19 November 2020

Last year we developed a survey to better understand the experiences of adults with CF who’d received a lung-transplant. Our aim was to find out their views on the health system, access to relevant support and information, ongoing care needs and any challenges post-lung transplant. We also asked for feedback on CFNZ services and support.

We sent out the lung-transplant recipient survey to 34 people throughout New Zealand. Seventeen adults complete the survey; 9 adults from the Auckland area (under the Auckland, Counties-Manukau and Waitemata DHB), 2 adults from Taranaki DHB and 1 adult each from Waikato DHB, Midcentral DHB, Capital and Coast DHB, Hutt Valley DHB, Canterbury DHB and South Canterbury DHB area.

The time since transplant varied; some people had received their lung-transplant within the past 2 years, 5 years or 10 years, and others were more than 10-years post-transplant.

Key findings

Three key themes emerged from the 11-question survey.

Overall, people’s experiences were good

• People were positive, or at least pragmatic, about their lung-transplant experience.
• More than half reported no issues with care and support from the health sector or CFNZ.
• Financial support from CFNZ, such as transplant grants and Breath4CF, was appreciated.
• Some people reported they were treated differently post-transplant and lacked access to CF related support.
• More individualised care plans are needed to ensure concerns are acknowledged. 

Communication and information could be improved

• There was sometimes a disconnect and lack of communication between different health professionals and district health boards.
• Ongoing communication and information from CFNZ and other health professionals is needed long-term, not just in the early months post-transplant.
• More information before transplant was identified as an area for improvement.
• Recommendations about how and where to connect with other people post-transplant would be helpful.

More specialist support needed

• All respondents had support from a transplant team and 10 people received ongoing support from their GP.
• Some respondents felt they were forgotten by their CF team post-transplant and would benefit from a combined CF and transplant clinic.
• Access to other specialists, including dermatologists and psychologists, and support with bowel, diabetes, fertility, liver and other health concerns was an issue for some people.

Recommendations for CFNZ and CF health professionals
 

From the feedback and comments, researchers recommended:

• Strengthening communication and connection with people post lung-transplant is a priority.
• A focus on improving post-transplant information and how to connect with appropriate health services.
• Ensuring everyone is treated as an individual and continues to have a personal connection with CF services.

Integrating these recommendations
 

We’re delighted the Auckland adult CF team has used the survey findings to set up a new annual review clinic for adults post-lung transplant. 

"Commencing from the start of the 2021 calendar year, the Auckland Adult Cystic Fibrosis Multidisciplinary team (CF-MDT) would like to offer post lung transplant CF patients an annual review in the CF clinic. These will be held at the CF clinic and involve by all members of the all the CF-MDT team. Those with CF related diabetes (CFRD) will be offered review in a CFRD clinic to allow for review by the diabetes team in addition to the CF-MDT. CF clinic is held on a Tuesday afternoon.

The provision of CF care following lung transplant remains a challenge across the world. The lung transplant and CF teams recognise the complexity of care and the burden of treatment and we collectively would like to offer more comprehensive on-going care that caters for transplant, CF and diabetes. Our plan is to offer this to CF patients who had their CF care provided through the Auckland CF clinic prior to lung transplant.

The CF and diabetes teams are looking forward to rolling out this initiative and have started the “ground work” to enable this to occur. See you some time next year!” 

- Dr. Mark O’Carroll, Adult Respiratory Specialist at Auckland City Hospital

Our Clinical Advisory Panel has considered the findings of the survey and appreciated the insights given. 

We will continue to use the survey results to improve post-transplant care. We recognise the need for more information and will work with people with CF and clinicians to see how we can achieve this. 

Thank you to all the adults who completed our survey. Your feedback and comments help us to improve our services and advocate for improved post-lung transplant care.

Take part in an international survey to determine best practice models of post-lung transplant CF care.

The Model of Post-Transplant Care Transplant Recipients and Loved Ones survey has been developed in partnership with the Cystic Fibrosis Foundation and an international group of CF and transplant clinicians.

The survey will be used to develop an international white paper to provide best practices around shared models of post-lung transplant CF care. Feedback is sought from clinicians, people with CF and families.

We encourage you to complete the survey, which takes approximately 10 minutes to complete, and will help inform international best practice.

The survey closes on 30 November 2020. Please note, when you begin the survey it says it closes on 16 November, but the closing date has been extended.

Complete the survey