Effects of a structured educational intervention on knowledge and emergency management in patients at risk for anaphylaxis.

BACKGROUND: Structured educational programmes for patients at risk for anaphylaxis have not yet been established. Patients and caregivers often lack adequate skills in managing the disease. METHODS: To investigate effects of structured patient education intervention on knowledge, emergency management skills and psychological parameters in patients with previous episodes of anaphylaxis and caregivers of affected children 95 caregivers (11 male, 84 female, mean age 37 years) of affected children and 98 patients (32 male, 66 female, mean age 47.5 years) were randomly assigned to an intervention (IG) or control group (CG) in a multicentre randomized controlled trial. The IG received two 3-h schooling modules of group education; the CG received standard auto-injector training only. Knowledge of anaphylaxis and emergency management competence in a validated training anaphylaxis situation as main outcome measures as well as secondary psychological parameters were assessed at baseline and 3 months after intervention. RESULTS: In comparison with controls, the intervention led to significant improvement of knowledge from baseline to 3-month follow-up (caregivers: IG 3.2/13.2 improvement/baseline vs CG 0.7/12.6; P < 0.001; patients: IG 3.9/10.8 vs 1.3/12.6; P < 0.001). Moreover, emergency management competence was increased after intervention as compared to controls (caregivers: IG 8.6/11.2 vs CG 1.2/10.8; P < 0.001; patients: 7.1/11.0 vs 1.1/11.1; P < 0.001). Intervention showed significant reduction of caregiver anxiety (-1.9/8.4 vs -0.7/7.5; P < 0.05). There were no significant changes in the depression scores. CONCLUSION: Structured patient education programmes may be beneficial in the management of anaphylaxis by increasing patients' empowerment to prevent and treat the disease.

Efficacy of a self-management program for childhood asthma--a prospective controlled study.

Asthma training programs for parents and children have been developed to increase both the self-management skills of asthmatic children and compliance with medical regimes. In order to evaluate two training programs for asthmatic children aged 7-14, 81 patients were randomly assigned to three groups. Group 1 consisted of 27 patients and their parents who participated in a five-day standardized family-oriented clinical asthma training program. They had monthly follow-up meetings with the training team for a period of six months. Group 2 (n = 29) had the same clinical training without follow-up interventions; a control group (n = 25) received regular medical treatment according to the international guidelines at the asthma clinics without a training program and served as control group. Questionnaires regarding self-management aspects, coping and anxiety were filled out by patients, parents, family doctors and the training team prior to as well as twelve months after the training. The results indicate that Training group 1 benefitted most with respect to active asthma self-management, Training group 2 to some degree while the control group showed no significant effects. The differences after one year between the three groups regarding physical parameters such as lung-function and days missed in school did not reach the level of significance. Our results indicate that the long-term efficacy of self management courses for asthmatic children is enhanced by regular follow-up training sessions.

Quality of life in patients with cystic fibrosis and their parents: what is important besides disease severity?

BACKGROUND: Cystic fibrosis is the most common inherited disease with a fatal outcome in industrialised nations. With the improvement in life expectancy, supporting patients and their families in adapting to life with this chronic progressive disease has become increasingly important. The aim of the present study was to investigate the relationship between health related quality of life (HRQOL) in this population, severity of disease, and cognitive/behavioural factors such as subjective health perception and ways of coping. METHODS: A sample of 89 adolescent and adult patients with cystic fibrosis and 125 parents of younger patients with cystic fibrosis completed questionnaires on health related quality of life and on ways of coping with the illness. Parents were asked to fill out the questionnaires regarding their own quality of life and coping. Multiple regression analyses were performed to examine the relationship between different predictor variables and quality of life. RESULTS: After accounting for the impact of disease severity and hours of treatment per day, the subjective health perception of patients significantly explained variance in their quality of life. Ways of coping were also significantly correlated with HRQOL. In parents the most important factor in explaining variance of HRQOL seems to be the coping style, whereas disease severity of the child and subjective health perception did not show any influence. CONCLUSIONS: The findings support the important role of cognitive and behavioural factors in specific subjective health perception and ways of coping in the adaptation to this severe chronic disease, both in patients themselves and in parents. The results call for a careful assessment of issues of coping and professional support for families of patients with cystic fibrosis in the early course of disease.

[Cost-effectiveness studies of ambulatory educational programs for children with asthma and their families]. / Kosten-Nutzen-Untersuchungen bei ambulanten Schulungsmassnahmen für asthmakranke Kinder und ihre Familien.

Increasingly, economic aspects become important in public health which makes necessary the quantification to economical and operational efficiency. One of the instruments applied in this process is cost-benefit-analysis, comparing preventive, curative and rehabilitative services under the aspect of cost and benefit and effectiveness. In this context, we have evaluated a project of ambulant training of asthmatic children and of their parents. We included 142 affected children and their parents, who were trained in the offices of 24 physicians. Evaluation was done with a questionnaire in which data were collected on asthma-management, on quality of life, and on cost-effectiveness. We looked at the year before starting the training and on the year after completion of the training. Treatment costs were decreased by training, life quality improved. Thus, ambulant training of asthmatic children and of their family is a useful and efficient part of preventive rehabilitation.

[Outcome of structured asthma education in childhood and adolescence]. / Ergebnis einer strukturierten Asthmaschulung im Kindes-und Jugendalter.

From 1988 onwards inpatient asthma training courses have been conducted in Berlin and Osnabrück. A controlled study on asthma training was carried out from 1990 to 1992 at both centres with the support of the Robert Bosch Foundation. In the first intervention group a subsequent training course of 6 months' duration was conducted with the inclusion and participation of the relevant family doctors in addition to the main training course. Scrutiny of the result was done before (T1), directly after (T2) and 12 months subsequent to the training course (T3). Improvements are seen in somatic data or cost-relevant data (emergency referral to the hospital or family physician, inpatient hospital periods, referral because of mild obstruction, days of non-attendance in school due to illness, severity of asthma, incidence of symptoms, stress endurance in sports). There is also a marked improvement in the self-assessment ability of the children and in the management of asthma, as well as a decrease in the asthma-specific feeling of anxiety. Self-reliance and independence, as well as early intervention, are improved as seen by the parents, whereas on the other hand unfavourable factors such as arguments on the proper asthma therapy are diminished. Especially with regard to confidence in controls on the state of health or disease there are significant changes that are more marked in the group subjected to subsequent training than in the group without such additional training, compared with the control group. Structured asthma training exercises a strongly positive effect on the daily management of asthma bronchiale by the families on different planes of coping with the disease. These effects are enhanced by subsequent aftercare by the family physician. Intensive care in the asthma outpatient wards alone does not sufficiently modify the factors contributing to good coping with the disease.