Development of a cystic fibrosis weight management programme: protocol for a co-design study
Barrett, Joanne Topping, Anne Elizabeth Ntoumanis, Nikos Turner, Alice Margaret White, Helen Fenton, Sally Amelia May
Barrett, Joanne
Topping, Anne Elizabeth
Ntoumanis, Nikos
Turner, Alice Margaret
White, Helen
Fenton, Sally Amelia May
Abstract
Background: Since the recent introduction of highly effective modulator therapies (HEMT), adults with cystic fibrosis (CF) have experienced significant health improvements. However, HEMTs can also lead to weight gain, and over 30% of adults living with CF, are now overweight or obese. The English National Health Service digital Weight Management Programme (NHS digital WMP) is offered to adults with obesity to support weight loss. This programme may not meet the complex health needs of people living with CF and may not address the established diet and physical activity behaviours that may contribute to weight gain in this population. Methods This paper outlines the steps to co-develop a CF-specific weight management programme (CF WMP), designed to be delivered alongside an NHS digital WMP. The CF-specific programme will be developed in collaboration with people with CF who have overweight or obesity (PwCF ow/ob) and professional stakeholders, using the three phases of the Person Based Approach (PBA); planning, co-designing and optimising. Planning Mixed-methods research with PwCF ow/ob and CF health care professionals will identify the barriers and facilitators to healthy eating and physical activity experienced by PwCF ow/ob. This will inform the guiding principles to underpin the co-design of the CF WMP and how it will address the dietary and physical activity behavioural needs of PwCF ow/ob to ensure it is engaging, acceptable and motivating. Co-design: a series of participatory workshops with PwCF ow/ob and key stakeholders will use guiding principles to specify design objectives and corresponding intervention features. Optimising: think aloud interviews with PwCF ow/ob will gather feedback on the CF WMP, to iteratively refine the programme.
Discussion: The resulting CF WMP will extend the usability of an NHS digital WMP to adults with CF, to better ensure it meets their needs, which have changed since the introduction of HEMT.
Plain language summary
Background: Cystic Fibrosis (CF) is a condition people are born with. It causes lung issues, digestive problems, and a shorter life expectancy. Historically people with CF struggled to gain weight and followed high-calorie diets to improve health and survival. Since the introduction of highly effective modulator therapies (HEMT) such as Kaftrio ®, Kalydeco ®, and Symkevi ®, many have experienced overweight or obesity. They now require support to manage their weight management and prevent the development of health conditions such as heart disease, diabetes, and cancer.
What are we going to do ?: A CF-specific weight management programme will be co-designed with people living with CF and healthcare professionals to support people with CF and overweight or obesity to adopt healthier diets and become more active. It will be designed to be delivered alongside an existing NHS digital weight management programme.
Co-development process: It will be developed using the Person-Based Approach (PBA) to ensure it is practical, engaging and relevant to people with CF.
Planning: 20–30 people living with CF and overweight or obesity will record what they eat and wear a device to monitor their physical activity. They will be interviewed about what influences how they eat and how active they are. CF health care professionals will also be interviewed about their experience of advising patients to eat a healthy diet and be more active. These results will be used to decide on the content of the CF specific weight management programme.
Co-designing: People living with CF, health care professionals and weight management experts will then work together to design the programme.
Refining: Feedback from people with CF, will guide programme refinements before it is tested.
Patient and public involvement: People with CF will co-design the programme, shape its development and help share the results with the CF and healthcare professional communities.
MIDER Authors
Affiliations
University Hospitals Birmingham NHS Foundation Trust; University of Birmingham; University of Southern Denmark; Leeds Beckett University
Date
2026-02-20
Type
Article
Collections
Citation
Barrett J, Topping AE, Ntoumanis N, Turner AM, White H, Fenton SAM. Development of a Cystic Fibrosis Weight Management Programme: protocol for a co-design study. NIHR Open Res. 2026 Feb 20;6:7. doi: 10.3310/nihropenres.14190.2.