Defining quality in ovarian cancer services: the patient perspective

Defining quality in ovarian cancer services: the patient perspective 1

Contents Introduction... 3 Awareness and early diagnosis... 4 Information and support... 5 Treatment and care... 6 Living with and beyond cancer... 8 Making the new system work for ovarian cancer patients... 10 Annex 1... 11 References... 12 2

Introduction Ovarian cancer is the fifth most common cancer among women in the UK, affecting around 7,000 women each year 1. It is one of the harder cancers to detect and survival rates have been consistently lower in England compared to other countries 2. Furthermore, ovarian cancer patients have poorer experiences of care than those with other cancers 3. Recent figures published by Cancer Research UK predict that death rates for ovarian cancer will fall by 40 per cent by 2030 as a result of earlier diagnosis, and improved treatments 4. Improvement in outcomes and experience will, however, be dependent on action from the Department of Health, commissioners and providers in the NHS. The current changes to the health services provide both an opportunity and a threat for delivering improvements for ovarian cancer patients and ensuring quality across the board. For example, the renewed emphasis on patient experience and outcomes should ensure that the NHS is focused on the areas that really matter. Reforms also risk instability in services as a result of changes to commissioning processes. In order to ensure that high quality services are delivered for ovarian cancer patients, a robust quality framework needs to be in place. Ovacome embraces the principle of no decision about me, without me and is keen to ensure that patients really are at the heart of decisions about their care, and have a say in the development of overall services. We welcomed the publication of the quality standard for ovarian cancer but were disappointed that it only covers part of the patient pathway. We are calling for NICE to review the current quality standard to cover the whole patient pathway and incorporate the experiences of patients. In the short term, we have decided to develop recommendations to sit alongside the quality standard and support NHS commissioners and providers to understand what they should be delivering for ovarian cancer patients. These are not intended to be viewed as additional quality statements but rather markers of quality ovarian cancer care. In January 2013, we convened a group of patients and carers to find out what matters to them and to identify actions which could help to improve the quality of services for ovarian cancer patients. We also reviewed contributions to the Ovacome forum. The testimonies from women and carers at the workshop and from the forum helped us to assess the current quality standard. We focused on four key areas on the patient pathway: Awareness and early diagnosis Information and support Treatment and care Living with and beyond cancer The issues discussed form the basis of this report, which sets out recommendations for ensuring quality in ovarian cancer services, from a patient perspective. An assessment of the quality standard and our recommendations across the four areas are also summarised in Annex 1. 3

Awareness and early diagnosis Too many women with ovarian cancer are diagnosed late, when their cancer is already advanced 5. We know that almost 30% of ovarian cancer patients in England were diagnosed following an emergency admission to hospital 6 and that 37% of women surveyed by the Cancer Patient Experience Survey (CPES) had to see their GP more than twice about their symptoms before being referred for diagnostic tests 7. The experiences of the women at our workshop supported these statistics. Many of the women underlined the need for persistence in securing a diagnosis. One woman in the group had experienced symptoms for 18 months before receiving a diagnosis. She was not diagnosed until she was admitted to hospital and underwent emergency surgery. The key themes and findings from our workshop on awareness and early diagnosis are as follows: General awareness Many women knew that they didn t feel right but didn t link this to the signs of ovarian cancer. This impacted on whether they went to their GP and how they communicated their symptoms GP awareness Although some women who had a strong relationship with their GP were referred quickly for tests after describing changes, many more had to return to their GP several times before being referred to a specialist or for diagnostic tests, echoing findings from the CPES Diagnostic tests Some women were pleased to have been referred for CA125 tests at an early stage. However, referrals for investigative operations did not always happen in a timely manner and others commented that GPs did not seem to know about new measures to allow easier referral for ovarian cancer diagnostic tests Communication Women commented on poor communication, both in terms of healthcare professionals talking to them about their symptoms and their diagnosis, and between the GP surgery and hospitals - Women felt that their symptoms were repeatedly ignored, that they were not being listened to or taken seriously. Symptoms were often dismissed as being linked to the menopause - Many women felt that they were sent for tests without knowing fully what they were for, one woman found out about a potential cancer diagnosis by reading a referral letter - In one instance, the GP was not informed by the hospital that the patient had undergone surgery Ensuring quality in awareness and early diagnosis The Quality Standard for ovarian cancer focuses on early diagnosis and its quality statements around CA125 testing and staging should help to improve referral and improve early diagnosis for ovarian cancer. To support this, Ovacome has identified a number of markers of quality on awareness and early diagnosis: Pilots for Be Clear on Cancer awareness campaigns on the signs and symptoms of ovarian cancer should be rolled out across the country A support tool should be developed for patients to help them to ask the right questions and challenge responses from GPs and consultants GPs should be given training on the signs and symptoms of ovarian cancer to help them to identify women with the condition All GPs should be made aware that they can send a patient for an ultrasound if they are unsure of symptoms 4

Information and support Information and support should be a key component of the care that ovarian cancer patients receive. Despite this, the CPES shows us that over 40% of ovarian cancer patients were not given written information about their cancer. One in three women with ovarian cancer felt that their views were not taken into account by doctors and nurses discussing treatment and although 91% of ovarian cancer patients were given the name of the clinical nurse specialist (CNS) in charge of their care, only 68% said that their CNS was easy to contact 8. Women at our workshop were generally positive about the support and information that they received. There was a difference in the experience of women based on whether they were seen in a specialist gynaecology oncology clinic or general gynaecology clinic. Women often felt that the written information and CNS support was let down by poor communication on behalf of the consultants that they came into contact with. The key themes and findings from our workshop are as follows: CNSs Women were unanimous in their support of the role played by CNSs in terms of the ongoing support provided either in person, over the phone or by email. It was noted, however, that CNSs were frequently spread too thinly, making it difficult to provide ongoing support Quantity and quality of information Most women felt that the amount of helpful information on ovarian cancer including advice on their condition, support services and treatment options has improved greatly in recent years. Many of them said that the resources provided by the various ovarian cancer charities were extremely helpful Tailored information There was consensus that the information provided to an individual should be tailored to their circumstances and preferences, this was particularly pertinent in cases where patients are diagnosed at a late stage, or for younger women whose fertility might be affected by treatment Engaging with clinicians Some women commented that they often found interacting with their consultant an intimidating experience and were reluctant to ask questions or challenge their opinions. Others commented that the communication of diagnosis or treatment options were handled insensitively by healthcare professionals Support for carers Carers at the workshop said that they felt that they often did not know where to turn for advice and support, and stated more could be done to advise them on how they can support their partner throughout the duration of their care. It was noted that Ovacome frequently receives calls from husbands and sons to their helpline Ensuring quality in information and support No mention is made of the need for information and support within the ovarian cancer quality standard, despite its inclusion in the breast cancer quality standard both in terms of information and the support of a CNS 9. Information and support should feature in a revised quality standard and the following approach should be adopted by providers: A whole-person approach to information and support should be implemented, recognising the circumstances of each woman who receives a diagnosis Investment should be made in ovarian cancer CNSs to ensure that they have sufficient time to provide support and answer questions from women with ovarian cancer and their carers Communication skills training for healthcare professionals should be maintained and rolled out more widely to incorporate healthcare professionals who are not cancer-specialists Better signposting to advice and support for carers should be introduced 5

Treatment and care Treatment for women with ovarian cancer normally includes surgery and chemotherapy. Women with ovarian cancer should be given the opportunity to discuss their treatment options with their clinicians. This could include where they receive treatment and the type of treatment they receive. They should also be able to access the treatments that their clinician wishes to prescribe. According to the CPES, almost one fifth of women with ovarian cancer had not discussed their treatment options 10. Research has highlighted the negative impact that restrictions on access to treatments, as well as later stage diagnosis, has had on survival rates for women with ovarian cancer in the UK 11. Many women who attended the seminar had already undergone treatment, and some women who were hoping to come to the seminar were unable to because they were unwell due to the side effects of treatment. In light of this, we have also referenced the experiences of women who have discussed access to treatments on the Ovacome forum to ensure that our recommendations reflect the experiences of patients throughout the pathway. The key themes and issues discussed on the day or on the Ovacome forum are as follows: Decision-making Many women at the seminar felt that they had been given sufficient opportunities to discuss their treatment and the options available to them. Others said they had not had time to discuss options because they were only diagnosed when the first surgery was undertaken. Some women admitted that they were happy to defer decisions regarding their treatment to their doctor as they trusted their judgement Specialist centres Women who had been treated at specialist centres commented that they were happy to be treated by specialists and to be surrounded by women going through the same experiences and treatment. Some women felt that once they had discovered they needed surgery, there was no real opportunity to research and reflect on the options for where it would be best to be treated and often ended up being treated at the local hospital by default. Information Although many women found that they were given appropriate information about their treatment, some women admitted that information was not sufficient for example, information provided about the effects of surgical menopause Surgery Due to the nature of diagnostic procedures, not all women were aware before they had surgery that they had ovarian cancer. There was a feeling that the delivery of information and support for this group was not always managed sensitively Access to medicines Women have welcomed the fact that they have been able to gain access to cancer drugs for ovarian cancer as a result of the Cancer Drugs Fund (CDF). Some women have expressed concern that they were not able to access treatments that other women on the Ovacome forum were receiving 12 Side effects Most of the women felt that they had the likely side effects of their treatment explained to them clearly before commencing their course of treatment, but were still unprepared for the physical and emotional impact it ultimately had. Clinical trials Some women had been given the opportunity to participate in clinical trials and had positive experiences as a result. The majority of the women were never given any option of having treatment through a clinical trial and would like to be informed about trials that are relevant to them Ambiance Many women commented on the impact that environment had on their experience of receiving treatment. Those in specialist centres liked being with other women going through the same treatment, others said that the day wards made you feel like you were on a factory line or a conveyor belt and that nurses did not have enough time to reassure patients and answer questions 6

Ensuring quality in treatment and care There is one quality statement within the quality standard for ovarian cancer on treatment which focuses on surgery but its focus is on staging, rather than removing the cancer. No reference is made in the quality standard to surgery for more advanced cancer, chemotherapy, information or wider support on treatment the lack of a comprehensive focus should be remedied without delay. The following measures should also be applied: Women should be given appropriate information and support by clinicians and healthcare professionals to help them to understand their treatment options (including clinical trials) to enable them to make informed decisions about their treatment and care Women should be supported to choose where they have their surgery and ongoing treatment The CDF has enabled access to cancer drugs for women with ovarian cancer and a mechanism needs to be in place to ensure patients can continue to access these treatments after the Fund ends Information on ongoing clinical trials should be made publicly available so that women can find out about all their treatment options Hospital wards should be conscious of the needs of women receiving chemotherapy, ensuring that enough staff are around to help and improving the comfort of facilities 7

Living with and beyond cancer Many women with ovarian cancer are now living with and beyond their cancer diagnosis. Follow-up care and support are important in helping women to come to terms with their cancer and to lead as normal a life as possible. Over 30% of women with gynaecological cancers felt that healthcare professionals did not give enough emotional support after treatment and more than 20% felt that they were treated as a set of symptoms 13. Just 22% of patients with gynaecological cancers were given a written assessment or care plan 14. There were mixed feelings among the women at the workshop about their follow-up care. The key themes and findings from the session were as follows: Whole-person approach Some women expressed their concern that healthcare professionals felt that once the cancer was removed, that was it. They advocated a whole-person approach and highlighted how important it was to ensure that CNSs have enough time to support women after their formal treatment Follow-up One woman commented that communication from the consultant after chemotherapy could have been improved. More generally, follow-up appointments were felt to be a vital part of care for ovarian cancer. Women said that knowing they would be receiving check-ups by their consultant or nurse made them feel confident that their health was being monitored Information Women felt that better information would have helped them to understand and come to terms with the impact of their treatment in the longer term. One woman highlighted the lack of information on recurrence as a particular problem Support mechanisms Women commented on the lack of psychological support immediately after treatment. Others stated that they had not been given any information about support groups. Another woman said that the role of the CNS was crucial but that unfortunately they were spread too thinly so were not able to provide the level of support that was needed. One women reported that she had been part of a pilot study on supportive follow-up and had found it very beneficial Support groups Women commented on the benefits of support groups and that they were a good forum to share their experiences and receive information and support on living with their condition and adopting healthy lifestyles Working Women gave mixed reports of how supportive their employers were and that the support offered varied greatly depending on the approach of individual employers, rather than the women involved. The overall resounding issues from the group was that neither women nor their employers understood how long it would take to feel well enough to return to work and what capabilities they would have when they did so Ensuring quality in follow-up care and support Given the focus on diagnosis and initial treatment, the ovarian cancer quality standard makes no mention of the support that should be provided to women who are living with and beyond ovarian cancer. Once again, NICE should take note of the content of the breast cancer quality standard includes reference to care plans and follow-up appointments 15. The following measures should also be implemented: Care plans should be developed for all women with ovarian cancer to ensure that follow-up care delivers for patients Information should be made available to women on issues relating to recurrence, fertility, effects of surgical menopause, chemotherapy side effects, healthy lifestyle, state benefits and 8

local support groups Investment should be made in ovarian cancer CNSs to ensure they have time to support women after they have completed treatment Information resources should be developed to help explain to employers the impact of ovarian cancer and what measures should be taken to support women in returning to work after treatment 9

Making the new system work for ovarian cancer patients Ovarian cancer patients deserve high quality care and the current quality standard for ovarian cancer does not cover the full patient pathway. While improvements are needed in the area of diagnosis, the current document does not address the needs of women who have already been diagnosed with ovarian cancer. NICE should announce a review of the existing quality standard without delay. Without appropriate levers and mechanisms in place, it will be difficult for us to improve the quality of care and experiences of women with ovarian cancer from diagnosis, through treatment and beyond. We are committed to improving integration of care for women with ovarian cancer and ensuring that they receive enough information, care and support to understand their condition and make informed choices about their treatment. We will also be working to ensure that patients with ovarian cancer have access to the treatments that their clinicians wish to prescribe. Ovacome and our volunteers, many of whom attended the workshop in January, will be working on a local level to support commissioners and providers in delivering high quality care for ovarian cancer patients and adopting some of the recommendations set out in this report. About Ovacome Ovacome is a UK-wide support network providing information and support for anyone affected by ovarian cancer. Please contact Louise Bayne on 07932 063747, or via email at l.bayne@ovacome.org.uk for further information about this report. Ovacome, Suite B5, City Cloisters, 196 Old Street, London EC1V 9FR Registered Charity Number: 1058026 10

Annex 1 The following table summarises how effectively the quality standard for ovarian cancer should support quality in ovarian cancer services and outlines our recommended actions. For ease of reference, we have colour-coded our quality standard assessment: Red = no quality statements on issues discussed Amber = quality statements on some issues discussed Green = quality statements on all issues discussed Topic Quality standard rating Recommended actions Awareness and early diagnosis Information and support Treatment and care Quality statements focus on tests for ovarian cancer, no mention is made of awareness There are no quality statements on information and support There is one quality statement on surgery for women with suspected stage 1 cancer but no statements on active treatment rates Pilots for awareness campaigns on the signs and symptoms of ovarian cancer should be rolled out across the country A support tool should be developed for patients to help them to ask the right questions and challenge responses from GPs and consultants GPs should be given training on the signs and symptoms of ovarian cancer to help them to identify women with the condition All GPs should be made aware that they can send a patient for an ultrasound if they are unsure of symptoms A whole-person approach to information and support should be implemented, recognising the circumstances of each woman who receives a diagnosis Investment should be made in ovarian cancer CNSs to ensure that they have sufficient time to provide support and answer questions from women with ovarian cancer and their carers Communication skills training for healthcare professionals should be maintained and rolled out more widely to incorporate healthcare professionals who are not cancer specialists Better sign-posting to advice and support for carers should be introduced Women should be given appropriate information and support by clinicians and healthcare professionals to help them to understand their treatment options (including clinical trials) to enable them to make informed decisions about their treatment and care Women should be supported to choose where they have their surgery and ongoing treatment The CDF has enabled access to cancer drugs for women with ovarian cancer and a mechanism needs to be in place to ensure patients can continue to access these treatments after the Fund ends Information on ongoing clinical trials should be made publicly available so that women can find out about all their treatment options Hospital wards should be conscious of the needs of women receiving chemotherapy, ensuring that enough staff are around to help and improving the comfort of facilities 11

Living with and beyond cancer There are no quality statements on living with and beyond cancer Care plans should be developed for all women with ovarian cancer to ensure that follow-up care delivers for patients Information should be made available to women on issues relating to recurrence, fertility, effects of surgical menopause, chemotherapy side effects, healthy lifestyle, state benefits and local support groups Investment should be made in ovarian cancer CNSs to ensure they have time to support women after they have completed treatment Information resources should be developed to help explain to employers the impact of ovarian cancer and what measures should be taken to support women in returning to work after treatment References 1 Cancer Research UK, Ovarian cancer key facts, available at: http://www.cancerresearchuk.org/cancerinfo/cancerstats/keyfacts/ovarian-cancer/ accessed 22 February 2013 2 Prof MP Coleman et al, Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, 1995 2007 (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data The Lancet, Volume 377, Issue 9760, pages 127 to 138 3 Department of Health, National Cancer Patient Experience Survey Programme 2010 National Survey Report, 2010 4 Cancer Research UK, Cancer death rates set to drop 17 per cent by 2030, available at: http://www.cancerresearchuk.org/cancerinfo/news/archive/pressrelease/2012-09-25-cancer-death-rates-to-drop-by-17-per-cent-by-2030?sssourcesiteid=home&view=rss accessed 26 February 2013 5 National Institute for Health and Clinical Excellence, Quality standard for ovarian cancer (QS18), May 2012 6 National Cancer Intelligence Network (NCIN), Routes to Diagnosis - NCIN Data Briefing, November 2010 7 Department of Health, Cancer Patient Experience Survey: National Report 2011/12, August 2012 8 Department of Health, Cancer Patient Experience Survey: National Report 2011/12, August 2012 9 National Institute for Health and Clinical Excellence, Quality standard for breast cancer (QS12), September 2011 10 Department of Health, Cancer Patient Experience Survey: National Report 2011/12, August 2012 11 Prof MP Coleman et al, Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, 1995 2007 (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data The Lancet, Volume 377, Issue 9760, pages 127 to 138 12 My Ovacome, Avastin, available at: http://ovacome.healthunlocked.com/questions/590200/avastin accessed 26 February 2013 13 Department of Health, Cancer Patient Experience Survey: National Report 2011/12, August 2012 14 Department of Health, Cancer Patient Experience Survey: National Report 2011/12, August 2012 15 National Institute for Health and Clinical Excellence, Quality standard for breast cancer (QS12), September 2011 12