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Symptoms, health and illness behaviour in cystic fibrosis
Insights
Children and adolescents with Cystic Fibrosis (CF) successfully manage their condition, with health actions showing seasonal variation. Despite perceived vulnerability, their experienced symptoms were less severe than anticipated.
Area of Science:
- Pediatrics
- Pulmonology
- Health Psychology
Background:
- Cystic Fibrosis (CF) is a chronic genetic disorder affecting multiple organs, primarily the lungs.
- Managing CF in pediatric populations requires understanding daily health experiences and coping mechanisms.
- Adolescents with CF face unique challenges in balancing disease management with daily life.
Purpose of the Study:
- To investigate the daily health experiences and actions of children and adolescents with Cystic Fibrosis.
- To explore the relationship between disease severity, health actions, and emotional responses.
- To assess the discrepancy between perceived vulnerability and actual symptom experience in young CF patients.
Main Methods:
- A health diary was administered to 53 children and adolescents (age 11-17) with CF over 3 non-consecutive months (28 days each).
- Data collected included ill health actions (e.g., missing school), use of additional medicines, symptom severity (visual analogue scale), worries, and overall daily assessment.
- Analysis of variance (ANOVA) was used to examine associations between variables.
Main Results:
- Response rates decreased over the study period (96%, 84%, 58%).
- Ill health actions (0-21% of days) exhibited seasonal variation, peaking in May.
- Significant associations were found between health actions, additional medicine use, and disease severity; however, worries and overall assessment showed no such links.
- Patients reported low bother from symptoms (highest VAS 2.4 for cough).
- A significant disparity existed between predicted and experienced symptoms (e.g., cough, shortness of breath), with predictions being 4-5 times higher than actual experience.
Conclusions:
- Children and adolescents with CF demonstrate successful coping strategies.
- The discrepancy between perceived vulnerability and experienced symptoms suggests potential uncertainty regarding disease effects or medical therapy understanding.
- Further research into patient education and psychological support for pediatric CF populations is warranted.
Abstract:
A health diary was administered for 28 consecutive days over 3 non-consecutive months to 53 children and adolescents with Cystic Fibrosis (age 11-17 years). Response rates were 96% for the first, 84% for the second and 58% for the third month. Ill health actions such as missing school or staying in bed, ranged from 0 to 21% of diary days and showed an apparent seasonal variation being highest in the month of May. Analysis of variance demonstrated significant association between health actions, use of additional medicines and disease severity although no such associations were found for worries and concerns and overall assessment of the day. Most were not very bothered by symptoms or complaints, the highest visual analogue score on a scale of 0-10 in a single patient was 2.4 for coughing. A striking finding was the disparity between perceived vulnerability and subsequent experience with predictions of common symptoms such as cough and shortness of breath scoring 4-5 times higher than actually experienced. These children and adolescents were coping very successfully with their disease although the disparity between perceived vulnerability and subsequent experience indicates some uncertainty about the effects of the disease and/or lack of understanding about medical therapy.