Medical updates

Cochrane Researchers need your help

Where would you look for information about the best treatments for your disease? One place is the Cochrane Library - an electronic database on CD ROM (available in health libraries and an increasing number of public libraries) and on the internet. It contains systematic reviews of clinical trials in many branches of medicine, including gynaecological cancer. Funded by the NHS, the Cochrane Gynaecological Cancer Review Group has its editorial base in Oxford. Four people work there, but the majority of people who contribute to the work of the group do so on a voluntary basis and come from many different countries.

Unlike most traditional medical reviews, Cochrane systematic reviews are based on all available evidence (extensive searching of medical journals and electronic databases is carried out by the Cochrane Collaboration). They are kept up to date with results of published and sometimes unpublished trials as they are discovered and use scientific methods designed to reduce the risk of bias.

The Cochrane Collaboration is committed to making reviews accessible not only to health professionals but also to patients, their relatives and carers. This is why we like to have non-professionals with an interest in the topic to comment on the reviews during the editorial process, and to help the authors extract the information of greatest interest to patients.

Any treatment has benefits and risks, and it is these that need to be balanced by both patient and clinician when deciding on the most suitable treatment. Ideally, treatment choices need to be made by both parties using the best available evidence but it cannot be assumed that the clinician's view will be the same as the patient's. For example, a professional may be interested simply in how many more patients he/she will cure with a new treatment. The patient, on the other hand, may well want to know whether the new treatment has more side effects than the standard one. Sometimes patients are not fully aware of all they need to know about a treatment. How many women, for example, ask questions about the effects of treatment on sexual function when the initial treatment for a life-threatening disease is being decided on? Yet, six months to a year later, once they have been 'cured' of their cancer, this could be an extremely important aspect of rebuilding their life. Therefore it is important that people with experience of gynaecological cancer (patients two years or more after treatment or a close relative) have an input into Cochrane reviews.

Sadly, we cannot pretend that the trials we look at have the answers to all our questions. However, by drawing attention to the lack of information in trial reports we can help to ensure that future trials will be better designed to answer questions important to patients.

At the editorial base of the Gynaecological Cancer Review Group we would like your help in two ways. Firstly, if you feel you could read an author's plans for his/her review and offer suggestions based on your own experiences as to how to make it more relevant to a patients' needs, we would like to hear from you. Secondly, if you yourself have taken part in a clinical trial and believe it has not been published, please let us know.

Chemotherapy-related fatigue

The most commonly reported side effect of chemotherapy is fatigue. It has been reported that 80-90% of people receiving cytotoxic agents experience fatigue. It also seems to be cumulative with repeated chemotherapy courses.

The symptom of fatigue is a very important problem. Women with potential curative cancer have skipped or withdrawn from treatment because of fatigue. Fatigue levels peak about 7-10 days after chemotherapy and then return to a baseline level just before the next cycle is due. Factors associated with chemotherapy fatigue include drug interaction; concurrent medical conditions such angina, diabetes or asthma, age, length of illness and appetite.

So what is fatigue ?
It is overwhelming lack of energy and an inability to maintain usual routines.

It has been described by many as a decline in physical and mental ability to carry out activities of everyday living. Fatigue affects all people differently and can have many different signs: for example, lethargy, weakness, lack of energy, exhaustion, decreased motivation and interest, irritability, decreased attention, impaired concentration and perception, limited activity, restricted physical and mental activities.

Causes of fatigue
Too much rest as well as too little rest contributes to increased feelings of fatigue. So too does too little activity as well as too much activity.

Your body may take more energy from food as a result of the demands of cancer, leaving you fatigued. Loss of appetite due to treatment such as chemotherapy may mean you have much less energy in reserve than usual.

Side effects of chemotherapy can cause fatigue, like anaemia and sickness. Other symptoms such as pain and breathlessness are also common causes of fatigue.

How to manage fatigue - coping strategies

Sleep

• Facilitate rest and sleep by minimising symptoms that interfere with sleep such as pain, nausea and vomiting
• Sleep just long enough. Curtailing the amount of time in bed helps you feel refreshed and avoids fragmented and shallow sleep
• Ensure that the environment is conducive to sleep, e.g. room temperature, lighting, noise and interruption
• Avoid stimulants such as cola, caffeine, and chocolate
• Limit alcohol consumption near bedtime as it causes fragmented sleep
• Exercise regularly if you can - a steady amount of exercise may help deepen sleep in the long term
• Have a snack at bedtime - hunger may disturb sleep. Warm milk or a hot drink seems to help some people sleep better.

Exercise

• It is important to exercise. Studies have found that exercise may have a preventive and therapeutic effect on many of the symptoms of chemotherapy-induced fatigue
• Exercise should be light and regular. Walking has been shown to decrease fatigue as well as nausea and vomiting and improve sleep in most people
• Drink plenty of fluids before during and after exercising
• Establish how much you can do before you become tired
• Keep a record of your activities to share with your doctor and/or nurse, so they can monitor your progress

Diet

• Try to eat little and often have small snacks as opposed to three main meals per day
• Drink plenty of fluids
• If your taste changes, try new foods, or eat the foods that taste best to you
• Prepare extra meals on days when you feel like cooking and are not so tired
• Ask your doctor or nurse to refer you to a dietician for advice
• Take advantage of the times when your appetite is best
• Chemotherapy can cause changes in appetite and taste. Strict mouth care should be adhered to in order to prevent, infection and mouth ulceration

Relaxation
Managing fatigue also includes managing stress. Stress uses up energy and may make you feel more fatigued. Therefore it is important to try and control your stress or anxiety levels. This is not an easy task, especially when it involves three or four weekly visits to hospital to have your chemo. Waiting around can be extremely stressful.

The following suggestions may help you to relax:

• Talk to others about anything that is worrying you. Access your clinical nurse specialist for suggestions on how to combat stress. Often a lot of hospitals offer complementary therapies such as massage and or reflexology.
• Try distraction techniques which will take your mind off what is worrying you, for example, reading, listening to music or relaxation tapes can help divert your thoughts
• Most importantly avoid stressful situations if possible

Planning

• One of the most important points to make about combating fatigue is to plan activities according to when you feel up to them. One of the best ways to establish when you are at your peak is to keep a diary
• Use a diary to keep note of all your hospital and social appointments. Use the diary to plot how you are feeling during your treatment, paying attention to both physical and emotional manifestations of your chemotherapy treatment
• Hopefully you will be able to identify when and where you feel most affected by your fatigue and adjust your activities accordingly
• Bring your diary to with you to your hospital appointments, use it to help you identify when you most feel fatigue: is it just after your chemotherapy or just before your due your next cycle, is it due to persistent nausea? By recognising a pattern you can discuss this with your doctor and or nurse and look at how you and your doctor can make the situation better
• Remember this diary is for you to use whatever way you like

The aim of this article has been to outline a few measures that can be taken to help reduce fatigue and maximise your quality of life while having chemotherapy.

For further information contact cancerBacup on 020 7613 2121 or alternatively talk to the doctors and nurses where you are receiving your chemotherapy, who should be able to help you identify your needs and offer you some more information about local support services
Debra McKnight
Ward Sister, Wiltshaw Ward, Royal Marsden Hospital

NICE: The National Institute for Clinical Excellence
Why the patient's perspective matters

The National Institute for Clinical Excellence (NICE) is changing patients' expectations of the NHS. Patient organisations have a key role to play in ensuring that NICE does not lose sight of the patient's perspective when appraising new drugs and treatments.

Consulting patients
The patient's perspective matters for several important reasons. NICE was created to improve standards of patient care. It cannot do this in any meaningful way without consulting patients on what they want from the NHS and what their priorities are - and listening to what they say.

The patient's perspective also matters for the obvious, but important, reason that only patients know what it's really like to live with cancer. It is not incompatible with cost-effectiveness to take account of how cancer affects individual patients, what difference particular treatments make to their lives, and what the alternative is for a patient if this treatment is not available.

Finally, patients offer a unique insight into what really matters when choosing what type of treatment to have. Experts can make assumptions about whether a few extra weeks of life are worth extra visits to hospital or potentially difficult side effects, but only patients can decide what matters most to them.

Cancer BACUP study
CancerBACUP welcomed the opportunity to contribute to the third wave of NICE appraisals, which is focusing entirely on anti-cancer treatments. They sought the views of patients on their experiences of living with particular types of cancer and their experience of treatment with the drugs being appraised. They identified patients to participate in this exercise through CancerBACUP's telephone helpline, through our magazine CancerBACUP News, and via their website. They found that patients were very keen to use their experiences to inform NICE.

Patients told them that what matters is quality of life and having a choice of treatment where possible, so that if one treatment does not work or causes severe side effects another can be tried. They know from what patients have told CancerBACUP that the risk of side effects of a particular treatment may be as important to them as the possible clinical benefits, and it is vital to achieve a balance between the two.

Return to normal activity
Quality of life is an extremely important consideration when evaluating treatments that may extend survival time, as some of these treatments can be unacceptably toxic and difficult for patients to tolerate. However, patients welcome treatments that allow them to return to their normal activities as far as possible, even if only for a short time.

One patient being treated for lung cancer with one of the drugs currently being appraised by NICE told us: "I hope you can stress to NICE that this drug should be widely available on the NHS. The side-effects are negligible compared with other options, and lung cancer patients are not offered a lot of hope. The main thing is it works. It may be short-term compared to life as a whole, but to be able to live a normal life with quality is so important."

The importance of choice
It is essential that NICE takes into account not only the impact of treatments on patients' quality of life, but also considers the importance of choice to patients and their oncologists.

Different drugs are suitable for different patients, and patients may become resistant to a particular treatment but still derive benefit from another. No single treatment will be suitable for all patients. It is vital that NICE remembers this when considering a number of different drugs for the same type of cancer, as they are currently doing with colorectal and lung cancer.

If only one drug is recommended by NICE and made available on the NHS, then patients who cannot tolerate that one but may be able to tolerate an alternative are denied not only choice, they are also effectively denied treatment.

Quality of life considerations
Clinical evidence of benefit must remain the central consideration, but the appraisals so far have exposed how weak many studies are on quality of life measures. The risk is that patients with advanced and fast-progressing cancers will be denied treatments that could allow them to enjoy a decent quality of life in their last few months.

It is still too early to tell whether NICE is resolving the problem of postcode prescribing. But issuing guidance to the NHS is only the first step in a long and complex process of ensuring that national standards are implemented locally. It is not part of NICE's remit to check that its guidance is being properly disseminated and implemented by NHS trusts and health authorities, but patients will only benefit if dissemination and implementation take place as they should.

Ministers have made clear that they expect NICE guidance to be implemented throughout the NHS, and that treatments recommended by NICE should be funded from existing budget allocations. But there is no clear mechanism yet for ensuring that patients everywhere in England and Wales benefit from guidance that is intended to remove inequalities and promote the most effective treatment.
Catriona Moore
Policy Officer, CancerBACUP

Repetition of Chemotherapy

One of the questions women and their families often ask doctors and nurses is "what will happen if the cancer comes back?"

A common response would be that we (almost) always have something to offer - and almost always, in cancer of the ovary, this is chemotherapy.

It remains unclear, however, when to give this chemotherapy - whether to wait until symptoms arise or whether to act on a consistent rise in the tumour marker called CA125 which you will be familiar with. A clinical trial coordinated by the Medical Research Council is currently in progress to try to answer this question.

What needs to be considered ?
There are certain factors that the doctors will weigh up and will be able to discuss with you and your family.

• How long it was since you last had chemotherapy
• How you coped with the side effects of treatment
• Whether you are experiencing any symptoms

They may also want to do a CT scan and check again that your kidneys are working well and discuss your case with other members of the multiprofessional team such as the surgeons, radiotherapists and the clinical nurse specialists.

There are, however, questions that you and your family will also have time to ask, if you feel they are relevant

• What chemotherapy are you recommending for me?
• What do you see will be the benefits for me?
• If I don't cope with it do I have to have all the courses?
• What will the side effects of this be?
• Will the side effects be worse because I have had chemotherapy before?
• Are there other options for-instance if I don't want to lose my hair?
• How much time will I spend in hospital?
• Can I wait awhile before starting or can I work this around a holiday or a special event

Will the side effects be worse because I have had chemotherapy before?
Certainly the doctors will be keen not to worsen any effects you may have before, such as peripheral neuropathy (numbness and tingling in your fingers and toes) and this may influence their choice of chemotherapy regimen.

They will also be keen to ensure that if, for instance, you felt very sick with your first chemotherapy, this is avoided where ever possible and that if you are worried about venous access - 'finding a vein' - that other options are explored. There is no reason, though, why you should automatically feel worse just because you have had chemotherapy before.

Can chemotherapy be given in other ways?
There is an oral chemotherapy drug called Etoposide that comes in a capsule. Ovacome have a factsheet which discusses this.

Clinical Trials
New chemotherapy agents are under investigation for ovarian cancer all the time and you may get asked, at some point, if you wish to be included in a clinical trial. You may also want to ask your Doctors if they are undertaking clinical trials that you might be considered for.
CancerBACUP has an excellent information leaflet explaining clinical trials and you can contact them on 020 7613 2121.
Karen Handscomb
Royal Marsden Hospital, London