Hepatitis C Post Treatment

[Guest guest]

Hepatitis C Post Treatment

The issue of post-treatmentsupport is getting moreattention from state hepatitisorganisations and research bodies.Dr Max Hopwood, at the NationalCentre for HIV Social Research(NCHSR), has undertaken aqualitative study of hep C treatmentoutcomes for individuals. Thestudy intends to identify someof the issues which arise forpeople on finishing treatment.

Increasingly, some clinics, such asthe Central Coast Health ServiceLiver Clinic, offer ongoing supportafter treatment has ended. HelenBlacklaws, a CNC at the Clinic, andDr Hopwood have shared some oftheir findings.

Most people understandably expectthat finishing hep C treatment willbe one of the happiest times of theirlife, especially if they have clearedthe virus. However, the end oftreatment does not always mean theend of side-effects or symptoms ofliver illness; many people continueto feel ill for weeks or even months.Unfortunately, formal relationshipswith hep C treatment health careworkers can lapse on the day thattreatment ends.

Why is there a lack of post-treatmentsupport?

Unsurprisingly, funding is a major obstacleto post-treatment support (Blacklaws 2009;Hopwood 2009).

The current model is set up tohelp as many people as possible onto treatment and successfully through it.

It assumes that oncetreatment ends – whether hep C is cleared or not – the job is done, at least for now.

Of course, many health care workers have a strong sense

of duty of care and encourage their patients to seek follow-up

support, but it can be difficult to administer this without a formalprogram.

Treatment centres are often unableto offer such support; they need to concentratetheir resources on those undergoing treatment.Dr Hopwood found that some people feel oncethey have finished treatment their clinic wantsnothing more to do with them. This may be afalse perception, created by the caseload of aclinic, but the outcome is the same – no supportfor those who need it.

Dr Hopwood noticed that there have beenmany studies about the effects of interferon onpeople undergoing treatment, but there is verylittle publicly available information about posttreatmentillness, and almost nothing aboutpossible long-term effects.

His study found anecdotal evidence that a small number ofpeople experience long-term symptoms such as“brain fogâ€; however, until this is formally studiedand quantified, it is unlikely to be of interest tofunding bodies.

Who needs post-treatment support?

Some people experience feelings of illness aftertreatment that are quite different from those theyhad during treatment. For example, some peoplemay have no depression while taking interferon,but experience it once treatment has ended(Hopwood 2009). This can be confusing andfrightening, and it may not be clear whether it iscaused by the interferon, or by something else.Whatever the cause, having someone to talk withand provide advice would help.

People who have not cleared hep C may feeldown after treatment ends. Add to this someongoing side-effects and the thought that noone cares about their health any more, and theycan feel very alone. Emphasising the positivesof treatment – that their liver has had a restfor a period, and that they may be less likelyto develop liver problems in the future – canhelp. Access to support at this time would helppeople adjust to their situation, and to look tofuture possibilities such as retrying treatment orparticipating in treatment trials (Hopwood 2009).

For those who clear hep C, the time afterfinishing treatment can be just as confusing. Theyexpect to feel wonderful and optimistic, andtheir families and friends may expect this too.

Not feeling this way can cause guilt and stress(Hopwood 2009). Being told before treatmentstarted – perhaps more than a year ago – thatyou may feel unwell for a period after treatment,may not prepare you for the disappointment oflingering illness (Blacklaws 2009). Having thesupport of health professionals who understandwhat you are going through would help a lot.

Adjusting to life after treatment

It is generally accepted that people who have undergone long-term treatments may experience feelings of disconnection once the appointments and support services end. This is a separate issue to ongoing side-effects from treatment, but could be addressed in post-treatment support.

There are already support programs in place, such as thosefor cancer survivors; Dr Hopwood suggests thatthese could provide a good model for post-hep Ctreatment support.

Of course, some people want to put the experiencebehind them, and are eager to escape the treatmentroutine (Hopwood 2009). For this reason, theformal aspect of any follow-up treatment shouldnot be presented as a compulsory part of treatment,but as an option for those that feel they need it(Blacklaws 2009).

How could post-treatment support beprovided?

People undergoing treatment at the CentralCoast Health Service Liver Clinic are given aninformation sheet when they are nearing the end oftreatment. This summarises what they can expectto experience, and what they can do to helpthemselves feel better. Helen Blacklaws says thatthere are additional support services for those whowant them: “ We also have our support group whichis open to people who have completed therapy.â€The clinic follows-up with three- and six-monthappointments. In the meantime, people areencouraged to visit or call if they need to talk.Helen says that few do; people don’t want to feellike they are making a nuisance of themselves, andthey know how busy staff are. By the time of thethree- and six-month appointments, many peoplehave passed the worst of the side-effects by copingon their own; they may appreciate some extracontact during this

time.

“This could be done by way of an interim visitbetween finishing treatment and the three-monthpost visit,†suggested Helen. This would help peopleto feel connected and allow them to deal with anyconcerns as they occur.

Such follow-up is excellent for the people whoattend those clinics, but a formalised post-treatmentprogram across the board would help more peoplemore effectively (Hopwood 2009). It could alsoprovide more consistent support, with healthprofessionals working together to ensure that allaspects are covered, from diet and exercise tomanaging side-effects. Some people also havefinancial issues at this time; financial assistanceduring the post-treatment period could take somepressure off.

Telling your GP that you have recentlyended treatment and giving them thecontact details of your treatment CNCcan help keep track of issues, and allowa coordinated approach to any ongoingproblems.â€

How could people be better supported withcurrent resources?

For some people, their GP can be a good source ofsupport and information. Telling your GP that youhave recently ended treatment and giving themthe contact details of your treatment CNC canhelp keep track of issues, and allow a coordinatedapproach to any ongoing problems.Another simple but effective way people can getsupport is to ask for it! As Helen suggested, yourtreatment centre may be able to provide the supportyou need, or refer you to someone that can. Forsome people, just knowing that support is availableif they need it is enough.As with all aspects of health, knowledge andunderstanding are key factors. Max Hopwoodand Helen Blacklaws agree that part of making aninformed decision is understanding that side effectsand feelings of illness may continue post-treatment,and that there is currently little formal support forthis. This

may not affect someone’s decision to starttreatment, but it will help prepare them for thetreatment journey.Part of that entire journey is the post-treatmentperiod; incorporating it into the treatment programwould help people successfully complete treatment,and get back to their normal lives sooner.•

Rigg is a freelance health writer whowrites for The Hep C Review: adrian.rigg@...The booklet, Moving on after treatment,available from the Hep C Helpline, providesgood information and advice about life aftertreatment.

The Hep C Helpline and the peersupport service Hep Connect offer support to allpeople affected by hep C, including those whohave completed treatment.

http://www.hepc.org.au/documents/articles/HepCpostTreatmentIllness-220KB.pdf

http://Hepatitis Cnewdrugs.blogspot.com/2010/03/hepatitis-c-post-treatment.html