Ovarian Cancer Insight March 2014 Contact: Sue Cumming, Insight & Social Marketing Manager, Public Health Liverpool, Liverpool City Council Public Health Liverpool
Background and objectives Aim: To explore the experiences of women with ovarian cancer and to follow their cancer pathway The specific objectives were to: • To identify positives within the cancer pathway • To identify areas within the cancer pathway that are important to them • To identify areas and suggestions of improvement within the cancer pathway
Method and sample One to one in depth interviews were conducted with OC patients and HCPs Health Care OC patients Professionals All patients in the sample had All HCPs were recruited via attended a Target Ovarian Liverpool NHS and the sample Cancer event on 14th January includes those who had opted 2014. in to take part in the research. All interviews with HCPs were It was at this event that they conducted by telephone and were told about this research lasted 45 minutes. and they agreed to be re- contacted to participate in an hour long face to face interview.
Sample A total of 9 OC patients and 8 HCPs took part in the research Macmillan General Women aged 50 or over: 8 Practitioner: 2 Woman aged under 50: 1 Consultant Obs/Gynae: 2 Required Chemo: 7 Did not require chemo: 2 Cancer Nurse Specialist: 2 Cancer recurrence: 2 Terminal: 2 Macmillan CNS: 1 All clear: 5 Macmillan Cancer Clinical Trials: 2 information and support: 1
Patient Journey overview Public Health Liverpool
Patient Journey The patient journey Support/ information
Awareness and symptoms Public Health Liverpool
Pre-diagnosis Overall, low awareness of the symptoms of ovarian cancer among women Various routes to awareness of OC
Awareness and symptoms: patient views (1) Journey towards awareness and understanding of symptoms often delayed by a number of factors : - Ease of getting GP appointment - Seeing the same GP - Low awareness of symptoms - Missed diagnosis of pre- “You don’t have your own GP. Since existing symptoms this has all happened I sort of stick - Ease of getting referred with two….I would say a lot of it was for right tests and scans down to GP, lack of diagnosis and ruling things out rather than ‘let’s - Attend A&E for other find out what it is quick’.” health issue
Awareness of symptoms: patient views (2) A wide range of symptoms that were more often linked by women to their age or menopause rather than OC IMPLICATIONS FOR GP • Awareness raising needed to understand the symptoms that could be linked to OC • Asking the right questions of patients who present with any of these symptoms & POTENTIAL TOUCH POINTS • Awareness raising at Weight Watchers or Slimmer's World • Possible touch points include, Menopause, aging, significant life events with these symptoms Some also believed that as they already had undergone a hysterectomy, this would have decreased their chances of getting OC
Awareness and symptoms: HCP views HCPS agreed that more is needed to ensure GPs are aware of symptoms and act on these Speed of linking symptoms to OC is key Things are improving but suggestions to further build on this… and must be improved More awareness raising Increased use/ Continued learning Continued use of Potential to take a impact of the Be from significant cancer audits for 3 strikes approach? Clear campaign events within primary care Practices Ensure GPs Increased remember to do an information/ examination (not awareness raising just tests) of genetics risks
Diagnostic tests Public Health Liverpool
Diagnostic tests: patient views Participants mentioned a range of tests prior to diagnosis Mixed views on relaying information Tests triggered by visits to A&E or GP about tests What to tell them: Where to tell them: Level of information Face to face very important Often sent for tests and scans with provided to be tailored to so that that they have little or no understanding of what they reflect how much the someone with them to patient already knows provide support were When to tell them: Who tells them: Timing is very important Important that it is CA 125 Ultrasound someone who can interpret when terms such as ‘oncologist’ or the results and tell them about implications and next ‘ Clatterbridge ’ are used Chest X ray CT/MRI before full diagnosis is steps communicated to patients unaware of their OC stage Laparoscopy
Diagnostic tests: patient views - quotes “They copied me the letter from the operation…the surgeon had put down everything he had taken out…at the end of the sentence he put ‘all naked eye disease removed’…I really didn’t understand what it meant. My daughter-in-law read it and knew what it meant. She had a feeling.” “I did go on my own because I thought it was a cyst. She told me “The appointment card had two know it wasn’t and that it was appointments on it. I remember cancerous. I think it took her breath ringing up and saying ‘why have I got away that I was on my own. I did tell two appointment times?’ and they her why, because I had been told by said ‘you are probably just seeing the scan that it was a cyst.” two different clinics’. They didn’t explain why but they must have known.”
Diagnostic tests: HCP views Faster access to diagnostic tests is key with the following suggestions… Faster access to scans and Build OC relevant tests into CA 125 guidance • tests other pathways with similar More guidance on next • Availability of symptoms/ possible referral steps if CA 125 is ultrasounds routes (and vice-versa) borderline (and scan • • More rapid access clinics Bowel and CEA normal) • • • Fast tracks to scans if Colorectal Suggestion for advice line • raised CA 125 or mass on Referral across pathways to discuss referral • examination would be faster if all Or regional information • Early referral to patients had a CNS/ key sheet providing ultrasound made before worker guidelines for different • CA 125 results available Ensure CA 125 and CA 125 levels • Faster access to tumour markers available histology/ tissue biopsy/ when referred laparoscopy/ image guiding (for clinical trial purposes)
Diagnosis Public Health Liverpool
Diagnosis (1) The way in which the diagnosis is delivered is just as important as the test results Most test results were delivered face to face • However, one patient was told her cancer was incurable by a nurse who left a voicemail message for her after a scan. Diagnosis usually took place in hospital 1-2 weeks after tests • There was a desire for this to be made quicker Those who were unaware of OC were often unprepared for the diagnosis and regretted going alone • Would like to have received communications that recommended that they bring someone with them (however, not too explicit that they will be needed to provide support as could cause alarm) Quality of information provided by HCPs varied: • All consultants conveyed test results and explained treatment process • However, not all Consultants gave information on possible outcomes following operation e.g. need for cycles of Chemotherapy or a Colostomy bag.
Diagnosis (2) Smooth communications process between primary and secondary care could inform discussions around diagnosis Expectation setting to avoid sudden surprises Could be informed by enabling following the greater detail gathering on GP operation referral form regarding: - What the patient has been told - The tone of this information Assess patients’ - The language used emotional state
Treatment Public Health Liverpool
Treatment The treatment pathway varied across participants HCPs feel that the MDT approach used to triage and plan treatment (operation, carboplatin, taxol, neoadjuvant) work well. These include: • Sector MDTs • Joint clinics
Treatment: operation (1) Whilst most felt that they were given a good explanation of what the surgery would involve, some felt there was a lack of information regarding possible outcomes/ impacts of the surgery PRE-OPERATION • The operation was booked in quickly. • Most felt that they had been given good explanation about what would happen. However some felt that potential impacts of the surgery had not been fully explained: • Possible need for chemotherapy following the operation • Possible outcome following histology • Possible muscle damage • Possible colostomy bag Desire for more warning about possible outcomes that will impact on quality of life post operation Managing expectations
Treatment: operation - quotes “He *consultant+ was absolutely marvellous. He drew pictures, explained everything, told me the level that my cancer was “I got a call to say I had an appointment at.” with an oncologist. I actually didn’t know what an oncologist was…I got my iPad out….I was more shocked over that than actually being told about the cancer in the first place…I think because I thought [after the operation] “I think a lot of it is just it was done and it is over.” preparing people. Not so much just the operation, but the afterwards as well.”
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