BTOG 2016“Can the lung cancer CNS improve

cancer outcomes?”Angela Tod

Professor of Older People and CareSchool 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

“Can the lung cancer CNS improve cancer outcomes?”

Who is a Lung cancer CNS?

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!

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

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

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

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.

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“Can the lung cancer CNS improve cancer outcomes?”

Why ask the question?

... 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

… 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)

Nursing Standard Dec 9th. 30(15) p10

• 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)

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

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

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

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

“Can the lung cancer CNS improve cancer outcomes?”

What is the evidence?– Design

– Outcomes

– Findings• Impact

• Factors influencing impact

What is the evidence? Design

• Hierarchy of evidence

– RCT

– Observational research

– Qualitative research

– Economic evaluation

BUT

• Ethics

• Local variation

• Research question

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

• 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.

How is impact achieved

• Overview of the pathway

• Analysis

• Efficiency

• Leadership

• Service redesign/service improvement

• Workforce

• Patient experiencehttp://www.hsj.co.uk/download?ac=1298457

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 Dimbleby Cancer 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.

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.

Exploring the impact of lung cancer specialist nurses on access to anti-cancer treatment

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

Co-ordinating BrokeringLinking Navigating

Collaborating Opening doorsCommunicating Negotiating

BypassingAdvocacyEvidence

Expert PractitionerFlexible Patient-focused

HolisticAutonomous Adaptable

Leadership Maturity Timeliness

Resilience Confidence DiplomaticEntrepreneur Managing-uncertainty

Thinking-ahead Expertise Advocate

Experienced

Role in MDT

Other MDTs

Other CNSs

CCGs

Non Lung Cancer wards

Primary Care Teams

Other Treatment

Centres

CNS

MDT member

MDT

member

Community nurse

MDT

member

MDT member

GP

MDT member

Pre Diagnosis DiagnosisTreatment

active/palliative

Post treatment

survivorship/palliative

Pre Diagnosis DiagnosisTreatment

active/palliative

Post treatment

survivorship/palliative

Patient pathway Relationships

Findings: Patterns of Working

Impact on Treatment Access

– Assessment

– Referral

– Symptom management

– Performance status

– Optimizing respiratory function

– Lifestyle advice

– Resolving diagnostic overshadowing

– Co-ordination

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)

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)

CNS Activities and Impact• 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) (National Cancer Action Team (2010) Excellence in cancer care. The contribution of the

CNShttp://www.macmillan.org.uk/Documents/AboutUs/Commissioners/ExcellenceinCancerCaretheContributionoftheClinicalNurseSpecialist.pdf)

Work left undone....

• A survey of 100 lung cancer nurses from across the UK (RR78%) examined the perception of the work left undone against 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 outcomes for 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

Which Patients Are Assessed by a Lung Cancer Nurse Specialist: A UK National Lung Cancer Audit Study

Aamir Khakwani, Laila J Tata et al

University of Nottingham

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).

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

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

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.01

.02

.03

.04

0 20 40 60 80 100Percentage of patients recorded as being assessed (2007 - 2011)

0

.01

.02

.03

.04

.05

Den

sity

0 20 40 60 80 100Percentage of patients recorded as being assessed (2010 &2011)

Who is assessed by a LCNS?

We used multinomial logistic regression and the results are represented in relative risk ratios (RRR) which accounts for several patient features

More likely to be assessedLess likely to be assessed

Socioeconomic status

SexCo-morbidity

Stage

Worsening Performance Status

Emergency admission

Age >75 years

Trust size and Caseload

Treatment Sx, Cx & Rx

More likely to be assessed before/at diagnosisLess likely to be assessed before/at diagnosis

At what point was the patient assessed?

Age >75 years

Emergency admission Referred from Consultant

Treatment Sx & Cx

LCNS salary band 7&8

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.

“Can the lung cancer CNS improve cancer outcomes?”

Some reflections:– Maximizing impact?

– Research

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

ReferencesBall (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) 22-27Khakwani 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.articleLeary 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) 23-28Macmillan 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 CNSNLCA Report 2015: http://www.hqip.org.uk/public/cms/253/625/19/354/2015-12-02%20National%20Lung%20Cancer%20Report.pdf?realName=9wvAlU.pdfhttp://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.pdfRCN (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.pdfTod 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