News: Women dying because of diagnosis confusion

June 29, 2009

Women may be dying because of diagnosis confusion

A groundbreaking new UK-wide study has revealed widespread GP confusion about ovarian cancer – and that women generally don’t know much about the disease. Some may be dying unnecessarily because their diagnosis takes too long.

Ovarian cancer affects 6,800 women each year. Only 30% survive, a five year survival statistic that has not improved in 30 years (unlike breast cancer survival which has increased from 50% to 80% in the same period). It is the deadliest gynaecological cancer, but if women are diagnosed at an early stage 90% could survive. At present three quarters of women are diagnosed with late stage cancer i.e. the cancer has already spread. The average time from the onset of symptoms to diagnosis is 12 months*.

Target Ovarian Cancer, , the charity behind the new study, believes ovarian cancer has been under-funded, ill understood and neglected compared to other cancers. The charity commissioned the Target Ovarian Cancer Pathfinder Study to undertake the most comprehensive mapping of ovarian cancer in the UK ever carried out. It publishes its first findings at the House of Commons on June 29, 2009.

“Change is long over-due and ovarian cancer needs to become a priority. Our in-depth investigation into the diagnosis, care and treatment of women with ovarian cancer  and their health care professionals is starting to tell us what can be done to save some of the 12 women a day who are lost to ovarian cancer,” said Annwen Jones, Chief Executive of Target Ovarian Cancer. “The Target Ovarian Cancer Pathfinder Study is the most ambitious research exercise of its kind and has helped spotlight gaps in provision as well as examples of good practice.”

As a result of the study, Target Ovarian Cancer is calling first on the Department of Health to spearhead a national symptoms awareness campaign after it found:

Among 400 GPs surveyed:

• About 80% wrongly think women with early stage ovarian cancer do not have any symptoms.
• Doctors do not know about important Department of Health guidelines issued in February that spelt out the exact symptoms doctors should watch out for. Only 27% of GPs in England were aware of this guidance.
• While 51% correctly identified ‘increased abdominal size’ as the most important symptom of ovarian cancer, less than 2% of GPs picked out ‘difficulty eating’ or ‘feeling full’.
• 61% were not aware that a strong history of ovarian cancer on her father’s side of the family could increase a woman’s risk of the disease.
• 51% did not know that the UK has one of the lowest survival rates for ovarian cancer in the developed world.**
• The majority of GPs (69%) surveyed seemed unaware that women with ovarian cancer were more likely to experience frequent, sudden and persistent symptoms than women with irritable bowel syndrome (IBS), for instance. To know this would assist them in a diagnosis. (One of the big problems women face is misdiagnosis. Women are sent for gastric tests for irritable bowel syndrome and by the time the mistake is discovered their cancer is often terminal. When asked what other diagnosis they had made when a woman presented with symptoms, seven out of 16 GPs answered IBS).

Among 1000 UK women surveyed***:

• Only 4% said they could very confidently identify a symptom of ovarian cancer.
• Most common symptoms, such as ‘increased abdominal size’, went largely unrecognised, but pain in the abdomen was correctly identified by 24% of women surveyed.
• Two thirds (63%) thought ovarian cancer was unrelated to age (in fact, older women are more likely to have ovarian cancer).
• 80 % did not know that childless women are more at risk of ovarian cancer.

“Ovarian cancer is not a silent killer …it is just not being heard,” said academic GP, Willie Hamilton, who is based at the University of Bristol and is a member of the Target Ovarian Cancer Pathfinder Study Advisory Panel.

GPs are aware there are problems and 93% of those questioned acknowledged that women often experienced a delay in getting a diagnosis. Over six in ten GPs said they would welcome improved NICE guidance (not due till 2011) and over a half would value family history tools to help them.  All GPs (100%) said they would like women to tell them if they think their symptoms might indicate ovarian cancer particularly as some reported only seeing a case of ovarian cancer once every five years.

However, nearly two thirds of 132 women with ovarian cancer interviewed for the Target Ovarian Cancer Pathfinder Study felt their doctor did not take their concerns and symptoms very seriously. Those who are wrongly thought by their GP to have IBS fare the worst.  Forty-four per cent of the women polled had to wait more than six months for a correct diagnosis. Other women (37%) had to visit their GP three to five times before being referred to an appropriate specialist and the majority (65%) said they were not referred for a CA125 blood test and/or internal scan straight away. Women referred quickly were diagnosed faster.

Target Ovarian Cancer will, for the first time use the latest online communication tool, ipadio, which broadcasts live to web from any phone, to capture reactions to the report and the stories of women with ovarian cancer. A selection of these broadcasts will be made available from our website at www.targetovarian.org.uk

Anyone who wants more information about ovarian cancer or becoming involved in the continuing Target Ovarian Cancer Pathfinder Study can visit www.targetovarian.org.uk or call 020 7923 5470.

MEDIA CONTACT:    Jerry Doyle, Director of Communications 07506507061 or 020 7923 5470/6   For interviews or case studies, call/email: jdoyle [at] targetovarian.org.uk.

Notes to Editor

1. Target Ovarian Cancer (www.targetovarian.org.uk) is a UK charity covering England, Wales, Scotland and Northern Ireland. The charity has a national remit for research, advocacy and education and our goal is to improve life chances and life quality for every woman affected by the disease. We aim to do this by: raising awareness of symptoms and risk factors; encouraging more investment in research; working to improve diagnosis and treatment of the disease and lobbying policy-makers to address gaps in healthcare provision. Target Ovarian Cancer’s Patron is Professor Sir Kenneth Calman, Chairman of the National Cancer Research Institute and former Chief Medical Officer.
2. The Target Ovarian Cancer Pathfinder Study publishes its first findings at a House of Commons event on June 29. It is the most comprehensive research ever conducted into the experiences of health care professionals and women with ovarian cancer in the UK. It brings all those involved in the patient pathway – health professionals, women with ovarian cancer, researchers – together to map the experiences of those living and working with ovarian cancer. It aims to identify clear gaps in knowledge, infrastructure, funding and need with regard to the care and treatment of women with ovarian cancer and to seek opportunities to improve outcomes not only in survival but also in quality of life and women’s experiences of care.
3. The Target Ovarian Cancer Expert Advisory Panel: CHAIRMAN: Professor Robert Haward, Emeritus Professor of Cancer Studies, University of Leeds and Associate Director of the National Cancer Research Network; MEMBERSHIP  Joanna Barker Chair of the Board of Trustees, Target Ovarian Cancer; Dr James Brenton: Cambridge Research Institute, University of Cambridge ; Professor Hilary Calvert: Clinical Director, Northern Institute of Cancer Research, University of Newcastle; Dr Willie Hamilton: Academic GP, University of Bristol ; Annwen Jones: Chief Executive, Target Ovarian Cancer; Professor Jonathan Ledermann: Chairman, National Cancer Research Institute Ovarian Group, University College London ;Professor David Luesley: President, British Gynaecological Cancer Society, University of Birmingham ; Professor Glenn McClugagge: President, British Association of Gynaecological Pathologists,University of Belfast ; Mr Andy Nordin: Clinical Advisor for Gynaecology to the NHS Cancer Improvement Team and Cancer Action Team, East Kent Hospitals University Trust ; Lisa Peck: Interim President, National Forum of Gynaecological Oncology Nurses,Gloucestershire Oncology Centre, Three Counties Cancer Network; Lindy Waldron: Patient representative; Howard Webber: Relative representative and the late Sandra Woodward: Patient representative (up to May 2009).
4. 4. Target Ovarian Cancer wishes to pay tribute to advisory panel member, Sandra Woodward, who died in May 2009 from ovarian cancer. Chief Executive, Annwen Jones said Sandra made an outstanding contribution to the fight to improve things for women with ovarian cancer.
5. The Target Ovarian Cancer Pathfinder Study commissioned Synovate to interview 400 GPs, 1000 women in the general population and 132 women with ovarian cancer in the UK. The full study also carried out a survey of Clinical Nurse Specialists and qualitative research with ovarian cancer clinicians and researchers. International  Benchmarking – The Advisory panel has also defined the terms for an international benchmarking study which is being commissioned by Target Ovarian Cancer and will report in Spring 2010.
6. *** The UK women in the general population survey funded by Target Ovarian Cancer comprised 1000 interviews.  The Ovarian Cancer Awareness Measure survey instrument was developed by Ovarian Cancer Action, The Eve Appeal, Ovacome and Target Ovarian Cancer. It is based on a generic Cancer Awareness Measure  developed by Cancer Research UK, University College London, Kings College London and Oxford University in 2007-2008. It is the first site specific Cancer Awareness Measure to be developed and aims over time to consistently measure awareness of the symptoms and risk factors of ovarian cancer;  and to enable charities to more effectively target campaigns, measure progress and ultimately improve outcomes for women with ovarian cancer.
7. **Source for survival rates quoted are from The EUROCARE-4 study on cancer survival covering the period up to 2002, which reported that England had the worst five-year survival rate for ovarian cancer at 30.2 %, with the combined figures for the UK only marginally better. This compares to the European average of 36.5%. EUROCARE-4. Survival of cancer patients diagnosed in 1995-1999. Sant M.; Allemani C.; Santaquilani M.; Knijn A.; Marchesi F.; Capocaccia R.; the EUROCARE Working Group.
8. *The findings of the study are supported by earlier research. Background research into delays in diagnosis for women with ovarian cancer -http://www.primarycare.ox.ac.uk/pc-bibliography/EvansEtAl2007: Julie Evans, Sue Ziebland, and Ann McPherson (2007):  Conclusions: “Our data illuminate the reasons why some British women experience delays in obtaining an ovarian cancer diagnosis. Delays attributable to the women were often compounded by doctor or health service delays, enabling us to expand the fifth stage of Andersen’s model. Diagnostic delays in general practice could be minimized by better history taking, explaining the rationale for ruling out non-cancer causes, adopting an ‘open-door’ policy for patients whose symptoms persist, considering abdominal ultrasound scans and introducing educational sessions for GPs about ovarian cancer symptomatology.”   Also, 2008 report: CR Bankhead, Department of Primary Care, University of Oxford, Headington:  Conclusions:  “Ovarian cancer is not a silent killer. Clinicians should distinguish between persistent and fluctuating distension. Recognition of the significance of symptoms described by women could lead to earlier and more appropriate referral.”
9. Synovate (www.synovate.com) is one of the UK’s biggest market research companies.  Synovate works with a wide range of public and voluntary sector organizations covering health, social care, education and training, environment, transport, and tax.  Our health-related clients, include Macmillan Cancer Support.
10. Department of Health messaging advises that the symptoms of ovarian cancer are usually sudden in onset and sustained; they do not subside and occur most days.  They generally include persistent  pelvic or abdominal pain, increased abdominal size , persistent bloating and difficulty eating or feeling full quickly.  Occasionally, urinary problems, changes in bowel habits, extreme fatigue or back pain may also be experienced, in isolation or together with the other key symptoms.
11. CASE STUDY : Lindy Waldron, from Sussex, Advisory Panel Patient Representative: “ I began to experience right-sided abdominal pain, which became persistent and eventually kept me awake at night. Very worried and convinced I had bowel cancer, I visited my GP. She felt my abdomen and couldn’t detect anything abnormal. Her diagnosis was irritable bowel syndrome (IBS), but seeing the worried look on my face she agreed to refer me to a gastroenterologist. He also examined me abdominally and recorded ‘no obvious mass’. Thankfully, with private health insurance, it was only a short wait for a colonoscopy to rule out colitis. The procedure was difficult and painful and although the results were normal, my ovary on the right side was seen to be protruding against the intestine. A week later I had a trans-vaginal ultrasound (TVU). During the scan I realized something was very wrong. The sonographer ran to find the consultant with the results. I remember sitting alone in the car in a complete state of shock. The consultant rang me later with the bad news. I had a large irregular complex mass behind the uterus and extending to both sides of the pelvis. I was referred urgently to a gynaecologist. When I rang my GP to tell her I might have cancer, she was lost for words.”##

(NB. Breakdown of stats and interviewees available in different regions)

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