A study looking at the experiences of women with advanced ovarian cancer (ADVOCATE)

Cancer type:

Ovarian cancer

Status:

Results

Phase:

Other

This study looked at the experiences of women who had or were having treatment for advanced ovarian cancer.

Doctors often treat advanced ovarian cancer with chemotherapy. The aim is not to cure the cancer but to control its growth and any symptoms it may be causing. Chemotherapy has side effects and it is how these affect the women being treated that the researchers wanted to look at.

This study used interviews and questionnaires to find out how women felt about their treatment and the side effects.

The aims of this study were

To identify common treatments and experiences of women with advanced ovarian cancer
To find out which side effects women found most difficult to cope with and the care they received to help with the side effects
To find out what information about ovarian cancer and its treatment was received
To find out patients’ views on maintenance therapy using a proposed situation

Summary of results

The study team found that the majority of women were happy with their care and treatment after their diagnosis of ovarian cancer.

The study team interviewed 202 women with advanced ovarian cancer. They asked

What their symptoms were when they first went to the doctor
About the care, treatment and side effects they had
About their follow up after treatment
What support the women had received
What they considered to be the most important aim of treatment

The women said the symptoms that made them go to the doctor were

A swollen tummy (abdomen)
Pain in the tummy
Tiredness (fatigue)

Of the 202 women, 43 said that they weren’t satisfied that their family doctor was able to recognise their symptoms as being caused by ovarian cancer.

During treatment the most bothersome side effects for the women were

Of the 202 women interviewed, 85 had finished treatment and were having follow up appointments. The majority of them (55 women) were going to the clinic every 2 to 3 months. On average, the women were very satisfied with their follow up.

The women’s view of what information and support they received and what was available to them depended on whether they were still having treatment or had finished treatment. Of the 202 women, 158 said that they had received information about their chemotherapy. And 148 women said that the hospital staff had given them an information booklet about ovarian cancer.

When asked about what aspect of their information needs were met

More than 80 out of every 100 women (80%) said that the practical side, such as explanation of diagnosis, tests and treatments were
58 out of every 100 women (58%) said information about their disease control was
40 out of every 100 (40%) said how to cope at home was
40 out of every 100 (40%) said what support was available outside of hospital was
20 out of every 100 (20%) said how to access psychological services was

The women said that their main sources of support came from

Family and friends
Their family doctor
The Hospital Specialist Nurse
The Community Nurse

The researchers asked the women, ‘If your doctor offered treatment that caused side effects such as tiredness, feeling sick, numbness or tingling in the fingers or toes how many extra months of life would you want to make having the treatment worthwhile?’

42 women said they couldn’t answer the question
52 women said 1 to 2 months
10 women said 3 to 4 months
49 women said 5 to 6 months
49 women said 7 months or more

When asked what the most important aim of their treatment was

115 out of the 201 women (57%) said a balance of the quality of life with the length of life
67 out of the 201 women (33%) said quality of life was
19 out of the 201 women (9%) said length of life was

The researchers also asked the same questions of 60 doctors who treat women with ovarian cancer.

The doctors thought that the most troublesome symptoms for the women were a swollen tummy and pain. During treatment they thought the most bothersome side effect was tiredness and admitted that it was difficult to treat. All of them said they saw women regularly after treatment.

All the doctors said they had given each woman an information booklet about ovarian cancer. And 55 doctors said that they had recommended a cancer support website to their patients.

The researchers asked the doctors how many months of extra life would be needed to make continuing treatment worthwhile for women with advanced ovarian cancer.

2 doctors said 1 to 2 months
36 doctors said 3 to 4 months
15 doctors said 5 to 6 months
7 doctors said 7 or more months

The study team concluded that the majority of women were happy with their care and treatment once a diagnosis had been established. However a lot of the women gave worrying reports of a lack of information and support. These findings were in line with much of the recent ovarian cancer quality profile summaries produced from the Nation Cancer Patient Experience Survey (CPES) for 2011/12.

We have based this summary on information from the team who ran the trial. The information they sent us has been reviewed by independent specialists (peer reviewed Open a glossary item ) and published in a medical journal. The figures we quote above were provided by the trial team. We have not analysed the data ourselves.