Six Major Steps to Make Investigations of Suicide Valuable for Learning and Prevention.

OBJECTIVE: The decline in suicide rates has leveled off in many countries during the last decade, suggesting that new interventions are needed in the work with suicide prevention. Learnings from investigations of suicide should contribute to the development of these new interventions. However, reviews of investigations have indicated that few new lessons have been learned. To be an effective tool, revisions of the current investigation methods are required. This review aimed to describe the problems with the current approaches to investigations of suicide as patient harm and to propose ways to move forward. METHODS: Narrative literature review. RESULTS: Several weaknesses in the current approaches to investigations were identified. These include failures in embracing patient and system perspectives, not addressing relevant factors, and insufficient competence of the investigation teams. Investigation methods need to encompass the progress of knowledge about suicidal behavior, suicide prevention, and patient safety. CONCLUSIONS: There is a need for a paradigm shift in the approaches to investigations of suicide as potential patient harm to enable learning and insights valuable for healthcare improvement. Actions to support this paradigm shift include involvement of patients and families, education for investigators, multidisciplinary analysis teams with competence in and access to relevant parts across organizations, and triage of cases for extensive analyses. A new model for the investigation of suicide that support these actions should facilitate this paradigm shift.HIGHLIGHTSThere are weaknesses in the current approaches to investigations of suicide.A paradigm shift in investigations is needed to contribute to a better understanding of suicide.New knowledge of suicidal behavior, prevention, and patient safety must be applied.

Collaborative and partnership research for improvement of health and social services: researcher's experiences from 20 projects.

BACKGROUND: Getting research into policy and practice in healthcare is a recognised, world-wide concern. As an attempt to bridge the gap between research and practice, research funders are requesting more interdisciplinary and collaborative research, while actual experiences of such processes have been less studied. Accordingly, the purpose of this study was to gain more knowledge on the interdisciplinary, collaborative and partnership research process by investigating researchers' experiences of and approaches to the process, based on their participation in an inventive national research programme. The programme aimed to boost collaborative and partnership research and build learning structures, while improving ways to lead, manage and develop practices in Swedish health and social services. METHODS: Interviews conducted with project leaders and/or lead researchers and documentation from 20 projects were analysed using directed and conventional content analysis. RESULTS: Collaborative approaches were achieved by design, e.g. action research, or by involving practitioners from several levels of the healthcare system in various parts of the research process. The use of dual roles as researcher/clinician or practitioner/PhD student or the use of education designed especially for practitioners or 'student researchers' were other approaches. The collaborative process constituted the area for the main lessons learned as well as the main problems. Difficulties concerned handling complexity and conflicts between different expectations and demands in the practitioner's and researcher's contexts, and dealing with human resource issues and group interactions when forming collaborative and interdisciplinary research teams. The handling of such challenges required time, resources, knowledge, interactive learning and skilled project management. CONCLUSIONS: Collaborative approaches are important in the study of complex phenomena. Results from this study show that allocated time, arenas for interactions and skills in project management and communication are needed during research collaboration to ensure support and build trust and understanding with involved practitioners at several levels in the healthcare system. For researchers, dealing with this complexity takes time and energy from the scientific process. For practitioners, this puts demands on understanding a research process and how it fits with on-going organisational agendas and activities and allocating time. Some of the identified factors may be overlooked by funders and involved stakeholders when designing, performing and evaluating interdisciplinary, collaborative and partnership research.

A 5-year prospective population-based study of juvenile chronic arthritis: onset, disease process, and outcome.

OBJECTIVES: To investigate, in a population-based cohort of patients with juvenile chronic arthritis (JCA), onset characteristics, progression, outcome, and prognostic factors longitudinally for 5 years. METHODS: This cohort consisted of 132 incidence cases identified between 1984 and 1986 in southwestern Sweden followed for 5 years with annual reports of subgroup, joint assessment, disease activity, eye examinations, laboratory measurements, and medication. At the 5-year follow-up, the Childhood Health Assessment Questionnaire (Child-HAQ) was evaluated. European League Against Rheumatism (EULAR) criteria for diagnosis and disease activity were used. RESULTS: During the 5 years only four patients were lost to follow-up, 34% changed subgroup and 8% developed uveitis. At the 5-year follow-up the disease was active in 12% of the patients, stable in 28%, inactive in 25%, and in remission in 34%. Among those examined, 24% had radiological changes, of whom half had advanced changes. The Child-HAQ median score at the 5-year follow-up was 0.13 (range 0.0-1.9). The number of involved joints at inclusion correlated positively with active disease at the 5-year follow-up. Age at disease onset, the number of involved joints, and the number of joints with arthritis correlated positively with continuous disease and Child-HAQ score. CONCLUSION. Our study shows a diverse disease course during the first 5 years of JCA where one-third changed subgroup and two-thirds did not reach remission. Age of disease onset, the number of involved joints, and the number of joints with arthritis at inclusion were associated with poor outcome at the 5-year follow-up.

Does removal of aids/devices and help make a difference in the Childhood Health Assessment Questionnaire disability index?

OBJECTIVE: To assess whether the removal of aids/devices and/or help from another person in the Childhood Health Assessment Questionnaire (C-HAQ) leads to a significant change in the disability index (DI) score and responsiveness in juvenile idiopathic arthritis (JIA). METHODS: Changes in the C-HAQ DI score in a cross-sectional sample of 2663 children with JIA and in 530 active patients with JIA in a trial of methotrexate (MTX) were compared. RESULTS: Patients in the MTX trial had higher disease activity and disability than the cross-sectional sample. The frequency of aids/devices (range 1.2-10.2%) was similar between the two samples, while help (range 5.3-38.1%) was more frequently used in the MTX group. Correlation between disease severity variables and the two different C-HAQ DI scoring methods did not change substantially. There was a decrease in the C-HAQ DI score for both the cross-sectional (mean score from 0.64 with the original method to 0.54 without aids/devices and help, p<0.0001) and the MTX sample (mean score from 1.23 to 1.07, p<0.0001). A linear regression analysis of the original C-HAQ DI score versus the score without aids/devices and help demonstrated the substantial overlap of the different scoring methods. Responsiveness in the responders to MTX treatment did not change with the different C-HAQ DI scoring methods (range 0.86-0.82). CONCLUSION: The removal of aids/devices and help from the C-HAQ does not alter the interpretation of disability at a group level. The simplified C-HAQ is a more feasible and valid alternative for the evaluation of disability in patients with JIA.

Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas. The PRINTO multinational quality of life cohort study.

OBJECTIVES: To compare health-related quality of life (HRQL) and to identify clinical determinants for poor HRQL of patients with juvenile idiopathic arthritis (JIA) coming from three geographic areas. METHODS: The HRQL was assessed through the Child Health Questionnaire (CHQ). A total of 30 countries were included grouped in three geographic areas: 16 countries in Western Europe; 10 in Eastern Europe; and four in Latin America. Potential determinants of poor HRQL included demographic data, physician's and parent's global assessments, measures of joint inflammation, disability as measured by Childhood Health Assessment Questionnaire (CHAQ) and erythrocyte sedimentation rate. Poor HRQL was defined as a CHQ physical summary score (PhS) or psychosocial summary score (PsS) <2 S.D. from that of healthy children. RESULTS: A total of 3167 patients with JIA, younger than 18 yrs, were included in this study. The most affected health concepts (<2 S.D. from healthy children) that differentiate the three geographic areas include physical functioning, bodily pain/discomfort, global health, general health perception, change in health with respect to the previous year, self-esteem and family cohesion. Determinants for poor HRQL were similar across geographic areas with physical well-being mostly affected by the level of disability while the psychosocial well-being by the intensity of pain. CONCLUSION: We found that patients with JIA have a significant impairment of their HRQL compared with healthy peers, particularly in the physical domain. Disability and pain are the most important determinants of physical and psychosocial well-being irrespective of the geographic area of origin.

The Swedish version of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ).

We report herein the results of the cross-cultural adaptation and validation into the Swedish language of the parent's version of two health related quality of life instruments. The Childhood Health Assessment Questionnaire (CHAQ) is a disease specific health instrument that measures functional ability in daily living activities in children with juvenile idiopathic arthritis (JIA). The Child Health Questionnaire (CHQ) is a generic health instrument designed to capture the physical and psychosocial well-being of children independently from the underlying disease. The Swedish CHAQ CHQ were already published and therefore were revalidated in this study. A total of 129 subjects were enrolled: 69 patients with JIA (13% systemic onset, 39% polyarticular onset, 25% extended oligoarticular subtype, and 23% persistent oligoarticular subtype) and 60 healthy children. The CHAQ clinically discriminated between healthy subjects and JIA patients, with the systemic, polyarticular and extended oligoarticular subtypes having a higher degree of disability, pain, and a lower overall well-being when compared to their healthy peers. Also the CHQ clinically discriminated between healthy subjects and JIA patients, with the systemic onset, polyarticular onset and extended oligoarticular subtypes having a lower physical and psychosocial well-being when compared to their healthy peers. In conclusion the Swedish version of the CHAQ-CHQ are reliable, and valid tools for the functional, physical and psychosocial assessment of children with JIA.

Construct validity of ILAR and EULAR criteria in juvenile idiopathic arthritis: a population based incidence study from the Nordic countries. International League of Associations for Rheumatology. European League Against Rheumatism.

OBJECTIVE: New classification criteria (ILAR) have been proposed for juvenile idiopathic arthritis (JIA). They are more descriptive than those formerly used [American College of Rheumatology (ACR), European League Against Rheumatism (EULAR)], but require validation against classifications already in use. We validated the ILAR criteria in relation to the EULAR criteria in a prospective, incidence, and population based setting, and analyzed their feasibility. METHODS: Construct validity of ILAR and EULAR classification criteria refers to how closely the 2 instruments are related and how each of them operates in classifying subgroups/categories. Twenty doctors in 5 Nordic countries collected data from the incidence cases within their catchment areas during an 18 month period beginning July 1, 1997. Clinical and serological data from the first year of disease were collected. RESULTS: A total of 322 patients were included. Classification according to the ILAR criteria was possible in 321 patients; 290 patients had a disease duration > or = 3 months and were classified according to the EULAR criteria. One child could only be classified according to the EULAR criteria. Thus, 31/322 (9.6%) children were classified according to the ILAR criteria only. Forty-eight of 321 (15%) patients did not fit into any category and 6% (20/321) fulfilled criteria for2 categories. In the ILAR classification 5 out of 7 categories/subgroups have 2 to 5 specified exclusion criteria that highly discriminate the definition of each patient. In our study the exclusion criteria were fulfilled to only a small extent. CONCLUSION: The EULAR and ILAR criteria differ concerning the operational definitions of the subvariables involved, which complicates their comparison. By using ILAR rather than EULAR criteria the number of cases with juvenile arthritis increased by 10%, considering the first half-year after onset. The validity of the ILAR criteria is low since they often exclude patients from subgroup classification and the possibility of having more than one diagnosis is not negligible. The specified exclusion criteria for some of the subgroups are difficult to fulfill in clinical work and variables involved could be questioned with regard to their consistency.

[Rheumatic diseases in children as an important specialty. Bone marrow transplantation is the hope for the most severely ill patients]. / Reumatiska sjukdomar hos barn viktigt specialområde. Benmärgstransplantation ger ökat hopp för de svårast sjuka.

Chronic inflammatory joint disorders can be viewed as a spectrum of disease presenting one set of characteristics during childhood and another in adulthood. Few of the disorders are specific for children of a specific age, even if some conditions might be very rare in certain age groups. Juvenile idiopathic arthritis is a new name suggested for pediatric chronic inflammatory joint disorders. Drug therapy is based on the same principles as for adults: an aggressive approach with NSAID-drugs and low dose methotrexate in combination with local steroid injections. New drugs like TNF-blockade and COX-2 inhibitors are almost untested in children, with the exception of etanercept which has been studied in children with polyarticular disease and proven to be very effective. For rare cases with very severe joint disease hematopoietic stem cell transplantation is under evaluation.

Juvenile arthritis--who gets it, where and when? A review of current data on incidence and prevalence.

Epidemiological studies of chronic arthritis in childhood can provide clues to genetic determinants of disease manifestations and environmental triggers. Available data are difficult to compare, however, because of the heterogeneity of the disease, differences in the classification criteria used for definition and inclusion, and differences in source populations and case ascertainment. Nevertheless, when the data are interpreted according to the methodologies used, geographical and ethnic differences can be found with regard to occurrence rates, age at onset, subgroup distribution and immunological markers. Seasonal variations have been detected in systemic disease. Variations in the incidence of childhood arthritis over time have also been observed, indicating environmental influences on disease frequency, while familial aggregations suggest the presence of genetic factors. These epidemiological data from a challenging puzzle which we hope will provide clues to future understanding of etiologies and cures, with the help of basic scientific research.

Juvenile chronic arthritis in urban San José, Costa Rica: a 2 year prospective study.

OBJECTIVE: To find the incidence and prevalence of juvenile chronic arthritis (JCA) in the urban area of San José, Costa Rica. METHODS: During the year preceding our 2 year prospective, population based study, we conducted an educational program on JCA. The physicians caring for children < 16 years of age from all centers in the study area followed the program. They were asked to refer all cases of possible JCA according to EULAR criteria. The children were all evaluated at the National Children's Hospital. RESULTS: Of 189 children referred, 48 fulfilled EULAR criteria for JCA. The 2 year incidence rate for JCA was 13.7 per 100,000 children < 16 years old. This corresponds to an annual incidence per 100,000 children of 6.8 (95% CI 4.1-9.6). The incidence rate for pauciarticular onset JCA was 3.9 per 100,000. At the prevalence date, 122 cases of JCA were recorded, corresponding to a prevalence of 34.9 per 100,000 children < 16 years. When patients in remission were excluded, the prevalence was 31.4 per 100,000 (95% CI 25.5-37.2). The pauciarticular onset form was the most common, 71% of all prevalence cases. The highest incidence and prevalence were noted for pauciarticular girls with late onset JCA. No incidence peak was found in preschool age. The girl-to-boy ratio was 1.5/1. Antinuclear antibodies (ANA) were positive in only 7 cases (6.3%). IgM rheumatoid factor was found in 13 children (10.6%). Chronic iritis was observed in 4 cases, all of them ANA negative and older than 7 years of age at onset of arthritis. CONCLUSION: The incidence and prevalence observed were lower than those reported in other population based studies, but within the confidence intervals of their data. The incidence rate for pauciarticular JCA was significantly lower than that reported in other comparable studies. ANA positive pauciarticular preschool girls and associated uveitis were rarely encountered.

At least three hepatitis C virus strains implicated in Swedish and Danish patients with intravenous immunoglobulin-associated hepatitis C.

BACKGROUND: Three reported Swedish cases of hepatitis C in patients receiving an intravenous immunoglobulin (Gammagard, Baxter Healthcare, Deerfield, IL) were among the first to bring to light a worldwide outbreak of hepatitis C associated with non-solvent/detergent (SD)-treated Gammagard. In February 1994, all implicated batches of Gammagard were recalled and exposed patients traced. STUDY DESIGN AND METHODS: Sera from all identified and hepatitis C-viremic Swedish and Danish patients (n = 14) exposed to the implicated batches underwent hepatitis C virus genotyping and sequencing of the core region and hypervariable region 1 of E2. Genomic amplification was also done on 15 non-SD-treated batches of Gammagard. RESULTS: Twelve patients were infected with subtype 1a and surprisingly, two with subtype 2b. Analysis of the core region showed identical sequences in four patients and the only consistently positive batch. Five patients shared another sequence, whereas three other subtype 1a patients each manifested unique sequences. The two subtype 2b isolates were identical. Genomic fingerprinting of the hypervariable region confirmed identity within each group with great stringency. Amplification with isolate-specific primers showed mixed infection in one patient whose exposure was confined to a single batch. CONCLUSION: The few batches implicated presumably were contaminated with several strains.

Development of a Costa Rican version of the Childhood Health Assessment Questionnaire.

OBJECTIVE: To validate a Spanish language version of the Childhood Health Assessment Questionnaire (CHAQ) for use in Costa Rica and to evaluate the feasibility, reliability, and cross cultural equivalency of this version. METHODS: The original questionnaire, translated without modification into Spanish, was administered to 12 children, all above 10 years of age, with the diagnosis of juvenile chronic arthritis (JCA) and to their parents. There were several problems in comprehension, and self-administration with this version was not possible. For this reason a teacher and a psychologist were consulted to create a modified Costa Rican version. We administered this 2nd version to 46 children with JCA and 62 of their parents. RESULTS: The modified Costa Rican HAQ (CR-CHAQ) was self-administered by 93.5% of the patients and 84% of the parents. The median time to complete the questionnaire was 12 min for the children, 10 min for the parents. The main difficulty in comprehension was the pain score for both groups. Test-retest (Spearman R = 0.73) and interobserver (Spearman R = 0.70) reliability were good. Validity of the instrument was confirmed by the high correlation between the disability and discomfort scores and conventional clinical variables. There was satisfactory correlation between the disability score and conventional clinical variables. Discriminant validity was confirmed by the capacity of the CR-CHAQ to evaluate patients as being in different categories of disease activity. CONCLUSION: After modifications, the CR-CHAQ achieved cross cultural equivalency.

Serum concentration of hyaluronan, IgM and IgA rheumatoid factors in a population based study of juvenile chronic arthritis.

Increased serum levels of hyaluronan (HA) have been found in patients with liver diseases, psoriasis, malignancies as well as in rheumatoid arthritis and osteoarthritis. In the two latter groups serum HA levels may reflect the extent of synovial involvement and inflammation, rather than only unspecific information. This study was performed to elucidate the value of measuring HA in children with juvenile chronic arthritis (JCA) and to study its relation to class specific rheumatoid factors (IgM Rf and IgA Rf). HA was analysed in sera from 271 patients with JCA and 130 controls using a radiometric assay and IgM Rf and IgA Rf were analysed using an enzyme immunoassay. The results were analysed in relation to JCA subgroup, disease activity and functional outcome. In patients and controls higher levels of HA were found in young children than in older. Raised levels of HA and IgM Rf were mainly found in children with polyarticular disease. Impaired functional outcome was related to raised HA levels. No correlation was found between HA levels and IgM Rf or IgA Rf. Measurement of HA levels in JCA is of no diagnostic value because of low sensitivity. Quantification of HA may, however, have prognostic value in a subgroup of patients belonging to the polyarticular subgroup.

Measurement of functional status in juvenile chronic arthritis: evaluation of a Swedish version of the Childhood Health Assessment Questionnaire.

Few well-validated self-and/or parent-administered instruments are available for measuring functional status in children with rheumatic diseases. Parts of the Stanford Health Assessment Questionnaire (HAQ) have been adapted for use in children in the so-called Child HAQ. The aim of this study was to investigate the validity of this instrument in a Swedish setting. The Child HAQ was administered to 186 patients and 211 patients participating in a population-based follow-up study of juvenile chronic arthritis (JCA) in southwestern Sweden. The EULAR criteria were used for inclusion. Children who were 9 years of age or older self-reported. Reliability, evaluated by test-retest, inter-observer correlations and internal reliability, was excellent. Convergent validity was demonstrated by strong correlations of the disability index, pain, and morning stiffness with disease activity and the Steinbrocker functional classes. Discriminant validity was evidenced by the capacity of the instrument to evaluate patients as being active or in remission. Thus, the Child HAQ showed excellent measurement performance in a Swedish setting when using parents or children more than 9 years old as responders.

Use of anti-thymocyte globulin in the management of refractory systemic autoimmune diseases.

The purpose of our pilot study was to evaluate the short-and long-term efficacy of T-lymphocyte depletion in the management of patients with refractory, systemic autoimmune diseases. Nine patients with severe, therapy-resistant autoimmune diseases were subjected to T-cell depletion procedure using polyclonal anti-T-cell antibodies combined with peroral administration of azathioprine and/or cyclosporine. The proband group consisted of 4 patients with systemic lupus erythematosus, 3 with progressive systemic sclerosis, and 2 with rheumatoid arthritis. Administration of polyclonal anti-T-cell antibodies was performed at a single occasion via a central venous catheter during 9-10 days. Immunological analyses of T-cell phenotypes and function and assessment of organ function (kidneys, lungs, bone-marrow) has been performed prospectively in all the patients studied. This treatment resulted in prompt and long-lasting (mean follow-up time: 25.6 months) improvement of autoimmune hemolytic anemia, glomerulonephritis, lung fibrosis, skin and joint involvements in the majority of cases. Adverse effects of this treatment included two episodes of infection (E. coli and Cytomegalovirus) and three cases of serum sickness, and were all easily managed. We suggest that this treatment modality adopted from transplant rejection therapy could be employed in cases of severe autoimmune diseases unresponsive to regular immunosuppressive treatment.

Incidence and prevalence of juvenile chronic arthritis: a population survey.

In a population based epidemiological survey of juvenile chronic arthritis (JCA), performed in Western Sweden in 1983, an incidence of 12/100,000 was found. The estimated prevalence was 56/100,000. Subgroup distribution showed a preponderance of mono- and pauciarticular forms. The peak age of onset was between 0 and 4 years of age. Girls predominated over boys in a ratio of 3:2. Overall, 30% were antinuclear antibody (ANA) positive, 9% rheumatoid factor (RF) positive, and eye involvement occurred in 10% of the children. The results suggest differences in population based studies of JCA compared with previously reported hospital based series.