Ovarian Cancer Insight March 2014 Contact: Sue Cumming, Insight - - PowerPoint PPT Presentation

Public Health Liverpool

Ovarian Cancer Insight

March 2014

Contact: Sue Cumming, Insight & Social Marketing Manager, Public Health Liverpool, Liverpool City Council

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 OC patients

All patients in the sample had attended a Target Ovarian Cancer event on 14th January 2014. It was at this event that they were told about this research and they agreed to be re- contacted to participate in an hour long face to face interview.

Health Care Professionals

All HCPs were recruited via Liverpool NHS and the sample includes those who had opted in to take part in the research. All interviews with HCPs were conducted by telephone and lasted 45 minutes.

Sample

A total of 9 OC patients and 8 HCPs took part in the research

Women aged 50 or over: 8 Woman aged under 50: 1 Required Chemo: 7 Did not require chemo: 2 Cancer recurrence: 2 Terminal: 2 All clear: 5 Clinical Trials: 2 Macmillan General Practitioner: 2 Consultant Obs/Gynae: 2 Cancer Nurse Specialist: 2 Macmillan CNS: 1 Macmillan Cancer information and support: 1

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Patient Journey overview

Patient Journey

The patient journey

Support/ information

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Awareness and symptoms

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-

existing symptoms

• Ease of getting referred

for right tests and scans

• Attend A&E for other

health issue

“You don’t have your own GP. Since this has all happened I sort of stick with two….I would say a lot of it was down to GP, lack of diagnosis and ruling things out rather than ‘let’s find out what it is quick’.”

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

Some also believed that as they already had undergone a hysterectomy, this would have decreased their chances of getting 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

&

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 and must be improved

Things are improving but suggestions to further build on this…

Increased use/ impact of the Be Clear campaign Continued learning from significant events within Practices Increased information/ awareness raising

• f genetics risks

Continued use of cancer audits for primary care Potential to take a 3 strikes approach? More awareness raising Ensure GPs remember to do an examination (not just tests)

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Diagnostic tests

Diagnostic tests: patient views

Participants mentioned a range of tests prior to diagnosis

Often sent for tests and scans with little or no understanding of what they were

Chest X ray

Mixed views on relaying information about tests Tests triggered by visits to A&E or GP

CT/MRI Laparoscopy CA 125 Ultrasound

Who tells them: Important that it is someone who can interpret the results and tell them about implications and next steps What to tell them: Level of information provided to be tailored to reflect how much the patient already knows Where to tell them: Face to face very important so that that they have someone with them to provide support When to tell them: Timing is very important when terms such as ‘oncologist’ or ‘Clatterbridge’ are used before full diagnosis is communicated to patients unaware of their OC stage

Diagnostic tests: patient views - quotes

“The appointment card had two appointments on it. I remember ringing up and saying ‘why have I got two appointment times?’ and they said ‘you are probably just seeing two different clinics’. They didn’t explain why but they must have known.” “I did go on my own because I thought it was a cyst. She told me know it wasn’t and that it was

• cancerous. I think it took her breath

away that I was on my own. I did tell her why, because I had been told by the scan that it was a cyst.” “They copied me the letter from the

• peration…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.”

Diagnostic tests: HCP views

Faster access to diagnostic tests is key with the following suggestions…

Faster access to scans and tests

• Availability of

ultrasounds

• More rapid access clinics
• Fast tracks to scans if

raised CA 125 or mass on examination

• Early referral to

ultrasound made before CA 125 results available

• Faster access to

histology/ tissue biopsy/ laparoscopy/ image guiding (for clinical trial purposes) Build OC relevant tests into

• ther pathways with similar

symptoms/ possible referral routes (and vice-versa)

• Bowel and CEA
• Colorectal
• Referral across pathways

would be faster if all patients had a CNS/ key worker

• Ensure CA 125 and

tumour markers available when referred CA 125 guidance

• More guidance on next

steps if CA 125 is borderline (and scan normal)

• Suggestion for advice line

to discuss referral

• Or regional information

sheet providing guidelines for different CA 125 levels

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Diagnosis

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 following the

• peration

Assess patients’ emotional state Could be informed by enabling greater detail gathering on GP referral form regarding:

• What the patient has been told
• The tone of this information
• The language used

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Treatment

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

“I think a lot of it is just preparing people. Not so much just the operation, but the afterwards as well.” “He *consultant+ was absolutely marvellous. He drew pictures, explained everything, told me the level that my cancer was at.” “I got a call to say I had an appointment 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] it was done and it is over.”

Treatment: operation (2)

It is important to receive an update from the surgeon following surgery, but effects of medication can make this a difficult time to remember and digest information

POST-OPERATION – IN HOSPITAL

Information from surgeon when first wake up:

• Important to be told how the operation went
• Feel that the surgeon is sensitive in delivering

information on how the operation went But some had been feeling ‘woozy’ due to the impact of medication:

• Not best time to get detailed information
• Not best time for them to ask questions

“He *consultant+ came the next day and said ‘it is gone, we have got it in

• ne piece, it is gone’. I was like

‘wow’. When he came the next day and the next day, every day I asked him to repeat it because you are so full of morphine and painkilling drugs and anaesthetic that you think ‘did I dream that’? ”

 Need to ensure there is another opportunity for this discussion/ reminder of what the surgeon has said

Treatment: operation (3)

There is potential to build friendships/ support networks on wards

POST-OPERATION – IN HOSPITAL

• Some women made friends with other women on the ward
• These friendships formed a support network for women

which are still in place now

 Potential to further enable these support networks

Treatment: operation (4)

Some concerns regarding lack of clinical support following discharge Unease at anti-coagulant injection being carried out by self/ husband instead of district nurse Unclear whether there is an individual they can contact when something happens e.g. problems with wound - just contact general ward/ department.  Would like named contact Missed district nurse when they called (asleep) and then could not get them to return.

• Good explanation of hair loss/ arranging a wig and how to plan

around good/ bad days/ cycles and tiredness

• But some felt there was lack of warning regarding other side-

effects:

• Impact on joints/ arthritis
• Potential anaphylactic shock (taxol)
• Dry skin
• Having choice and control over treatment is

very important

• Women felt like the options were well

explained, particularly dual chemotherapy (carboplatin and taxol)

Treatment: chemotherapy (1)

Women felt they had control and choice over chemotherapy but mixed information regarding different side-effects Control and choice Side- effects

Treatment: chemotherapy (2)

Whilst staff are considered friendly, a couple wondered whether the treatment day could be made easier/ shorter

Staff

• Staff very friendly
• Plenty of staff available
• One experience of being moved from room to room because of lack of available private space

Support

• Important that able to take friend/ family member with them

Transport

• One mention of having to wait for hospital transport to be ready – can extend an already long and tiring day

Time taken

• Recognise that it is a long process but any way to shorten the day would make life easier

Blood test results

• One mention of not being shown to a private room to discuss outcome of blood test (meaning that could not have

chemotherapy that day)

Treatment: clinical trial

Those who had been/ were on clinical trial were very satisfied with the support and care they received Dedicated clinical trial nurse More frequent appointments Free transport Time to consider being

• n the trial

Reassurance that can leave the trial at any time Being on a clinical trial is aligned with receiving excellent care and support

Treatment: further chemotherapy

Some women had received or were due to receive further chemotherapy Some described a complex decision making process about when to begin further chemotherapy… …how long I can wait …I want to spend time with family before starting again A couple in hindsight wished that they had delayed for a little longer  Potential to provide more support in making this decision

“I said ‘I know I have got it back and I don’t know when to have chemo’. He said ‘you can have chemo now, we can start it now’. It frightened me…I remember thinking it was not what I want , I wanted you to say we can leave it longer. I went away feeling really upset …I went to Dr X and she said ‘we can leave you as long as you feel comfortable’…eventually *later in the year + she said ‘we could catch it now’ so I went ahead with it but I know I could have left it longer and I wish I had.”

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Beyond cancer and living with cancer

Beyond cancer and living with cancer

Women need to feel confident that they are still being cared for…

PATIENT VIEWS

• Important that CNS has an
• pen door policy
• Positive where there is a

responsive and supportive relationship with the GP

• Want independence but

reassurance that there is someone looking out for them

• Counselling is important for

some

• 1 was still waiting for

this

HCP VIEWS

• Maintaining same CNS if there is a reoccurrence is important
• Find that women need support in managing fear of

reoccurrence

• Currently have to refer out for OT services but think this will

need to change as more women are living with cancer/ beyond cancer and with complex health needs

• GPs suggest code of follow-up for those living with cancer (like

with diabetes) if resourcing is available

HCP VIEWS ON PALIATIVE CARE

• Notice that some younger women push back on the idea of

hospice – need to increase awareness of hospice as day service providing information/ support

• Important to make information available so women can engage/

make decisions when is right for them

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Support and information needs

Support and information needs (1)

Range of people provide information and support

GP Clinical Nurse Specialist Macmillan Nurse Consultant Family and friends Support groups Other public services Charities e.g. Age UK

Support and information needs (2)

Information and support needs are different for each person and issues and concerns can be raised at any time. Overall support is good but could be improved by more local support and more guidance on accessing support for those who are unlikely to proactively ask for/ seek support

Overall:

• When support works/ is

provided it is excellent

• Local support networks

are valued but not accessible to all

• There are concerns

about over-burdening family/ friends

• Proactivity of women

depends on their reaction to diagnosis, and previous experience of cancer

• Reiterating available

support could help those less likely to be proactive/ not ready to discuss support

Support and information – quotes

“What they didn’t offer me was the chance to speak to anyone in a similar position who has been through it. I wasn’t offered the chance to be put in touch with other ovarian cancer women at the time. I think that is one thing that is very helpful, for you to speak to other women.” “I was thinking ‘how long have I got to live?’ and she said ‘you need some counselling’…maybe counselling should be offered up front..” “I hadn’t been seen by a Macmillan nurse and they should have had me on their

• books. Nobody was

communicating to each

• ther and I don’t know who

should have organised that.” “The oncologist and the Macmillan nurse said to come back next week…I said ‘next week I am going to see Rod Stewart and it has been booked’. They both started laughing and said ‘good for you, that is what chemo is about. This is about you living your life…so I took that with me.”

Maggie’s Centre Professionals looking forward to new centre Target Ovarian Cancer Raising awareness, sharing experiences

Peer support

Women felt that peer support was crucial EVOC Peers, CNS involvement, choir Ovacome Online, read by husband, share advice

Desire to access these varies at different stages of the pathway  important to ensure women know these exist Face-to-face support groups need to be accessible/ local and EVOC is considered too far away for some Some had created their own peer support friendship from women they had met on the Ward Appetite to get involved in more support meetings in their local area

HCP query whether local general/

• ther cancer groups could offer

rooms for local meetings HCP supports local buddying system but dependent on people volunteering

Support: HCP views

HCPs use tailored and holistic support approaches which work well, but identify areas where improvements (if resource available) could be made…

CNS able to provide more support during chemotherapy (between appointments) More availability of Macmillan nurses GPs to have a support care list and monthly review for OC Increased sign- posting to talking therapies e.g. the Hope course Looking at stratified pathways for different outcomes More availability of counselling for women and family (e.g. Relate) On-site welfare and benefits service (currently sign-post

• ut to local

providers) Support with travel and travel costs

HCP communications

HCPs mention potential ways for communications to be more joined up between primary and secondary care across the pathway and help greater continuity of patient support across care/ hospitals

• Include detail about what patients have been told
• Enables greater support and advocacy role for GP
• Important information for local re-contact
• Greater use of Somerset would be helpful if it can be

designed to be joined-up (and not require individual records for each hospital/ tertiary care)

• Could Clatterbridge then use this?
• Could GPs see a screen only view?
• Could these be provided by Clatterbridge?
• To be provided to all relevant HCPs
• To include details of dual or single chemo and reason, and

whether patient on clinical trial

GP Referrals Use of Somerset Updates to GP and original referring hospital End of treatment summaries

Role of other organisations

Where support services are provided by other organisations there is need for a sensitive approach

Local Council: One patient mentioned that she applied for a Blue Badge once she found out she was eligible. She used this for a few months but was confused when it expired after 5 months. She contacted the Council offices and she was informed that she came through on “special rules” and that her “doctor had filled in the form and he didn’t expect you to need it for more than six months.” This was the first time the patient had any idea of the extent of her terminal cancer and left her very upset. Citizens Advice: One HCP noted how they had been contacted by a patient to ask for an answer to a question on a form being completed by CAB on their behalf. The essence of the question was prognosis. The HCP felt that the answer was difficult to give to the patient especially as their chemotherapy had not yet taken place. They felt that the CAB had not fully appreciated the sensitivity and impact of the question that they had asked.

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Actual patient journeys

Oct 2011 Nov 2011 Jan 2012 Feb 2012 March 2012 April 2012 June 2012 Aug 2012 Oct 2012 Feb 2013 July 2013 Nov 2013 Dec 2013 Feb 2014 Oct 2011 Nov 2011 Jan 2012 Feb 2012 March 2012 April 2012 June 2012 Aug 2012 Oct 2012 Feb 2013 July 2013 Nov 2013 Dec 2013 Feb 2014

Went to see GP with persistent cough & given antibiotics and piriton Noticed sudden weight gain Saw 4 GPs over 5

• ccasions.

Told them mother died

• f OC

Told by all GPs that nothing wrong with stomach.

Sent to hospital Scan

Cancer advanced. Learns cancer is incurable nature via voicemail from nurse

Operation

Told about chemo day after op. Told about cholostomy bag when asked nurse what it was.

Within 1 week

Discharg ed from hospital Told eligible for a Macmillan nurse

Told by GP NOT eligible for a Macmillan

• nurse. But

prescribed 100 tramadol, 100 anti depressants & 100 paracetamol s

Social worker organised carer to visit twice a day

Chemo started Changed GP surgery & given ‘gold star’ treatment In pain day after start of chemo & back in hospital ward for 3 weeks Access to a Macmillan nurse & cancer care charity Chemo stops Bloods checked – chemo had affected bone marrow Chemo starts Chemo stops

4 months 4 months

Oncologist appt Lot of pain in side and hands swollen. Oncologist sends for scan because thinks cancer has returned. 3 weeks of stress waiting for test results Scan negative – not cancer Due appt with

• ncologist

Jan 2013 Feb 2013 March 2013 April 2013 May 2013 June 2013 July 2012 Aug 2013 Sept 2013 Oct 2013 Nov 2013 Dec 2013 Jan 2014 Feb 2014 Jan 2013 Feb 2013 March 2013 April 2013 May 2013 June 2013 July 2012 Aug 2013 Sept 2013 Oct 2013 Nov 2013 Dec 2013 Jan 2014 Feb 2014

Told to visit GP by son

Weak bladder and tiredness noticed by family

Visits GP

Explains symptoms to GP who recognises symptoms and refers her for CA125 tests Test results come back within a week and she is told by GP that it is cancer

Booked in fast track

Scan within 2 weeks at Warrington hospital Ultrasound scan HCP tells her it is a “cyst”

“It is a cyst. That is absolutely fine”

Told she would be transferred to Liverpool Womens’ Didn’t tell family as it was just a “cyst””

Saw Gynae alone

Surgery to remove cancer Told it was cancer. Daughter came to collect her Told cancer was “all gone”. At her request surgeon repeated this next few days so she wasn’t imagining it. Told about

• ncology

appt In shock as she believed she no longer had cancer. Didn’t think she needed chemo Saw Oncologist with Macmillan nurse. Chemotherapy Every 3 weeks (Trials) Side effects felt – but manageable Side effects explained and given time to think about it Expects to see Oncologist in March