Coping in long-term survivors of childhood cancer: relations to psychological distress.

OBJECTIVE: The goal of this study was to describe coping strategies and their associations with psychological distress in young adult survivors of childhood cancer. METHODS: One hundred and sixty-four childhood cancer survivors, at least 7 years after diagnosis, completed questionnaires assessing demographics, health information, psychological distress, and different ways of coping (return rate: 61%). The Brief Symptom Inventory-18 (BSI-18) and the Post-traumatic Diagnostic Scale's (PDS) eight-item short form were used to measure psychological distress. Coping was assessed with the Cognitive Control Strategies Scale (CCSS), the Illness Perception Questionnaire-Revised (IPQ-R), and the White Bear Suppression Inventory (WBSI). RESULTS: Higher levels of distress were associated with the female sex, not being in a relationship, and with the presence of medical late effects. These predictors explained 12% of the variance in psychological distress. When coping variables were also entered into the equation, the amount of explained variance increased to 50%. The most important determinants of psychological distress in our sample were a tendency to suppress negative thoughts and a low level of optimism. CONCLUSION: These results contribute to a better understanding of the correlates of difficulties in long-term psychological adjustment after childhood cancer. Cognitive strategies, which are associated with or may increase the risk for concurrent psychological distress, in specific, avoidance of negative thoughts and a lack of positive future expectations, should be addressed in psychological counseling with survivors suffering from symptoms of distress.

Health-related quality of life in children with cystic fibrosis: validation of the German CFQ-R.

BACKGROUND: This study evaluates the psychometric properties of the Child and Parent versions of the German CFQ-R (Cystic Fibrosis Questionnaire Revised), a disease-specific measure of Health-Related Quality of Life (HRQoL) in children with cystic fibrosis (CF). Self-Rating is combined with proxy-rating by parents in the use of the questionnaire. METHODS: 136 children with CF (6 - 13 years) and their parents were recruited to evaluate internal consistency (Cronbach's alpha) and validity, 20 children and parents to examine reproducibility (ICC). RESULTS: Cronbach's alpha is high in all but two dimensions of the Child version (alpha = 0.23-0.77) and for all dimensions of the Parent version (alpha = 0.69-0.89). For both questionnaires, reproducibility is moderate to high (ICC = 0.50-0.94). Factor analysis shows loadings of >0.4 in the majority of items. Higher HRQoL is reported by children with mild disease compared to those with moderate/severe disease and by boys compared to girls. Convergence between self-rating and proxy-rating depends on the dimension. CONCLUSION: The German CFQ-R, Child and Parent versions, are reliable and valid measures of HRQoL. They should be administered in combination as both, child and parent, provide important information. The measure offers a new patient-reported outcome for clinical purposes as well as for national and international studies in schoolchildren.

The nature of intrusive memories after trauma: the warning signal hypothesis.

Individuals who had experienced a range of different traumas were asked to describe the quality and content of their intrusive memories. Visual intrusions were the most common, and thoughts were uncommon. Intrusion quality varied little with type of trauma. Intrusive memories commonly consisted of stimuli that were present immediately before the traumatic event happened or shortly before the moments that had the largest emotional impact (i.e., when the meaning of the event became more traumatic). It is suggested that intrusive memories are about stimuli that through temporal association with the trauma acquired the status of warning signals, i.e., stimuli that if encountered again would indicate impending danger. This explains why intrusive memories are accompanied by a sense of serious current threat. The warning signal hypothesis may be useful in guiding therapists in identifying the moments with the largest emotional impact that will need reprocessing in treatment, and in educating patients about the nature of reexperiencing symptoms.

Validation of a comprehensive Freiburg Life Quality Assessment (FLQA) core questionnaire and development of a threshold system.

Health related quality of life (HRQOL) has become an important re- search topic in dermatology. We developed a series of modular, dermatology-specific HRQOL questionnaires: the Freiburg Life Quality Assessment (FLQA). Each FLQA questionnaire consists of a core module (FLQA-c) applicable to all skin diseases plus a number of items specific to distinct dermatological diseases. The objectives of the present study were: 1) to test the psychometric properties of the FLQA-c, and 2) to define a threshold indicating a significantly reduced HRQOL. 394 psoriasis patients, 253 atopic dermatitis patients, and 240 control subjects completed the FLQA-c. Cronbach's alphas were above 0.75 for all six scales except for "treatment". Discriminant validity, sensitivity to change, and convergent validity were satisfactory. On the different scales, the threshold indicating a marked reduction in HRQOL detected 33% to 68% of the patients. These data support the reliability and validity of the FLQA-c.

The revised German Cystic Fibrosis Questionnaire: validation of a disease-specific health-related quality of life instrument.

BACKGROUND: The assessment of health related quality of life (HRQOL) has increasingly been recognized as an important adjunct to medical outcome parameters in the monitoring of cystic fibrosis (CF) patients and in clinical studies. The Cystic Fibrosis Questionnaire (CFQ) is a disease-specific HRQOL instrument for CF patients developed in France. Translations are currently being validated in four different countries. The aim of the present study was to validate the German adaptation of the CFQ-14+. METHOD: On the basis of results from a first dataset (n = 197 CF adolescent and adult patients), revisions were made and retested in a second sample of 103 patients. RESULTS: The final revised version showed good construct validity. The same nine HRQOL domains as in the French original CFQ-14+ emerged from the analyses as structurally robust scales. The internal consistencies of the HRQOL scales ranged from 0.71 to 0.94. The instrument's clinical validity was supported by severely ill patients reporting lower HRQOL than less severely ill patients on most scales. CONCLUSION: We conclude that the evidence supports the validity and reliability of the instrument. An important future area of application is the use in comparative multi-center international studies.

Body image in cystic fibrosis--development of a brief diagnostic scale.

For a number of reasons, body image is an important concept in behavioral medicine. First, it is known to be related to clinical phenomena such as poor self-esteem, depression, and anxiety. Second, body image has the potential to influence the patients' self-management and compliance motivation. Finally, body image can be improved through psychological and educative interventions. This study presents the development and validation of a brief, 8-item scale assessing attitudinal body image in patients with cystic fibrosis. A principal component analysis supported three domains represented by the items: evaluation/satisfaction, importance, and trust in physical functioning/health. The test-retest correlations ranged from 0.83 to 0.88, internal consistencies were above 0.70, except for the domain "importance" (alpha = 0.44). The scale scores differentiated between patients with mild and severe symptoms of the disease. Regression analyses identified body image as an important predictor of the patients' health-related quality of life. In summary, our results provide preliminary evidence for the reliability and construct, concurrent, and clinical validity of the instrument.

Evaluation of a parental training program for the management of childhood atopic dermatitis.

Atopic dermatitis (AD) in childhood is a common disease with prevalence rates as high as 20%. Its early onset in infancy and its chronic relapsing course puts a special burden on families. Supporting parents in dealing with the management of AD presents a challenge for physicians. The objective of this study was to determine the effect of a structured parental training program on managing AD in children. Two-hundred and four families participated in a prospective, randomized controlled trial. Children (5 months to 12 years in age) had suffered from moderate-to-severe AD for at least 4 months. They were randomly assigned to either the intervention group or a waiting, control group who could participate in the training program 1 year later. The intervention was an inter-disciplinary, structured educational program which covered medical, nutritional, and psychological issues in six group sessions of 2 h each. The families were assessed at the beginning of the study and 1 year later. Main outcome measures were: severity of eczema (SCORAD); treatment habits; treatment costs; quality of life; and coping strategies. Significant effects were shown regarding treatment behavior, such as regular use of emollients, use of antiseptics and topical steroids in the event of exacerbation, and a reduction in the use of unconventional therapies. Satisfaction with medical treatment was improved, and rumination as an ineffective coping strategy was reduced. Finally, significant reduction of treatment costs was achieved. We conclude that structured training programs for parents of children with AD is a helpful adjunct to dermatological treatment.

German adaptation of the Skindex-29 questionnaire on quality of life in dermatology: validation and clinical results.

BACKGROUND: Health-related quality of life (HRQOL) has increasingly been recognized as an important aspect of a comprehensive clinical assessment in dermatology. OBJECTIVE: The aim of the present study was to translate and validate one of the most frequently used and established skin disease-specific HRQOL questionnaires originally developed in English for the German language area: the Skindex-29. METHODS: 295 in-patients with psoriasis and atopic dermatitis completed the German translation of the Skindex as well as a number of additional skin disease-specific questionnaires. Data from 2 subsamples were analysed separately to test for the robustness of results. RESULTS: Results from principal component analyses supported the scale structure of the original Skindex. Internal consistency coefficients were high for all scales. Further analyses supported the convergent validity of the German adaptation of the Skindex-29 as well as its sensitivity to change. CONCLUSION: The study provides evidence for the validity and reliability of the Skindex-29.