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

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

• Tiredness (fatigue)
• Hair loss
• Constipation

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 ) and published in a medical journal. The figures we quote above were provided by the trial team. We have not analysed the data ourselves.