References

Australian Adult Cancer Pain Management Guideline Working Party 2019, Australian adult cancer pain management guideline: Cancer pain management in adults, Cancer Council Australia, Sydney, viewed 6 June 2019,
<https://wiki.cancer.org.au/australiawiki/index.php?oldid=191646>.

Australian Cancer Survivorship Centre 2010, ‘Survivorship care planning’, viewed 27 November 2013,
<http://122.102.106.143/cancersurvivorship/Home>.

Australian Cancer Survivorship Centre 2019, Community support organisations’ cancer survivorship care consensus statement, viewed 10 February 2020,
<https://www.petermac.org/sites/default/files/media-uploads/NGO_ConsensusStatement.pdf>.

Australian Clinical Trials 2015, ‘Potential benefits and risks’, National Health and Medical Research Council, Department of Industry, Innovation and Science, Australian Government, Canberra, viewed 24 July 2019,
<https://www.australianclinicaltrials.gov.au/why-be-part-clinical-trial/potential-benefits-and-potential-risks>.

Australian Commission on Safety and Quality in Health Care (ACSQHC) 2014, Health literacy: taking action to improve safety and quality, ACSQHC, Sydney, viewed 18 February 2020,
<https://www.safetyandquality.gov.au/sites/default/files/migrated/Health-Literacy-Taking-action-to-improve-safety-and-quality.pdf>.

Australian Commission for Safety and Quality in Health Care (ACSQHC) 2015, Credentialing health practitioners and defining their scope of clinical practice: a guide for managers and practitioners, ACSQHC, Sydney, viewed 18 February 2020, <https://www.safetyandquality.gov.au/publications-and-resources/resource-library/credentialing-health-practitioners-and-defining-their-scope-clinical-practice-guide-managers-and-practitioners>.

Australian Commission on Safety and Quality in Health Care (ACSQHC) 2017, National Safety and Quality Health Service Standards guide for hospitals, ACSQHC, Sydney, viewed 18 February 2020,
<https://www.safetyandquality.gov.au/wp-content/uploads/2017/12/National-Safety-and-Quality-Health-Service-Standards-Guide-for-Hospitals.pdf>.

Australian Commission on Safety and Quality in Health Care (ACSQHC) 2019a, Person-centred care, ACSQHC, Sydney, viewed 15 May 2020,
<https://www.safetyandquality.gov.au/our-work/partnering-consumers/person-centred-care>.

Australian Commission on Safety and Quality in Health Care (ACSQHC) 2019b, Australian Hospital Patient Experience Question Set, ACSQHC, Sydney, viewed 25 March 2020,
<https://www.safetyandquality.gov.au/our-work/indicators-measurement-and-reporting/australian-hospital-patient-experience-question-set>.

Australian Commission for Safety and Quality in Health Care (ACSQHC) 2020, ‘NSQHS Standards user guide for medication management in cancer care’, ACSQHC, Sydney, viewed 16 April 2020,
<https://www.safetyandquality.gov.au/publications-and-resources/resource-library/nsqhs-standards-user-guide-medication-management-cancer-care>.

Australian Government Department of Health 2021a, National framework for advance care planning documents, viewed 1 September 2021,
<https://www.health.gov.au/sites/default/files/documents/2021/06/national-framework-for-advance-care-planning-documents.pdf>.

Australian Government Department of Health 2021b, The National Teletrials Compendium, viewed 6 September 2021,
<https://www.health.gov.au/resources/collections/the-national-teletrials-compendium?mc_cid=16bc8b07a7&mc_eid=51c5ef2b1e>.

Australian Institute of Health and Welfare (AIHW) 2016, Australia’s health 2016, Australia’s health series no. 15. Cat. no. AUS 199, AIHW, Canberra.

Australian Institute of Health and Welfare (AIHW) 2017, Access to health services by Australians with disability, viewed 20 February 2020,
<https://www.aihw.gov.au/reports/disability/access-health-services-disability/contents/content>.

Australian Institute of Health and Welfare (AIHW) 2018, Australia’s health 2018, Australia’s health series no. 16. Cat. no. AUS 221, AIHW, Canberra.

Australian Institute of Health and Welfare (AIHW) 2021, Cancer data in Australia, Cancer summary data visualisation, viewed 17 August 2021,
<https://www.aihw.gov.au/reports/cancer/cancer-data-in-australia/contents/cancer-summary-data-visualisation>.

AYA Cancer Fertility Preservation Guidance Working Group 2014, Fertility preservation for AYAs diagnosed with cancer: guidance for health professionals, Cancer Council Australia, Sydney, viewed 20 July 2020,
<https://wiki.cancer.org.au/australia/COSA:AYA_cancer_ fertility_preservation/Introduction>.

Bladé J, Kyle RA 1998, ‘Multiple myeloma in young patients: clinical presentation and treatment approach’, Leukemia & Lymphoma, vol. 30, no. 5–6, pp. 493–501. Bumma N, Nagasaka M, Hemingway G, Miyashita H, Chowdhury T, Kim S, Vankayala HM, et al. 2020, ‘Effect of exposure to agent orange on the risk of monoclonal gammopathy and subsequent transformation to multiple myeloma: a single-center experience from the Veterans Affairs Hospital, Detroit’, Clinical Lymphoma Myeloma and Leukemia, vol. 20, no. 5, pp. 305–311.

Cancer Australia 2015, National Aboriginal and Torres Strait Islander cancer framework, Cancer Australia, Surry Hills, viewed 24 August 2017,
<https://www.canceraustralia.gov.au/publications-and-resources/cancer-australia-publications/national-aboriginal-and-torres-strait-islander-cancer-framework>.

Cancer Australia 2017, Principles of cancer survivorship, Australian Government, Sydney, viewed 18 February 2020,
<https://canceraustralia.gov.au/sites/default/files/publications/principles-cancer-survivorship/pdf/pocs_-_principles_of_cancer_survivorship.pdf>.

Cancer Australia 2019a, Principles of multidisciplinary care, Australian Government, Sydney, viewed 18 July 2019,
<https://canceraustralia.gov.au/system/tdf/guidelines/all_about_multidisciplinary_care.pdf?file=1&type=node&id=3551>.

Cancer Australia 2019b, ‘Cancer incidence’, viewed 18 February 2020,
<https://ncci.canceraustralia.gov.au/diagnosis/cancer-incidence/cancer-incidence>.

Cancer Australia 2020, Cancer care in the time of COVID-19: a conceptual framework for the management of cancer during a pandemic, Australian Government, Sydney, viewed
3 September 2020, <https://www.canceraustralia.gov.au/publications-and-resources/cancer-australia-publications/cancer-care-time-covid-19-conceptual-framework-management-cancer-during-pandemic>.

Cancer Council Australia 2018, ‘Prevention’, Cancer Council Australia, Sydney, viewed 18 July 2019,
<https://www.cancer.org.au/preventing-cancer>.

Cancer Council Australia 2019, ‘Complementary and alternative therapies’, Cancer Council Australia, Sydney, viewed 22 July 2019,
<https://www.cancer.org.au/about-cancer/treatment/complementary-therapies-and-cancer.html>.

Cancer Council Victoria 2019, ‘Palliative care’, Cancer Council Victoria, viewed 7 October 2019,
<https://www.cancervic.org.au/cancer-information/treatments/treatments-types/palliative_care/palliative-care-treatment.html>.

Cancer Research in Primary Care 2016, Principles statement: Shared care, PC4 Shared Care Working Group, Melbourne, viewed 4 October 2019,
<http://pc4tg.com.au/wp-content/uploads/2016/07/PC4-Principles-Statement-shared-care-2016-1.pdf>.

Charalambous A, Wells M, Campbell P, Torrens C, Östlund U, Oldenmenger W, et al. 2018, ‘A scoping review of trials of interventions led or delivered by cancer nurses’, International Journal of Nursing Studies, vol. 86, pp. 36–43.

Clinical Oncology Society of Australia (COSA) 2013, Special Issue: COSA’s 40th Annual Scientific Meeting, Cancer Care Coming of Age, 12–14 November 2013, Adelaide Convention Centre, Asia-Pacific Journal of Clinical Oncology, vol. 9, no. 3, pp. 61–98.

Clinical Oncology Society of Australia (COSA) 2014, Psychosocial management of AYAs diagnosed with cancer: guidance for health professionals, COSA, Sydney, viewed 7 October 2019, <http://wiki.cancer.org.au/australia/COSA:Psychosocial_management_of_AYA_cancer_patients>.

Clinical Oncology Society of Australia (COSA) 2015, Cancer care coordinator: position statement, COSA, Sydney, viewed 22 July 2019,
<https://www.cosa.org.au/media/332296/cancer-care-coordinator-position-statement_final-endorsed-by-council_161115_cnsa-logo.pdf>.

Clinical Oncology Society of Australia (COSA) 2016, Australasian tele-trial model: access to clinical trials closer to home using tele-health a national guide for implementation, v1.7, COSA, Sydney, viewed 18 July 2019,
<https://www.cosa.org.au/media/332325/cosa-teletrial-model-final-19sep16.pdf>.

Clinical Oncology Society of Australia (COSA) 2018, COSA position statement on exercise in cancer care, COSA, Sydney, viewed 22 July 2019,
<https://www.cosa.org.au/media/332488/cosa-position-statement-v4-web-final.pdf>.

Commonwealth Department of Health 2017, Out-of-pocket expenses for private medical treatment (informed financial consent), Commonwealth of Australia, Canberra.

Cormie P, Atkinson M, Bucci L, Cust A, Eakin E, Hayes S, et al. 2018, ‘Clinical Oncology Society of Australia position statement on exercise in cancer care’, Medical Journal of Australia, vol. 209, no. 4, pp. 184–187.

Cormie P, Zopf EM, Zhang X, Schmitz KH 2017, ‘The impact of exercise on cancer mortality, recurrence, and treatment-related adverse effects’, Epidemiologic Reviews, vol. 39, no. 1, pp. 71–92.

Decoster L, Van Puyvelde K, Mohile S, Wedding U, Basso U, Colloca G, et al. 2015, ‘Screening tools for multidimensional health problems warranting a geriatric assessment in older cancer patients: an update on SIOG recommendations’, Annals of Oncology, vol. 26, no.1, pp 288–300.

Emery J 2014, ‘Cancer survivorship – the role of the GP’, Australian Family Physician, vol. 43, no. 8, pp. 521–525.

Engelhardt M, Dold S, Ihorst G, Zober A, Moller M, Reinhardt H, et al. 2016, ‘Geriatric assessment in multiple myeloma patients: validation of the International Myeloma Working

Group (IMWG) score and comparison with other common comorbidity scores’, Haematologica, vol. 101, no. 9, pp. 1110–1119.

eviQ 2019, ‘Safe handling and waste management of hazardous drugs’, Cancer Institute NSW, Sydney, viewed 22 July 2019,
<https://www.eviq.org.au/clinical-resources/administration-of-antineoplastic-drugs/188-safe-handling-and-waste-management-of-hazardou>.

Ferrari A, Thomas D, Franklin A, Hayes-Lattin B, Mascarin M, van der Graaf W, et al. 2010, ‘Starting an adolescent and young adult program: some success stories and some obstacles to overcome’, Journal of Clinical Oncology, vol. 28, no. 32, pp. 4850–4857.

Fitch M 2000, ‘Supportive care for cancer patients’, Hospital Quarterly, vol. 3, no. 4, pp. 39–46.

Fitch MI 2008, ‘Supportive care framework’, Canadian Oncology Nursing Journal, vol. 18, no. 1, pp. 6–14.

Gilligan T, Coyle N, Frankel RM, Berry DL, Bohlke K, Epstein, RM, et al. 2017, ‘Patient– clinician communication: American Society of Clinical Oncology consensus guideline’, Journal of Clinical Oncology, vol. 35, no. 31, pp. 3618–3623.

Hack TF, Reuther DJ, Weir LM, Grenier D, Degner LF 2012, ‘Promoting consultation recording practice in oncology: identification of critical implementation factors and determination of patient benefit’, Psycho-Oncology, vol. 22, pp. 1273–1282.

Haines IE 2011, ‘Managing patients with advanced cancer: the benefits of early referral for palliative care’, Medical Journal of Australia, vol. 194, no. 3, pp. 107–108.

Hayes SC, Newton RU, Spence RR, Galvao DA 2019, ‘The Exercise and Sports Science Australia position statement: exercise medicine in cancer management’, Journal of Science and Medicine in Sport, vol. 22, no. 11, pp. 1175–1199.

Hewitt M, Greenfield S, Stovall E 2006, From cancer patient to cancer survivor: lost in transition, National Academies Press, Washington.

Hillengass J, Usmani S, Rajkumar SV, Durie BGM, Mateos M-V, Lonial S, et al. 2019, ‘International myeloma working group consensus recommendations on imaging in monoclonal plasma cell disorders’, Lancet Oncology, vol. 20, no. 6, pp. e302–312.

International Myeloma Foundation (IMF) 2019, ‘International Staging System (ISS) and Revised ISS (R-ISS)’, viewed 1 September 2021,
<https://www.myeloma.org/international-staging-system-iss-reivised-iss-r-iss>.

Islami F, Goding Sauer A, Gapstur SM, Jemal A 2019, ‘Proportion of cancer cases attributable to excess body weight by US State 2011–2015’, JAMA Oncology, vol. 5, no. 3, p. 384.

Jefford M, Ward AC, Lisy K, Lacey K, Emery JD, Glaser AW, et al. 2017, ‘Patient-reported outcomes in cancer survivors: a population-wide cross-sectional study’, Support Care Cancer, no. 10, pp. 3171–3179.

Kazandjian D 2016, ‘Multiple myeloma epidemiology and survival: a unique malignancy’, Seminars in Oncology, vol. 43, no. 6, pp. 676–681.

Kyle RA, Gertz MA, Witzig TE, Lust JA, Lacy MQ, Dispenzieri A, et al. 2003, ‘Review of 1027 patients with newly diagnosed multiple myeloma’, Mayo Clinic Proceedings, vol. 78, no. 1, pp. 21–33.

Kyrgiou M, Kalliala I, Markozannes G, Gunter MJ, Paraskevaidis E, Gabra H, et al. 2017, ‘Adiposity and cancer at major anatomical sites: umbrella review of the literature,’ BMJ, no. 356, p. j477.

Laidsaar-Powell R, Butow P, Boyle F, Juraskova I 2018a, ‘Facilitating collaborative and effective family involvement in the cancer setting: guidelines for clinicians (TRIO guidelines-1)’, Patient Education and Counseling, vol. 101, no. 6, pp. 970–982.

Laidsaar-Powell R, Butow P, Boyle F, Juraskova I 2018b, ‘Managing challenging interactions with family caregivers in the cancer setting: guidelines for clinicians (TRIO guidelines-2)’, Patient Education and Counselling, vol. 101, no. 6, pp. 983–994.

Lauby-Secretan B, Scoccianti C, Loomis D, Grosse Y, Bianchini F, Straif K 2016, ‘Body fatness and cancer – viewpoint of the IARC Working Group’, New England Journal of Medicine, vol. 375, no. 8, pp. 794–798.

Lisy K, Langdon L, Piper A, Jefford M 2019, ‘Identifying the most prevalent unmet needs of cancer survivors in Australia: a systematic review’, Asia-Pacific Journal of Clinical Oncology, vol. 15, no. 5, pp. e68–e78.

Lynch HT, Sanger WG, Pirruccello S, Quinn- Laquer B, Weisenburger DD 2001, ‘Familial multiple myeloma: a family study and review of the literature’, Journal of the National Cancer Institute, vol. 93, no.19, pp. 1479–1483.

Marinac CR, Ghobrial IM, Birmann BM, Soiffer J, Rebbeck TR 2020, ‘Dissecting racial disparities in multiple myeloma’, Blood Cancer Journal, vol. 10, no. 2, p. 19.

Monterosso L, Platt V, Bulsara M, Berg M 2019, ‘Systematic review and meta-analysis of patient reported outcomes for nurse-led models of survivorship care for adult cancer patients’, Cancer Treatment Reviews Journal, no. 73, pp. 62–72.

Myeloma Frailty Score Calculator, viewed 18 August 2021,
<http://www.myelomafrailtyscorecalculator.net>.

My Health Record 2019, ‘What is My Health Record?’ Australian Government, Sydney, viewed 17 December 2019,
<https://www.myhealthrecord.gov.au/for-you-your-family/what-is-my-health-record>.

National Cancer Survivorship Initiative (NCSI) 2015, ‘Stratified pathways of care’, National Health Service, UK, viewed 2 March 2015,
<http://www.ncsi.org.uk/what-we-are-doing/risk-stratifiedpathways-of-care>.

National Disability Insurance Agency 2018, ‘How the NDIS works’, NDIS, Canberra, viewed 3 June 2019,
<https://www.ndis.gov.au/understanding/how-ndis-works>.

National Health and Medical Research Council (NHMRC) 2013, Personalised medicine and genetics, viewed 3 June 2019,
<https://www.nhmrc.gov.au/about-us/publications/personalised-medicine-and-genetics>.

National Health and Medical Research Council (NHMRC) 2014, Talking with your patients about complementary medicine: a resource for clinicians, NHMRC, Canberra, viewed 18 February 2020, <https://www.caresearch.com.au/caresearch/ClinicalPractice/PatientConsiderations/ComplementaryTherapies/tabid/1258/Default.aspx>.

palliAGED 2018, ‘Needs Assessment’, Flinders University, Bedford Park, viewed 1 October 2019,
<https://www.palliaged.com.au/tabid/4879/Default.aspx>.

Palliative Care Australia 2018, National Palliative Care Standards, 5th edn, Palliative Care Australia, Canberra, viewed 24 July 2019,
<http://palliativecare.org.au/wp-content/uploads/dlm_uploads/2018/11/PalliativeCare-National-Standards-2018_Nov-web.pdf>.

Palliative Care Victoria 2019, ‘Spiritual care’, Palliative Care Victoria, Melbourne, viewed 22 July 2019,
<https://www.pallcarevic.asn.au/healthcare-professionals/about-palliative-care/care/spiritual-care>.

Peter MacCallum Cancer Centre 2019, Community support organisations’ cancer survivorship care consensus statement, viewed 10 February 2020,
<https://www.petermac.org/sites/default/files/media-uploads/NGO_ConsensusStatement.pdf>.

Phillips JK, Purdie GL 2007, New Zealand (NZ) Pacific Peoples and Maori Have a Higher Risk of Developing Multiple Myeloma Than Other New Zealanders’, Blood, vol. 110, no. 11, pp. 4760.

Quach H, Prince H 2019, Clinical practice guideline: multiple myeloma, viewed 17 August 2021,
<https://myeloma.org.au/wp-content/uploads/2019/10/myeloma_clinical_practice_guideline_oct19.pdf>.

Queensland Health 2015, Sad news sorry business: guidelines for caring for Aboriginal and Torres Strait Islander people through death and dying, State Government of Queensland, Brisbane, viewed 22 July 2019,
<https://www.health.qld.gov.au/ data/assets/pdf_file/0023/151736/sorry_business.pdf>.

Rajkumar SV, Dimopoulos MA, Palumbo A, Blade J, Merlini G, Mateos MV, et al. 2014, ‘International Myeloma Working Group updated criteria for the diagnosis of multiple myeloma’, The Lancet Oncology, vol. 15, no. 12, pp. e538–e548.

Royal Australian and New Zealand College of Radiologists (RANZCR) Faculty of Radiation Oncology 2013, ‘Management of waiting lists in Radiation Oncology: Quality in the timeliness of patient care. Australia: RANZCR’, viewed 9 September 2021, <https://www.scribd.com/document/338276940/Management-of-Waiting-Lists-in-Radiation-Oncology>.

Sergentanis TN, Zagouri F, Tsilimidos G, Tsagianni A, Tseliou M, Dimopoulos MA, et al. 2015, ‘Risk factors for multiple myeloma: a systematic review of meta-analyses’, Clinical Lymphoma Myeloma and Leukemia, vol. 15, no.10, pp. 563–577.

Shirley MH, Sayeed S, Barnes I, Finlayson A, Ali R 2013, ‘Incidence of haematological malignancies by ethnic group in England, 2001–7’, British Journal of Haematology, vol. 163, no. 4, pp. 465–477.

Silver JK, Baima J 2013, ‘Cancer prehabilitation: an opportunity to decrease treatment-related morbidity, increase cancer treatment options, and improve physical and psychological health outcomes’, American Journal of Physical Medicine & Rehabilitation, vol. 92, no. 8,

  1. 715–727.

Silver JK 2015, ‘Cancer prehabilitation and its role in improving health outcomes and reducing health care costs’, Seminars in Oncology Nursing, vol. 31, no. 1, pp. 1–3.

Sjoquist K, Zalcberg J 2013, ‘Clinical trials – advancing cancer care’, Cancer Forum, vol. 37, no. 1, pp. 80–88.

Smith A, Bellizzi K, Keegan T, Zebrack B, Chen V, Neale A, et al. 2013, ‘Health-related quality of life of adolescent and young adult patients with cancer in the United States: the Adolescent and Young Adult Health Outcomes and Patient Experience Study’, Journal of Clinical Oncology, vol. 31, no. 17, pp. 2136–2145.

Smith S, Case L, Waterhouse K, Pettitt N, Beddard L, Oldham J, et al. 2012, A blueprint of care for teenagers and young adults with cancer, Teenage Cancer Trust, Manchester, UK.

Steer B, Marx G, Singhal N, McJannett M, Goldstein D, Prowse R 2009, ‘Cancer in older people: a tale of two disciplines’, Internal Medicine Journal, vol. 39, pp. 771–775.

Stenehjem JS, Kjærheim K, Bråtveit M, Samuelsen SO, Barone-Adesi F, Rothman N, et al. 2015, ‘Benzene exposure and risk of lymphohaematopoietic cancers in 25,000 offshore oil industry workers’, British Journal of Cancer, vol. 112, no. 9, pp. 1603–1612.

Tan SY, Turner J, Kerin-Ayres K, Butler S, Deguchi C, Khatri S, et al. 2019, ‘Health concerns of cancer survivors after primary anti-cancer treatment’, Support Cancer Care, no. 10, pp. 3739–3747.

Temel J, Greer J, Muzikansky A, Gallagher E, Admane S, Jackson V 2010, ‘Early palliative care for patients with non-metastatic non-small cell lung cancer’, New England Journal of Medicine, vol. 363, no. 8, pp. 733–742.

Terpos E, Zamagni E, Lentzsch S, Drake MT, García-Sanz R, Abildgaard N, 2021, ‘Bone Working Group of the International Myeloma Working Group. Treatment of multiple myeloma- related bone disease: recommendations from the Bone Working Group of the International Myeloma Working Group’, Lancet Oncology, vol. 22, no. 3, pp. 119–130.

Vardy JL, Raymond JC, Koczwara B, Lisy K, Cohn RJ, Joske D, et al. 2019, ‘Clinical Oncology Society of Australia position statement on cancer survivorship care’, Australian Journal of General Practice, vol. 48, no. 12, pp. 833–836.

Vijayvergia N, Denlinger CS 2015, ‘Lifestyle factors in cancer survivorship: where we are and where we are headed’, Journal of Personalized Medicine, vol. 5, no. 3, pp. 243–263.

Wildiers H, Heeren P, Puts M, Topinkova E, Maryska LG, Janssen-Heijnen MLG, et al. 2014, ‘International Society of Geriatric Oncology Consensus on geriatric assessment in older patients with cancer’, Journal of Clinical Oncology, vol. 32, no. 24, pp. 2595–2603.

World Health Organization (WHO) 2018, ‘Malnutrition’, WHO, Geneva, viewed 18 July 2019,
<https://www.who.int/news-room/fact-sheets/detail/malnutrition>.

Zimmermann C, Swami N, Krzyzanowska M, Hannon B, Leighl N, Oza A, et al. 2014, ‘Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial’, Lancet, vol. 383, no. 9930, pp. 1721–1730.