RESEARCH PAPER
Disease specific knowledge about cystic fibrosis, patient education and counselling in Poland
 
More details
Hide details
1
Departhament of Pediatric Gastroenterology and Metabolic Diseases, Poland
 
 
Corresponding author
Beata Klincewicz   

Departhament of Pediatric Gastroenterology and Metabolic Diseases, Poland
 
 
Ann Agric Environ Med. 2014;21(2):420-424
 
KEYWORDS
ABSTRACT
Introduction and objective:
The presented study assesses levels of specific knowledge of the disease among cystic fibrosis (CF) patients and their families, and evaluates the effectiveness of a targeted, disease specific education programme.

Material and Methods:
A cross-sectional survey among 462 families with a CF child evaluated their knowledge of the disease. A one year follow up survey among 200 families assessed the effectiveness of an educational programme developed to correct gaps, errors and misconceptions identified in the previously administered survey. Self-administered, comprehensive, 5-domains, 45-item multiple-choice CF Disease Knowledge Questionnaire (CFDKQ) was anonymously completed by 462 subjects.

Results:
228 respondents were male (49%), 234 female (51%). The level of disease-specific knowledge in the age groups 0–6 and 7–10 years, was significantly higher than in 11–14 and 15–18 years of age groups (p<0.005). General medical and Genetics/Reproduction knowledge was low in all patients. Significant predictors of patient and parental knowledge were age and domicile. Patients and parents rely heavily on doctors for information about CF (77%). The follow-up survey (CFDKQ) emphasized that special education programmes significantly improved levels of disease specific knowledge (p<0.0001).

Conclusions:
If left uncorrected, the misconceptions, gaps and errors in CF knowledge identified in the presented study could result in inadvertent non-adherence to treatment, and impact on the progression and outcome of the disease. Secondly, the results demonstrate the effectiveness of targeted, disease specific information in improving disease knowledge of CF patients and their families, and highlights the value and need for the development of educational programmes for chronically ill patients and their families

 
REFERENCES (19)
1.
Boat TF, Welsh MJ, Beaudet AL.Cystic fibrosis, In: Scriver CR, Beaudet AL, Sly WS, Vaile D (eds.). The Metabolic basis of inherited disease, vol.26. 6th ed. New York: McGraw-Hill, 1989.p.49–80.
 
2.
De Braekeleer M, Daigneault J.Spatial distribution of the DeltaF508 mutation of cystic fibrosis. A review. Hum Biol. 1992; 64: 167–174.
 
3.
Hames A, Beesley J, Nelson R. cystic fibrosis: what do patients know, and what else would they like to know? Respire Med. 1991; 85: 389–392.
 
4.
Henley LD, Hill ID. Errors, gaps, and misconceptions in the diseaserelated knowledge of cystic fibrosis patients and their families. Pediatrics 1990; 85: 1008–1014.
 
5.
Henley LD, Hill ID. Global and specific disease-related information needs of cystic fibrosis patients and their families. Pediatrics 1990; 85: 1015–1021.
 
6.
Nolan T, Desmond K, Herlich R, Hardy S. Knowledge of cystic fibrosis in patients and their parents. Pediatrics 1986; 77: 229–235.
 
7.
Conway SP, Pond MN, Watson T, Hamnett T. Knowledge of adult patients with cystic fibrosis about their illness. Thorax. 1996; 51: 34–38.
 
8.
Perrin EC, Gerrity S. There’s demon in your belly: children’s understanding of illness. Pediatrics. 1981; 67: 841–849.
 
9.
De Braekeleer M, Bellis G, Rault G, Allard C, Milot M, Simard F. Disease knowledge in a high-risk population for cystic fibrosis. Patient Education and Counselling 2001; 43: 263–268.
 
10.
McCabe H. Cystic Fibrosis-what nutritional knowledge do patients have? J Human Nutrition and Dietetics. 1996; 9: 479–486.
 
11.
Barbara Hazard Munro and Ellis Batten Page: Statistical Methods for Health Care Research. J.B. Lippincott Company, Philadelphia, 2000.
 
12.
Gibson PG, Powell H, Coughlan J, et al. Self-management education and regular practitioner review for adults with asthma. Cochrane Database Syst Rev. 2003; (1)CD001117.
 
13.
Tsujikawa T, Satoh J, Katsuhiro U, Takashi I, et al. Clinical importance of n-3 fatty acid-rich diet and nutritional education for maintenance of remission in Crohn’s disease. J Gastroenterol. 2000; 35: 99–104.
 
14.
Kendrick C, Culling J, Oakhill T, Mott M. Children’s understanding of their illness and its treatment with paediatric oncology unit. Assoc Ch Psychol Psychiat News, 1986; 82: 16–20.
 
15.
McCollum AT, Gibson LE. Family adaptation to the child with cystic fibrosis. J Pediatr. 1970; 77: 571–578.
 
16.
Meyers A, Dolan TF, Mueller D. Compliance and self-medication in cystic fibrosis. Am J Dis Child. 1975; 129: 1011–1013.
 
17.
Ievers CE, Brown RT, Drotar D, Caplan D, Pishevar BS, Lambert RG. Knowledge of Physician prescriptions and adherence to treatment among children with cystic fibrosis and their mothers. Developmental and Behavioural Pediatrics 1999; 20(5): 335–343.
 
18.
De Wet B, Cywes S. The birth of a child with a congenital anomaly, part III: response of parents to diagnosis. S Afr Med J. 1985; 67: 370–373.
 
19.
Hazle L, Evans DA. Virtual Patient Education Days: A Web-based educational tool. (abstract). 28th European Cystic Fibrosis Conference; 2005; Jun 22–25; Hersonissos, Crete, Greece.
 
eISSN:1898-2263
ISSN:1232-1966
Journals System - logo
Scroll to top