiopathic Arthritis

Patient’s experiences with the care for juvenile idiopathic arthritis across Europe

Health-Related Quality of Life Outcomes of Young Adults with Juvenile Idiopathic Arthritis in Turkish Population

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