'The current mental health status of children and young people with JIA, and their wider family': a charity partner collaboration survey.

BACKGROUND: This paper presents insight into the scale of mental health concerns for families who have a child or young person with a diagnosis of Juvenile Idiopathic Arthritis (JIA) living in any of the four nations of the United Kingdom (UK). The study's objective is to share the current experiences of those that responded to a charity survey and consider future work to improve mental health support. METHODS: This work was initiated and led by five UK charity partner organisations working with families affected by JIA. Parents/carers of a child or young person with JIA, and young people with JIA, submitted self-completion online questionnaires. The questionnaire asked 19 core questions, with a focus on the mental health impact of having and living with a JIA diagnosis. Questionnaires were delivered via charity partner UK-wide mailing lists and social media. RESULTS: Questionnaire were completed by 291 participants over a 3-week period in February 2022. The majority of respondents were parents (229, 79%), 103 children had been diagnosed for over six years (35%), and 131 (45%) received shared care between paediatric rheumatology centres. In total, 168 (59%) children and young people with JIA had received, were currently receiving or were waiting for mental health support. Parents reported that their child's diagnosis impacted their own mental health (218, 82%). Children and young people reported never being offered mental health support during appointments for JIA (157, 54%), and 71 (50%) of these had never received support. CONCLUSION: Children and young people with JIA have significant mental health sequelae from their diagnosis. Our findings found that nearly 60% of our respondents have had or are requiring mental health support, with significant numbers of parents/carers reporting difficulties in accessing care for their child's mental health or their own mental health, due to their child's diagnosis. This unique collaborative charity-led study, illustrates the importance of timely and accessible mental health support. Further work is needed to understand why best practice guidance for mental health support is not being met consistently and to identify how to embed it into standard rheumatology care.

The Impact of Perceived Flood Exposure on Flood-Risk Perception: The Role of Distance.

Natural hazards, such as major flood events, are occurring with increasing frequency and inflicting increasing levels of financial damages upon affected communities. The experience of such major flood events has brought about a significant change in attitudes to flood-risk management, with a shift away from built engineering solutions alone towards a more multifaceted approach. Europe's experience with damaging flood episodes provided the impetus for the introduction of the European Floods Directive, requiring the establishment of flood-risk management plans at the river-basin scale. The effectiveness of such plans, focusing on prevention, protection, and preparedness, is dependent on adequate flood awareness and preparedness, and this is related to perception of flood risk. This is an important factor in the design and assessment of flood-risk management. Whilst there is a modern body of literature exploring flood perception issues, there have been few examples that explore its spatial manifestations. Previous literature has examined perceived and real distance to a hazard source (such as a river, nuclear facility, landfill, or incinerator, etc.), whereas this article advances the literature by including an objectively assessed measure of distance to a perceived flood zone, using a cognitive mapping methodology. The article finds that distance to the perceived flood zone (perceived flood exposure) is a crucial factor in determining flood-risk perception, both the cognitive and affective components. Furthermore, we find an interesting phenomenon of misperception among respondents. The article concludes by discussing the implications for flood-risk management.

The role of pain-related anxiety in adolescents' disability and social impairment: ALSPAC data.

BACKGROUND: Anxiety, in particular pain-related anxiety, plays an important role in explaining the severity of pain complaints and pain-related disability in both adults and children with chronic pain. The fear-avoidance model (FAM) describes how pain-related anxiety plays a critical role in the maintenance of pain-avoidance behaviour, which in turn influences pain-related disability. However, the FAM does not take into account broader aspects of adolescence, such as social functioning, which could be negatively impacted by anxiety. In addition, most studies examining the role of anxiety in pain have used small convenience or clinical samples. By using a large UK epidemiological database, this study investigated the associations between pain-related anxiety, disability and judgements of social impairment. METHODS: Participants (n = 856) with recurrent pain were selected from a larger epidemiological study (Avon Longitudinal Study of Parents and Children) of adolescents attending a research clinic at the age of 17 (n = 5170). Adolescents completed a self-report questionnaire on pain-related anxiety, disability and perceived social impairment. RESULTS: High levels of pain-related anxiety were associated with more disability. In girls, higher levels of pain-related anxiety were also related to the self-perception of greater impairment in social functioning compared with their peers. CONCLUSIONS: Pain-related anxiety was associated with greater pain-related disability and impaired social functioning. Social functioning should be explored as an integral part of fear-avoidance models of adolescent chronic pain.

Rare presentation of polyarticular juvenile idiopathic arthritis and the role of the radiograph in initial diagnosis.

BACKGROUND: Polyarticular disease affects one-third of all juvenile idiopathic arthritides. It affects girls twice as much as boys. It usually involves peripheral joints throughout the course of disease. It is unusual for cervical spine involvement to be the presenting symptoms of RF negative polyarthritis. CLINICAL CASE: This is the case of RF-negative polyarticular juvenile idiopathic arthritis that was reported with six-week history of neck pain, torticollis and left knee effusion. The case was sent to the radiology department from primary care. Despite the fact that the symptoms occurred quite recently, on initial radiograph significant cervical spine inflammation and damage were revealed. CONCLUSION: This case highlights the importance of early recognition of neck involvement in juvenile idiopathic arthritis as well as significance of close liaison between radiology and paediatric rheumatology. It also highlights the possible role of cervical spine imaging in all children with juvenile idiopathic arthritis.

Scanning laser Doppler imaging may predict disease progression of localized scleroderma in children and young adults.

BACKGROUND: Localized scleroderma is a rare but potentially disfiguring and disabling condition. Systemic treatment should be started early in those with active disease in key functional and cosmetic sites, but disease activity is difficult to determine clinically. Superficial blood flow has been shown to correlate with disease activity in localized scleroderma. OBJECTIVES: To examine whether superficial blood flow measured by laser Doppler imaging (LDI) has the potential to predict disease progression and therefore select patients for early systemic treatment. METHODS: A group of 20 individuals had clinical assessment and scanning LDI blood-flow measurements of 32 affected body sites. After a mean follow-up of 8.7 months their clinical outcome was compared with the results of the initial LDI assessment. RESULTS: Eleven out of 15 patients with an assessment of active LDI had progressed clinically, and 16 out of the 17 scans with inactive LDI assessment had not progressed, giving a positive predictive value of 73% and a negative predictive value of 94%. CONCLUSIONS: We believe that LDI can be a useful tool in predicting disease progression in localized scleroderma, and it may help clinicians to decide which patients to treat early.

Sex differences in the clinical presentation and management of airflow obstruction.

The aim of the present study was to explore differences in the clinical expression, clinical diagnoses and management of airway diseases in a primary-care setting. Patients aged >or=35 yrs who had ever smoked were enrolled when they presented for any reason to one of eight rural primary-care practices. Respiratory symptom questionnaires and spirometry were administered. In total, 1,034 patients had acceptable and reproducible spirometry, of whom 550 (53%) were males and 484 (47%) were females. Males smoked more than females (41.2 versus 29.2 pack-yrs) respectively, and were more likely to have a pre-bronchodilator forced expiratory volume in one second/forced vital capacity <0.70 at 22.4 versus 11.8%, respectively. However, more females than males reported breathlessness (51.0 versus 42.8%, respectively), a prior diagnosis compatible with airflow obstruction and taking respiratory medications (23.4 versus 14.9%, respectively). In conclusion, the current results suggest that females are more likely than males to report breathlessness and be prescribed respiratory medications independent of differences in the severity of airflow obstruction.

Tuberculosis at Edendale Hospital in Pietermaritzburg, Kwazulu Natal, South Africa.

SETTING: Edendale Hospital, Pietermaritzburg, KwaZulu Natal, South Africa, a 1275-bed hospital that serves a mainly ethnic African population of 1.6 million. OBJECTIVE: To describe the demographic and clinical characteristics of hospitalised active tuberculosis (TB) cases, and correlates of their in-hospital survival. METHODS: A retrospective cohort study of adult TB cases admitted to the medical wards, 16 November to 13 December 2001. RESULTS: Of 760 (28%) admissions, 215 had active TB, of whom 26.5% died in hospital. Patients were mostly young, first diagnosed on admission, and had pulmonary TB. Human immunodeficiency virus (HIV) co-infection was common and predicted by lower absolute lymphocyte count (OR 1.2, 95% CI 1.05-1.38). Extra-pulmonary TB, including pleural and pericardial, was significantly associated with not having HIV infection. In-hospital death was predicted by TB diagnosed prior to admission (OR 3.18, 95% CI 1.67-6.07), acquired immune-deficiency syndrome (AIDS) associated disease, and higher total leukocyte count--by higher leukocytes only in patients without AIDS (OR 8.52, 95% CI 2.67-27.13). CONCLUSION: Active TB was common in in-patients at an acute care hospital. TB patients presented late in disease and had high in-hospital mortality. Early detection and effective treatment of active TB in the community is likely to reduce hospitalisation and improve survival.

Chronic pain in adolescents: evaluation of a programme of interdisciplinary cognitive behaviour therapy.

AIM: To determine the effectiveness of an interdisciplinary cognitive behavioural treatment for adolescents with chronic pain. METHODS: Fifty seven adolescents (mean age 14.28 years) with chronic pain and 57 accompanying adults underwent an interdisciplinary three week residential programme of group cognitive behavioural therapy. Mean chronicity of pain was 4.02 years; 75% were absent from full time education (mean absence 17 months). RESULTS: Post-treatment adolescents reported significant improvements for self report of disability (mean difference 3.37 (95% CI 0.65 to 6.09)), physical function (mean difference timed walk of 2.61 seconds (1.02 to 4.2) and sit to stand of 3.22 per minute (0.79 to 5.65)). At three months post-treatment adolescents maintained physical improvements and reduced anxiety (mean difference 1.7 (0.72 to 2.67)), disability (mean difference 4.3 (1.44 to 7.17)), and somatic awareness (mean difference 4.43 (1.53 to 7.33)). Following treatment adults reported significant improvement in their report of adolescent disability (mean difference 4.43 (2.17 to 6.7)), adult anxiety (mean difference 1.73 (0.54 to 2.92)), depression (mean difference 1.16 (0.34 to 1.98)), and parental stress (mean difference 10.81 (2.91 to 18.78)). At three months significant improvements were maintained. At three months 64% improved school attendance; 40% had returned to full time education. CONCLUSIONS: Interdisciplinary cognitive behavioural pain management (with family involvement) is a promising approach to the management of pain, pain related distress, and disability.

Patient based method of assessing adverse events in clinical trials in rheumatology: the revised Stanford Toxicity Index.

We describe the progress towards developing a patient rated toxicity index that meets all of the patient-important attributes defined by the OMERACT Drug Safety Working Party. These attributes are frequency, severity, importance to patient, importance to the clinician, impact on economics, impact on activities, and integration of adverse effects with benefits. The Stanford Toxicity Index (STI) has been revised to collect all attributes with the exception of impact on activities. However, since the STI is a part of the Health Assessment Questionnaire (HAQ), impact on activities is collected by the HAQ. In particular, a new question asks patients to rate overall satisfaction, taking into consideration both benefits and adverse effects. The next step in the development of this tool is to ensure that the STI meets the OMERACT filter of truth, discrimination, and feasibility. Although truth and feasibility have been confirmed by comparisons within the ARAMIS database, discrimination needs to be assessed in clinical trials.

Individualized functional priority approach to the assessment of health related quality of life in rheumatology.

Over the past several years an interest has developed in health related quality of life questionnaires that address the specific concerns of each individual rather than the entire range of potential concerns for all patients. Even disease-specific questionnaires do not capture the concerns of all individuals and some items in these questionnaires are irrelevant for a fairly large minority of people. This paper focuses on individualized functional priority questionnaires that allow patients to specify and prioritize their own personal disease related problems. Of particular interest are the scoring methods and responsiveness of these questionnaires, both necessary variables for defining minimal clinically important differences.

Antibacterial properties of xanthine oxidase in human milk.

Formula-fed babies contract gastroenteritis more than breast-fed babies, which is of concern to mothers who cannot breastfeed or, as with HIV-infected mothers, are discouraged from breastfeeding. The ability of endogenous breastmilk xanthine oxidase to generate the antimicrobial radical nitric oxide has been measured and its influence on the growth of Escherichia coli and Salmonella enteritides examined. Breastmilk, but not formula feed, generated nitric oxide. Xanthine oxidase activity substantially inhibited the growth of both bacteria. An important natural antibiotic system is missing in formula feeds; the addition of xanthine oxidase may improve formula for use when breastfeeding is not a safe option.

Assessment of quality of life in patients with cardiac disease: the role of psychosomatic medicine.

OBJECTIVE: The measurement of quality of life has become important in evaluating new treatments of cardiac disease. This review focuses on definition and general concepts underlying quality of life in patients with cardiac disease, the ways in which it is measured, and the uses and limitations of quality-of-life measurement. METHODS: A Medline search, from 1988 to 1998, was undertaken using the search terms "cardiovascular disease and quality of life" and "cardiovascular disease and health status." Results of clinical trials of cardiovascular therapies using quality-of-life instruments were not reviewed. RESULTS: Quality of life is defined as "...the functional effect of an illness and its consequent therapy upon a patient, as perceived by the patient." Domains of quality of life include physical, mental, social, and occupational function; health perceptions; and symptoms of disease. CONCLUSION: Psychosomatic medicine contributions to understanding patients' reactions to physical illness and injury may offer enhanced insight into assessment of health perceptions. Generic health profiles and cardiac-disease-specific quality-of-life measures would also be useful in psychosomatic investigations of personality, hostility, depression, and social isolation in patients with cardiac disease.

Maternal smoking and fetal erythropoietin levels.

OBJECTIVE: To determine the influence of maternal smoking on fetal erythropoietin concentrations in health term pregnancies and test the correlation between cotinine, a biomarker of maternal smoking, and erythropoietin levels in fetuses. METHODS: We invited women with healthy term pregnancies to participate in the study, excluding those with conditions previously known to be associated with elevated fetal erythropoietin levels. We recorded demographic data, smoking status, and labor outcome prospectively for each patient. Umbilical venous samples were collected, and serum was stored at -70C to be analyzed later for erythropoietin and cotinine. Umbilical arterial samples were tested for pH and base excess determination. We compared fetal erythropoietin and cotinine between smokers and nonsmokers and examined correlations between erythropoietin and cotinine. Kruskal-Wallis test, t test, median test, and Spearman rank correlation test were used when appropriate. Statistical significance was P <.05. RESULTS: We recruited 35 nonsmokers and 26 smokers and analyzed their samples. The two groups were comparable in demographics and birth outcomes, except for birth weights, which were lower in smokers. Fetal erythropoietin concentrations increased significantly with increasing maternal cigarette consumption, ranging from none to more than 15 cigarettes per day (P =.03). There was positive correlation between fetal erythropoietin and cotinine concentrations (r =.41; P =.04), suggesting a dose-response relationship. CONCLUSION: Fetuses of smokers had increased erythropoietin concentrations that correlate positively with fetal cotinine levels; which suggests an increased risk of subacute hypoxia related to degree of maternal cigarette consumption.

The Edmonton Symptom Assessment Scale (ESAS) as an audit tool.

To ensure quality of care, palliative care programs need to document the effectiveness of their relief of physical and psychological distress. The Edmonton Symptom Assessment Scale (ESAS) is a validated, reliable instrument developed to measure 9 different symptoms in palliative care patients. To see if symptom management could be compared across institutions, we first reviewed the charts of 188 successive admissions to the palliative care unit at St. Boniface General Hospital, Winnipeg, Manitoba. Our study showed that the ESAS is a useful audit tool for assessing patterns of palliative symptom control that allows for institutional comparisons. Procedures that ensure completeness of data collection remain to be developed.

Totally implantable venous access ports systems for patients receiving chemotherapy for solid tissue malignancies: A randomized controlled clinical trial examining the safety, efficacy, costs, and impact on quality of life.

PURPOSE: To examine the safety, efficacy, costs, and impact on quality of life of venous access ports implanted at the outset of a course of intravenous cancer chemotherapy. PATIENTS AND METHODS: Adults beginning a course of intravenous chemotherapy at two university-affiliated hospitals were randomly allocated to have venous access using a surgically implanted venous access port (Port-a-Cath; Pharmacia, Canada Inc, Montreal, Québec, Canada) or using standard peripheral venous access. All accesses were documented by number, route, purpose, and procedure duration. Outcome measurements included port complications, access strategy failure, access-related anxiety and pain, quality of life (Functional Living Index-Cancer [FLI-C]), and costs. RESULTS: Port complication rates were low (0.23/1,000 days). Failure occurred in two (3.4%) of 59 port subjects and 16 (26.7%) of 60 controls (P =. 0004) at a median period of 26 days after randomization (95% confidence interval, 8 to 92). Peripheral accesses in port subjects took less time, had less access-related anxiety and pain, and were less costly to perform than in controls. Allocation had no effect on FLI-C scores. Peripheral access failure correlated with allocation to the control group (P =.007), higher pain scores with intravenous (IV) starts (P =.003), and anxiety with IV starts (P =.01). Venous accessing overall in port patients was four times more costly than that in controls ($2,178/patient v $530/patient, respectively). CONCLUSION: Ports were safe and effective but had no detectable impact on functional quality of life, despite less access-related anxiety, pain, and discomfort. Because only approximately one quarter of control patients ultimately required central venous access, economic considerations suggest that port-use policies should be based upon defined criteria of need.