Cystic Fibrosis Questionnaire (CFQ); Cystic Fibrosis Questionnaire Revised (CFQ-R)

Name of Questionnaire

Cystic Fibrosis Questionnaire (CFQ); Cystic Fibrosis Questionnaire Revised (CFQ-R)

Description

Disease-specific instrument designed to measure impact on overall health, daily life, perceived well-being and symptoms. Developed specifically for use in patients with a diagnosis of cystic fibrosis.  Three versions of the instrument have been developed: one for adults and adolescents 14 years of age and older (CFQ Teen/Adult); two for assessing children ages 6-13 years, one to be completed by the child and one to be completed by parent (CFQ Child and CFQ-Parent respectively).

Developer

B Henry, P Aussage, C Grosskopf, JM Goehrs, R Launois and the French CFQOL Study Group

Developer of English CFQ and CFQ-R

Dr. Alexandra Quittner
Department of Psychology
University of Miami
Coral Gables, FL 33124-0751
Phone 305-284-2814
Fax: 305-284-3402
E-mail: aquittner@miami.edu

Address

Pierre Aussage
MDS Pharma Services Health Economics SA
6 avenue de la Cristallerie
92316 Sevres Cedex
France

E-Mail

pierre.aussage@mdsps.com

Cost & Availability

Available from the authors.  American English Translation available from A.L. Quittner.

Administration

Self-administered, proxy administered, and interview administered for young children (1)(2)(3)

Time to complete

CFQ14+: 15 minutes.  CFQ Child P: 15 minutes. CFQ Child C: 15 minutes.

Number or items in CFQ English translation

CFQ Teen/Adult: 48.  CFQ Parent: 44. CFQ Child 6-13: 35

Number of items in CFQ-R

CFQ-R Teen/Adult: 50.  CFQ-R Parent: 44.  CFQ-R Child: 35.

Domains & Categories (#)

3 modules: health related quality of life (HRQoL), symptoms and overall health perception. 9 HRQoL domains in the CFQ Teen/Adult, 8 domains in the CFQ Parent, and 7 domains in the CFQ Child.  3 symptom scales (only 2 symptom scales for the CFQ Child C) and 1 overall health perception scale.

Name of categories/domains CFQ

9 quality of life domains: Physical Functioning, Vitality, Emotional state, Social limitations, Role Limitations/School Performance, Embarrassment, Body Image, Eating Disturbances, Treatment Constraints.  3 symptom scales: Respiratory, Digestive, Weight. 1 health perception scale: Health Status (present/evolution).

Name of categories/domains CFQ-R

9 Quality of life domains:
Physical, role/school, vitality, emotion, social, body image, eating, treatment burden, health perceptions.
3 symptom scales: 
Weight, respiratory, and digestion.

Scaling of items

5 distinct 4-point Likert scales (e.g., always/often/ sometime/never)

Scoring

Scores for each HRQoL domain; after recoding, each item is summed to generate a domain score and standardized. Scores range from 0 to 100, with higher scores indicating better health.
CD-Rom Program available for scoring the CFQ-R.

Reliability

a. Test-retest/reproducibility: Reported (1)(2)
b. Internal consistency: Reported (1)(2)(3)

Validity

Significant correlations with subscales in the Nottingham Health Profile (NHP) (Physical, Energy, Emotional state). (1) Significant correlation with FEV1 and BMI. Significant correlations between CFQ Child P and CFQ Child C. (3)  Differentiates between disease categories (based on Shwachman-FVC or FEV1- BMI). (1)(2)

Responsiveness

Reported (1); Based on clinician judgment of global clinical change, a moderate change was a standardized effect size of 0.50 units and an important change was a standardized effect size of 0.80 units evaluating pre- and post-treatment for CF exacerbation. (1)

Research use

Reported (1)(2)(3)(4)(6), including clinical trial (5)

Clinical use

Not reported.

Languages

Original: French
Translations: American English (3,4), German (2), Dutch (7), Portuguese
On going translation Spanish, Italian, Greek, Hebrew, Turkish.

References

1. Henry B, Aussage P, Grosskopf C, Goehrs JM. Development of the Cystic Fibrosis Questionnaire (CFQ) for assessing quality of life in pediatric and adult patients. Qual Life Res. 2003 Feb;12(1):63-76.

2. Wenninger K, Aussage P, Wahn U, Staab D; German Cystic Fibrosis Questionnaire study group. The revised German Cystic Fibrosis Questionnaire: validation of a disease-specific health-related quality of life instrument. Qual Life Res. 2003 Feb;12(1):77-85.

3. Modi AC, Quittner AL. Validation of a disease-specific measure of health-related quality of life for children with cystic fibrosis. J Pediatr Psychol. 2003 Dec;28(8):535-45.

4. Quittner AL, Sweeny S, Watrous M, Munzenberger P, Bearss K, Gibson Nitza A, Fisher LA, Henry B. Translation and linguistic validation of a disease-specific quality of life measure for cystic fibrosis. J Pediatr Psychol. 2000 Sep;25(6):403-14.

5. Saiman L, Marshall BC, Mayer-Hamblett N, Burns JL, Quittner AL, Cibene DA, Coquillette S, Fieberg AY, Accurso FJ, Campbell PW 3rd; Macrolide Study Group.  Azithromycin in patients with cystic fibrosis chronically infected with Pseudomonas aeruginosa: a randomized controlled trial. JAMA. 2003 Oct 1;290(13):1749-56.

6. Wenninger K, Weiss C, Wahn U, Staab D. Body image in cystic fibrosis – development of a brief diagnostic scale. J Behav Med 2003;26:81-94.

7.      Klijn, P.H., van Stel, H.F, Quittner, A.L, van der Net, J., Doeleman, W., van der Schans, C.P, van der Ent, C.K. Validation of the dutch cystic fibrosis questionnaire (CFQ) in adolescents and adults. J Cyst Fibros. 2004 Mar;3(1):29-36.

Date of information

April 2002