The LWWCF Journey
With the rapid changes in the treatment landscape and increasing life expectancy,1-3 supporting people living with CF as patients, carers and family to Live Well has never been more of a priority. Adequate information and support are required to optimise physical, psychological and social health and wellbeing, as well as maximise engagement with the requirements of CF health care.
Due to increasing complexity in the way health care is delivered, the need to be innovative is evident. Ensuring that new supports meet the identified need, avoid duplication and are actually effective is also crucial to maximise efficiency, uptake and impact. This was recognised by Vertex Pharmaceuticals who, in 2022, partnered with a medical education agency (The Med Collective) to ask the questions: “what does it mean to Live Well with CF in this rapidly changing landscape?” and “what is needed to support those with CF to Live Well?”
To address these questions in a meaningful way, a Steering Group was convened comprising of patient and carer consumer experts as well as specialist multidisciplinary clinicians and cross-sector representatives from across Australia. A rapid, experiential, exploratory, co-design methodology was used to determine what it means to Live Well with CF, identify available supports, and determine what is needed to complement existing clinical care and resources. The group met over a two-month period, both face-to-face (via video conference) and through an online engagement platform, to share their expertise, identify unmet needs and determine solutions.
The outcomes were phenomenal. In a short space of time, a consensus definition and vision for LWWCF was determined.
All people living with CF as patients, carers, family and friends, should be able to “live well with CF”. This means having the agency and sense of control, resilience and confidence to live the life you want. To live a life with CF, not a life defined by CF. It means being empowered by access to appropriate resources and supports to live the life you want to live.
Four strategic pillars were identified as required to achieve this vision. These include maximising holistic biopsychosocial Care, Connection, Communication, and Collaboration across the CF community. Read more about the LWWCF Strategic framework here.
In addition, a number of priorities were identified to immediately support those with CF to Live Well, in alignment with the LWWCF mission to enable access to up-to-date, useful, and quality information, resources and supports, to foster physical, psychological and social health and wellbeing, and empower those living with CF to “live well” on their own terms.
The Steering Group recognised that a multitude of excellent information, resources and supports for people living with CF already exist, from a vast range of sources; however, individual and systemic barriers impacting access to information, resources and support were recognised. One challenge for those living with CF as well as for their healthcare teams is being able to find relevant, up-to-date and quality information quickly when needed. Barriers were also identified in the availability of, and access to appropriate resources and support for particular groups, in particular, for carers, siblings, partners and offspring of people with CF. Rather than creating new materials or duplicating existing resources, the LWWCF Steering Group identified the need for the LWWCF Directory to ensure that existing high quality, relevant, useful information, resources and supports are readily accessible for those living with CF and their healthcare providers.
The need for targeted resources, with information and advice about what it means to Live Well with CF, was also recognised. This has led to the development of the LWWCF Insights resources that are specifically aimed at supporting people to maximise their self-belief and capabilities to Live Well. This is an ongoing area of work as we collaborate with the CF community to identify and address other unmet information and support needs.
The need for improved support and education for healthcare professionals was also identified by the Steering Group. A Living Well with CF healthcare professional education program is currently being developed in collaboration with clinicians to ensure healthcare teams from all CF clinics in Australia are well positioned to support people with CF, carers and families to Live Well with CF. This educational program will be available later in 2023 – more information coming soon. Join the LWWCF Health Professional Mailing List for updates about this program.
The need to foster collaboration to optimise care and support those with CF to Live Well is clear. The outcomes listed so far are just the beginning! The work of the LWWCF initiative is ongoing as we strive to meet the changing needs of those living with CF as patients, carers, and family, as well as responding to the evolving care and support requirements by CF clinicians. Effective partnership between consumers, clinicians, academics and the greater CF community is needed to ensure we provide a dynamic program of support that continues to empower those living with CF to live their best life.
Partner With Us
The LWWCF initiative draws on lived experience and multidisciplinary, cross-sector collaboration – recognising that to empower those with CF to Live Well, we need to work together.
If you are a person living with CF as a patient, caregiver or family member, a CF health professional, or you represent a health, tertiary or community organisation and you are interested joining the Living Well with CF community, please complete our Partner contact form. We look forward to hearing from you!
References: 1. Smith BA, et al. Pediatr Pulmonol. 2016;51(S44):S71-S78. 2. Havermans T and Staab D. Thorax. 2016;71(1):1-2. 3. Balfour-Lynn IM and King JA. Pediatr Respir Rev. 2022. 2022;42:3-8.