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CommNETS Year 3 Project Overview + Working Groups Micheal Michael - PowerPoint PPT Presentation

CommNETS Year 3 Project Overview + Working Groups Micheal Michael and Rachel Goodwin Ben Lawrence, Sharon Patterson, AGENDA PRESENTOR SURGICAL GROUP Indigenous peoples and tissue banking Jonathan Koea Methodological issues in NET


  1. Fendrich V; et al. Surgical treatment of gastrointestinal neuroendocrine tumours. Lang Arch Surg 2011;396:299. Guo J; et al. Systematic review of resecting primary tumor in SBNETs patients with unresectable liver metastases. Oncotarget 2017;10:17396. • Question: Resection of the primary in small bowel NET with unresectable liver or other site metastases. • Format: Prospective, randomized non-blinded trial Outcome measures: • • Primary: Overall survival • Secondary: Progression free survival, treatment related morbidity and mortality, relief of symptoms, QoL, genomic analysis. • Power calculation: 57-81% survival difference in non-randomised cohorts • α error 0.1, β error 0.05 • 136 patients per arm for 40% survival difference • 240 patients each arm for 30% survival difference

  2. Finkelstein et al. Pancreatic neuroendocrine tumours: Analysis of overall survival of observation versus surgical resection. JoGS 2017;DOI 10.1007/s11605-017-3365-6 • Question: Resection or observation of small primary (≤3 cm) in PNETS. • Format: Prospective, randomized non-blinded trial • Outcome measures: • Primary: Overall survival • Secondary: Progression free survival, treatment related morbidity and mortality, relief of symptoms, QoL, technique (resection versus enucleation), genomic analysis. Power calculation: 19% survival difference at 3 years in non- • randomized cohorts • α error 0.1, β error 0.05 • 541 patients per arm for 20% survival difference

  3. Gurusamy KS; et al. Liver resection/ablation versus other treatments for neuroendocrine tumours in patients with resectable GEPNET liver metastases. Cochrane Review 2009. DOI: 10.1002/14651858.CD007118.pub2. • Question: Resection/ablation of liver metastases versus systemic therapy in patients with resectable liver metastases. Format: Prospective, randomized non-blinded trial • • Outcome measures: • Primary: Overall survival • Secondary: Progression free survival, treatment related morbidity and mortality, relief of symptoms, genome analysis. Power calculation: 10% survival difference in non-randomised cohorts • • α error 0.2, β error 0.05 • 389 patients per arm

  4. Gurusamy KS; et al. Palliative cytoreductive surgery versus other palliative treatments in patients with unresectable liver metastases from gastro- entero-pancreatic neuroendocrine tumours. Cochrane Review 2009. DOI: 10.1002/14651858.CD007118.pub2. • Question: Cytoreductive resection/ablation in patients with unresectable GEPNET liver metastases. • Format: Prospective, randomized non-blinded trial • Outcome measures: • Primary: Overall survival • Secondary: Progression free survival, treatment related morbidity and mortality, relief of symptoms, genome analysis. • Power calculation: 10% survival difference in non-randomised cohorts • α error 0.1, β error 0.05 • 776 patients per arm

  5. Summary of Outputs • No randomised clinical trials in surgery for GEP NET – Surgical perspective written for ANZ J Surgery on why there are so few surgical trials in NET • Utilize genomic classification, QoL, progression free survival – Systematic review of attitudes of indigenous peoples to tissue banking and genomics • Recommend develop one trial protocol for presentation in December 2018, and commencement in 2019. » Resection versus observation in small bowel primary » Primary resection versus observation in PNET with unresectable liver metastases » Resection versus observation for primary pnet ≤ 3cm » Resection versus enucleation in PNET • Anything we do will be progress………

  6. Search Strategy • (((("Neuroendocrine Tumors"[Mesh] OR "Carcinoma, Neuroendocrine"[Mesh]) OR "Carcinoid Tumor"[Mesh]) AND ("General Surgery"[Mesh] OR "Surgical Procedures, Operative"[Mesh] OR "surgery"[Subheading])) AND ("Randomized Controlled Trial"[Publication Type] OR "Controlled Clinical Trial"[Publication Type])) NOT "Melanoma"[Mesh] • Cochrane, Pubmed, Medline, Embase, Cinahl, Web of Science, Google Scholar, Google.

  7. Search Strategy • (((("Neuroendocrine Tumors"[Mesh] OR "Carcinoma, Neuroendocrine"[Mesh]) OR "Carcinoid Tumor"[Mesh]) AND ("General Surgery"[Mesh] OR "Surgical Procedures, Operative"[Mesh] OR "surgery"[Subheading])) AND ("Randomized Controlled Trial"[Publication Type] OR "Controlled Clinical Trial"[Publication Type])) NOT "Melanoma"[Mesh] • Cochrane, Pubmed, Medline, Embase, Cinahl, Web of Science, Google Scholar, Google.

  8. COMNETS The Slow Burning/Stalled & Cold Project List Slow Burning/Stalled: Slow or No progress Feedback from group- still level of interest Cold: No feedback

  9. The Slow Burning/Stalled Project List Recommendations for optimal clinical trial design in advanced NET: Previous PIs unable to continue to take project forward : Danny Rayson: Change to Administrative and Research Lead Role Aimmee Hayes: Not able to devote time Katrin Sjoquist? Seeking alternate PI to move forward

  10. The Slow Burning/Stalled Project List NET classification by cell type PIs – Chris Hemmings, Sylvia Asa Currently on hold (funding and workload) May be restarted 2018 Neither PIs attending. Chris has indicated by email that she hopes to get back into this project next year Additional Collaborators to feedback to Chris?

  11. Cold Projects NET registry PIs? ?Issues with Canadian database contribution - Simron to update PLANET Database: Australia, NZ, Currently progressing in the mean time Supported by major NET centres IT by University of Melbourne

  12. How to deal with Slow Burning/Stalled and Cold Projects: FOR DISCUSSION Where PIs have still ongoing interest: - Provide them with ongoing support for a fixed period of time before closing? Projects requiring new PIs or no feedback - If no response within say 3 months- then close

  13. • F-NET Project: Financial Outcomes in people with Neuro-Endocrine Tumours • David Wyld, John Leyden • Kate Wakelin, Louisa Gordon, Jan Mumford • Nick Pavlakis, Michael Michael • Simone Leyden

  14. Post CommNETS 2016, initial discussion re Project between Australian and Canadian Collaborators - Simron Singh, Lesley Moody Health Economic Advice from Canada – Christopher Longo Australia – Louisa Gordon Final decision was that there were sufficient differences between Health Systems in the Canada and Aust that Country Specific Survey tools would be required Presenting the Australian project

  15. Objectives • The aim of our study is to assess the financial burden experienced by patients with NETs. Specifically, the aims are: 1. To quantify the medical cost outlays to patients over a defined period of time; 2. To identify the sources of patients facing high economic burden; 3. To understand the impact of financial burden on everyday living and quality of life 4. To describe impacts that NETs has had on employment and insurance experiences • In addition, an exploratory analysis will be undertaken on medicare data, in the patient cohort who consent to this separate project.

  16. Methods • Study design: Cross-sectional online survey of all NET patients referred by the Investigating sites in this project or via the Unicorn Foundation. • Population and setting: All people with NETs who are willing to complete the online survey. The survey will be specifically advertised via 1. The Unicorn Foundation via their current information sharing to NET patients 2. Australian NET Clinical Services including Royal Brisbane and Women’s Hospital, Peter MacCallum Cancer Centre, and Royal North Shore Hospital • Sample size: We will target 250 NET patients which provides a sample size sufficient for exploratory analyses and enables subgroups of interest e.g. with/without financial stress • Data collection: An online survey will be constructed in ‘LabPortal’ which is Queensland Institute of Medical Research (QIMRB’s) internal survey web design.

  17. Progress to Date • Australian survey tool developed in conjunction with Louisa Gordon. • Protocol written and finalized • Project initially submitted for approval to QIMRB ethics committee • Development of online survey / database • RBWH Ethics approval • Peter MacCallum and Royal North Shore Hospital ethics applications underway • Some funding obtained from Ipsen to cover above costs including payments to access individual Medicare data

  18. Current Status • Decision made to commence project / survey to go live 3 weeks ago – Other sites ethics approvals likely to be at least 1-2 months away – Allow a period of at least a month to advertise the survey pre Christmas • Recruitment via – Direct email to individuals on Unicorn Foundation closed group – Direct discussion with patients seen in clinic at RBWH

  19. Current Status • Completion figures to 6 th Dec: • 32 entries (2 did not proceed but did consent, ?re-entered) • 30 have undertaken the survey • 23 completed in full – of these 4 did not consent to Medicare • 7 partially completed (all in first week of commencement – nil last 2 weeks) • 14 from RBWH, 16 via Unicorn • 1 paper survey posted

  20. Current / Future Issues • Survey tool/ logistics – ? Taking longer to complete that first estimated – Already a couple of RBWH patients indicating cannot complete online – have set up a process to provide paper copy of survey • Recruitment – Somewhat slower than expected (Unicorn Foundation) – Reminders via Unicorn Foundation, actively approach RBWH patients outside of clinic visits – Aiming to open at other sites (Ethics Approval) • Additional funding for data analysis by Health Economic team, especially additional data obtained from Medicare – Plan to review this with Unicorn Foundation in the new year

  21. Co mmNETS Project 2017 De Desi sign and C nd Crea eation o of a an Op n Optimal Sha hared ed C Care e Model f for N r NET patients i in the Co Community Principal Investigator: Radhika Yelamanchili Co-PIs: Dorothy Lo, Alia Thawer, David Wyld, David Chan, Simron Singh Research Assistant: Harsh Naik

  22. Background • The management of a NET patient often involves a multidisciplinary approach, among the referring oncologists, surgeons, endocrinologists and a NET specialty centers. • Given the increasing prevalence of NET patients, it is our hope to develop an optimal shared care model that brings quality care closer to a patient. • Very little has been published to date looking at models of shared care between community oncologists (or equivalent) and experts in oncology, and no data was found ,defining such a model in NETs specifically. • The first part of our project was to understand, the current landscape of practice involving medical oncologists and NET specialty centers, using a survey.

  23. Methods Survey Development • Survey premise and domains were initially generated, at CommNETS 2016 roundtable discussion • Questions generated during 3 conference calls and finalized over numerous email communications (with input from all 6 members). Survey Dissemination • Survey Monkey was used as the online platform. • Survey link emailed to oncologists in Ontario (ONTMOA list) • Queensland: respondents recruited through list serve used for local educational meetings • Survey sent out 2 nd week of November 2017.

  24. Methods Survey Components • Key domains: demographics, comfort with NETs treatment decisions and management, interest in shared-care model and NETs education, barriers to collaboration, ideas for collaboration • 30 questions (7-14 used modified Likert scale, 26-30 free text) Responses To-Date • 59 medical oncologists (MO) responded as of December 1. • Data reviewed and analyzed for recurrent themes.

  25. Demographics • Only 11% of the MO were practicing at a NET specialty center • Majority of the MO had <= 5 6 . W hat is the approxim ate total num ber of NET patients in your individual NET patients in their individual 30 28 practice? practice. 25 20 Highlights extent of involvement of MO, with 15 13 13 limited experience 10 5 5 Therefore need for education and 0 collaboration 0-5 6-10 10-50 > 50

  26. 16 Approximate distance from 14 Australia Canada 14 12 12 the nearest NET specialty 10 center 8 6 6 4 4 3 3 4 • Majority of the MO were 2 2 2 1 <100Km away,from the NET 0 I am at a NET < 50km 50-100km 100-250km > 250km specialty center. specialty centre 100% 5.56 • However, atleast 1/3 of 13.33 90% 11.11 them Australia and 1/6 of 80% 20 them in Canada were > 100 70% 33.33 > 250km Km away 60% 20 100-250km 50% with about 5-10 % of them > 50-100km 40% 250 Km away . 38.89 30% 40 Travel times and financial 20% toxicity to patients. 10% 11.11 6.67 0% Australia Canada

  27. 13 14 8.I f you have > 5 NET patients in your 12 11 practice, w hat are your levels of com fort in m anaging NET patients ? 10 7 8 6 • About a quarter of the MO are 4 2 not comfortable with managing 0 NET patients , despite being Not Somewhat comfortable Very comfortable comfortable/ Somewhat involved in the care of NET uncomfortable/ Neutral patients. 7 Need for education/increased 23% 13 collaboration 42% 11 35% Not comfortable/ Somewhat uncomfortable/ Neutral Somewhat comfortable Very comfortable

  28. Levels of comfort with treatment decisions 9. What are your levels of comfort with treatment 10. What are your levels of comfort with treatment decisions for new ly diagnosed NET patient ? decisions at progression? 18 18 16 16 16 15 14 14 13 12 12 10 10 9 8 7 8 6 6 4 4 2 2 2 0 0 Not comfortable/ Somewhat Somewhat comfortable Very comfortable Not comfortable/ Somewhat Somewhat comfortable Very comfortable uncomfortable/ Neutral uncomfortable/ Neutral At progression- transition point in the shared care model

  29. LEVELS OF COMFORT WITH PRESCRIBING AND MANAGING VARIOUS TREATMENTS 1 1 . What are your levels of 1 4 . What are your levels of comfort 1 2 . What are your levels of comfort 1 3 . What are your levels of comfort with comfort with prescribing and in referral and m onitoring w hile with prescribing and managing oral chemotherapy managing targeted agents? on PRRT ( Peptide receptor som atostatin analogues? ( capecitabine/ tem ozolam ide) radionuclide therapy) ? 25 administration and monitoring? 24 18 25 17 25 16 19 20 20 20 20 14 12 15 15 15 10 10 10 10 10 8 8 7 6 6 4 4 5 5 5 4 4 1 2 0 0 0 0

  30. Levels of comfort with referring 17 18 Australia Canada 16 and monitoring while on PRRT 14 12 by country 10 8 6 4 3 4 2 1 2 0 0 • Majority of the Canadian(Ontarian) Not Somewhat comfortable Very comfortable comfortable/ Somewhat MO not comfortable with PRRT, unlike uncomfortable/ Neutral their Australian(QL) colleagues. 100% 0 14.3 15.00 90% 80% 70% 60% 57.1 50% 85.00 40% 30% 20% 28.6 10% 0% Australia Canada Not comfortable/ Somewhat uncomfortable/ Neutral Somewhat comfortable Very comfortable

  31. Interest ?? 7 . If you ha u have < <5 N NETs pa patie ients i in n your indiv ndivid idual pr l practice, , then how interested are you in incorporating these patients in n your i indiv ndividual pr practice? • About 55% not interested in incorporating NET patients in their practice 4 15% BUT WHY?? 15 8 55% 30% Not interested/ Somewhat not interested/ Neutral Somewhat interested Very interested

  32. 1 5 . Potential barriers to your involvem ent in the m anagem ent of NET patients: ( Please select all that apply) 30 27 25 22 22 20 16 16 15 10 9 8 7 7 6 5 5 4 0 Disease site specific Lack of perceived Lack of clinical Labs restrictions Lack of access to site Limited or lack of Human I ndividual time Lack of support from Lack of interest Patient prefers to be Not applicable (I am practice need experience with NET specific tumor board access to nuclear resources/ allied constraints speciality center referred to NET at a NET speciality patients imaging health restrictions or speciality center (for center) (Octreoscan/ Gallium challenges transfer of care) 68 PET)

  33. Referral patterns 2 0 . W hat percentage of your NET patients do you refer to a NET specialty center? 2 3 . For patients referred to a NET 20 25 20 specialty center, do the m ajority of 12 11 15 8 7 10 them return to you? 5 0 < 25% 25-50% 50-75% 100% I am a NET speciality center (I do 7 not refer) 13% 10 18% 2 2 . W hen you refer patients to the NET 38 specialty center, w ould you refer m ajority of 69% them for: ( select one) 27 30 20 13 9 10 Yes 0 Transfer of care For treatment decisions PRRT / clinical trials / specific procedures / interventions • Majority of MO refer 50-75% of their NET patients to a NET specialty center. Increased education and collaboration/ACCESS to specific procedures • About 20 % of them refer ALL OF THEIR NET pts . /treatments, could possibly help these • Majority of the referrals are for specific procedures stats and therefore wait time issues. /treatments and to some extent for treatment decisions,but less so for transfer of care

  34. Collaboration 2 1 . I f you refer < 1 0 0 % of your NET patients, do you discuss the m anagem ent of these patients at: • 50 % of the MO discussed patients in the non NET specific MDT 9 9 25% 25% Highlights gap in the care of the NET patients 18 50% NET specific multidisciplinary tumor board (MDT) Other MDT (Lung/ GI) Directly with a NET expert (via phone/ email)

  35. Coordination of Care 2 5 . Are you using the follow ing services for coordination of care / shared care currently? ( select all that apply) 45 40 40 • Majority of the coordination of 35 care is via email/phone . 30 • Telehealth and NET specific 25 tumor boards used to a lesser degree 20 15 13 13 Highlights the time spent by providers- room for improvement… 10 5 0 Telehealth Provincial / Regional Email / phone tumor boards communication

  36. Qs 26 to 30: Qualitative Themes Asked about current challenges faced by providers (NET and non NET specialty centers) Medical Oncologists outside a NET specialty center - lack of timely access to expert services /opinion/tumor boards - Access to treatment plan once established with expert (lack of common EMR) - Lack of resources to help stay current if you don’t see many NET patients ACCESS - Patients retained in the NET centers and therefore not developing challenges experience - Limited experience during training Oncologists at NET specialty center - Once they see an expert, patient rejects return to local health care provider and therefore patient volumes in the clinics.

  37. Qs 26 to 30: Qualitative Themes - Too much time spent in coordination /collaborating with NET specialty centers and the onus falls on the local provider - Discussion at provincial tumour boards gives you more questions than answers Suggestions COORDINATION - Streamlined process required that tells you: when to seek challenges advice, who to seek it from, what avenue to use (email, telehealth, accessible tumor boards) - Maintaining and distributing list of providers interested/experts in NET - Educating providers outside NET centers

  38. Qs 26 to 30: Qualitative Themes Asked about current challenges faced by patients and suggestions for improvement - Wait times to see a NET expert - Wait times for nuclear imaging and treatment Challenges - Redundant imaging /investigations faced by patients - Frustration due to lack of communication between centers - Travel distances and financial toxicity involved in seeing a NET expert - Lack of access to Gallium scan PRRT - Limited access to PRRT - Lack of clarity/comfort with PRRT as a treatment option

  39. Summary • Medical oncologists outside NET specialty centers are involved in the care of NET patients, but not necessarily comfortable/experienced . • Key barriers to the management of NET patients include, limited access to nuclear imaging, lack of access to NET specific tumor boards, lack of experience with NET patient management . • PRRT is an area where more education is required, as to how it fits into the NET treatment algorithm (particularly in ON, Canada). • Lack of a streamlined process for coordination amongst providers, limited access to experts /imaging , wait times and travel times for the patients are current foreseen barriers to the successful implementation of a shared care model.

  40. Next Steps • Review the current data more closely. • Expanding the survey to surgeons/endocrinologists involved • Work on educating the HCP outside the NET centers. • Work on improving the tumor board access/ communication between the NET and non NET specialty centers. • Using the recurring themes and to come up with a ? pilot project (shared care model) to streamline the transition of care between the NET specialty centre and the referring provider in the community

  41. Pituitary Dysfunction after PRRT Marianne Elston Richard Carroll Amanda Love David Wyld David Pattison Dale Bailey David Ransom

  42. Hypotheses • That the pituitary receives a clinically significant dose of radiation during PRRT • That patients who receive PRRT for unresectable NET have higher rate hypopituitarism at 5+ years after therapy than those who have not received PRRT • That the pattern of hypopituitarism differs from external beam RT with higher rate 2 ° hypothyroidism

  43. Background • Normal tissues may express SSTRs – Pituitary expresses SSTR1, 2a, 5 & poss. 3 – Pituitary SSTR subtype varies by pituitary cell type • Highest SSTR2 – thyrotrophs, somatotrophs Panetta Life Sci 1995; Miller JCEM 1995, O’Carroll 1995; Day 1995 • Limited data on PRRT & pituitary effects – Two studies – up to 24/12, N=79 • Decr FSH/LH levels 21 postmenopausal females c.f. baseline • Transient reduction spermatogenesis 35 males Teunissen 2009; Kwekkeboom 2005

  44. Background 2 • Hypopituitarism 2 ° external beam RT well known • Hypopituitarism – Associated with impaired QoL & premature mortality Darzy 2013; Tomlinson 2001 – Onset may be insidious, not recognised or diagnosed late – Risk increases with time – Extent & time of onset is dose-dependent • <30Gy isolated GH deficiency • >60Gy 30-60% gonadotrophin, ACTH & TSH def. after 10 years – Treatment is readily available

  45. Aim • To assess the prevalence of hypopituitarism in patients >5 years after PRRT therapy compared to patients with unresectable NET who have not received PRRT

  46. Methods • Measurement basal pituitary hormone profile • Hypopituitarism = loss >1 axes • Effect size unknown – convenience sample 50 each group

  47. Progress to Date • NZ – Multicentre ethics obtained (17/STH/23) – Locality assessment obtained – Waikato/Wellington • Patient recruitment started • Australia – QLD • Ethics obtained Royal Brisbane & Women’s Hospital – WA • Ethics submitted

  48. Issues • Not using a central lab – Cost, logistically more difficult • No baseline sample available – Would take minimum 5 years to complete • Effects of disease process itself on pituitary & treatment effects – E.g. sick euthyroid syndrome; LAR effects • Trying to mitigate by including controls • Ability to recruit adequate numbers 5 years after PRRT • Time interval may still be too short

  49. NET Indicators Workshop Facilitator: Ben Lawrence CommNETs 3 Honolulu Dec 9, 2017

  50. Primary Objective Develop a starting list of ~40 potential quality performance indicators for NET diagnosis and treatment services (in New Zealand, Australia and Canada) that can enter further assessment in a modified Delphi consensus

  51. Setting the scene – measuring quality Network! registry (NZ) – Primary data New Zealand Cancer Registry using ICD-03 codes. – Secondary data public and private pathology records in every district health board (n=20) – Inspection of individual medical record – Pulmonary small cell carcinoma excluded  3334 patients, including presentation, pathology, investigation, treatment type and survival.  We will show only 2008 to 2012 today

  52. New Zealand is divided into…

  53. Data analysis Anonymised / ordered highest to lowest / 2008 and 2012 Comment on availability of (ease of access to) data Readily available in patient record Available but often difficult to find Often not recorded

  54. Presented acutely % patients presenting acutely % patients not presenting acutely 100 90 80 70 60 50 40 30 20 10 0 A B C D E F G H I J K L M N O P Q R S

  55. Family history of cancer recorded % Recorded % Not Recorded 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% A B C D E F G H I J K L M N O P Q R S

  56. Distant metastases at diagnosis % patients without metastases at diagnosis % patients metastic at diagnosis 100 90 80 70 60 50 40 30 20 10 0 A B C D E F G H I J K L M N O P Q R S

  57. Unknown primary site % patients with known primary site % patients with unknown primary site 100.00 90.00 80.00 70.00 60.00 50.00 40.00 30.00 20.00 10.00 0.00 A B C D E F G H I J K L M N O P Q R S

  58. Chromogranin A measured % patients not having CgA measurement % patients having CgA measurement 100 90 80 70 60 50 40 30 20 10 0 A B C D E F G H I J K L M N O P Q R S

  59. MDM review documented % patients reviewed at MDT % patients not reviewed at MDT 100 90 80 70 60 50 40 30 20 10 0 A B C D E F G H I J K L M N O P Q R S

  60. GEP NET with Ki-67% recorded % patients with ki67 recorded % patients with ki67 not recorded 100.00 90.00 80.00 70.00 60.00 50.00 40.00 30.00 20.00 10.00 0.00 A B C D E F G H I J K L M N O P Q R S

  61. Lung NET with mitotic count recorded % patients with mitotic count not recorded % patients with mitotic count recorded 100.00 90.00 80.00 70.00 60.00 50.00 40.00 30.00 20.00 10.00 0.00 A B C D E F G H I J K L M N O P Q R S

  62. Patient received cross sectional imaging (CT, MRI) % patients not receiving cross sectional imaging % patients receiving cross sectional imaging 100 90 80 70 60 50 40 30 20 10 0 A B C D E F G H I J K L M N O P Q R S

  63. Patient received functional imaging (Octreoscan, FDG PET or Ga-tate PET) % patients not receiving functional imaging % patients receiving functional imaging 120.00 100.00 80.00 60.00 40.00 20.00 0.00 A B C D E F G H I J K L M N O P Q R S

  64. Patient received surgery % patients having surgery % patients not having surgery 100 90 80 70 60 50 40 30 20 10 0 A B C D E F G H I J K L M N O P Q R S

  65. Patient received somatostatin analogue % patients not receiving somatostatin % patients receiving somatostatin 100 90 80 70 60 50 40 30 20 10 0 A B C D E F G H I J K L M N O P Q R S

  66. Pts by Cancer Region Number of patients 800 700 600 500 400 300 200 100 0 Central Midland Northern Southern Number of patients

  67. Overall survival by region A A B C B B 7.6e-05 C D C 0.322 0.018 D 0.018 0.136 0.270

  68. Lessons Quality is difficult to measure! – Important but not measurable – Important but reflect historic practice – Variability might indicate an area of need (or a bad indicator) – Some measures reflect multiple practices – Some measures are only relevant to subtypes of NETs – The definition of subtypes can be stable or unstable – Determining subtypes means more data to collect

  69. Primary Objective Develop a starting list of ~40 potential quality performance indicators for NET diagnosis and treatment services (in New Zealand, Australia and Canada) that can enter further assessment in a modified Delphi consensus Secondary Objectives Strengthen links and share perspectives between patients, pharmacists, nurses, specialties and countries by working together Contribute to research with a high chance of leading to real world change that improves patient outcomes

  70. Method - Modified RAND/UCLA Delphi Delphi Round 1 Delphi Round 2 Literature review and synthesis Online survey Panel Meeting (Feb 2018) (ENETs 2018)

  71. Method - Modified RAND/UCLA Delphi Delphi Round 0 Delphi Round 1 Delphi Round 2 Nominal Group Online survey Panel Meeting Technique (Feb 2018) (ENETs 2018)

  72. Method - Modified RAND/UCLA Delphi Delphi Round 0 Delphi Round 1 Delphi Round 2 Nominal Group Online survey Panel Meeting Technique (Feb 2018) (ENETs 2018)

  73. Workflow in principle Delphi Round 0 Delphi Round 1 Delphi Round 2 Nominal Group Online survey Panel Meeting Technique (Feb 2018) (ENETs 2018) Negotiation with Health Services International Presentation and (rational, data Comparison publication required, targets, fit with existing)

  74. Method - Modified RAND/UCLA Delphi 945 – 1015 Introduction Delphi Round 0 Nominal Group Technique 1015 – 1100 Question 1 1130 – 1215 Question 2 1215 – 1300 Question 3 1500 – 1545 Question 4

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