CONSEQUENCES OF CANCER TREATMENTS: A POSITION STATEMENT

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2 CONSEQUENCES OF CANCER TREATMENTS: A POSITION STATEMENT 1 Summary Introduction Background Aim Principles Consequences of cancer treatment Current approaches across the LCA Mapping current service provision: identifying the gaps Conclusions of current service provision mapping exercise Service provision: bridging the gap Optimising LCA-wide management of the consequences of cancer and its treatment Recommendations... 7 References... 9 Appendix 1: Consequences of cancer and its treatments Appendix 2: Scoping existing services dealing with consequences of cancer treatment across the LCA 12 Appendix 3: Key principles for managing consequences of cancer and its treatments

3 SUMMARY 1 The number of cancer survivors continues to increase on a yearly basis in the UK and as a result, many more people experience consequences of their cancer and its treatment. Consideration of those consequences earlier on in the pathway, together with systematic assessment and management plans, are required to address these appropriately. This document outlines recommendations to achieve this across the London Cancer Alliance (LCA). A suggested work plan is included which is designed to be used by all healthcare professionals involved in care of cancer patients. 2 A cancer survivor is defined in the UK as someone who is living with or beyond a cancer diagnosis. Enormous improvements in cancer care and treatment mean that the number of UK cancer survivors is increasing. In London, the number of new cancer cases is predicted to increase from approximately 27,000 in 2002, to 28,500 in 2022 (Coupland et al. 2009). The overall number of cancer survivors in the UK is predicted to reach 4 million by 2030, an increase of 3% per annum (Maher et al, 2011). The success of cancer treatments is changing the perception of cancer, with increasing reference to cancer as a long termcondition. One in five cancer survivors can expect on-going physical and/or psychological problems following cancer treatment. These occur both as a consequence of having had a cancer diagnosis and as a result of anticancer treatment. As an agreed definition of consequences of cancer and its treatment is lacking in the literature, the following definition will be used in this paper: the wide range of long-term physical and psychological changes that seem to be associated with cancer and its treatment, however long ago the diagnosis and the treatment might have been given (Macmillan, 2013). This LCA position statement describes the importance of considering the consequences of cancer and its treatment at different points in the cancer pathway. It aims to include the consideration of consequences of cancer and its treatments as a part of clinical practice within the framework of cancer survivorship. This document is informed by work already undertaken by a range of UK organisations to improve the quality of life of cancer survivors. It has been considered by expert practitioners across the LCA, who agreed the themes and elements contained within. 3 A study exploring the unmet needs of patients with breast, prostate, colorectal, and gynaecological cancer and non-hodgkin's lymphoma reported that 30% had more than five unmet needs at baseline. For 60% of that 30%, this was not improved six months after treatment (Armes et al., 2009; NCSI, 2010). As the philosophy of follow-up in cancer services becomes increasingly directed towards open access and self-management, it is important that those affected by cancer, as well as primary care professionals, are aware of the potential consequences of cancer and its treatments. Furthermore, many patients are discharged from routine follow-up at five years following their initial treatment with long-term consequences occurring beyond this time. It is therefore essential that there is a clear strategy across the LCA to guide local assessment and management of these possible consequences. 3

4 CONSEQUENCES OF CANCER TREATMENTS: A POSITION STATEMENT 4 This document endeavours first, to underpin a general philosophy that consequences of cancer and its treatment should be considered at all transition points in the cancer patient s pathway. Secondly, it explores current services and suggests models of service development and provision. Finally, it makes recommendations on how this paper should be implemented. 5 The principles of care within this document add to the standards expected across the LCA to improve patient-centred outcomes of cancer treatments, survivorship and patient experience. These principles provide a generic benchmark for considering consequences of cancer and its treatments which are applicable to all healthcare professionals involved in cancer care regardless of area of practice, setting or patient group. The document includes the following elements integral to the management of consequences of cancer treatments: clinical/direct care practice research into preventing, minimising, predicting, assessing and managing consequences of cancer treatment leadership and collaborative practice improving quality developing referral and management pathways developing healthcare professionals This work will be further informed as survivorship intelligence develops, particularly in better understanding the population with unmet needs, which is critical to improving outcomes and understanding the costs of meeting those needs. A document about service planning and provision to meet the needs of cancer survivors has just been published (Macmillan, 2013). 6 There is increasing recognition that survivors of adult cancer face lifetime health risks dependent on their cancer, cancer treatment exposures, comorbid health conditions, genetic predispositions, and lifestyle behaviours (Macmillan, 2013; Oeffinger & McCabe, 2006). The importance of monitoring for late and longer-term consequences of cancer and its treatments has been highlighted in the literature (Ganz et al., 2012; Richards et al., 2011). While not exhaustive, Appendix 1 shows possible problems encompassing consequences of cancer treatment for adult cancer survivors. The LCA s capacity to deal with the consequences of cancer and its treatment must reflect the fact that up to a third of cancer survivors will develop these. 7 At the time of diagnosis, when discussing treatment options, healthcare professionals routinely discuss the acute side effects expected due to anti-cancer treatment, e.g. risk of infection, nausea, vomiting, diarrhoea, and hair loss. Other less common or longer term consequences are perhaps less likely to be discussed. 4

5 MAPPING CURRENT SERVICE PROVISION: IDENTIFYING THE GAPS It is currently not possible to accurately predict the nature and likely onset of longer term consequences of cancer and its treatment. For example, all the risk factors for developing a particular side effect are not fully understood. This limits information giving, monitoring and management of potential problems, not only during routine follow-up, but also 5-10 years later. Difficulty in predicting prevalence of cancer consequences has made it difficult to plan services. Current provision has been developed in response to local initiative, and an LCA-wide approach has not been developed to date. 8 To assess the current service availability and their associated referral pathways, a scoping exercise across the then 17 service providers in the LCA was conducted (see Appendix 2). A mapping tool was sent to all Trusts and responses were received from nine multidisciplinary teams (MDTs) at five trusts, which included the four cancer centres. This means that any conclusions should only be applied to the cancer centres and care should be taken with extrapolating the results to all, now 16, providers. The respondents stated that they routinely discussed the consequences of cancer treatments. Only six reported that most and possibly all cancer MDTs considered consequences of cancer treatments, and it is not known what this constituted or to what extent this shaped treatment decision making and care planning. The feedback indicated that holistic needs assessment (HNA) is widely used. In addition, most teams also use a specialist tool to more accurately assess any consequences of cancer or its treatments. Most teams consider consequences of cancer and its treatments in the wider context and at different stages of the pathway There is general acknowledgement and agreement that consequences are widespread and include a wide variety of conditions (see Appendix 1). The survey showed that most teams refer patients to general services though some also have cancer specific services aimed at managing consequences of cancer treatments. These included counselling, physiotherapy and nutritional support. All responding teams indicated they have access to a dedicated cancer psychological support service. Referral pathways for the most common consequences had been established. Most had referral pathways for pain, bone health, urinary problems and financial support. Only a limited number of teams indicated that they knew of specific post-treatment clinical protocols or referral pathways for the management of other consequences of cancer and its treatment, e.g. for endocrinology, cardiology, neurology (including memory clinics), dermatology, psychosexual counselling services, fertility services or lymphoedema services. 8.1 Conclusions of current service provision mapping exercise The survey findings highlight that the consequences of cancer and its treatment are being considered in most responding trusts across the LCA. They are being considered at different stages of the pathway but tumour -and treatment-specific protocols are lacking, particularly outside cancer centres. There is a lack of clarity regarding referral pathways for less common consequences although these are available by utilising general specialist services. 8.2 Service provision: bridging the gap Four strategic developments could help to address identified gaps in service provision: 1. Use of risk stratification pathways and treatment summaries to enable proactive management of anticipated consequences of treatment (Figure 1) 5

6 CONSEQUENCES OF CANCER TREATMENTS: A POSITION STATEMENT 2. All follow-up care should incorporate mechanisms to enable prompt detection and assessment of consequences of cancer and its treatment 3. Review of local centre provision to enable management of the common consequences of cancer and its treatments 4. Development of defined pathways to refer to specialist centres for the more unusual or complex effects. Figure 1 Patient directed collaboration for managing consequences of cancer and its treatment 9 - As outlined in Taking action: managing the consequences of cancer treatment (NCSI, 2013), key principles should be adopted in cancer pathways for all cancer types. These are presented in Appendix 3 and represent a more comprehensive approach to survivorship care aimed at both minimising and optimally managing, consequences of cancer and its treatment. Intervention starts with prevention of consequences. A treatment summary will inform the patient and their GP about which consequences of cancer and its treatment are applicable to them, and which signs and symptoms may be signs of recurrence. This enables the person to identify symptoms and thus promotes self-management. Work led by the National Cancer Survivorship initiative (NCSI) identified the necessary themes and headings of a treatment summary. Work within the LCA will lead the development of tumour specific content. The treatment summary is key to helping both the patient and professional to identify consequences of cancer and its treatments. If a problem is detected, its management should be guided by collaborative care protocols, including both primary and secondary care. The symptom can be investigated and managed by a GP or a specialist, depending on its nature. Good communication between both specialist services and primary care to facilitate on-going management and support is essential. The LCA Survivorship Group suggests a risk stratification management approach to the management of consequences of cancer and its treatments, where the appropriate place of management is determined by the prevalence of a specific consequence in England, per annum. This approach and modelling was developed within the NCSI Consequences of Treatment workstream. Three levels are identified: 1. Consequences (e.g. fatigue, osteoporosis) which affect hundreds of thousands of cancer survivors, which can be managed in the community by the GP and with supported self-management approaches. 2. Consequences which affect tens of thousands of people after cancer treatment that require proactive management by health services, both primary and secondary care. 3. Rare consequences which affect only several hundred people. These require specialist services. 6

7 RECOMMENDATIONS To support this, clear referral pathways need to be set up in liaison with other specialist services (e.g. cardiology, endocrinology, urology, gastroenterology, physiotherapy etc.) and integrated into the NCSI Adult Survivorship Pathway ( 10 As a result of the mapping findings and the growing evidence base, the following recommendations are made to a) support the routine consideration and management of the consequences of cancer and its treatment for all patients treated within the LCA area and b) to improve communication between primary and secondary care: Disseminate this document to the tumour specific pathway groups in the LCA and via the LCA website. The NCSI Treatment Summary, as an integral part of the recovery package, should be adopted in all tumour pathways to promote supported self-management. Work by the LCA Survivorship Group to clarify gaps in knowledge about how the consequences of cancer and its treatment are managed in non-responding trusts. Consideration by all LCA tumour specific pathway groups oftheir role in supporting and communicating the potential role of primary care in managing the consequences of cancer and its treatment. Development of guidelines regarding risk assessment of the specific consequences of cancer and its treatments. Review patient information at tumour pathway group level to ensure that appropriate information is available at multiple time points in the cancer pathway (including at consent to cancer treatment) on the risks of long-term consequences and the identification of symptoms related to these. To develop referral pathways and management strategies for cancer consequences in liaison with GPs/community teams, oncology teams, specialist services and commissioners. To advocate further research into the prevention, risk stratification and management of consequences of cancer treatment. In addition to the above, the following work plan is suggested to support the implementation of the recommendations Suggested work plan 1. All tumour specific pathway groups to ensure that both acute and longer term consequences are discussed at the time of diagnosis and treatment. Information to support this may need to be developed, in close collaboration with the patient information workstream. Consequences which are not specific to a single tumour should have information developed through the survivorship pathway group in the first instance. 2. Potential consequences of treatment should be stated in the treatment summary. Pathway groups will need to prioritise these consequences to ensure there is a balance between providing information to enable self-management and monitoring, and providing an unwieldy list covering every eventuality. 3. Survivorship pathway group to identify referral systems to support consequences of treatment. This should include services in community and other trusts/centres and where there is unmet need. 7

8 CONSEQUENCES OF CANCER TREATMENTS: A POSITION STATEMENT 4. LCA Survivorship Group to use existing and future mapping, nationally available data, such as the national CPES (Cancer Patient Experience Survey), national CNS and AHP mapping, and other relevant sources, to outline workforce development, resources required to support unmet need, patient information provision and teaching/training/research initiatives. 5. Reporting to the LCA Survivorship Group to enable an overview of LCA-wide progress will support shared learning and will allow the Survivorship Group to monitor and respond to progress appropriately. 8

9 REFERENCES Armes J, Richardson A, Crowe M, et al. Patients supportive care needs beyond the end of treatment: a prospective and longitudinal survey. J Clin Oncol 2009; 27: Coupland V, Okello C, Davies E, Bray F et al. The future burden of cancer in London compared with England. J Public Health 2010; 32: Darby S, Ewerts M, McGale P, Bennett A et al. Risk of Ischemic Heart Disease in Women after for Breast Cancer. N Engl J Med 2013; 368: Department of Health England. National Survivorship Initiative: Vision 2010: 77pp. Ganz P, Earle C & Goodwin P. Progress in cancer survivorship care and research. Journal of Clinical Oncology 2012; 30: Greenfield D, Walters S, Coleman R, Hancock B, et al. Health Related Quality of Life, Self-esteem, Fatigue and Sexual Function in Young Men after Cancer: a Controlled Cross-Sectional Study. Cancer 2010; 116: Heirs M, Suekerran S, Kate L, Slack R et al. Models of Care for Follow up of Childhood Cancer Survivors: A Systematic Review. Macmillan Cancer Support 2010: 52pp. London Cancer Alliance. Strategic Priorities : 8pp. Maher J & McConnell H. New pathways of care for cancer survivors: adding the numbers. Br J Can 2011; 105: S5-S10. National Cancer Survivorship Initiative. Living with and beyond cancer: taking action to improve outcomes. Macmillan & the Department of Health 2013: 132 pp. Macmillan Cancer Support. Throwing light on the consequences of treatment. Macmillan 2013: 122pp. Oeffinger K & McCabe M. Models for Delivering Survivorship Care. Journal of Clinical Oncology 2006; 24: Paskett E, Dean J, Oliveri J & Harrop J. Cancer-related lymphedema risk factors, diagnosis, treatment, and impact: a review. J Clin Oncol 2012; 30: Richards M, Corner J & Maher J. The National Cancer Survivorship Initiative: new and emerging evidence on the ongoing needs of cancer survivors. Br J Cancer 2011; 105(S1): S1 S4. Ruddy K. & Partridge A. Fertility (male and female) and menopause. Journal of Clinical Oncology 2012; 30:

10 CONSEQUENCES OF CANCER TREATMENTS: A POSITION STATEMENT Possible consequence Clinical manifestation Associated cancer treatment Bone problems Vit D deficiency Loss of bone density Osteonecrosis Cardiotoxicity Cardiac failure Cognitive changes Communication issues Core senses loss Dental problems Memory problems Increased risk of dementia Voice, speech and language disorders Eye problems Change in taste or smell Hearing problems Dental abscess Osteonecrosis jaw Bisphosphonates Emotional and psychological impact Anxiety Body image problems Depression Fear of cancer recurrence Fear of dying Endocrine problems Fatigue Adrenal disorders Changes in thyroid function Steroid induced diabetes Sleeping problems Tiredness Unable to perform daily activities Steroid therapy Fertility problems Unable to conceive naturally Gastrointestinal symptoms Change in bowel habit Steroid therapy Other medications 10

11 Hormone related changes Early menopause Hot flushes Loss of libido Vaginal dryness APPENDIX 1: CONSEQUENCES OF CANCER AND ITS TREATMENTS Lymphoedema Mobility/exercise issues Nutritional issues Pain Peripheral neuropathy Pulmonary function changes Relationship problems Secondary malignancy Sexual concerns Skin changes Socioeconomic impact Urinary problems Limb swelling Lymphangitis Reduced core fitness Reduced mobility Dysphagia Dumping syndrome Malnutrition Vitamin deficiency Weight loss Weight gain Discomfort Soreness Stiffness Severe pain Xerostomia Burning sensation Reduced sensation Parasthesia Dyspnoea Pneumonitis Reduced lung function Psychological impact on significant relationships Increased risk of new cancer diagnosis Erectile dysfunction Loss of libido Psychological impact Vaginal stenosis Vaginal dryness Dry skin Facial disfigurement Scarring Financial costs Reduced social activity Return to work problems Change in urinary function Ivor-Lewis oesophagectomy All cancer treatments Steroid therapy 11

12 CONSEQUENCES OF CANCER TREATMENTS: A POSITION STATEMENT Nine out of a possible 17 service providers participated in the scoping exercise. Sixteen questionnaires were returned (n=16), half from specialist cancer centres and half from other providers. While specialist cancer centres have more direct access to specialist services than general hospitals may have, general hospitals indicated clear referral pathways to access services in specialist centres. Yes left blank No 1. Consequences of cancer treatments are routinely discussed: 2. Most and possibly all cancer MDTs consider consequences of cancer treatments but it is not known what this includes and to what extent this is discussed. 3. The holistic needs assessment (HNA) is used widely. 4. Most teams also use another specialist tool to assess consequences of cancer treatments: Other tools mentioned were: FACT-BMT (QoL assessment after bone marrow transplantation)- EPIC (Expanded Prostate Cancer Index Composite) IPSS (International Prostate Symptom Score) GSRS in PROMS format (Gastro-intestinal Symptom Rating Score) CSS (Constipation Scoring System) 5. Most teams consider consequences of cancer treatments in the wider context as well as in their own specialty. 12

13 APPENDIX 2: SCOPING EXISTING SERVICES DEALING WITH CONSEQUENCES OF CANCER TREATMENT ACROSS THE LCA 6. Consequences of cancer treatments are considered at different stages of the cancer pathway from diagnosis onwards through to follow-up. 7. There is general acknowledgement and agreement that consequences are widespread and include a wide variety of conditions (see table 1 main document). 8. Most teams link in with general services but also have cancer some specific services to manage consequences of cancer treatments (mostly psychological support) 9. Several teams indicated they had specific post treatment clinical protocols or referral pathways for the management of consequences of cancer treatment 10. In addition, most teams demonstrated they have established referral pathways for the most common consequences in use. The consequences that have the least straightforward referral pathways include cardiotoxicity and pulmonary changes, fertility problems, endocrine problems and risk of secondary malignancies. 11. All teams indicated they have access to a dedicated cancer psychological support service. 13

14 CONSEQUENCES OF CANCER TREATMENTS: A POSITION STATEMENT Principles Prevent or minimise consequences Inform patients of potential consequences Identify potential patients at risk Assess potential consequences Support patients through local care pathways Monitor patients at risk of long-term consequences Approach Healthier lifestyle choices Improved imaging Minimally invasive surgery Targeted radiotherapy The use of modern drugs Introduce the possibility of consequences at diagnosis and treatment discussions Targeted information in the treatment summary (rare, intermediate, common in occurrence) Targeted information in the treatment summary Evidence-based guidance on high risk groups Empower patients to self-identify symptoms Regular Holistic Needs Assessment Patient recorded outcome measures linked to symptom assessment Self-management GP follows the guidance in the treatment summary Cancer treatment follow-up services Specialist referral pathways Self-management GP cancer review Cancer treatment follow-up services Specialist referral pathways Surveillance plans 14