News in Brief: ILD lung transplant success; Self-management strategies for breathlessness; Australians’ misunderstanding of palliative care

ILD lung transplant success

‘Liberal utilisation’ of extended-criteria and DCD (donation after circulatory-determined death) donor lungs, has allowed many ILD patients waitlisted for transplant at a Melbourne hospital to reach post transplant with excellent early and midterm outcomes, an audit of ILD lung transplant outcomes reveals.

Clinicians at the Department of Respiratory Medicine, Alfred Hospital say transplanting at-risk patients sooner rather than later, with any reasonable compatible donor lung offer, can likely contribute to lowering waitlist mortality, and may also provide benefits for improved posttransplant survival.

Among the 187 patients listed, 82% underwent LTx. Within 90 days of listing 51% of patients had been transplanted, while at 12 months after listing only 6% remained actively listed.

Extended-criteria and DCD donor lungs were used in 58% of transplants at the centre over the study period. Investigators reported ‘excellent’ 90- day, 1-, 3- and 5-year retransplant free survival outcomes (97%, 92%, 81% and 69%) among the 153 recipients who had received the donor lungs.

The overall waitlist mortality inclusive of delistings was 16% – a rate investigators say is among the lowest longitudinally reported.

The outcome was achieved despite  a  a lower combined deceased and DCD donor rate in Australia, of around 22 donations per-million-population (pmp), compared to the United States (~40 pmp) and many parts of Europe as well as a 4-fold increase in the number of ILD patients listed and undergoing lung transplant at the hospital over the study period.

Blood-group O, shorter height, hospitalisation at time of waitlisting and reduced 6-MWT distance were independent predictors of waitlist mortality. Investigators said patients with ILD who demonstrate these features may benefit from higher priority listing.

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Self-management strategies taught by breathlessness services

Most patients with COPD who attended a breathlessness service to learn non pharmacological techniques for self management  continued to use at least some strategies six months later but almost a third of participants struggled to maintain anxiety and psychological coping strategies, a Sydney services reports.

The eight-week program run by The Westmead Breathlessness Service (WBS) trains patients with COPD to self-manage chronic breathlessness. With multidisciplinary input and home visits the 32 patients involved in the intervention were able to sustain one or more breathlessness self-management strategies six months later including breathing techniques (n=22; 69%), the hand-held fan (n=17; 53%), planning/pacing and exercise (n=14 for each; 44%) and strategic use of a four-wheeled walker (n=8; 25%).

But many patients reported problems with psychological coping particularly with persevering over the long-term in the face of relentless breathlessness and impacts on daily life, the challenge of maintaining behaviour change over time and coping with relapse. Many participants also had poor recall of the program.

Investigators say these participants included patients whose health status remained unchanged and those whose status had declined.

They say research is needed on ways to improve resilience to set-backs and uptake of psychological interventions, as well as to understand and address the implications of poor recall for self-management.

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Survey highlights limited community understanding of palliative care

A national campaign set to challenge public perceptions about end-of-life care will launch this week  after new survey data reveals many Australians don’t fully understand it’s benefits or who can access the service. 

The campaign, called Palliative Care, its more than you think, was developed by Palliative Care Australia (PCA) after survey findings revealed that many Australians don’t understand the broader meaning of palliative care and are reluctant to engage in conversations on death and dying.

According to the survey fewer than four out of ten Australians (39%) correctly understand that palliative care can be requested when a person is first diagnosed with a terminal, chronic or degenerative illness. And only three out of ten Australians surveyed correctly understand that GPs are among those who can provide palliative care.

Meanwhile 54% of respondents believe that talking about their preferences for the end of their life with their family will upset them and 48% find the subject of death and planning for the end of their life too difficult to talk about (48%).

PCA Chair Professor Meera Agar said the campaign will challenge perceptions that palliative care is a ‘last resort’.

“The campaign is aimed at informing, empowering and encouraging Australians living with a life-limiting illness to engage with their health care professionals early in their diagnosis, so as to live as well as possible for as long as possible … it can be provided alongside curative treatments, or when those treatments have ended,” Professor Agar said.

Stage one of the campaign will see it roll out nationally on television, in print and online from this week.

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