Electronic LungNet News Walk Training with Pedometers Can

Transcription

NOVEMBER 2013
“Living Well With a Lung Condition”
Official Newsletter of Lung Foundation Australia
Walk Training with Pedometers Can Benefit COPD Patients
Regina Leung, Senior Respiratory Physiotherapist, Concord Repatriation General Hospital, Sydney
Recent research, which was presented at an international
conference in America1 has shown that people with chronic
obstructive pulmonary disease (COPD) who walk less
than 5000 steps per day are almost twice as likely to
experience an exacerbation (flare up) as those who walk
5000 or more steps per day. This indicates how important
it is to keep active in order to avoid chest infections or
an exacerbation. It is well known that exercise training
improves exercise capacity and quality of life in people
with COPD. However, many people find it hard to keep
up with their exercise regimen when they are not being
supervised.
In the study, people with COPD were randomly allocated
into two exercise groups. Participants in both groups were
asked to undertake walk training in their community for
a 3 month period. One group was given a pedometer and
advised to walk 9000 steps a day and the other group was
advised to walk 30 minutes per day without being given a
pedometer.
The results of the study showed that people who walked
with the pedometer had a larger increase in daily
step counts than the group without the pedometer.
Furthermore, the pedometer group also showed a bigger
improvement in quality of life measures compared with
the group without the pedometer. Most importantly,
the hospital admission rates for people who were in the
pedometer group were significantly lower than the group
without the pedometer. Based on the result of this study,
the use of a pedometer enhanced the benefit of a walking
program in people with COPD which lead to lower hospital
admission rates and exacerbation rates.
Inaugural Australian Rare Lung
Disease Short Course: A great success
The Inaugural Rare Lung Disease Short Course, a joint
venture between the Thoracic Society of Australia and
New Zealand and Lung Foundation Australia was held
on Friday 9 and Saturday 10 August 2013 in Sydney.
The one and a half day Short Course focused on the
diagnosis, treatment and management of Interstitial
Lung Disease (ILD), presented the latest scientific
research and was designed to encourage an interactive,
multidisciplinary approach with a joint focus on adult and
paediatric health.
The event proved incredibly popular, selling out before
the close of early-bird registrations, demonstrating the
growing need for research and information about the
rarer lung conditions which do not always receive the
focus they should. The course featured presentations
from international Keynote Speaker, Professor Vincent
Cottin from the University of Lyon in France, as well as
the leading Australian specialists in ILD.
What is a pedometer?
A pedometer is a device that
measures the number of steps
you walk per day and how far
you have been walking.
What are the benefits of
using a pedometer?
A pedometer is easy-to-use and
inexpensive. All you need to do
is to clip it to the waist of your clothes or wear it on your
wrist. It is a good feedback and self-motivation tool to
keep you active.
How many steps are you supposed to walk a day?
In a healthy population, 10,000 steps per day is
recommended to maintain good health. However, this can
be difficult to achieve if you have lung problems. How
many steps you should walk per day depends on your
current activity level. It is important to set a realistic and
achievable goal to begin with and then gradually increase
the daily step counts as exercise progresses.
How to choose a good pedometer?
There are many types of pedometers on the market but
not all of them measure steps precisely. From experience,
a pedometer which costs around $20-$25 is usually
reasonably accurate and reliable.
Reference: (American Thoracic Society (ATS) 2013 International
Conference: Abstract A1360. Presented May 19, 2013)
Electronic LungNet News
Lung Foundation Australia is delighted to announce
that we have now developed an interactive electronic
version of LungNet News, which will be available for all
subsequent editions.
If you would prefer to receive LungNet News
electronically rather than getting a printed copy, please
let us know by emailing newsletter@lungfoundation.
com.au. If you know anyone else who would like to
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via the Lung Foundation’s website, http://www.
lungfoundation.com.au/lung-information/patientresources/lungnet-news-latest-edition/registerfor-e-lungnet-news/
Don’t worry, we will continue to publish LungNet News
quarterly in hard copy, so you can elect to receive it this
way if you don’t have an email address.
LungNet is an initiative of Lung Foundation Australia | Toll Free 1800 654 301
LungNet News | November 2013 | www.lungfoundation.com.au
Lung Foundation Australia Launches “Better Living with Your Lung
Disease” DVD Series and Regional Seminars
Melissa Ram, Project Manager, Self Management & Supportive & Palliative Care,
Lung Foundation Australia
Lung Foundation Australia was delighted to announce the
official launch in late August of Better Living with Your
Lung Disease, a 10 part self-management DVD series
and Regional Patient Seminar Program. Better Living With
your Lung Disease features topics which aim to educate
and assist anyone living with a lung disease to learn
skills to help them better manage their condition and its
symptoms. The newly released series has received very
positive feedback so far, with many people, both patients
and health professionals commenting on how interesting,
informative and helpful the topics are. They are excellent
resources to have when you feel as though you could be
managing your disease a little bit better and getting more
out of life. The titles included in the series are listed below:
• Managing Your Lung Disease
•
•
•
•
•
•
•
•
•
How Do your Lungs Work?
Managing Your Breathlessness
Managing Treatment Options
Studies have shown that the
regional areas of Australia
often have limited access to
health information, support,
and expert clinicians. The
national program of Regional
Patient Seminars where the
DVDs have been showcased,
aims to reduce this barrier by
bringing the health information
and clinical experts to these
areas. Lung Foundation
Australia is very excited about this new initiative as
many people in these regional areas are not aware of
what services are available. The Lung Foundation is in
the process of planning the upcoming 2014 seminars to
be held in Toowoomba, Darwin, Bundaberg, Townsville,
Mandurah, Mount Gambier, Campbell Town, Lismore,
Bendigo and Port Macquarie.
Please call 1800 654 301 to order your copy of the DVD,
or to register your interest for a seminar near you. You can
also access the DVDs online at http://www.lungfoundation.
com.au/lung-information/patient-resources/educationalresources/better-living-with-your-lung-disease-dvd-series/
Questions You Can Ask Your Health Professional
Who Is Your Healthcare Team?
Managing Your Fatigue and Energy Conservation
Better Living with Your Lung Disease is a two year funded
project through the Australian Government under the
Chronic Disease Prevention and Service Improvement
Fund.
Tips for Looking After Yourself and Your Disease
Benefits of Physical Activity and Ongoing Support
Supportive Care and End-of Life Issues
Farewell to Lung Foundation Friends
John Andrew Dow
Robert (Bob) Dalziel Lewis
18 August 1927 – 9 August 2013
16 October 1949 – 1 July 2013
A sad farewell to a true gentleman
and friend.
John Dow passed away on Friday
9 August 2013 at the Angliss
Hospital in Upper Ferntree Gully
and he will be greatly missed by
all who knew him. John had COPD
and was the leader of the Puffing Billies Patient Support
Group for six years, during which time he provided never
ending support and encouragement to other members
of the Support Group. He retired as Group Leader in
2011, but still enjoyed attending the monthly meetings.
John also enjoyed the support and care he received at
the weekly lung rehabilitation classes he attended at
the Angliss Hospital. He treasured those times, along
with the friendships he made with others having the
same health issues. John is survived by his wife Betty,
their children, Kris, Laraine, Trevor, Cathy and Randall,
grandchildren and great-grandchildren.
About the
LungNet News
Tribute provided by Veronica McDornan
(Group leader, “Puffing Billies”).
Publication dates:
February, May, August and November
Publisher and Editor:
PO Box 1949, Milton QLD 4064
Toll Free: 1800 654 301
Phone: 07 3251 3600
Fax: 07 3368 3564
Email: [email protected]
Website: www.lungfoundation.com.au
We report sad news for the
members of the West Lung
Support Group in Sydney who
have lost their much admired,
longstanding President and
member Bob Lewis.
Our deepest sympathies go to
his beloved wife Jo-Anne, also to
his children, their spouses and
families.
Bob was a tireless and dedicated
President of the West Lung Group
for many years. Steadfastly working through the ups
and downs of lung disease and more recently other
serious illness, Bob always found time, energy and
enthusiasm for the group.
He will be sorely missed but always remembered.
Platinum Partners:
Major Partners:
Disclaimer: The information contained in this newsletter is submitted from many different sources. The views expressed herein are not necessarily
those of the editor or Lung Foundation Australia. Medical information contained in this publication is intended to be used as a guide only, and not
as an authoritative statement. Please consult your doctor if you have questions relating to medical information contained in this newsletter. The
inclusion of advertising in this newsletter does not constitute specific endorsement of these products or services by Lung Foundation Australia.
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form by means of electronic,
mechanical, photocopying or otherwise without written permission from the publisher.
Cleaning and Caring for CPAP and other Positive Airway Pressure
Therapy Equipment
Many patients with acute and chronic lung problems use
positive airway therapies. Sometimes this is for the lung
problem itself (like chronic obstructive pulmonary disease
or cystic fibrosis) and sometimes for a separate problem
that also affects breathing (like obstructive sleep apnoea,
obesity or a respiratory muscle disorder).
Recently, there have been some concerns expressed about
the potential risk of the development of the legionella
bacterium in CPAP machines with humidifiers. However,
there should be no problem, as long as the water chamber
is cleaned and rinsed on a daily basis and refilled with clean
water. It is essential that the water is not allowed to stagnate.
Some of these therapies are designed to deliver
continuous positive airway pressure therapy (CPAP) and
others to deliver intermittent positive airway pressure.
The type used is tailored to the problem being treated.
If you have such a device then there are a few simple
maintenance rules to follow.
The other regular maintenance issue is to inspect the
machine inlet filter regularly. Surface dust can be removed
with a damp cloth. Some filters are washable. Otherwise,
the filter should be changed every six months, or more
regularly in dusty environments.
Masks, Straps and Tubing
Weekly cleaning of masks, straps and tubing is a
good idea, both for hygiene and to extend their life.
The components should be separated and the tubing
disconnected from the machine and humidifier beforehand.
Use mild soapy water, rinse and air dry. Hang the tubing
over a rail to aid this. Avoid over-warm water, harsh
detergents and direct sunlight when drying as these tend
to damage plastic and elastic straps.
Humidifiers
It is common to use humidifiers with positive airway
pressure therapies to moisten and condition the air being
delivered from the device. Some people do not need them
but they improve comfort for those that do. If you are
using a humidifier then it is important that you follow a
few basic hygiene rules. The water in the humidifier should
be changed daily. Empty the chamber in the morning and
rinse. Leave the chamber empty during the day and refill it
with fresh water in the evening before use. Dimineralised
or distilled water is best, to prevent mineral deposits
forming on the inside of the chamber and corrosion of
any metal parts. In addition to this daily routine, once
a week the chamber should be washed thoroughly with
warm soapy water before rinsing. Once a month, a soak in
diluted (1 in 10) white vinegar can be useful in helping to
remove lingering deposits, but these are not harmful.
Filters
The Machine
The pumps are designed to be robust. Look at the
manufacturer’s recommendations regarding maintenance.
In general, you should have years of trouble-free
operation. Preventative maintenance becomes an issue
with older machines and some manufacturers suggest a
routine check after 5 years of operation. Obviously any
malfunction (noisy operation or change) should be brought
to the attention of your supplier immediately.
Article contributed by: The Sleep Health Foundation
www.sleephealthfoundation.org.au | 02 8814 8655
Cancer Australia delivers new FREE online
lung cancer course for health professionals
Investigating the symptoms of lung cancer – a Qstream
course for GPs has been developed by Cancer Australia
with a multidisciplinary group of lung cancer experts
and provides evidence-based professional development
opportunities that are accredited by The Royal Australian
College of General Practitioners (12 Category 2
Continuing Professional Development points) and The
Australian College of Rural and Remote Medicine (30
Planned Reflective Development points).
For further information, visit http://cl-wedg.qstream.
com/wedgcollaboration/courses/3373-Investigating-thesymptoms-of-lung-cancer-A-Qstream-course-for-Gps
Tuffy’s Trek Update
In September, Chris Emery, Lung
Foundation Australia’s Director
of Operations, successfully
completed the Tuffy’s Kokoda
Track Challenge, a gruelling
96 kilometre trek, in honour of
Bundaberg lung cancer patient,
Peter (Tuffy) Tuffield. Tuffy’s son,
Daniel Tuffield, accompanied Chris
on this “unforgettable” adventure
and together they have raised
more than $11,000 for the Lung
Foundation’s national lung cancer
Chris and a “Fuzzy
program. Both men underwent 12
Wuzzy Angel”
weeks training to prepare for the
trek. “However, nothing can prepare you totally for the
relentless nature of the climbs and descents of the terrain,
the heat and very high humidity that just seems to suck the
energy out of your body”, Chris admitted.
INOGEN ONE G3
Chris’s trek highlights included the opportunity to meet one
the two surviving “Fuzzy Wuzzy Angels” who served the
Allied Forces in World War II; an emotional service held at
the Isurava Battle Site Memorial and a visit to the Bomana
War Cemetery in Port Moresby. Both Chris and Daniel were
presented with Awards at a celebratory dinner after the trek
– Chris receiving the Bruce Kingsbury VC Award for a trekker
who “demonstrates the attributes of the ANZAC Spirit” and
Daniel receiving the John Metson award for the person who
demonstrated endurance or courage on the track.
Congratulations to both men and the team from Executive
Excellence on a safe and successful Kokoda Track crossing.
It’s not too late to donate to the 2013 Tuffy’s Kokoda Track
Challenge – go to Chris’s page – http://www.everydayhero.
com.au/chris_emery or Daniel’s page http://www.
everydayhero.com.au/daniel_tuffield
Lungs in Action
Emma Gainer, Program Manager, Pulmonary Rehabilitation and
Lungs In Action, Lung Foundation Australia
A Recipe for Success… Wilston Windbags combine
a Support Group and Lungs in Action at Grange in
Brisbane
The Wilston Windbags was initially established in June
2010 as a monthly Patient Support Group with the aims of
providing member to member support especially in matters
relating to lung health; facilitating access to lung health
information through written materials as well as guest
speakers; and encouraging participation in social activities.
As the Group evolved, it became clear that the location
was ideal not only for Support Group meetings, but could
also house a weekly Lungs in Action exercise class. This
provides members who have recently completed pulmonary
rehabilitation the opportunity to engage in a regular
exercise program suitable to their needs.
The story of the Wilston Windbags exemplifies how the
combination of both a Support Group and an exercise class
in the same facility can increase cohesiveness, support and
provide longevity to a Group. Lung Foundation Australia
thanks those who have supported and continue to support
the Wilston Windbags, as well as everyone involved with
our network of Support Groups and Lungs in Action classes
around Australia. The following information is provided
by members of the Wilston Windbags and outlines some
of the activities in which the Group is involved and the
benefits gained.
Wilston Windbags Rock!
Queensland’s Wilston Windbags have one desire – to
make the most of every day. After completing pulmonary
rehabilitation at the local hospital a few years ago, a
group of graduating patients realised the benefits of
continuing to meet formally and regularly exercising. We
set up camp in the Wilston Scout Den in the Brisbane
suburb of Grange and come together every Wednesday
at 10.00am for exercise, with the Support Group meeting
on the first Wednesday of each month at 11.00am. The
Group welcomes new members on a regular basis, and
the exercise classes are also open to people with heart
failure who have completed rehabilitation. We were
recently blessed with a new Lungs in Action Instructor,
Rachel Collins, who provides us with a safe and supportive
environment to exercise and maintain our physical
function.
In our three years of existence, the Group has been
fortunate, through the teamwork and dedication of our
members, to obtain donations of equipment that has in
turn supported the success and longevity of our exercise
class. These items include portable oxygen concentrators,
an exercise bike and an exercise bench which enables us
to increase the variety in our exercise routine and keeps
everyone interested in attending. The Wilston Windbags’
third Annual General Meeting was held in September and
it is great to see that we still have smiling faces at each
meeting. The members are not obliged to be involved in
both components of the Group, but most happily agree to
rocking along to the music for a full hour of exercise.
For further information on Lungs in Action and to find your
nearest program or Support Group, call 1800 654 301, or
email [email protected].
World COPD Day 2013
Alarmingly, 1 in 7 Australians
over the age of 40 have COPD
and half of those people are
unaware they have this disease!
This year, on World COPD Day
– Wednesday 20 November Lung Foundation Australia will continue our challenge of
raising awareness about the prevalence, symptoms and
treatment of COPD through a series of community-based
events. We are encouraging and supporting groups to
engage in events, including the Catch your breath…walk
for COPD, community lung function screening events,
information stands and activities that engage participation
by members of the general public.
level of involvement from our primary care partners
who will be offering FREE lung function screening and
community education using the Piko6 hand held device.
Should you wish to register an event, please use the
link provided above. If you have an enquiry please email
Karen Wright at [email protected] or call
1800 654 301.
Emerald City Awareness Event
We are pleased to announce that an on-line registration
page has been developed for all groups wishing to
organise an event and we invite you to go to http://
worldcopdday.lungfoundation.com.au and follow the links
to register your event. Please indicate the nature of your
event, your resource requirements (t-shirts, posters,
brochures, balloons etc.) and your order will be filled and
dispatched. As in previous years, there will be a variety
of resources available at no charge and some items that
attract a small fee. An on-line payment facility (shop) has
been created offering both PayPal and credit card options.
This new web-based facility will also feature a Map Locator
where consumers can search for various events in their
local area. It will also incorporate a donation, fundraising
and photo gallery feature.
Lung Foundation Australia will be working in collaboration
with the Central Highlands Regional Council in Emerald,
Queensland to host a World COPD Day awareness event
on Tuesday 19 November. With the help of local Aboriginal
representative, Ms Sandie Parter and the Mayor Councillor
Peter Maguire, we will be coordinating an event to
raise awareness of COPD amongst the residents of this
region. In addition, we will be working with the local GPs,
pharmacists and Medicare Local employees to ensure they
are trained and equipped to offer FREE Piko6 screening
in the lead up to, on the day and as an ongoing primary
care service post the event. A Catch your breath…walk
for COPD will be held at 6.00pm and all local residents
will be invited to participate. The Mayor will undertake an
official welcome and launch the event by cutting a ribbon
and leading the walkers. Any funds raised from this event
will be channelled into the development of an educational
DVD featuring Sandie and focused on raising awareness
of COPD within the Indigenous communities in rural and
remote Australia.
As a result of the recent uptake of the COPD Practice
Nurse Online Training and the September launch of the
Pharmacy Online Training package, we anticipate a high
If you wish to participate or learn more about this
regional event, please email Karen Wright at
[email protected] or call 1800 654 301.
From the CEO’s Desk
Dear Readers,
Greetings from the CEO’s Desk
and welcome to the final edition of
LungNet News for 2013.
This has been an incredibly
productive year, with Lung
Foundation Australia expanding
its mission to make lung health a
priority for all. 2014 promises more
opportunities and growth as we advocate for all people
with lung disease.
A Year of Milestones
This year saw Lung Foundation Australia achieve many
of our strategic goals. We developed new and varied
programs such as the Inaugural Rare Lung Disease Short
Course, which attracted so much interest it sold out before
the close of early bird registration! We launched our
Better Living with Your Lung Disease program, with the
release of a 10-part DVD series to improve knowledge and
confidence about self-management for people living with a
chronic lung condition. Our Let’s Yarn About Lung Cancer
DVD (http://www.youtube.com/watch?v=x8MSYp_YykM)
helped put the spotlight on lung health in the Aboriginal
community.
Lung Health Awareness Month
November is Lung Health Awareness Month and I am sure
you will have heard about the variety of activities Lung
Foundation Australia is once again undertaking to promote
this important event. I want to take a moment to thank the
communities, patient groups, patients and their supporters
who will take part in vigils, community walks and other
promotional opportunities. To everyone who shares their
story with the local media or takes part in a school talk,
presents to their work colleagues or who simply chats with
a friend about the importance of lung health… thank you.
National Awareness Campaign
Next year will see the launch of a new national awareness
campaign encouraging people to “Check in with Your
Lungs” with support from the Australian Government
under the Chronic Disease Prevention and Service
Improvement Fund. Watch this space for more information
before the campaign kicks off in March next year.
ASX Thomson Reuters Charity Foundation Art
Union
This year’s Art Union will support the Lung Foundation’s
Information and Support Centre. This vital service is a
touchstone for our community of patients, families and
health professionals, providing support, information and
educational resources. For the first time, this year you
can buy your tickets online at http://www.lungfoundation.
com.au/lfa/7353-2/. Tickets can also be bought via our
Facebook page (www.facebook.com/lungfoundation).
New Staff
With all the work being planned, we welcome three new
staff members to our team. Damon Cavalchini has joined
our Marketing and Public
Relations team as the
Senior Manager – Lung
Health National Program
to look after the national
awareness campaign
as well as managing
our marketing, PR and
fundraising activities.
In July, we wished
our Marketing and PR
Coordinator, Bridget
Damon Cavalchini and
Dixon, all the best as
Laura Guthrie
she has left to pursue a
fantastic new opportunity and we welcomed Laura Guthrie
to the role in August. Laura will be looking after general
marketing and PR as well as events.
In October, we welcomed our new Lung Care Nurse,
Rina Waller who is based in the Information and Support
Centre. Rina works with the existing team members to
provide confidential telephone support, information and
advice to patients and their families, and she will also be
helping to develop new support programs and packages.
Season’s Greetings
As this is the last LungNet News for the year, on behalf
of all Lung Foundation Australia staff and the Board of
Directors, I wish our readers and their families all the
best for the festive season. We thank all our wonderful
volunteers, supporters, donors, and corporate partners
who have helped make 2013 such a successful year. Have
a joyful and safe festive season and a happy 2014.
Yours Aye
William
Darbishire
POC_AD_120x90mm_03_POC_ADS_120x90mm_01 26/08/13 11:36 AM Page
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of the Asbestos-Related Diseases Nurse Education
Pilot Program run by Lung Foundation Australia. The
workshop was led by Judy Rafferty, Lung Foundation
Australia’s Nurse Educator and the program included
visits to Royal Prince Alfred Hospital and presentations
from leading specialists in asbestos-related disease. It is
hoped that the nurses involved in the pilot program will
build on the knowledge gained from the online education
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Ask the Health Professional
The Ask the Health Professional section has been
introduced to give you the opportunity to post a question
to our expert panel. We have identified a panel of willing
health professionals to help us and we will publish two to
three of your questions and the answers from the relevant
panel member in each issue. We invite you to submit your
question to us, preferably by emailing
[email protected] or post it to
Lung Foundation Australia, PO Box 1949, Milton, Qld, 4064
and we will do our best to include it.
Does wearing a face mask help prevent against
picking up an infection like a cold or the flu?
What type of masks are recommended for
everyday use?
Wearing a mask may help in protecting you against
infection, but it is only as good as how you use it. How
many times have you watched a medical show and seen
the doctor operating with the mask over his mouth (or
even on his chin) but his nose is out there for all to see?
Obviously in this situation, the mask is useless. A mask
needs to be applied correctly and once again this is not
as simple as it sounds. During the Bird Flu scare, staff in
some hospitals were required to attend education sessions
to learn how to wear masks correctly. The mask has to
completely cover the mouth and nose with no gaps and
once on, the mask should not be touched or fiddled with. If
you sneeze into the mask and it becomes moist, it has lost
its protective capacity.
Remember, beards or even lack of dentures may interfere
with a good seal.
Masks may provide respiratory drop protection by
preventing the virus from entering the nose or mouth.
However, this still leaves the eyes open to contact and it
is worth considering how often we touch our face and eyes.
Remember, all masks are good for one use only; the
length of time they can be worn does vary on the type of
mask and would be shown on the packaging. To remove
and discard your mask, untie the mask and by using the
side straps place it directly in the bin: immediately wash
your hands or use an alcoholic hand rub.
All good research has shown that our most consistent
and reliable methods of prevention centre on GOOD
HAND HYGIENE. It is our hands that touch contaminated
surfaces and then go to our face, nose, mouth and eyes.
Being constantly vigilant around hand hygiene is the best
protection.
Good hand hygiene can be achieved
by either using an alcoholic hand rub
or washing your hands. If washing
your hands in public, it is best to use liquid hand wash.
Some hand rub can deteriorate if left in the car, so it is
best to carry it in your handbag. Don’t forget to also check
the expiry date.
Always wash your hands before, touching food, food
preparation, eating or even putting away after shopping.
Remember, it is other people’s germs you want to protect
against and these can be picked up in any situation.
It may sound obvious, but it is important to wash your
hands properly. The Australian Online College has
developed free hand washing posters as an aid to improving
food safety and hygiene practices and to show people the
correct hand washing technique. They can be downloaded
free from their website http://australianonlinecollege.com.
au/free-hand-washing-posters.html
Why it is that bacteria can still live in the lungs
even if you have had antibiotics for an infection?
The airways normally have bacteria (and other
microorganisms) lining them, in the same way that there
are bacteria on our skin and in our gut. Usually, there is
a range of ‘normal’ bacteria (or ‘bugs’) in the airway, and
this represents a normal, healthy population of bugs.
In some people with airway diseases that are associated
with damage to, or abnormal function of, the airways,
‘non-normal’ bugs can get into the airways and grow there.
Sometimes this happens for only a short period and then
either the bugs are killed by the body’s immune system
or by antibiotics (this is ‘infection’ which is then treated
and passes). Sometimes however, these bugs become
established in the airways and neither the immune system
nor antibiotics will remove the bugs, they then will remain
there (this is called ‘colonisation’) – in this circumstance,
antibiotics reduce the ‘amount’ or number of bugs (thereby
making the patient feel better), but will not get rid of them
altogether as the bugs have now become entrenched in the
airways.
There is, of course, a difference between viral and bacterial
infections. Antibiotics will not affect viruses at all, while
they will kill bacteria (provided they are the right antibiotic
for the particular bacteria).
Australian COPD Patient Advocate Group (formerly COPD National Patient
Taskforce) Report
Megan Rushton, Chair
It is with much pleasure that I report some recent changes
the COPD Patient ‘Taskforce’ has embraced with a view
to our members playing an even greater supporting role
as patient advocates for all Australians who are affected
by COPD. The first change has been to our group’s name
and we are now called the Australian COPD Patient
Advocate Group (C-PAG). We feel that this name will
not only more closely reflect the role we seek to play
as patient advocates for COPD, but also emphasise our
national status as a Group as well as identifying Australia
as a participant in COPD advocacy on the world stage. I
have previously expressed my personal belief that many
Australians, in general, remain unfamiliar with the term
COPD, what it is and what help is available for patients, so
hopefully our new name and new look will ultimately help
us turn this situation around. We will also be placing more
emphasis on our role as patient advocates by seeking to
more directly connect with Patient Support Groups across
Australia. We hope to achieve this via a dedicated COPD
Patient Advocate page on the Lung Foundation’s website,
thereby providing a more tangible presence with photos
and brief biographies on each of our members, as well
as other useful information; possibly set up a Facebook
page to interact with COPD patients, families and carers
directly; invite a ‘guest’ Support Group Leader or member
to participate in one of our meetings to talk about their
particular Group, discuss any problems they face within
their Group or their location and in turn, share our
knowledge and provide direct support to them. Hopefully,
by doing this we can work towards achieving an ongoing
and more meaningful liaison. Another exciting initiative
we have adopted is to seek the appointment of two
Aboriginal/Torres Strait Islander COPD Patient Advocates
so that they can provide the Group with input into the
specific needs of Indigenous COPD patients.
In other news, we are delighted to welcome some new
representatives to our Group: Annie Buckley in the
Northern Territory; Dean Sherry in South Australia and
Ian Venamore and Ross Lloyd in Queensland. No doubt,
fresh new faces will accompany some fresh new ideas and
I am hopeful that soon we will be able to welcome new
members for Victoria and Tasmania as well.
Finally, winter has officially ended which means we
can hopefully farewell colds and flu for several months
while now facing the “Sneezin’ Season” and the specific
challenges that come for many COPD patients in spring.
So until next time, I hope you can all stay well and
take care!
Respiratory Research: How you can use published research to make
the best decisions about your healthcare
What is the “Cochrane Collaboration”?
The Cochrane Collaboration is a not-for-profit,
independent, global network of over 30,000 people who
collaborate, mostly online from wherever they are based
across the world, to help healthcare practitioners, policymakers and patients make well-informed decisions about
healthcare and promote evidence-based decision-making
in healthcare.
Members of the Cochrane Collaboration prepare and
update systematic reviews on the effects of treatments and
make them accessible online in The Cochrane Library. All
Australians have had access to The Cochrane Library as a
result of funding by the Australian Government since 2002.
In August 2012, the National Health and Medical Research
Council (NHMRC) renewed Australia’s national licence for a
further five years.
What is a systematic review?
A systematic review tries to help you find answers to
questions about a treatment or medicine – such as “Will
one treatment work better than another?” or “Will it do
more harm than good?” All the existing primary research
on a topic that meets certain criteria is searched for and
collated, and then assessed using stringent guidelines, to
establish whether or not there is conclusive evidence about
a specific treatment.
With its headquarters in London, the Cochrane Airways
Group produces systematic reviews on the effects
of treatments in lung diseases: chronic obstructive
pulmonary disease (COPD), asthma, obstructive sleep
apnoea, bronchiectasis, interstitial lung disease, idiopathic
pulmonary fibrosis, pulmonary sarcoidosis, pulmonary
hypertension and chronic cough.
However, led by a network of researchers in Australia,
reviewers based here have made major contributions to
the work of the Airways Group since 2002, assisting with
the publication of 69 new or updated systematic reviews.
In Australia, 171 authors contributed to 126 reviews and
protocols of the Cochrane Airways Group over those 12
years.
Why is there an Australian Satellite of the
Cochrane Airways Group?
In order to continue and develop the work of producing
and publishing systematic reviews, at the start of 2013,
the Cochrane Collaboration recognised the network
formally and inaugurated the Australian Satellite of the
Cochrane Airways Group. The initial editorial members
of the Satellite are Prof Haydn Walters, A/Prof Richard
Wood-Baker, Prof Michael Hensley, Prof Peter Gibson,
A/Prof Brian Smith, Prof Anne Chang, A/Prof Ian Yang,
and Dr Julia Walters and A/Prof Anne Holland (Satellite
coordinators). The administrative base of the Satellite is
in the NHMRC Centre of Research Excellence in Chronic
Respiratory Disease “Breathe Well” at the University of
Tasmania in Hobart.
The primary function of the Satellite is to support
Australian authors of Cochrane Reviews and optimise
review outputs. The Satellite will be seeking funding for
scholarships to assist new systematic reviewers.
How the Cochrane Collaboration can help patients
find the information to make decisions about their
healthcare
The internet has transformed the way people think about
and search for health information to help make important
decisions. However, navigating the wealth of information
that is available, and discerning which information is
reliable can be very difficult. In order to make informed
decisions, consumers, patients, families, and carers need
to have access to research which is of high quality and
from independent sources; this knowledge transfer can be
empowering, helping people to understand and use research.
A Cochrane Consumer Network exists and is made up
of people committed to the importance of consumer
participation in informed healthcare decision-making
processes. If you go online, you can find summaries of the
best evidence on healthcare via their website at http://
consumers.cochrane.org/. Every Cochrane review has
feedback from a consumer before it is published, to ensure
that the final review will meet consumer needs.
Consumer training for lung disease patients:
Where and how to find the best evidence on
healthcare
As a new initiative, the Australian Satellite is planning
to conduct training for “consumers”, that is people with
or affected by lung diseases, on where to find the best
evidence on healthcare, to understand what a systematic
review is and what the findings mean, and how they as
consumers can help set priorities for healthcare.
Look out for Satellite members talking at Lung Health
Patient Education Days around Australia in 2014. We
hope that those who attend might be interested in giving
feedback on new Cochrane reviews before they are
published in the future.
Please contact the Satellite coordinator, Dr Julia Walters if
you would like more information.
[email protected] | Telephone 03 6226 4798 or
visit the website http://airways.cochrane.org/australiansatellite-cochrane-airways-group
Diary Dates 2013
Regional Patient Seminar Bendigo
31 October
World Conference on Lung Cancer, Sydney 27-30 October
Regional Patient Seminar, Port Macquarie12 November
Lung Health Awareness Month
November
Lung Cancer Awareness Month
November
International Lung Cancer Awareness Day17 November
World COPD Day
20 November
Have Your Say on Chronic Illness – An Invitation to Participate
The Chronic Illness Project is currently seeking
participants for a phone survey. The information you
provide will help us to better understand how people
manage their ongoing health conditions and what health
care providers such as pharmacists can do to assist
them. Participate in this project and have your say to
improve health and pharmacy services in Australia.
The study involves completing a 30 minute phone
survey with participants reimbursed with a $50
supermarket voucher for their time.
Do you have:
• One or more ongoing health conditions? Or
• Do you care for or support others who have an
ongoing health condition?
This project is funded by the Australian Government
Department of Health and Ageing as part of the Fifth
Pharmacy Agreement Research and Development
Program managed by The Pharmacy Guild of Australia.
Do you live in the following areas:
• Logan/Beaudesert area, QLD
• Mt Isa and North West Region, QLD
• Northern Rivers, NSW
• Greater Perth area, WA
We are recruiting NOW so please register your interest
on our website www.chronicillnessproject.com.au or call
us on 1800 600 687.
Find us on facebook:
www.facebook.com/ChronicIllnessProject
The Kylie Johnston Lung Cancer Network
(KJLCN) Update
Kerrie Callaghan, Project Manager KJLCN - Lung Cancer,
Karratha fashion event is a big hit
In July, Karratha
retiree and lung
cancer survivor,
Sandy Sampson,
hosted a fabulous
“Air and Care”
Fashion event at
Centro Karratha
shopping centre in
Western Australia
and raised more
than $16,500
for lung cancer
patient support and
Sandy and her supporters take to the
research. “It was
stage in their little black dresses
an awesome night
and beyond my wildest dreams,” Sandy said. “We had
more than 170 guests and an army of 40 people working
behind the scenes to help make the event a night to
remember. It was a very successful social and fundraising
event for our remote community in the Pilbara area of
Western Australia”. Sandy and her supporters send out
a big thank you to local businesses, Swan Hill Cleaning,
Mermaid Marine, Federation Centre Karratha, Retravision,
Site Pics and Wrap Creations for their generous support
and donations.
Shine a Light on Lung Cancer vigils go viral!
The 2013 Shine a Light on Lung Cancer awareness vigils
will have an extra dimension to them this year as we will
launch a Shine a Light Facebook app. to enable supporters
around the country to share their story. The app. is
very easy to use and we encourage you to share your
experience of lung cancer on our Facebook page as well as
sharing it with your community of family and friends.
Go to Lung Foundation Australia’s Facebook page
www.facebook.com/lungfoundation for further information.
For vigil details, go to http://www.lungfoundation.com.au/
get-involved/events/shine-a-light-on-lung-cancer
Lung cancer survivor welcomes a
miracle baby boy!
On 2 September, Canberra
lung cancer advocate and local
primary school teacher, Victoria
Taber and her husband Luke,
welcomed a healthy baby boy,
Archie, much to the relief of
Victoria’s dedicated medical
team and community of family
and friends. In 2009, Victoria
was diagnosed with lung cancer
after having a chest X-ray as
part of her preparations to take
up a teacher exchange position
in Canada. Victoria’s treatment
included a pneumonectomy,
chemotherapy and radiotherapy. Since that time, both
Victoria and Luke have generously taken up advocacy roles
on behalf of the Lung Foundation and they have a firm
commitment to raising awareness about the indiscriminate
nature of lung cancer. Victoria believes “lung cancer
doesn’t discriminate so neither should we”. Victoria and
Luke are overjoyed with Archie’s safe arrival and this new
stage in their family life. Everyone at Lung Foundation
Australia wishes them the best of happiness and good
health.
Australian Idiopathic Pulmonary Fibrosis (IPF) Registry
Sacha Macansh, Project Manager, Australian IPF Registry, Lung Foundation Australia
The Australian Idiopathic Pulmonary Fibrosis (IPF) Registry was
recently profiled at the Rare Lung Diseases Short Course that
is mentioned elsewhere in this edition. With more than 280
participants now contributing to the Registry, it is becoming a
valuable tool to help researchers understand more about this
complex disease. Two analytical papers were presented as posters.
The Registry aims to enroll all Australians with IPF so that the information collected can help researchers to learn more
about this serious disorder. If you have Idiopathic Pulmonary Fibrosis please ask your respiratory physician about
the Registry during your next visit. Health care providers please contact the Coordinator in your State to inform
them of your IPF patients who are interested in joining the Registry. To find the Coordinator in your State please call
Sacha Macansh on 02 9515 3996 or email [email protected] or visit the Lung Foundation website
http://www.lungfoundation.com.au/professional-resources/registries/australian-ipf-registry/#coord
IPF Clinical drug trials in Australia
Apart from creating a unique research platform the Australian IPF Registry also aims to improve recruitment to clinical
drug trials. A number of clinical trials are currently being or have recently been undertaken in Australia.
Study
Therapeutic agent
Company
Trial Phase
Progress
ASCEND
Pirfenidone
InterMune
Phase III
Recruitment complete
BIBF 1120
Nintedanib
Boehringer Ingelheim
Phase III
Recruitment complete
NCT01629667
Tralokinumab
MedImmune
Phase II
Ongoing recruitment
NCT01769196
Simtuzumab
Gilead
Phase II
Ongoing recruitment
NCT01872689
Lebrikizumab
Roche
Phase II
Recruitment to commence latter
half of 2013
Table 1. Clinical drug trials for IPF in Australia
For further information on these trials please speak to your respiratory physician.

Electronic LungNet News Walk Training with Pedometers Can

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