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BTOG 2016 “ Can the lung cancer CNS improve cancer outcomes?”

BTOG 2016 “ Can the lung cancer CNS improve cancer outcomes?”. Angela Tod Professor of Older People and Care School of Nursing and Midwifery University of Sheffield. Outline. Who is a Lung Cancer CNS? Why ask the question? What is the evidence? Reflections for the future.

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BTOG 2016 “ Can the lung cancer CNS improve cancer outcomes?”

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  1. BTOG 2016“Can the lung cancer CNS improve cancer outcomes?” Angela Tod Professor of Older People and Care School of Nursing and Midwifery University of Sheffield

  2. Outline • Who is a Lung Cancer CNS? • Why ask the question? • What is the evidence? • Reflections for the future

  3. “Can the lung cancer CNS improve cancer outcomes?” Who is a Lung cancer CNS?

  4. LCNS A nurse specialising in the care of people diagnosed with lung cancer or mesothelioma (NLCA Report 2015. P51) …. It’s a bit more complicated than that!

  5. Clinical Nurse Specialists “Specialist” isn’t just about the clinical area of practice, it is also about the level of practice. • Clinical Nurse Specialists are advanced practice nurses who work as part of a multidisciplinary team. • CNSs provide high quality, patient-centred, timely and cost-effective care. • They provide tailored care depending on the patient’s level of need. • They also provide education and support for patients to manage their symptoms. • CNS spend about time in: • Clinical activity (60%) • Education (17%), • Management activity (19%) • Research (4%) • Patient outcomes can be improved through all 4 areas of activity • Capturing impact will involve looking at all 4 areas of activity Ball (2005). Maxi nurses: advanced and specialist nursing roles. https://www.rcn.org.uk/__data/assets/pdf_file/0006/78657/002756.pdf RCN (2012) RCN Factsheet Specialist nursing in the UK February 2013 http://www.rcn.org.uk/__data/assets/pdf_file/0018/501921/4.13_RCN_Factsheet_on_Specialist_nursing_in_UK_-_2013.pdf RCN (2010) Specialist nurses: changing lives, saving money. http://www.rcn.org.uk/__data/assets/pdf_file/0008/302489/003581.pdf Fletcher M (2011) Assessing the value of specialist nurses. Nursing Time., http://www.nursingtimes.net/nursing-practice/clinical-zones/assessing-the-value-of-specialist-nurses/5033220.article

  6. Why do we have Clinical Nurse Specialists? • Person-centred care. • Complex conditions, co-morbidities, treatments. • Bio-psycho-social needs. • Patient pathways, preventing fragmentation and promoting continuity. • Workforce • Cost

  7. Factors Influencing Success • What influences whether a CNS role is successful • Patient focus • Prior consultation • A shared vision • Protocols and pathways • Organisational support • Education • Evaluation Read et al Exploring New Roles in Practice (ENRIP) 2001, University of Sheffield http://www.shef.ac.uk/content/1/c6/01/33/98/enrip.pdf

  8. LCNS Characteristics • National variation • Grade and education • LCNS team: size and skill mix • Local demographics and geography • Nature and size of the Trust • Historical development of the MDT and LCNS • These factors will impact on how the LCNS works and how they have impact on outcomes e.g. pathway intervention, phone/clinic/home, treatment and or palliative care.

  9. “Can the lung cancer CNS improve cancer outcomes?” Why ask the question?

  10. ... Because access to a LCNS is recommended – and valued! NLCA UKCC NICE Roy Castle Lung Cancer Foundation HSJ http://www.hsj.co.uk/download?ac=1298457

  11. … and threatened Cost – financial pressure Dilute expertise – downgrade, replace at lower grade, support worker Ward duties Complexity of care (systems, organisations, pathways, new treatments) Pathway focus (diagnosis / palliative)

  12. Nursing Standard Dec 9th. 30(15) p10

  13. With the ongoing financial pressures in the NHS, we are concerned that LCNS posts may be threatened in some areas. As this report illustrates, LCNSs are essential to the delivery of high quality care and improved outcomes for patients with lung cancer. Posts must therefore be maintained and, where possible, the number of LCNSs increased so that all patients with lung cancer can have access to a LCNS. Roy Castle Lung Castle Foundation (2013) Understanding the Value of Lung Cancer Nurses http://documents.roycastle.org/UnderstandTheValueOfLungCancerNurseSpecialists_V03.pdf On average there is only one lung cancer nurse in England for every 161 people diagnosed with lung cancer, compared to 117 people per breast cancer nurse. (Macmillan 2014 http://www.macmillan.org.uk/Documents/AboutUs/Research/ImpactBriefs/ImpactBriefs-ClinicalNurseSpecialists2014.pdf)

  14. UKLCC TEN YEARS ON IN LUNG CANCER: THE CHANGING LANDSCAPE OF THE UK’S BIGGEST CANCER KILLER Variation: The number of patients assigned a lung cancer clinical nurse specialist still varies significantly across England and Wales from 36 to 100 per cent. Vision: Numbers of lung cancer clinical nurse specialists (CNSs) should be increased to a level where no trust has less than two CNSs and the case load is no more than 100 new patients per year, in order to ensure patients’ care is fully integrated and that they are supported throughout their care pathway. http://www.uklcc.org.uk/files/Ten%20years%20on%20in%20lung%20cancer.%20The%20changing%20landscape%20of%20the%20UK's%20biggest%20killer.%20FINAL.pdf

  15. NLCA: 2014 • After an increase in access to LCNSs in 2014 access fell. • In 2013 84% of patients diagnosed were seen by an LCNS. In 2014, only 78% were seen. • Nine organisations report that fewer than 25% of their patients see an LCNS. (Data completeness may be an issue and 78% may be an underestimate) • As in previous years, there was an association between access to nurse specialists and receipt of anticancer treatment. 2014, 63.6% of those who saw an LCNS received anticancer treatment, compared with 24.6% of those who did not see a LCNS. NLCA Report 2015: http://www.hqip.org.uk/public/cms/253/625/19/354/2015-12-02%20National%20Lung%20Cancer%20Report.pdf?realName=9wvAlU.pdf

  16. NLCA Report 2015 p47: http://www.hqip.org.uk/public/cms/253/625/19/354/2015- 12-02%20National%20Lung%20Cancer%20Report.pdf?realName=9wvAlU.pdf

  17. Is it feasible to have as a NLCA indicator that 90% of patients should be seen by a LCNS? NLCFN Survey

  18. “Can the lung cancer CNS improve cancer outcomes?” What is the evidence? • Design • Outcomes • Findings • Impact • Factors influencing impact

  19. What is the evidence? Design • Hierarchy of evidence • RCT • Observational research • Qualitative research • Economic evaluation BUT • Ethics • Local variation • Research question

  20. What is the evidence? Outcomes • Service access: • Increasing access to treatment • Mortality and morbidity • prevention of deterioration • Self-management (survivorship) • Symptom management, prevention of deterioration • Palliative and end of life • Advanced care planning, place of death, symptom burden. • Patient experience (Care quality and safety, personalised care) • Hospital readmission, patient satisfaction, • Cost effectiveness and efficiency • A systematic review of the cost-effectiveness of Clinical Nurse Specialist: interventions for patients with advanced illness Seymour et al

  21. Moore et al (2002) BMJ 325 1-7 • http://www.bmj.com/content/325/7373/1145.full.pdf+html • Lung cancer patients post treatment. Nurse-led follow-up • Acceptable intervention • Intervention group: dyspnoea less severe (3 months), improved emotional functioning, less peripheral neuropathy (12 months) • Better satisfaction scores (3,6,9 months) • Nurse led follow up = safe, acceptable and cost effective.

  22. How is impact achieved Overview of the pathway Analysis Efficiency Leadership Service redesign/service improvement Workforce Patient experience http://www.hsj.co.uk/download?ac=1298457

  23. Increasing access to treatment Exploring the impact of lung cancer specialist nurses on access to anti-cancer treatment: an exploratory case-study Funded by General Nursing Council Trust (Tod et al) Tod AM, Redman J, McDonnell A, Borthwick D, White J. (2015) Increasing access to lung cancer treatment: The role of the lung cancer nurse specialist. BMJ Open. 5. e008587. doi:10.1136/bmjopen-2015-008587 Does proactive care management by a clinical nurse specialist improve outcomes for patients with lung cancer? A comprehensive analysis of treatment and health outcomes using linked national data sources Funded by DimblebyCancer Care (Tata et al) Khakwani A, Tata LJ, Tod AM et al (2015) Which Patients Are Assessed by a Lung Cancer Nurse Specialist: A UK National Lung Cancer Audit Study IASLC 16th World Conference on Lung Cancer, Denver Oral 43: Sept 9th 2015.

  24. Exploring the impact of lung cancer specialist nurses on access to anti-cancer treatment Aims • Understand how the role of the LCSN contributes to improving patient outcomes and access to anti-cancer treatment; • Inform decisions on the allocation of LCSN resources in reducing treatment inequalities; • Provide insight to how impacts of the LCSN resource can be maximised; and • Provide insight to the effectiveness of the LCSN role.

  25. Methods • A multiple case study design: semi-structured interviews, observation and Framework Analysis techniques. • Four LCNSs, comprised the ‘cases’. (Mix CNS/treatment access) • Interviews with CNS + 24 clinicians who worked with the LCNS • 60 lung cancer multidisciplinary team (MDT) members and coordinators were observed in the MDT meeting. Tod AM, Redman J, McDonnell A, Borthwick D, White J. (2015) Increasing access to lung cancer treatment: The role of the lung cancer nurse specialist. BMJ Open. 5. e008587. doi:10.1136/bmjopen-2015-008587

  26. Role in MDT • Co-ordinatingBrokering • Linking Navigating • Collaborating Opening doors • Communicating Negotiating • Bypassing • Advocacy • Evidence Expert Practitioner Flexible Patient-focused Holistic Autonomous Adaptable Leadership Maturity Timeliness Resilience Confidence Diplomatic Entrepreneur Managing-uncertainty Thinking-ahead Expertise Advocate Experienced

  27. Findings: Patterns of Working Patient pathway Relationships

  28. Impact on Treatment Access • Assessment • Referral • Symptom management • Performance status • Optimizing respiratory function • Lifestyle advice • Resolving diagnostic overshadowing • Co-ordination

  29. Assessment "LCNS1 and LCNS2 a week or two later may have been in touch with the patient and they may have made a stonkingly good recovery from their pneumonia or whatever, and then things open up again and they do become maybe fit for anti-cancer treatment, and so they’ll get the patients chivvied along to the relevant clinic so that they can be offered more active treatment". (Case Study 1 Medical Consultant) The LCNS as the hub of the MDT "I guess what they are is they are the primary point of contact, aren’t they, for patients and families, as they coordinate and go through their treatment". (Case Study 2 Medical Consultant 2) "I mean they’re definitely the kingpins in the whole process…. patients always speak highly of them and it’s always that they know they’re not just being number crunched through [the service], there’s somebody at the end of the phone who can speak to them. Often doctors aren’t the ones they want to speak to and they’ve always got the liaison number to phone up to, so it’s a feeling of importance and a feeling of worth and a feeling of not being left alone with a condition is one of the most important roles". (CS3 Medical Consultant 2)

  30. Advanced Practice "They’re better at sort of assessing functional status, performance status than a lot of people, and quite often they’ve seen them in their own home. And they quite often can advocate and say look I know you said this person’s performance status two, but I saw them a few days ago, yeah, he’s out of bed, but, you know, he sits in his chair or he walks back from one room to another” (Case Study 3 Specialist Registrar 1) Symptom management "I suppose what we try to constantly encourage is that patients do try and improve their general health, if we can manage symptoms, get them feeling fitter, then there’s always is an opportunity to consider treatment if that’s an option. So we’re very proactive in that". (Case Study 1 LCNS) "...we might see a patient in clinic, do the home visit, realise that they actually are quite fatigued, but the fatigue is because they’ve lost their appetite, so by improving on symptoms, by improving their appetite, which ultimately would improve fatigue, by just introducing a small dose of steroids might bring their fitness level up to a state where they’re then able to get anticancer treatment. So again it’s about that holistic assessment and understanding the disease as well and knowing what works..." (Case Study 3 LCNS)

  31. CNS Activities and Impact (National Cancer Action Team (2010) Excellence in cancer care. The contribution of the CNS http://www.macmillan.org.uk/Documents/AboutUs/Commissioners/ExcellenceinCancerCaretheContributionoftheClinicalNurseSpecialist.pdf) Using and applying technical knowledge of cancer and treatment to oversee and coordinate services, personalise ‘the cancer pathway’ for individual patients and to meet the complex information and support needs of patients and their families. Acting as the key accessible professional for the multidisciplinary team. Undertaking proactive case management and using clinical acumen to reduce the risk to patients from disease or treatments. Using empathy, knowledge and experience to assess and alleviate the psychosocial suffering of cancer including referring to other agencies or disciplines as appropriate. Using technical knowledge and insight from patient experience to lead service redesign, to implement improvements and make services responsive to patient need. (Macmillan 2014 http://www.macmillan.org.uk/Documents/AboutUs/Research/ImpactBriefs/ImpactBriefs-ClinicalNurseSpecialists2014.pdf)

  32. Work left undone.... A survey of 100 lung cancer nurses from across the UK (RR78%) examined the perception of the work left undoneagainst best practice guidance, caseload size, workload and other factors. 67 of 78 respondents perceived they left work such as proactive management (52) undertaking holistic needs assessments (46) providing appropriate psychological care (26) and meeting information needs (16). Proactive management is linked to better outcomesfor lung cancer patients e.g. survival, quality of life and end of life decision making. A substantial number of the specialist nurses felt that factors such as caseload and organisational factors inhibited this. Leary A, White J, Yarnell L. (2014) ,The work left undone. Understanding the challenge of providing holistic lung cancer nursing care in the UK European Journal of Oncology Nursing 18 (2014) 23-28

  33. Which Patients Are Assessed by a Lung Cancer Nurse Specialist: A UK National Lung Cancer Audit Study • The primary aim: to quantify the relationships between LCNS activity and patient care in terms of access to treatments and clinical outcomes. • Initial analysis: Examine how access to a LCNS varies by: • patient features (age, sex, stage, performance status, socioeconomic status, route of admission) • National Health Service (NHS) Trust characteristics (LCNS whole time equivalent, salary grade of LCNS and patient caseload). AamirKhakwani, Laila J Tata et al University of Nottingham

  34. Databases • National Lung Cancer Audit Database (2007 – 2011) • Patient features (age, sex, performance status, socioeconomic status, cancer stage) • Dates (date first seen by a lung physician, date of diagnosis, death, MDT discussion date) • Trust and network information • Comorbidity (linked with Hospital Episode Statistics database) • National Cancer Action Team (NCAT) survey data 2011 • Survey to look at the changes made by the NHS in employment, distribution and role of staff to improve cancer patient experience • Staff employment position • Number of specialist nurses in England – all cancer groups • Whole time equivalent (37.5 hours/week) • Salary grade

  35. Results Total 128,124 patients first seen between 1st January 2007 and 31st December 2011 63% Assessed, 6% not Assessed & 31% missing data Data on 321 LCNS across 146 trusts

  36. Who is assessed by a LCNS? Worsening Performance Status Age >75 years Stage Emergency admission Sex Co-morbidity Socioeconomic status Less likely to be assessed More likely to be assessed Treatment Sx, Cx & Rx Trust size and Caseload We used multinomial logistic regression and the results are represented in relative risk ratios (RRR) which accounts for several patient features

  37. At what point was the patient assessed? LCNS salary band 7&8 Age >75 years Treatment Sx & Cx Emergency admission Referred from Consultant Less likely to be assessed before/at diagnosis More likely to be assessed before/at diagnosis

  38. Conclusion Older patients with poor performance status, multiple co-morbidities are less likely to be assessed by LCNS Active approach to patients receiving treatment – patients receiving treatment assessed more and before/at diagnosis LCNS caseload is weighted towards patients receiving treatment, rather than those with palliative care needs. The CNS may be instrumental in ensuring appropriate referral to palliative care. In Trusts where CNS team includes Band 7&8 patients are more likely to be assessed before or at diagnosis.

  39. “Can the lung cancer CNS improve cancer outcomes?” Some reflections: • Maximizing impact? • Research

  40. Key messages • Role: LCNS can have an impact on patient outcomes but certain factors will maximize that impact, including: • Having a shared vision of the LCNS role in MDT? • Patient pathway • Diagnosis and/or palliative/end of life • Workload and skill mix • Using local and published evidence as a tool for development and role definition. • Including seniority and case management in the team • Evidence: Look for opportunities to have robust evidence of impact to inform role: • Focus on impact – not just soft outcomes • Economic evaluations - demonstrate the added value of having LCNS has in the workforce/MDT

  41. References Ball (2005). Maxi nurses: advanced and specialist nursing roles. https://www.rcn.org.uk/__data/assets/pdf_file/0006/78657/002756.pdf Brummell S, Tod AM, McDonnell A, Guerin M, Beattie V, Ibbotson R. (2015) Emerging roles in lung cancer care: an exploration of the work of unregistered practitioners. Cancer Nursing Practice. 14 (1) 22-27 Khakwani A, Tata LJ, Tod AM et al (2015) Which Patients Are Assessed by a Lung Cancer Nurse Specialist: A UK National Lung Cancer Audit Study IASLC 16th World Conference on Lung Cancer, Denver Oral 43: Sept 9th 2015. Fletcher M (2011) Assessing the value of specialist nurses. Nursing Time., http://www.nursingtimes.net/nursing-practice/clinical-zones/assessing-the-value-of-specialist-nurses/5033220.article Leary A, White J, Yarnell L. (2014) ,The work left undone. Understanding the challenge of providing holistic lung cancer nursing care in the UK European Journal of Oncology Nursing 18 (2014) 23-28 Macmillan 2014 http://www.macmillan.org.uk/Documents/AboutUs/Research/ImpactBriefs/ImpactBriefs-ClinicalNurseSpecialists2014.pdf National Cancer Action Team (2010) Excellence in cancer care. The contribution of the CNS NLCA Report 2015: http://www.hqip.org.uk/public/cms/253/625/19/354/2015-12-02%20National%20Lung%20Cancer%20Report.pdf?realName=9wvAlU.pdf http://www.macmillan.org.uk/Documents/AboutUs/Commissioners/ExcellenceinCancerCaretheContributionoftheClinicalNurseSpecialist.pdf RCN (2012) RCN Factsheet Specialist nursing in the UK February 2013 http://www.rcn.org.uk/__data/assets/pdf_file/0018/501921/4.13_RCN_Factsheet_on_Specialist_nursing_in_UK_-_2013.pdf RCN (2010) Specialist nurses: changing lives, saving money. http://www.rcn.org.uk/__data/assets/pdf_file/0008/302489/003581.pdf Roy Castle Lung Castle Foundation (2013) Understanding the Value of Lung Cancer Nurses http://documents.roycastle.org/UnderstandTheValueOfLungCancerNurseSpecialists_V03.pdf Tod AM, Redman J, McDonnell A, Borthwick D, White J. (2015) Increasing access to lung cancer treatment: The role of the lung cancer nurse specialist. BMJ Open. 5. e008587. doi:10.1136/bmjopen-2015-008587

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