Monash University researchers have conducted a review into the prevalence of depression and anxiety of people with cystic fibrosis, a life-limiting genetic disease associated with high levels of psychological burden.
The systematic review and meta-analysis also explored the mental health of carers of people with cystic fibrosis. Depression and anxiety was high across both people with cystic fibrosis and their carers, with the issue of poor mental health transcending across all age groups of people with cystic fibrosis.
The review found that anxiety in children with cystic fibrosis is nearly five times higher (26 per cent) than the general paediatric population, and depression in adults is at least three times higher (27 per cent). Carers of people with cystic fibrosis also had significantly higher rates of both depression and anxiety compared to the global prevalence of both illnesses.
However, the review - which only included studies where a psychometric tool (PT) to specifically assess depression and anxiety was used - also showed that the choice of PT significantly influenced prevalence, indicating a need for future studies to use the optimal PT for each cystic fibrosis population to allow appropriate interpretation and identify those most at risk.
The study's first author Monash Health pharmacist and PhD candidate at Monash's Centre for Medicine Use and Safety, Louise Lord, said: "Our review looked at 94 articles and over 18,000 people with cystic fibrosis worldwide, showing depression and anxiety to be consistently high across all age groups. However, sub-analysis revealed that the PT used to describe prevalence led to a number of gaps, such as a sparsity of information involving children under 12 with cystic fibrosis, as those in this age group were understudied."
PT's are tools used to assess various individual factors that may predict behaviours and outcomes in various circumstances, including diseases such as cystic fibrosis.
Ms Lord said that the study found that the optimal choice of PT is one that is validated in the cystic fibrosis population and which is recommended by the International Committee on Mental Health in Cystic Fibrosis consensus statements published in 2016.
"The review found that the choice of PT in each study impacted results substantially, emphasising the need for clinicians to be aware of the validity each tool has in the cystic fibrosis population, and in different age groups. For example, the tools that have been validated for depression or anxiety screening in people living with cystic fibrosis include the Patient Health Questionnaire for depression and Generalised Anxiety Disorder 7-item measure for anxiety," said Ms Lord.
"Whilst there were guidelines for those aged 12 and over with cystic fibrosis, the optimal choice of psychometric tool in those younger than this could not be determined, leading us to conclude that there is still much work to be done to help identify those most at risk, particularly for children under 12 who could be slipping through the gaps."
There are an estimated 3,500-4,000 people in Australia living with cystic fibrosis. Psychological burden, such as depression and anxiety, can result in poorer outcomes such as decreased lung function, more hospitalisatons and higher healthcare costs. The mental health of carers can also affect the outcomes of people with cystic fibrosis.
"New treatments, such as the recently Pharmaceutical Benefits Scheme (PBS) listed elexacaftor/tezacaftor/ivacaftor (Trikafta®), are allowing people with cystic fibrosis to live longer lives, so it is imperative that the quality of life is also optimised," said Ms Lord.
The review confirms the need for regular screening measures using appropriate psychometric tools. Future research in this area should help identify those at most risk as well as focussing on identifying the most appropriate tools for children under 12 years of age.
To read the full review, entitled Depression and anxiety prevalence in people with cystic fibrosis and their caregivers: a systematic review and meta-analysis
