A deep dive into the future of CF care: Highlights from our MDT conference

Themed around the future of CF care, the conference covered a broad range of topics, including growing older with CF, the future of the CF workforce, and how we can ensure no-one is left behind in the era of modulator therapies, which not everyone can benefit from.

A powerful opening plenary, delivered by an adult with cystic fibrosis and a parent of a child with cystic fibrosis, set the tone of the day, ensuring their lived experiences – and hopes for the future of care from people affected by CF – were at the forefront of everyone’s minds.

Growing older with CF

The day featured a series of workshops on topical issues. The CF population includes more adults than children, and a workshop on growing older with CF explored physical aspects of ageing including the menopause, frailty, and complications such as cancer. 

An adult with CF shared their experience of having to care for both young children and ageing parents, while also looking after their own health – something that more adults with CF may experience. Psychological and social aspects of ageing also featured, with teams sharing best practice on supporting their patients with financial planning and employment. An underlying theme was the need to ensure both quality and length of life for people with CF. 

Gastro-intestinal (GI) symptoms and CF

Many people with CF experience gastro-intestinal (GI) issues such as bloating, with relief of GI symptoms the third most important research priority identified through the Trust’s James Lind Alliance priority setting partnership. However, access to GI expertise in CF teams is variable. The GI workshop summarised how the gut can be affected in CF, including potential links to the ‘CF legacy diet’ (high in fat and calories), and explored how teams can support their patients experiencing GI issues, such as providing a holistic approach to management of gut problems, and considering coeliac screening for those with GI symptoms. 

Staying active, eating well

Diet and exercise guidance has changed considerably in recent years, particularly with modulators and the move towards advice tailored to individuals. An engaging workshop explored the current context, evolution and aims of diet and exercise guidance, and the training needs of CF teams, particularly when lacking exercise specialists. 

Participants discussed whether exercise could replace airways clearance, a hot topic with almost half of adults with CF thought to favour exercise over airways clearance therapy. Ideas were shared on how to make exercise more appealing, and how everyday activities such as household tasks or play, can count as exercise.

Pain and musculoskeletal issues 

Pain is experienced by many people with cystic fibrosis, with many adults reporting it as their most troublesome symptom.¹ A workshop on pain and musculoskeletal (MSK) issues explored the causes of pain and its impact, and strategies to treat it. Screening to understand the type of pain is important, together with treatment plans that provide not only pain relief medication, but also consider physical therapy and address the psychological impact of pain. The workshop concluded that treatment of pain is important to improve quality of life and manage its impact on day to day life and areas such as ability to exercise.

CF diabetes

Screening methods, starting treatment and possible complications were explored in a workshop on CF diabetes, which affects over a third of people with CF aged 16 and over². Diagnosis of a second long-term condition can be challenging, and the importance of long-term psychological and social support was highlighted. With increasing use of technology in CF treatment, there was also discussion on the ethics of prescribing continuous glucose monitors (CGMs), which may be linked to mobile phones, for children with CF.

A joined up approach to CF care

A stimulating panel discussion in the afternoon, which included representation from both traditional and emerging roles in CF, sought views on how CF teams may need to work differently as the needs of people with CF evolve. The lively discussion included many audience suggestions, including working with non-CF specialists, educating GPs about CF, and – a key theme – ensuring the views of people with CF and their families inform any changes. 

Leaving nobody behind 

A thought-provoking closing plenary highlighted the great strides that have been made in recent years, including the development of modulators to correct the underlying cause of CF, as well as research into alternative treatments, such as genetic therapies, that could help those not able to benefit from modulators. The need to protect health through early interventions and better treatment of infection and inflammation was addressed. To close, the plenary speaker stressed the value of promoting an active, healthy lifestyle, including regular health screening, to prevent new illnesses developing as people with CF grow older.

The conference audience included a broad range of disciplines in CF, with representation both from traditional MDT roles as well as emerging roles in CF, and non-CF disciplines. Attendees ranged from those new to CF, to those with decades of experience, and the day demonstrated the passion and commitment of the whole CF community in the ongoing drive to improve CF care. 

These learnings from the day will also help Cystic Fibrosis Trust collaborate with CF teams and enhance its information and support services to ensure a life unlimited for everyone affected by CF. 

We look forward to bringing everyone together again for our next clinical conference in 2027.

References:

1. Addressing pain in people living with cystic fibrosis: Cystic fibrosis foundation evidence-informed guidelines - Journal of Cystic Fibrosis
2. UK CF Registry Annual Data Report 2023. UK Cystic Fibrosis Registry - 2023 Annual Data Report