Adults with cystic fibrosis : mental health and patient experiences of the CF treatment

Abstract

Background: Cystic fibrosis (CF) is an autosomal recessive inherited, life shortening multi organ disease most typically affecting the respiratory system and the gastrointestinal tract. In recent decades progresses in the management of CF has led to an increasing proportion of adults with CF. Sweden has a large proportion of adults living with CF, however there is no systematic evaluation conducted, and thus a lack of knowledge regarding their mental health.

Aim: The overall aim with this thesis was to investigate the mental health among adults with CF, and to explore adult CF patients experiences of the CF treatment applied in Sweden.

Methods and Results: Paper I, a cross-sectional study. Comparisons of Hospital Anxiety and Depression Scale (HADS) data from 129 Swedish adult CF patients, and from published studies in Belgian, British and German adult CF-patients with corresponding general population data showed no elevated risks for anxiety or depression among the adults with CF in a binary logistic analysis. ANOVA showed a slightly elevated level of anxiety in the Swedish CF-sample, but this effect was only seen among the women. Paper II, a cross-sectional study in 68 adults. Structural Equational Modelling (SEM) showed that those with severer cftr mutation classes with increasing age and a parallel deterioration of somatic health get poorer psychological wellbeing. Exercise had a positive effect on psychological wellbeing, but only if it also had a positive effect on somatic health. Paper III, a longitudinal study in 68 adults. Latent Growth Modelling (LGM) showed that anxiety, especially when combined with some level of depression, was associated with a faster decline in lung function over time. Paper IV, a qualitative study. Semi-structured interviews were conducted with 12 ‘middle-aged’ (32-55 years) adults. Inductive content analysis resulted in three themes: ‘Prioritize and manage health – a life condition’, ‘Aspiration for and possibility to a ‘normal life’ and ‘The CF center as a partner in the life condition’.

Conclusion: This thesis has contributed with an increased understanding of the mental health aspects of CF for adults. As a group, there is no elevated risk for impairment in mental health with regard to anxiety and depression in Swedish adults with CF. However, individuals with genetically more severe CF with age, and deteriorated health, get vulnerable for poor psychological wellbeing, and also those who are performing a high amount of physical exercise without maintaining their somatic health. Over time anxiety, when combined with some level of depression, seems to be associated with a faster decline in lung function. These mental health aspects can be deeper understood from the perspective that prioritization of health is (literally) a life condition for the adult with CF, and that the aspiration for and possibility for a ‘normal life’ can result in stressful conflicts, especially when health is deteriorating. In the coping with the life condition the CF center is seen a partner. Clinical implications should focus on the patients vulnerable for poorer mental health, and on including the patients’ perspective through person centered care (PCC) and a health psychological approach in the CF-care. Future research in the area of mental health in CF should broaden the perspective and focus also on the wellbeing aspects of mental health, and would benefit from having a more clearly defined health psychological framework thus including the study of behavioural patterns that underlie disease development and health.