The role of cordotomy in the management of mesothelioma-related pain in the United Kingdom (The INPIC Pilot study) Matthew K Makin Consultant in Palliative Medicine Marlise Poolman Specialist Registrar in Palliative Medicine Collaborators Pain Group, Marie Curie Palliative Care Institute Liverpool

INPIC Pilot: Cordotomy Makin MK, Ellershaw JE, Leach A, Poolman M, Sharma ML, Nurmikko T, Makin RD, Bridson J, Hugel H NCRI SuPaC Lung Cancer Research Grant approved June 2008 61.4% of Total FEC (£122 229)

INPIC Background Marie Curie Palliative Care Institute Liverpool Pain Group: 2005 Invasive Neurodestructive Procedures in Cancer Pain NRCI Palliative Care Studies: Pain Group: Nov 2007 The role of cordotomy in the management of mesothelioma-related pain in the United Kingdom (The INPIC Pilot study)

INPIC Pilot: Cordotomy Mesothelioma: 1800 new cases pa Difficult pain syndromes National Mesothelioma Framework (2007) Cordotomy Inequity in commissioning and availability Level of evidence poor Lack of consensus on use Unquantified associated morbidity

Project Outline

1. Literature review 2. Consensus study 3. Registry study Measuring availability and attitudes Developing clinical guidelines 3. Registry study National/EU/International Dendrite Clinical Systems

1. Literature review 2. Consensus study 3. Registry study Measuring availability and attitudes Developing clinical guidelines 3. Registry study National/EU/International Dendrite Clinical Systems

Consensus study Letter of introduction Selection of Experts/Participants

1. Screening Questionnaire 2. Delphi study 3. Nominal Group Technique

Screening Questionnaire Canvas Availibility/Awareness Grey literature Current policies/guidelines Telephone interview Recorded on Teleform Sheet

Screening Questionnaire Record Demographics Experience/Use of cordotomy Request Contributions towards Systematic literature review Other known experts

Delphi study Measuring consensus What is the role of cordotomy in the management of mesothelioma-related pain in the UK? Web-based questionnaire Hosted by the Pain Research Institute

Delphi study Ranking agreement with statements Share ranking and reconsider Re-ranking of statements Several phases until consensus

Nominal Group Technique Developing consensus Where does cordotomy fit in the management of mesothelioma-related pain in the UK? Develop clinical guidelines

Nominal Group Technique Web-based questionnaire With copy of literature review Ranking of statements Several phases

Nominal Group Technique Cordotomy should be the first line analgesic for mesothelioma-related cancer pain (i.e. even before attempting the WHO ladder +/- adjuvants) Cordotomy should be considered in patients on step 3 of the WHO ladder and still has uncontrolled pain at the oral morphine per 24 hr equivalent dose of: 20 mg, 50 mg, 100 mg, 150 mg, 200 mg, 500 mg (all scored Yes, No, Maybe)

Nominal Group Technique National Study Day Independent moderator ‘Champions for options’ speakers Produce draft guidelines Outline National Registry Study

1. Literature review 2. Consensus study 3. Registry study Measuring availability and attitudes Developing clinical guidelines 3. Registry study National/EU/International Dendrite Clinical Systems

INPIC National Registry for Cordotomy Industry Collaboration: Dendrite Clinical Systems

Registry Clinical Information System Disease Registries Benefits Research Benchmarking Clinical Performance National Standards for outcomes Risk stratification to guide decision-making

Registries (examples) Cardiac Surgery  International Atrial Fibrillation Surgery Registry Interventional Radiology Inferior Vena Cava Filter Registry Respiratory Medicine British Thoracic Society (BTS) - Difficult Asthma British Thoracic Society (BTS) - UK Sarcoidosis Registry Surgical and Interventional Oncology Biliary Stent Registry International Colorectal Stent Registry British Association of Endocrine Surgeons (BAES) National Database Minimally Invasive Gastro-Oesophageal Cancer Surgery (MIGOCS) National Database ROST - Registry of Oesophageal Stenting Venous Disease International Venous Registry

Step 1: Harvest data

Step 2 - Import Data to create 'interim' databases

Step 3 - Correspond, run Validation Checks for Data Consistency and Merge Data

Step 4 - Data Analysis, Outcome Analysis & Risk Modelling

Registry: Sample Database Demographic data Diagnosis and Oncological management Pain/Analgesic history Referral data Pre-procedure Assessment Procedure Follow-up Discharge Patient Satisfaction Questionnaire Referrer Satisfaction Questionnaire

Next steps Cordotomy in Mesothelioma-related pain in the UK

Next steps Other neuro-destructive procedures in cancer pain management Cordotomy in Mesothelioma-related pain in the UK

Next steps Other needle-invasive procedures in cancer pain management Other neuro-destructive procedures in cancer pain management Cordotomy in Mesothelioma-related pain in the UK

Next steps Interventions in Palliative Care Including Paracentesis, Blood transfusion, Pleural aspiration Other needle-invasive procedures in cancer pain management Other neuro-destructive procedures in cancer pain management Cordotomy in Mesothelioma-related pain in the UK

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