1 Data retrieved from IARC Global Cancer Observatory https://gco.iarc.fr/
2 Survivorship – the next frontier of cancer care improvement, on the European Organisation for Research and Treatment of Cancer website (2018): https://www.eortc.org/blog/2018/09/04/survivorship-the-next- frontier-of-cancer-care-improvement/(accessed April 2020).
3 Couespel, N., et al., Strengthening Europe in the fight against cancer, Study for the committee on Environment, Public Health and Food Safety, Policy Department for Economic, Scientific and Quality of Life Policies, European Parliament, Luxembourg, 2020.
4 Albreht T, Borrás Andrés JM, Dalmas M, et al. Survivorship and rehabilitation: policy recommendations for quality improvement in cancer survivorship and rehabilitation in EU Member States IN Albreht T, Kiasuwa R, Van den Bulcke M. European Guide on Quality Improvement in Comprehensive Cancer Control. Cancer Control Joint Action (Chapter 7); 2017.
5 Albreht T, Borrás Andrés JM, Dalmas M, et al. Survivorship and rehabilitation: policy recommendations for quality improvement in cancer survivorship and rehabilitation in EU Member States IN Albreht T, Kiasuwa R, Van den Bulcke M. European Guide on Quality Improvement in Comprehensive Cancer Control. Cancer Control Joint Action (Chapter 7); 2017.
6 Council of the European Union. 2876th Employment, Social Policy, Health and Consumer Affairs, Council meeting: conclusions on reducing the burden of cancer. Luxembourg, Employment, Social Policy, Health and Consumer Affairs Council; 2008: https://register.consilium.europa.eu/doc/srvl=EN&f=ST%209636%202008%20INIT (accessed April 2020).
7 Couespel, N., et al., Strengthening Europe in the fight against cancer, Study for the committee on Environment, Public Health and Food Safety, Policy Department for Economic, Scientific and Quality of Life Policies, European Parliament, Luxembourg, 2020.
8 For more information concerning the European Cancer Organisation Survivorship and Quality of Life Network, please visit: https://www.europeancancer.org/topic-networks/6:survivorship-and-quality-of-life-network.html
9 US National Cancer Institute’s definition of a cancer survivor: https://www.cancer.gov/publications/dictionaries/cancer-terms/def/survivor
10 Rowland J, Kent E, Forsythe L, et al. Cancer survivorship research in Europe and the United States: where have we been, where are we going, and what can we learn from each other? Cancer. 2013 Jun 1;119 Suppl 11(0 11):2094-108. doi: 10.1002/cncr.28060.
11 Multinational Association of Supportive Care in Cancer (MASCC)’s definition of supportive care: https://www.mascc.org/mascc-strategic-plan (accessed July 2020).
12 Olver I, Keefe D, Herrstedt J, et al. Supportive Care in Cancer-A MASCC Perspective. Support Care Cancer. 2020 Apr 27.
13 Couespel, N., et al., Strengthening Europe in the fight against cancer, Study for the committee on Environment, Public Health and Food Safety, Policy Department for Economic, Scientific and Quality of Life Policies, European Parliament, Luxembourg, 2020.
14 Albreht T, Borrás Andrés JM, Dalmas M, et al. Survivorship and rehabilitation: policy recommendations for quality improvement in cancer survivorship and rehabilitation in EU Member States IN Albreht T, Kiasuwa R, Van den Bulcke M. European Guide on Quality Improvement in Comprehensive Cancer Control. Cancer Control Joint Action (Chapter 7); 2017.
15 Albreht T, Borrás Andrés JM, Dalmas M, et al. Survivorship and rehabilitation: policy recommendations for quality improvement in cancer survivorship and rehabilitation in EU Member States IN Albreht T, Kiasuwa R, Van den Bulcke M. European Guide on Quality Improvement in Comprehensive Cancer Control. Cancer Control Joint Action (Chapter 7); 2017.
16 Hewitt M, Greenfield S, Stovall E. From cancer patient to cancer survivor: lost in transition. Washington, DC, US National Academy of Sciences; 2006.
17 Wolff SN. The burden of cancer survivorship. a pandemic of treatment success. In Feuerstein M, ed. Handbook of cancer survivorship. New York, Springer; 2006:7–18.
18 Earle CC. Quality of care. In Feuerstein M, ed. Handbook of cancer survivorship. New York, Springer; 2006:19–42.
19 American Society of Clinical Oncology. ASCO cancer treatment and survivorship care plans. Alexandria, VA, American Society of Clinical Oncology; 2016 (http://www.cancer.net/survivorship/follow-care-after-cancer-treatment/asco-cancer-treatment-and-survivorship-care-plans; accessed April 2020).
20 Keesing S, McNamara, Rosenwax L. Cancer survivors’ experience of using survivorship care plans: a systematic review of qualitative studies. Journal of Cancer Survivorship, 2015 ;9: pp.260–268.
21 Couespel, N., et al., Strengthening Europe in the fight against cancer, Study for the committee on Environment, Public Health and Food Safety, Policy Department for Economic, Scientific and Quality of Life Policies, European Parliament, Luxembourg, 2020.
22 https://www.oeci.eu/accreditation/Page.aspx?name=OECI_STANDARDS
23 https://www.europeancancer.org/2-content/8-erqcc
24 https://www.europeancancer.org/2-standard/89-the-code-survivorship-and-rehabilitation
25 Holland JC, Reznik I. Pathways for psychosocial care of cancer survivors. Cancer 2005; 104: 2624-2637. doi:10.1002/cncr.21252.
26 NCCN (National Comprehensive Cancer Network). Distress management practice guidelines. J Natl Compr Canc Netw. 2003; 1: 344–374.
27 Chambers SK, Dunn J, Occhipinti S, et al. A systematic review of the impact of stigma and nihilism on lung cancer outcomes. BMC Cancer. 2012 May 20; 12: p.184.
28 Henningfield MF, Adjei AA. Lung Cancer Awareness Month - A Lot of Progress, But More Work Needs to Be Done. J Thorac Oncol. 2017 Nov; 12(11): pp.1603-1605.
29 Vodermaier A, Lucas S, Linden W, et al. Anxiety after diagnosis predicts lung cancer-specific and overall survival in patients with stage III non-small cell lung cancer: a population-based cohort study. J Pain Symptom Manage. 2017 Jun;53(6):1057-1065.
30 Carlson L, Bultz B. Efficacy vs. cost of psychosocial interventions: an evidence-based call for action. Oncol Exchange. 2002; 1(2): pp.24-29.
31 Carlson L, Bultz BD. Efficacy and medical cost offset of psychosocial interventions in cancer care: making the case for economic analyses. Psychooncology. 2004; 13(12): pp.837-849.
32 European Cancer Organisation. Position Statement - Integrated Cancer Care: Bringing Primary Care and Secondary Care Together. https://www.europeancancer.org/resources/57:integrated-cancer-care-bringing-primary-care-and-secondary-care-together.html (accessed July 2020).
33 Gysels M, Higginson IJ, Rajasekaran M, et al. Improving supportive and palliative care for adults with cancer: research evidence. London: National Institute for Health and Clinical Excellence; 2004.
34 Jacobsen PB, Shibata D, Siegel EM. Evaluating the quality of psychosocial care in outpatient medical oncology settings using performance indicators. Psychooncology. 2011 Nov; 20(11): pp.1221-1227.
35 Raingruber B. The Effectiveness of Psychosocial Interventions with Cancer Patients: An Integrative Review of the Literature (2006–2011). ISRN Nursing, 2011, 638218.
36 Faller H, Schuler M, Richard M, et al. Effects of Psycho-Oncologic Interventions on Emotional Distress and Quality of Life in Adult Patients With Cancer: Systematic Review and Meta-Analysis. J Clin Oncol. 2013 Feb 20; 31(6): pp.782-93.
37 Albreht T, Kiasuwa R, Van den Bulcke M. European Guide on Quality Improvement in Comprehensive Cancer Control. Cancer Control Joint Action (Chapter 4); 2017.
38 Gysels M, Higginson IJ, Rajasekaran M, et al. Improving supportive and palliative care for adults with cancer: research evidence. London: National Institute for Health and Clinical Excellence; 2004.
39 Loscalzo M, Clark KL, Holland J. Successful strategies for implementing biopsychosocial screening. Psychooncology. 2011 May; 20(5): pp. 455-462.
40 Sussman J, Baldwin LM. The Interface of Primary and Oncology Specialty Care: From Diagnosis Through Primary Treatment. J Natl Cancer Inst Monogr. 2010;2010(40):18-24.
41 CPAC, Bultz B. Canadian Partnership Against Cancer - Guide to Implementing Screening for Distress, the 6th Vital Sign Moving Towards Person-Centered Care; 2009. Retrieved from Toronto: http://www.virtualhospice.ca/Assets/Distress-%20CPAC_20150713161546.pdf (accessed July 2020).
42 Gysels M, Higginson IJ, Rajasekaran M, et al. Improving supportive and palliative care for adults with cancer: research evidence. London: National Institute for Health and Clinical Excellence; 2004.
43 Nekhlyudov L, O’Malley DM, Hudson, SV. Integrating Primary Care Providers in the Care of Cancer Survivors: Gaps in Evidence and Future Opportunities. Lancet Oncol. 2017 Jan; 18(1): e30-e38.
44 NCCN Clinical Practice Guidelines in Oncology, Distress Management 2.2017- Sept 2017
45 Jacobsen PB, Shibata D, Siegel EM. Evaluating the quality of psychosocial care in outpatient medical oncology settings using performance indicators. Psychooncology. 2011 Nov; 20(11): pp.1221-1227.
46 Couespel, N., et al., Strengthening Europe in the fight against cancer, Study for the committee on Environment, Public Health and Food Safety, Policy Department for Economic, Scientific and Quality of Life Policies, European Parliament, Luxembourg, 2020.
47 Kim Y, Shaffer KM, Carver CS. (2016). Quality of life of family caregivers 8 years after a relative’s cancer diagnosis: Follow-up of the National Quality of Life Survey for Caregivers. Psycho-Oncology, 25, 266-274.
48 Couespel, N., et al., Strengthening Europe in the fight against cancer, Study for the committee on Environment, Public Health and Food Safety, Policy Department for Economic, Scientific and Quality of Life Policies, European Parliament, Luxembourg, 2020.
49 https://www.macmillan.org.uk/_images/cured-but-at-what-cost-report_tcm9-295213.pdf
50 Davies AN, Thompson J. Parasympathomimetic drugs for the treatment of salivary gland dysfunction due to radiotherapy. Cochrane Database of Systematic Reviews 2015, Issue 10. Art. No.: CD003782.
51 Rapoport BL, van Eden R, Sibuad V, et al. Supportive care for patients undergoing immunotherapy. Support Care Cancer 2017 Oct.; 25(10): pp.3017–3030.
52 van den Beuken-van Everdingen MH, Hochstenbach LM, Joosten EA, et al. Update on prevalence of pain in patients with cancer: systematic review and meta-analysis. J Pain Symptom Manage 2016; 51: 1070-90.
53 Brown MR, Ramirez JD, Farquhar-Smith P. Pain in cancer survivors. Br J Pain 2014; 8: 139-153.
54 Jiang C, Wang H, Wang Q et al. Prevalence of Chronic Pain and High-Impact Chronic Pain in Cancer Survivors in the United States. JAMA Oncol 2019; 5: 1224-6.
55 Bennett MI, Eisenberg E, Ahmedzai SH, et al. Standards for the management of cancer-related pain across Europe–a position paper from the EFIC Task Force on Cancer Pain. Eur J Pain 2019; 23: 660–8
56 Cherny NI, Baselga J, de Conno F, et al. Formulary availability and regulatory barriers to accessibility of opioids for cancer pain in Europe: a report from the ESMO/EAPC Opioid Policy Initiative. Ann Oncol 2010; 21: 615-26.
57 Bennett MI, Kaasa S, Barke A, et al. The IASP classification of chronic pain for ICD-11: chronic cancer-related pain. Pain 2019; 160: 38-44.
58 https://www.sip-platform.eu/resources/details/sip-presents-its-cancer-position-paper
59 WHO’s factsheet on sexual health: https://www.who.int/health-topics/sexual-health#tab=tab_2
60 The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med. 1995 Nov;41(10):1403-9. doi: 10.1016/0277-9536(95)00112-k.
61 Flynn KE, Lin L, Bruner DW, et al. Sexual Satisfaction and the Importance of Sexual Health to Quality of Life Throughout the Life Course of U.S. Adults. J Sex Med. 2016 Nov;13(11):1642-1650. doi: 10.1016/j.jsxm.2016.08.011.
62 Kashdan TB, Goodman FR, Stiksma M, et al. Sexuality leads to boosts in mood and meaning in life with no evidence for the reverse direction: A daily diary investigation. Emotion. 2018 Jun;18(4):563-576. doi: 10.1037/ emo0000324.
63 Palmore EB. Predictors of the longevity difference: a 25-year follow-up. Gerontologist. 1982 Dec;22(6):513-8. doi: 10.1093/geront/22.6.513.
64 Jackson SE, Wardle J, Steptoe A, et al. Sexuality after a cancer diagnosis: A population-based study. Cancer. 2016 Dec 15;122(24):3883-3891. doi: 10.1002/cncr.30263.
65 Traa MJ, De Vries J, Roukema JA, et al. The sexual health care needs after colorectal cancer: the view of patients, partners, and health care professionals. Support Care Cancer. 2014 Mar;22(3):763-72.
66 Bonini Colmano CM, Molnar S, Salvano LM, et al. Sexual dysfunction in patients with cancer. J Clin Oncol. 2007 Jun;25(18_suppl):19653. DOI: 10.1200/jco.2007.25.18_suppl.19653
67 Bober SL, Zhou ES, Chen B, et al. Sexual function in childhood cancer survivors: a report from Project REACH. J Sex Med. 2013 Aug;10(8):2084-93. doi: 10.1111/jsm.12193.
68 Zebrack BJ, Foley S, Wittmann D, et al. Sexual functioning in young adult survivors of childhood cancer. Psychooncology. 2010 Aug;19(8):814-22. doi: 10.1002/pon.1641.
69 Sukhu T, Ross S, Coward RM. Urological Survivorship Issues Among Adolescent Boys and Young Men Who Are Cancer Survivors. Sex Med Rev. 2018 Jul;6(3):396-409. doi: 10.1016/j.sxmr.2017.12.007.
70 Perz J, Ussher JM, Gilbert E, et al. Feeling well and talking about sex: psycho-social predictors of sexual functioning after cancer. BMC Cancer. 2014 Mar 28;14:228. doi: 10.1186/1471-2407-14-228.
71 Dobkin PL, Bradley I. Assessment of Sexual Dysfunction in Oncology Patients. J Psy Oncology 1991; 9(1): 43-74.
72 Ussher JM, Perz J, Gilbert E, et al. Perceived causes and consequences of sexual changes after cancer for women and men: a mixed-method study. BMC Cancer. 2015 Apr 11;15:268. doi: 10.1186/s12885-015-1243-8.
73 Ussher JM, Perz J, Gilbert E, et al. Perceived causes and consequences of sexual changes after cancer for women and men: a mixed-method study. BMC Cancer. 2015 Apr 11;15:268. doi: 10.1186/s12885-015-1243-8.
74 Perz J, Ussher JM, Gilbert E, et al. Feeling well and talking about sex: psycho-social predictors of sexual functioning after cancer. BMC Cancer. 2014 Mar 28;14:228. doi: 10.1186/1471-2407-14-228.
75 Matthew AG, Goldman A, Trachtenberg J, et al. Sexual dysfunction after radical prostatectomy: ment, restricted use of treatment and distress. J Urology 2005; 174:2105-2110. Doi: 10.1097/01.000181206.16447.e2.
76 Twitchell DK, Wittmann DA, Hotaling JM, et al. Psychological Impacts of Male Sexual Dysfunction in Pelvic Cancer Survivorship. Sex Med Rev. 2019 Oct;7(4):614-626. doi: 10.1016/j.sxmr.2019.02.003.
77 Loeb S, Salter CA, Nelson CJ, et al. A Call to Arms: Increasing Our Understanding of the Impact of Prostate Cancer on the Sexual Health of Partners. J Sex Med. 2020 Mar;17(3):361-363. doi: 10.1016/j.jsxm.2019.11.262.
78 Hawkins Y, Ussher J, Gilbert E, et al. Changes in sexuality and intimacy after the diagnosis and treatment of cancer: The experience of partners in a sexual relationship with a person with cancer. Cancer Nursing 2009; 32(4): 271–280. doi :10.1097/NCC.0b013e31819b5a93
79 Hodges LJ, Humphris GM, Macfarlane G, et al. A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc Sci Med. 2005 Jan;60(1):1-12.
80 Maughan K, Heyman B, Matthews M, et al. In the shadow of risk: How men cope with a partner’s gynaecological cancer. Int J Nurs Stud. 2002 Jan;39(1):27-34. doi: 10.1016/s0020-7489(01)00004-9.
81 Rolland JS. In sickness and in health: the impact of illness on couples’ relationships. J Marital Fam Ther 1994; 20: 327-347. doi: 10.1111/j.1752-0606.1994.tb00125.x.
82 DeSantis CE, Lin CC, Mariotto AB, et al. Cancer treatment and survivorship statistics, 2014. CA
Cancer J Clin. Jul-Aug 2014;64(4):252-71. doi: 10.3322/caac.21235.
83 Ream E, Quennell A, Fincham L, et al. Supportive care needs of men living with prostate cancer in England: a survey. Br J Cancer. 2008 Jun 17;98(12):1903-9. doi: 10.1038/sj.bjc.6604406.
84 Bond CB, Jensen PT, Groenvold M, et al. Prevalence and possible predictors of sexual dysfunction and self-reported needs related to the sexual life of advanced cancer patients. Acta Oncol. 2019 May;58(5):769-775. doi: 10.1080/0284186X.2019.
85 Mutsch J, Friedrich M, Leuteritz K, et al. Sexuality and cancer in adolescents and young adults - a comparison between reproductive cancer patients and patients with non-reproductive cancer. BMC Cancer. 2019 Aug 22;19(1):828. doi: 10.1186/s12885-019-6009-2.
86 Ussher JM, Perz J, Rose D, et al. Sexual Rehabilitation After Prostate Cancer Through Assistive Aids: A Comparison of Gay/Bisexual and Heterosexual Men. J Sex Res. 2019 Sep;56(7):854-869. doi: 10.1080/00224499.2018.1476444.
87 Rosser BRS, Kohli N, Polter EJ, et al. The Sexual Functioning of Gay and Bisexual Men Following Prostate Cancer Treatment: Results from the Restore Study. Arch Sex Behav. 2020 Jul;49(5):1589-1600. doi: 10.1007/ s10508-018-1360-y.
88 Quinn GP, Sanchez JA, Sutton SK, et al. Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. CA Cancer J Clin. Sep-Oct 2015;65(5):384-400. doi: 10.3322/ caac.21288.
89 Terrier JE, Masterson M, Mulhall JP, et al. Decrease in Intercourse Satisfaction in Men Who Recover Erections After Radical Prostatectomy. J Sex Med. 2018 Aug;15(8):1133-1139. doi: 10.1016/j.jsxm.2018.05.020.
90 https://www.europeancancerleagues.org/wp-content/uploads/ECL-Cancer-and-Sexuality-Leaflet-Patients_September-2020.pdf
91 https://www.europeancancerleagues.org/wp-content/uploads/ECL-Cancer-and-Sexuality-Leaflet-HCP_September-2020.pdf
92 https://ecpc.org/wp-content/uploads/2020/07/Final-Cancer-Comorbidities-Joint-statement.pdf
93 https://bmccancer.biomedcentral.com/articles/10.1186/s12885-019-6472-9
94 Søgaard M, Thomsen RW, Bossen, KS, et al. The impact of comorbidity on cancer survival: a review. Clinical epidemiology 2013, 5 (Suppl. 1), 3–29. doi:10.2147/CLEP.S47150
95 Zamorano J.L. et al (2016). 2016 ESC Position Paper on cancer treatments and cardiovascular toxicity developed under the auspices of the ESC Committee for Practice Guidelines: The Task Force for cancer treatments and cardiovascular toxicity of the European Society of Cardiology (ESC). European Journal of Heart Failure. 19: 9-42. doi: 10.1002/ejhf.654
96 Koroukian SM, Murray P, Madigan E. Comorbidity, disability, and geriatric syndromes in elderly cancer patients receiving home health care. J Clin Oncol. 2006; 24(15):2304-10. doi: 10.1200/JCO.2005.03.1567
97 Lee L, Cheung WY, Atkinson E, et al. Impact of Comorbidity on Chemotherapy Use and Outcomes in Solid Tumours: A Systematic Review. Journal of Clinical Oncology 2011; 29:1, 106-117. doi: 10.1200/JCO.2010.31.3049
98 https://ecpc.org/wp-content/uploads/2020/07/Final-Cancer-Comorbidities-Joint-statement.pdf
99 https://bmccancer.biomedcentral.com/articles/10.1186/s12885-019-6472-9
100 Sarfati D, Koczwara B, Jackson C. The Impact of Comorbidity on Cancer and Its Treatments. A Cancer Journal for Clinicians 2016; 66:337-350. doi: 10.3322/caac.21342
101 Piccirillo JF, Feinstein AR. Clinical symptoms and comorbidity: significance for the prognostic classification of cancer. Cancer. 1996;77(5):834–842. doi: 10.1002/(SICI)1097-0142(19960301)77:5<834::AID-CNCR5>3.0.CO;2-E.
102 Malik M, Vaghmare R, Joseph D, et al. Impact of Comorbidities on Quality of Life in Breast Cancer Patients. Indian Journal of Cardiovascular Disease in Women 2006 WINCARS. doi: 10.1055/s-0038-1656491.
103 https://ecpc.org/wp-content/uploads/2020/07/Final-Cancer-Comorbidities-Joint-statement.pdf
104 https://bmccancer.biomedcentral.com/articles/10.1186/s12885-019-6472-9
105 https://ecpc.org/wp-content/uploads/2020/07/Final-Cancer-Comorbidities-Joint-statement.pdf
106 https://journals.sagepub.com/doi/10.1177/0269216318783919
107 Patient Engagement and Empowerment: Key Components of Effective Patient-Centred Care, Butcher H, Selby P. In Problem Solving in Patient Centred and Integrated Cancer Care. Eds Velikova G, Fallowfield L, Younger J, Board R, Selby P. EBN Health, Oxford, 2018.
108 For more information concerning the European Code of Cancer Practice, please visit: https://www.europeancancer.org/code
109 https://osha.europa.eu/en/publications/rehabilitation-and-return-work-after-cancer-instruments-and-practices
110 https://osha.europa.eu/en/publications/rehabilitation-and-return-work-after-cancer-instruments-and-practices
111 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7182621/
112 https://pubmed.ncbi.nlm.nih.gov/29946813/
113 https://osha.europa.eu/en/publications/rehabilitation-and-return-work-after-cancer-instruments-and-practices
114 http://www.startfoundation.nl/profielacceptatie
115 https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/work-and-cancer/cancer-and-employment-rights
116 https://www.sip-platform.eu/resources/details/sip-thematic-network-2018-joint-statement-now-available-in-several-languages
117 https://www.all-can.org/efficiency-hub/the-right-to-be-forgotten-improving-access-to-loans-and-insurance-for-cancer-survivors/
118 Scocca G. and Meunier F. (2020) A right to be forgotten for cancer survivors: A legal development expected to reflect the medical progress in the fight against cancer. J. Cancer Policy 25: 1-4.
119 https://www.europeancancer.org/resources/115:resolution-survivorship-financial-discrimination.html
120 https://ec.europa.eu/info/law/better-regulation/have-your-say/initiatives/12154-Europe-s-Beating-Cancer-Plan
121 https://ec.europa.eu/info/publications/conquering-cancer-mission-possible_en