Nottingham lung cancer CARE service (Cachexia, Anorexia and Related Experiences) Dr Andrew Wilcock DM FRCP Clinical Reader in Palliative Medicine and Medical Oncology, Honorary Consultant Physician Nottingham University Hospitals NHS Trust Thank you for opportunity. Abridged version. We have been busy.

Who are we? Multidisciplinary team: dietitian, OT, physio, therapy assistant and data manager Ruth Pashley Therapy assistant

Nottingham lung cancer CARE service 3-year service project funded by overseen by a steering committee.

Lung cancer CARE service dedicated to all people with thoracic cancer particular focus on the effects of cachexia fulfils national guidance HNA rehabilitation integrated with lung cancer and specialist palliative care services. I will use lung, but any thoracic cacner Any stage, any treatment intent

Nottingham lung cancer CARE service Aims: increase understanding of the supportive care needs, with particular emphasis on common distressing symptoms, maximising function and independence offer best available evidence-based care

Nottingham lung cancer CARE service Aims: continually evaluate the efficacy of the care in order to improve the care offered develop a model of care that could be rolled out to other centres and people with other types of cancer.

Why a focus on cachexia syndrome? lung cancer has a high incidence of cachexia even at diagnosis cachexia contributes to high morbidity and mortality costs result from reduced independence no established treatments major unmet need in lung cancer. cachexia leads to a loss of physical function, increasing dependency and need for additional support from lay or professional carers local data revealed the need for a mean of 2 admissions and 20 hospital bed days at a cost of £4,000 (based on a daily NHS hotelling cost of £200). Extrapolated nationally, suggests 68,000 admissions, 680,000 hospital bed days at a cost of £136million.

Outcomes of interest activity holistic needs assessment nutritional assessment and support hospital bed use, place of death other outcomes available/in progress.

Activity In 2 years saw over 540 new patients: 1,100 new and 4,900 f.u. episodes of care 3,200 face to face 80% of new, 12% of f.u. in patients home. in the two years of full operation, seen 540 new patients and provided about 3,600 face-to-face episodes of care and 2,800 telephone reviews; 70% of new and 12% of follow-up assessments take place in the patient’s home

HNA: SPARC© questionnaire helps identify patients who may benefit from additional supportive/palliative care self-completed, but help from lay or professional carer’s permitted begins with explanatory paragraph; leave blank if unsure Sheffield profile for assessment and referral to care

SPARC© content 45 questions, 56 possible responses, covering seven areas of potential need: Communication and information Physical Psychological Religious and spiritual Independence and activity Family and social Treatment Personal free-text area to report other concerns.

SPARC© use in Nottingham all patients invited to complete the SPARC after diagnosis results discussed at a weekly MDT meeting generally, patients scoring ‘Quite a bit’ or ‘Very much’ in particular issues will also be contacted for further assessment by the appropriate team member all patients assessed by the dietitian.

Needs identified (n=650) all patients reported distress with at least one symptom or issue median [IQR] number of symptoms or issues causing distress or bother: 2 [0–5] ‘very much’, 4 [2–7] ‘quite a bit’ 10 [8–14] ‘a little’ median [IQR] number of symptoms or issues causing distress or bother: 2 [0–5] ‘very much’, 4 [2–7] ‘quite a bit’ 8 [5–11] ‘a little’

Concern about effects of illness on family 40 [37–44] Top 10 symptoms or issues Percentage [95% CI] of patients reporting 'very much' or 'quite a bit' of distress or bother Feeling tired 51 [47–55] Shortness of breath 49 [45–53] Concern about effects of illness on family 40 [37–44] Change in weight 40 [36–44] Problems sleeping at night 39 [35–43] Cough 37 [33–41] Feeling sleepy during the day 36 [32–40] Loss of appetite 35 [32–39] Pain 34 [31–38] Feeling anxious 34 [30–37] Top 10

Implications Based on the developers’ recommendations: all patients should be brought to the attention of the clinical team 161 (25%) early attention 443 (68%) immediate attention.

Nutritional assessment and support In keeping with national guidance

Dietetic evaluation initially, all patients seen by dietitian 243 patients seen in 1st year generally within 4–8 weeks of diagnosis unique dataset previously limited to subsets of patients: chemotherapy surgery.

Dietetic evaluation screened using NICE guidance simple quick.

Malnourished patients should be considered for nutrition support: BMI <18.5kg/m2 unintentional weight loss >10% in last 36 months BMI <20kg/m2 and >5% weight loss in last 36 months.

Dietetic evaluation 84 malnourished (35%) 159 not malnourished (65%) little difference in age, sex, diagnosis, stage 15 (18%) malnourished receiving treatment with curative intent. Although curative/non-curative sig diff probably suggesting stage something to do with it.

Intake (24h recall) Malnourished n=84 (35%) Not malnourished Meeting calorie intake (No) 60 (71%) 102 (64%) Meeting protein intake (No) 29 (35%) 32 (20%) Calorie not significantly different Not ID’d by NICE screening, unless accept that all patients have increased catabolism Not an issue being picked up in primary care. difference in calorie intake NS only 3 patients were already on ONS all patients should be seen for dietetic assessment.

Can dietetic involvement help? In malnourished more gain wt with ONS vs. advice mean gain 3.1kg vs. 1.8kg even so, ONS alone are not enough abnormal metabolism due to systemic inflammatory response. Co-founding variables…

Can dietetic involvement help? Essentially, irrespective of nutritional status: 69% maintain (42%) or gain (27%) weight 31% lose weight. Why 7 + 3 not given ONS? Leaflet = level 1 intervention, leaflet from one of the others.

Is it important? Median survival 155 days less in malnourished group 1-year survival rates 19 vs. 41% P<0.01 for both As soon as the patient walks in the clinic, malnutrition = poor prognosis, and remember not all advanced disease. 1/3 in either group being considered or receiving potentially curative treatment. We like other have found adverse impact on survival Despite what we have done this may be an improvement already; but no direct comparison, but over time may be able to compare certain subgroups

Hospital bed use and place of death Comparison of pre- (2006) and post- (2010) CARE service

Comparison of 2006 and 2010 data Follow up 12–24months 2006 (n=363) No. of deaths 362 (100%) 277 (70%) 12 months survival rate 14% 38% Admissions/patient 1 [1–2] 1 [1–3] Total no. admissions 689 773 No. inpatient days/patient 13 [5–24] 11 [2–23] Total no. inpatient days 6,778 5,696 As of 31st March 07/2011 respectively Median [IQR] unless specified otherwise

Comparison of 2006 and 2010 data 2006 (n=363) 2010 (n=394) No. of deaths 362 (100%) 277 (70%) Place of death Hospital 167 (46%) 99 (36%) Home 118 (33%) 135 (49%) Nursing home 42 (12%) 14 (5%) Hospice 35 (10%) 29 (10%) Diagnosed between oct-december and fu for 6 months

Other outcomes OT and physio datasets needs identified/workload implications/outcomes patient feedback (x 2 surveys) – very positive sharing of data.

Links established include Department of Health Lung Cancer and Mesothelioma Advisory Board UK Lung Cancer Care Coalition National Cancer Action Team: Holistic Assessment Team (exemplar of good practice) National Cancer Action Team: Cancer and Palliative Care Rehabilitation Workforce Project.

Value of the CARE service? Providing practice-based evidence that benefits: patients local and wider NHS.

Winner of Pfizer Oncology Team of the Year 2011

The future? funding from MCS until end June 2012 ongoing funding in current climate uncertain currently evaluating impact in providing proactive rehabilitation to specialist palliative care outpatients/day care tendering to provide specialist palliative care rehabilitation service.

Thank you for listening. Questions?