Friday, 14 September 2018

Australians living with lymphoma are surviving more but experiencing a fear of relapse, anxiety, depression and isolation according to a recent report.

And despite survival rates jumping from just 52 per cent in the early 1980s to 76 per cent today, those diagnosed in regional Australia are still battling access to specialist treatment and financial barriers, according to the Global Lymphoma Coalition’s 2018 global patient survey, Australian report.

Lymphoma is one of the most commonly diagnosed cancers in Australia with one in 36 Australians expected to be diagnosed with a form of the disease by their 85^th birthday.

The Leukaemia Foundation said the outcomes of the Global Lymphoma Coalition’s report mirror the Leukaemia Foundation’s recent stakeholder research which confirms continued support for Australians living with lymphoma is crucial to improve their access to treatment and well-being after treatment.

“Fatigue and the fear of relapse are understandably very real to those living with blood cancer and it’s important that these people access organisations like the Leukaemia Foundation for support during this time,” a Leukaemia Foundation spokesperson said.

“The Leukaemia Foundation offers regional families access to free accommodation close to treatment centres in most capital cities and can also provide transport to medical appointments,” they said.

“It’s these types of services that can really help support those people living with the disease, and help alleviate the added stress of commuting through city streets to appointments.”

“We know people living in regional and rural areas of Australia really appreciate this type of support – but we also offer the same transport service to metropolitan blood cancer patients. This all adds to improving the well-being of patients,” he added.

In the past decade alone, the Leukaemia Foundation has provided more than 500,000 nights of accommodation to these families and its transport service has travelled more than 10 million kilometres.

The Global Lymphoma Coalition Report also identified having access to disease specific information via websites as positively influencing their feelings of confidence in determining the trustworthiness of information about their health condition and treatment choices, and supported their communication with their doctor.

The Leukaemia Foundation spokesperson said the Leukaemia Foundation is acutely aware of the need for people living with a blood cancer to have access to credible and trusted information which empowers people to make informed decisions about treatment options and accessing new therapies.

“We are working to deliver a new information platform for all people living with blood cancer which is a one-stop-shop for information and resources.”

This year, World Lymphoma Day is on Saturday, September 15 and the global theme is Small Things Build Confidence. For more information, visit www.lymphomacoalition.org.

To find out more about lymphoma and the Leukaemia Foundation.

 

Snapshot of Lymphoma in Australia

• It is estimated that Lymphoma will remain the 6th most commonly diagnosed cancer in 2017 with over17 people newly diagnosed every day (6, 232 per year).
• In 2017, it is estimated that the risk of an individual being diagnosed with lymphoma by their 85th birthday will be 1 in 36 (1 in 30 males and 1 in 45 females). While the mortality rates of an individual dying from lymphoma by their 85th birthday will be 1 in 146 (1 in 114 males and 1 in 196 females).
• In 2009–2013, individuals diagnosed with lymphoma had a 76% chance of surviving for 5 years (75% for males and 77% for females) compared to their counterparts in the general Australian population. Prior to that, between 1984–1988 and 2009–2013, 5-year relative survival from lymphoma improved from 52% to 76%.
• According the Lymphoma Coalition’s 2018 Global Patient Survey – Australian report,
• Overall, fatigue, changes in sleep patterns and trouble concentrating were the most frequently reported physical conditions.
• The most commonly reported medical conditions were neutropenia and tingling during treatment, and numbness and tingling were the most frequent medical issues reported after treatment.
• Changes in relationships with loved ones, friends or co-workers/social life and anxiety were the most commonly reported psychosocial issues during treatment. Fear of relapse was very common after treatment.
• As a result of their lymphoma, most respondents in Australia have experienced changes in their lifestyle and almost half have experienced changes in their independence.
• Fear of relapse was experienced by respondents during treatment with reported levels peaking significantly after treatment. Some respondents even reported it at 8+ years after treatment. Fear of relapse was associated with feelings of anxiety, depression and isolation, which were not often discussed with the doctor.
• Respondent’s reports of fatigue peaked immediately following treatment, as well as 3-5 years and even 8+ years after treatment. Fatigue affected respondents’ independence, but more so their lifestyle, with general activity suffering a large impact.
• Respondents in Australia commonly reported that financials constituted a barrier to treatment, followed by access to treatment centre/prohibitive travel. There were barriers found to be associated with respondents’ area of residence. For example, specialty physician available locally was identified as a barrier more frequently by respondents in rural areas compared to urban and suburban areas.