References

1. Mothoneos J, editor. Understanding Mesothelioma. A guide for people with cancer, their families and friends.: Cancer Council Australia; 2019. 2. Milano MT, Zhang H. Malignant pleural mesothelioma: a population-based study of survival. J Thorac Oncol. 2010;5(11):1841-8. 3. Musk AW, Olsen N, Alfonso H, Reid A, Mina R, Franklin P, et al. Predicting survival in malignant mesothelioma. Eur Respir J. 2011;38(6):1420-4. 4. Bibby AC, Dorn P, Psallidas I, Porcel JM, Janssen J, Froudarakis M, et al. ERS/EACTS statement on the management of malignant pleural effusions. Eur J Cardiothorac Surg. 2019;55(1):116-32. 5. Guidelines for the Diagnosis and Treatment of Malignant Pleural Mesothelioma Asbestos Diseases Research Institute; 2013. 112 p. 6. Gelzinis TA. The 2019 ERS/ESTS/EACTS/ESTRO Guidelines on the Management of Patients With Malignant Pleural Mesothelioma. J Cardiothorac Vasc Anesth. 2020. 7. Rocket IPC Peritoneal Catheter Rocket Medical; 2014. Available from: http://sales.rocketmedical.com/media/attachment/file/r/o/rocket_ipc_peritoneal_catheter_-_information_for_patients_and_nurses.pdf [cited ....] 8. About the PleurX™ drainage system: BD; Available from: https://www.bd.com/en-us/offerings/capabilities/interventional-specialties/peritoneal-and-pleural-drainage/about-the-pleurx-drainage-system. 9. Independence Australia. Victoria: Independence Australia.Available from: https://store.independenceaustralia.com/catalogsearch/result/?q=pleurx. 10. Hoon SN, Lawrie I, Qi C, Rahman N, Maskell N, Forbes K, et al. Symptom Burden and Unmet Needs in MPM: Exploratory Analyses From the RESPECT-Meso Study. J Palliat Care. 2020:825859720948975. 11. Causes of sweating Cancer Research UK: Cancer Research UK; 2020.Available from: https://www.cancerresearchuk.org/about-cancer/coping/physically/skin-problems/dealing-with-sweating/causes. 12. Arber A, Spencer L. 'It's all bad news': the first 3 months following a diagnosis of malignant pleural mesothelioma. Psychooncology. 2013;22(7):1528-33. 13. Seely DM, Weeks LC, Young S. A systematic review of integrative oncology programs. Curr Oncol. 2012;19(6):e436-61. 14. Supportive Care: Chris O'Brien Lifehouse. Available from: https://www.mylifehouse.org.au/services/supportive-care/. 15. Clayson H. The Experience of Mesothelioma in Northern England. University of Sheffield; 2007. 16. Nowak AK, Stockler MR, Byrne MJ. Assessing quality of life during chemotherapy for pleural mesothelioma: feasibility, validity, and results of using the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire and Lung Cancer Module. J Clin Oncol. 2004;22(15):3172-80. doi: PMID: 17. Jackson MB, Pounder D, Price C, Matthews AW, Neville E. Percutaneous cervical cordotomy for the control of pain in patients with pleural mesothelioma. Thorax. 1999;54(3):238-41. 18. Woolhouse I, Bishop L, Darlison L, De Fonseka D, Edey A, Edwards J, et al. British Thoracic Society Guideline for the investigation and management of malignant pleural mesothelioma. Thorax. 2018;73(Suppl 1):i1-i30. 19. Vogelzang NJ, Rusthoven JJ, Symanowski J, Denham C, Kaukel E, Ruffie P, et al. Phase III study of pemetrexed in combination with cisplatin versus cisplatin alone in patients with malignant pleural mesothelioma. J Clin Oncol. 2003;21(14):2636-44. 20. Chemotherapy for pleural mesothelioma: Cancer Council. Available from: https://www.cancercouncil.com.au/pleural-mesothelioma/active-treatment/chemotherapy/. 21. eviQ. Understanding chemotherapy Information for patients: NSW Government; 2018 [Available from: https://www.eviq.org.au/patients-and-carers/patient-information-sheets/3083-understanding-chemotherapy. 22. Immunotherapy: Cancer Council NSW.Available from: https://www.cancercouncil.com.au/cancer-information/cancer-treatment/immunotherapy/?gclid=EAIaIQobChMIkKPTh46K6gIVlx0rCh0HCg7mEAAYASAAEgISSvD_BwE#What-is-immunotherapy. 23. Understanding Immunotherapy A guide for people affected by cancer [Fact sheet]. Cancer Council; 2019 Available from: https://www.cancer.org.au/assets/pdf/understanding-immunotherapy-fact-sheet [cited 2020 Aug 25] 24. Australian Clinical Trials: NHMRC, Australian Government; 2015 [updated 08-04-2015]. Available from: https://www.australianclinicaltrials.gov.au/what-clinical-trial. 25. eviQ. Constipation during cancer treatment: NSW Government; 2020. Available from: https://www.eviq.org.au/patients-and-carers/patient-information-sheets/3515-constipation-during-cancer-treatment [cited 2018 Aug 31] 26. eviQ. Diarrhoea during cancer treatment: NSW Government; 2016. Available from: https://www.eviq.org.au/patients-and-carers/patient-information-sheets/3097-diarrhoea-during-cancer-treatment [cited 2020 Aug 25] 27. eviQ. Nausea and vomiting during cancer treatment: NSW Government; 2017 Available from: https://www.eviq.org.au/patients-and-carers/patient-information-sheets/3100-nausea-and-vomiting-during-cancer-treatment. 28. eviQ. Nausea and vomiting during cancer treatment. Patients and carers: NSW Government; 2017. 29. eviQ. Changes to taste or smell during cancer treatment Cancer treatments online: NSW Health; 2017 [updated 31/05/2017. Available from: https://www.eviq.org.au/patients-and-carers/patient-information-sheets/3274-changes-to-taste-or-smell-during-cancer-treat. 30. eviQ. Feeling tired (fatigue) during cancer treatment: NSW Government; 2018 Available from: https://www.eviq.org.au/patients-and-carers/patient-information-sheets/3424-feeling-tired-fatigue-during-cancer-treatme. 31. eviQ. Peripheral neuropathy during cancer treatment: NSW Government; 2018 Available from: https://www.eviq.org.au/patients-and-carers/patient-information-sheets/536-peripheral-neuropathy-during-cancer-treatment [cited 2020 Aug 25] 32. Hearing Problems: Cancer.Net; 2018. Available from: https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/hearing- [cited 2020 Sept 2] problems#:~:text=Some%20types%20of%20chemotherapy%20can,damages%20the%20inner%20ear%20cells. 33. eviQ. Memory changes and chemotherapy (chemo brain): NSW Government; 2011 Available from: https://www.eviq.org.au/patients-and-carers/patient-information-sheets/521-memory-changes-and-chemotherapy-chemo-brain. 34. eviQ. Mouth problems during cancer treatment [eviQ]. NSW Government; 2019. Available from: https://www.eviq.org.au/patients-and-carers/patient-information-sheets/3099-mouth-problems-during-cancer-treatment. 35. Chemotherapy. [Factsheet]. Macmillian Cancer Support.; 2013 Available from: https://www.macmillan.org.uk/documents/cancerinfo/foreignlanguagefactsheets/chemotherapyenglish.pdf. 36. eviQ. A guide to radiotherapy: NSW Goveernment; 2018 Available from: https://www.eviq.org.au/patients-and-carers/radiotherapy-patient-information-sheets/3366-a-guide-to-radiotherapy. 37. eviQ. Introduction to radiotherapy. Patient and carers: NSW Goveernment; 2016. p. https://www.eviq.org.au/patients-and-carers/patient-information-videos/3337-introduction-to-radiotherapy. 38. Cancer treatment for pain relief: Cancer Council NSW; 2015 https://www.cancercouncil.com.au/cancer-information/managing-cancer-side-effects/overcoming-cancer-pain/treatment-pain-relief/. 39. eviQ. Skin changes and skin care during radiotherapy.: NSW Governement.; 2018 [updated 19/12/2018. Available from: https://www.eviq.org.au/patients-and-carers/radiotherapy-patient-information-sheets/3101-skin-changes-and-skin-care-during-radiotherap. 40. Yan TD, Cao CQ, Boyer M, Tin MM, Kennedy C, McLean J, et al. Improving survival results after surgical management of malignant pleural mesothelioma: an Australian institution experience. Ann Thorac Cardiovasc Surg. 2011;17(3):243-9. doi: PMID: 41. McLean J, McCaughan BC. Diagnosis and treatment: the journey of a petient with malignant pleural mesothelioma. Sydney: The Baird Institute; 2013. 79 p. 42. Trimodality therapy for pleural mesothelioma: Cancer council NSW; 2015. Available from: https://www.cancercouncil.com.au/pleural-mesothelioma/active-treatment/trimodality-therapy/ [cited 2020 Aug 26] 43. Schwartz RM, Watson A, Wolf A, Flores R, Taioli E. The impact of surgical approach on quality of life for pleural malignant mesothelioma. Ann Transl Med. 2017;5(11):230. doi: PMID: 44. Arnold DT, Hooper CE, Morley A, White P, Lyburn ID, Searle J, et al. The effect of chemotherapy on health-related quality of life in mesothelioma: results from the SWAMP trial. Br J Cancer. 2015;112(7):1183-9. 45. Warby A, Dhillon HM, Kao S, Vardy JL. A survey of patient and caregiver experience with malignant pleural mesothelioma. Support Care Cancer. 2019;27(12):4675-86. 46. Nagamatsu Y, Oze I, Aoe K, Hotta K, Kato K, Nakagawa J, et al. Quality of life of survivors of malignant pleural mesothelioma in Japan: a cross sectional study. BMC Cancer. 2018;18(1):350. 47. Guglielmucci F, Franzoi IG, Bonafede M, Borgogno FV, Grosso F, Granieri A. "The Less I Think About It, the Better I Feel": A Thematic Analysis of the Subjective Experience of Malignant Mesothelioma Patients and Their Caregivers. Front Psychol. 2018;9:205. 48. Bonafede M, Ghelli M, Corfiati M, Rosa V, Guglielmucci F, Granieri A, et al. The psychological distress and care needs of mesothelioma patients and asbestos-exposed subjects: A systematic review of published studies. Am J Ind Med. 2018;61(5):400-12. 49. Understanding grief: Cancer Council; 2015. Available from: https://www.cancercouncil.com.au/cancer-information/advanced-cancer/grief/ [cited 2020 Aug 26] 50. Sherborne V, Seymour J, Taylor B, Tod A. What are the psychological effects of mesothelioma on patients and their carers? A scoping review. Psychooncology. 2020. 51. Vardy JL, Dhillon H, Kao S, Price M, Tan C, McLean J. Longitudinal HQOL, anxiety and depression and supportive care needs in Mesothelioma: Australian Lung Cancer Trials Group (ALTG); 2013.Available from: https://altg.com.au/altg-13002-health-related-quality-of-life-in-malignant-mesothelioma-h-dhillon/. 52. EORTC. Questionnaires: Quality of life of cancer patients. EORTC Quality of Life: European Organization for Research and Treatment of Cancer (EORTC). p. https://qol.eortc.org/questionnaire/eortc-qlq-c30/. 53. Miyashita M, Wada M, Morita T, Ishida M, Onishi H, Tsuneto S, et al. Development and validation of the Comprehensive Quality of Life Outcome (CoQoLo) inventory for patients with advanced cancer. BMJ Support Palliat Care. 2019;9(1):75-83. 54. Cella D. Functional Assessment of Cancer Therapy. FACIT: FACIT Measurement System; 2020. p. https://www.facit.org/facitorg/questionnaires. 55. Cella D. Functional Assessment of Cancer Therapy: General (FACT-G): American Thoracic Society 2007 Available from: https://qol.thoracic.org/sections/instruments/fj/pages/fact-g.html. 56. Odgerel CO, Takahashi K, Sorahan T, Driscoll T, Fitzmaurice C, Yoko OM, et al. Estimation of the global burden of mesothelioma deaths from incomplete national mortality data. Occup Environ Med. 2017;74(12):851-8. 57. Mesothelioma: MacMillan Cancer Support; 2020.Available from: https://www.macmillan.org.uk/cancer-information-and-support/mesothelioma. 58. Oppenheimer T. UK Mesothelioma Care Relies Heavily On Clinical Nurse Specialists: Mesothelioma.net; 2020. Available from: https://mesothelioma.net/mesothelioma-news/uk-mesothelioma-care-relies-heavily-on-clinical-nurse-specialists/. 59. Nagamatsu Y, Natori Y, Yanai H, Horiuchi S. Impact of a nursing education program about caring for patients in Japan with malignant pleural mesothelioma on nurses' knowledge, difficulties and attitude: a randomized control trial. Nurse Educ Today. 2014;34(7):1087-93. 60. Australian Institute of Health and Welfare. Mesothelioma in Australia 2019. In: infocus, editor. Australian Mesothelioma Registry: Australian Institute of Health and Welfare; 2020. 61. Cavanagh A. The total number of diagnoses and hospitalisations for diseases of the respiratory system (ICD-12) in New Zealand in the 2-017-2018 year. The request may be refined to the total number of hospitalisations only, to exclude diagnoses." In: Ministry of Health NZ, editor.: Ministry of Health, New Zeland; 2018. p. 13. 62. Fennell D, A. Unmet needs and future outlook of mesothelioma management. 2019 20 June 2019. In: (Mesothelioma [Internet]. Springer Cham. Available from: https://doi.org/10.1007/978-3-030-16884-1_23. 63. Hughes N, Arber A. The lived experience of patients with pleural mesothelioma. Int J Palliat Nurs. 2008;14(2):66-71. 64. Moore S, Teehan C, Cornwall A, Ball K, Thomas J. 'Hands of Time': the experience of establishing a support group for people affected by mesothelioma. Eur J Cancer Care (Engl). 2008;17(6):585-92. 65. Cancer Support Groups: Cancer Council NSW; 2015.Available from: https://www.cancercouncil.com.au/get-support/coping-with-cancer/cancer-support-groups/. 66. Asbestos Diseases Research Institute. Mesothelioma journey. Q&A Part 1 Diagnosis and treatment. ADRI; 2018. p. https://adri.org.au/watch-qa-adri-style-10am-on-monday-7th-may-livestreamed/. 67. Asbestos Diseases Research Institute. Mesothelioma journey. Q&A Part 2 What happens when treatment stops working. ADRI; 2019. p. https://adri.org.au/watch-the-qa-adri-style-event-monday-6th-may-2019/. 68. What we know about cancer support groups [Fact Sheet]. Cancer Council NSW; 2013.]. Available from: https://www.cancercouncil.com.au/wp-content/uploads/2011/12/Support-groups-factsheet_Final_LR.pdf [cited 2020 Aug 26] 69. Carers NSW Australia 2010 [cited 2020 4/9/2020]. Available from: https://www.carersnsw.org.au/how-we-help/education. 70. Asbestos Safety and Eradication Agency. Understanding asbestos support and services in Australia. [Report]. Asbestos Safety and Eradication Agency; 2017. Available from: https://www.asbestossafety.gov.au/research-publications/understanding-asbestos-support-and-services-australia. 71. Asbestos Safety and Eradication Agency. Asbestos Support Group Network Highlights Video 19 December 2019 ed: Asbestos Safety & Erdication Agency (ASEA); 2019.