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Growing up with cystic fibrosis: achievement, life satisfaction, and mental health

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Abstract

Purpose

Significant improvements in survival of patients with cystic fibrosis lead clinicians and researchers to focus on how patients can be enabled to lead as normal a life as possible throughout their entire life span. The study aimed at analyzing the vocational and social achievement, life satisfaction, and psychological well-being of adolescents and adults with cystic fibrosis.

Methods

During a routine clinic visit, 670 German patients with cystic fibrosis (12–64 years, M = 23.1) completed questionnaires on their vocational and social achievement, life satisfaction, and symptoms of anxiety and depression. Cross-sectional analyses were applied across four age-groups (12–20 years, 21–30 years, 31–40 years, and 41 years and older).

Results

Most patients with cystic fibrosis reached employment and independence from their parents during adulthood. Life satisfaction was negatively associated with age, with the largest difference between the second and third life decade. A strong negative association of anxious and depressive symptoms with life satisfaction was found. Lung function was significantly positively related to life satisfaction, even though this association was less pronounced.

Conclusions

Most patients with cystic fibrosis achieve ordinary social and vocational development into adulthood. A favorable mental health status seems more important than pulmonary function to maintain a good satisfaction with life.

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Abbreviations

CF:

Cystic fibrosis

QoL:

Quality of life

LS:

Life satisfaction

IRB:

Institutional review board

FEV1 :

Forced expiratory volume in 1 s

FLZM:

Questions on Life Satisfaction (Fragebogen zur Lebenszufriedenheit)

HADS:

Hospital Anxiety and Depression Scale

ANOVA:

Analysis of variance

SPSS:

Statistical Package for the Social Sciences

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Acknowledgments

This work was funded by the Mukoviszidose Institut gGmbH, the research and development arm of the German Cystic Fibrosis Association Mukoviszidose e.V. The authors would like to thank all study centers and all patients who participated in the current study for generously giving their time and support. We also thank Paul Wenzlaff from the ZQM Hannover for his assistance with the analyses based on the registry data.

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Authors and Affiliations

  1. Department of Child and Adolescent Psychiatry/Psychotherapy, University Hospital Ulm, Steinhoevelstr. 5, 89075, Ulm, Germany

    Tanja Besier & Lutz Goldbeck

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  1. Tanja Besier
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  2. Lutz Goldbeck
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Correspondence to Tanja Besier.

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Besier, T., Goldbeck, L. Growing up with cystic fibrosis: achievement, life satisfaction, and mental health. Qual Life Res 21, 1829–1835 (2012). https://doi.org/10.1007/s11136-011-0096-0

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