NCIN Conference Feedback 2015 Parallel Sessions Treatments (Black type is the topic; blue type are comments) The use of population and research data in the development of guidelines for cancer treatment Centralisation of services; Diagnosis and management of cancer; patient choice. Robotics used in Prostate surgery improved outcomes cost effective at >50 cases. The order of radiotherapy and chemotherapy in early breast cancer and its effect on outcome. Delayed treated influences outcomes. No difference in outcome at 57 months of F/up between chemo and Radiotherapy given first. Chemo more likely to be given first. Less local recurrence likely if Radiotherapy given first. Robotic surgery in Gynaecological oncology. Minimal access surgery (MAS) for endometrial cancer conserves fertility Better outcomes and quality of life, quicker recovery, <LOS Variation in the proportion of patients with lymphoma receiving radiotherapy (England 2009-2010). Data gathered from RT dataset. Radiotherapy dependent on oncologist present at MDT; take up influenced by distance from RT centre; large variations in guidelines. Treatment of stage 1 cervical cancer in England: results from the national audit of cervical screening. Detected and treated by either cone biopsy or simple hysterectomy; no chemo or RT (fertility sparing) for younger women. Older women more likely to receive Chemo or RT treated by stage not morphology. Regional variation in length of stay after major surgery for colorectal cancer Variation in LOS 55-80%; stay increased with age and A+ E admissions (sicker patients + co-morbidities, open surgery higher grade, complications and deprivation). Use of enhanced recovery protocol where possible. Where GPs had access to diagnostics access into secondary care was longer. (Survey 2009-2013). Changing Clinical Practice NCIN 2015 [1]
Decreasing time between head and neck cancer surgery to postoperative radiotherapy in a regional cancer centre Wales Introduction of one-stop clinics. Ensure all diagnostics ready for MDT. Access RT within six weeks. Doubled survival time. Using the National Radiotherapy (RT) Dataset within the National Cancer Data Repository to investigate patterns of use of radiotherapy in the management of surgically treated rectal cancer across the English NHS 2009 introduction of RT data set. Looked at site, attendances and intent (curative/palliative/neo-adjuvant/local recurrence). Use or RT decreases with age especially long courses, consideration of comorbidities. Dependent on local practice. Don t know what the correct use of RT should be! Ensuring rapid response for IV antibiotics for neutropenic patients experiencing suspected sepsis: Nurse initiated Patient Group Direction (PGD) improves patient outcomes and experience. Nurses administer first line anti-biotics. Competency gained by nurses before involved with process. Drugs Identifies. Audit of regime. Transition through phases of care: Building understanding of diversity in the cancer population through classification. Cancer patients; chronic illness may relapse/remit. Need appropriate care; pressure on services CNS involvement 1. Hot-line 2. Advice and guidance. (incl. long term effects) 3. Rapid access to service when needed. 4. No discharge. 5. Help with palliative care and EOL care. Survivorship Does the risk of critical illness among cancer patients make a significant contribution to cancer outcomes? A population based observational study of 118,571 adults for the Scottish Cancer Registry. Outcomes effected by; Stage of diagnosis. Cancer cell biology. Health of patient (co-morbidities). Quality of care and available resources. Transforming Cancer Follow-up programme. Northern Ireland Cancer Network Needs changing. Numbers of cancers being diagnosed increasing every year. Increased pressure on services. Project to change F/up care. Looked at unmet needs (40% patient reported) After care an after Thought! Professionals, Patients, Chief Medical Officer reviewed services and formulated a framework for Commissioning to provide quality after NCIN 2015 [2]
Inequalities care tailored to each patient. Approx 25% of patients will remain in routine F/up. All others have Supportive self-management incl. Treatment Summaries, a Health and Well-being programme/recovery package, signs and symptoms that prompt rapid access back into system, regular checks (e.g. mammography, PSA tests) set up. Direct support line and web site. Identified rapid re-access into service. Implemented for 58% patients. Audit demonstrated less anxiety, more patient confidence and control, better experience and satisfaction with the service. This has released over 3000 appointments in the Breast service. Ongoing implementation in Prostate service, hoped to move into Colorectal, Gynae, other Urology and Skin services. Characteristics of long-term survivors of Head and Neck cancer within the UK Biobank. HPV infections, smoking, high alcohol intake and poor diet lead to poorer outcomes in this group of patients. Those that gave up smoking and did vigourous exercise had improved outcomes. Testing and analysis of a risk stratified Computed Tomography scanning protocol for the follow-up of patient post curative resection of colorectal adeno-carcinoma Looked at Dukes 1, 2, 3 and 4 for access to use of CT. Keeping the customer satisfied? Findings from NCEPS about Patients and Research Opportunities. Looked at Research questions on National Cancer Patient Survey. Responses varied by Post-code, location of Trust. Would like to see a Buddying system for research patients, more patient involvement and sharing of good practice. Cancer Specific variation in emergency presentation by sex, age and deprivation across 27 common and rarer cancers. 56% of cancers diagnoses via emergency admissions of which there is 50% survival. Wide variation in cancer site. More men than women present. Deprivation is the most common influence of emergency presentation. There is a lack of awareness of symptoms for cancer. Psycho-social factors involved. The use of community group peer education models to reduce knowledge barriers in symptoms awareness for over 50 s and Bangladeshi population in Camden 35% premature deaths from cancer, late stage diagnoses. Looked at upper and lower GI patients. GP s secondary care, CRUK developed a training tool for Pharmacists and local Community NCIN 2015 [3]
personnel. Ran campaigns for the identified population. Well received by community more openness. Deprivation and Cancer: Does the choice of deprivation metric impact on age standardised incidence and mortality rates across the UK and the Republic of Ireland (RoI). Prime factors: lack of education, age and unemployment. Greater incidence and mortality. Site dependent. Looked at top four cancers and melanoma and gastric cancer. Findings from a systematic review: Cancer and people with a serious mental illness (SMI) Looked at patients with schizophrenia, bi-polar disease and depression. This group: Have a higher mortality Are not taken seriously Receive fewer interventions Get excluded from research Less likely to receive treatment Present late consequence poorer outcomes Tendency for patients with a SMI to die early Numbers of patients for this research are small? Reflection of the illness or service delivery. Is the deprivation gap for incidence, mortality and survival closing in Wales for the most common Cancers? Men tend to have a different focus on health than women. Pharmacies are now central to healthcare. Ethnicity and deprivation lead to an inequality of access to care. 25% of this group is diagnosed when admitted as an emergency. Dragon s Den 1. Donate your Data Research is being slowed or stopped by the complexity of the permissions needed to use data. We need your help to fix it. 2. Consumer research on the National Cancer Patient Survey more needs to be done for research. Patients can lead the way by helping devise more questions about research for the Cancer Patient Survey. 3. Public CancerStats provision of basic cancer statistics. This will be at a granular level to maximise its usefulness to the public. However the more granular the data the higher the risk of patient re-identification becomes. 4. Survival from Symptomatic ovarian and breast cancer in women in the UK: patient characteristics and symptoms reported in primary care linked to diagnosis and final outcome. Using GP and Cancer registry data to NCIN 2015 [4]
assess which symptoms may be associated with better or worse survival. It will examine which symptoms and which women could be most usefully targeted for awareness-raising campaigns; in order to diagnose cancer at the earliest possible stage. Plenary Sessions 1. Changing clinical practice. Importance of routine data and cancer registries What patients want from their data? The importance of data to the voluntary sector, for policy development and improving patient care. Technology and enhanced data extraction more questions can be answered. Use of routine data in the monitoring and evaluation of bowel screening. Reduction of disease mortality 10% (27% when corrected for participation) Improving cancer outcomes the role of audit for clinical and provider level data in improving lung cancer survival. Improvements in all headline indicators. Number of patients having surgical resection has doubled (2005-2012). Wide variation between providers in treatment rates and survival remain. Significant improvement of patients being alive after one year. The impact of linked data examples of benefits in practice. Provision of near real-time analysis of much of the patient journey, the quality of care and outcomes of all cancer patients treated in England will soon be available. 2. Role of Primary Care in Cancer Prevention, Screening and Early Diagnosis. International Cancer Benchmarking Partnership To what extent do provider delays affect outcomes? Delay matters patients have a poorer prognosis and outcomes. Late diagnosis leads to poorer outcomes. (More advanced stage, higher grade and different morphology) How can primary care data help set referral thresholds? Require a robust framework. GP direct access to investigations. Different thresholds are required for different groups. 3. International Issues International hazards of smoking and benefits of stopping. NCIN 2015 [5]
Smokers in adolescence or early adulthood are likely to have a10 yr loss in life expectancy if they continue to smoke. There is an avoidance of excess risk if they stop by 40. Hence the effect of smoking in early adulthood on mortality in middle age takes half a century to emerge. International cancer burden and trends. The role of diet and exercise. Excess BMI is a known risk for several cancers. 62% of adults were overweight by 2013 raising concerns on the impact on cancer. International cancer Benchmarking Partnership studying international variations in cancer survival Insights are helping partners to identify how they might improve cancer survival outcomes by optimizing cancer policies and services. Global surveillance of cancer survival (CONCORD) Widely disparate survival trends are probably attributable to differences in access to early diagnosis and optimal treatment. 4.Childhood, Teenage and Young Adult Cancers, Beyond Cancer Survival Patient s story of survival EUROCARE survival data: where the UK sits Survival and cure rates for childhood cancer in Europe have greatly improved over the past 40 years. The follow-up of 250,000 individuals treated for cancer when young. Questionnaire sent to TYA 5-year survivors about their health. Looking at risks beyond 50yr survival from primary tumours or other causes, (heart disease, stroke, other cancers etc.) SIGN Guidance 5yr survival rate 80% for those diagnosed between 2001-2005. Advances in treatment regimes and supportive care. Late effects from treatment may appear several years later. Survivors may benefit from targeted screening, detection and treatment. Guidelines that each survivor has access to an appropriate key worker (need for training programme and career structure) for specialist in long-term follow-up. (Monitor female childhood cancer patients who received radiation to chest for Breast cancer). 5. Future Challenge of Cancer Services Patient lead treatment. Lifestyle changes; exercise and diet. Personal treatment plans. It is difficult to change behaviour. Psycho-social aspects of cancer. Rare cancers lack of support use on-line sites. Possible use of genomic profiling. Possible to link in with generic cancer support groups. NCIN 2015 [6]
Shortage of CNS: many due to retire in the next five years. There needs to be an effective model. Since demise of Cancer Networks the focus on CNS has lessened; the number of cancer patients is increasing. There is no forum to share best practice. Access to data HSCIC (health and social care information centre) not supported or resourced adequately and not funded appropriately. (Opinion differs to Dragon s Den discussion). Cancer service Capacity in system. Provision of service. Prevention protocols. Patients and carers as partners in care. Patients need to ask the right questions. Many of the new drugs are monoclonal anti-bodies. What will be the long term affect on the human immunological system? NCIN 2015 [7]