Abstract
Traditional endpoints such as local recurrence, distant recurrence and survival are indisputably valuable endpoints steering to improve care for patients with rectal cancer. Multimodal treatment and auditing has improved rectal cancer care enormously in the past decades. Local recurrence rates are very low and survival is increasing in time.
Thus, it is time to prioritize the quality of survivorship after rectal cancer. It is of utmost importance that clinicians not only address traditional endpoints but also focus on adverse effects of treatment and patient-reported outcome measures. Accordingly, in this chapter, qualitative studies eliciting patient preferences and expectations in medical decision making are described. There are many merits in information provision about rectal cancer treatments. Implications of long-lasting consequences of rectal cancer treatment are described from a patient’s perspective. ‘What are relevant endpoints for patients?’ is written as an eye-opener to improve patient education and counselling when facing life-changing treatment decisions.
References
Park J, Neuman HB, Bennett AV et al (2014) Patient expectations of functional outcomes after rectal cancer surgery: a qualitative study. Dis Colon Rectum 57(2):151–157
Stacey D, Legare F, Col NF et al (2014) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 1:CD001431
Kunneman M, Pieterse AH, Stiggelbout AM, Marijnen CA (2015) Which benefits and harms of preoperative radiotherapy should be addressed? A Delphi consensus study among rectal cancer patients and radiation oncologists. Radiother Oncol 114(2):212–217
Kunneman M, Marijnen CA, Rozema T et al (2015) Decision consultations on preoperative radiotherapy for rectal cancer: large variation in benefits and harms that are addressed. Br J Cancer 112(1):39–43
Tsulukidze M, Grande SW, Gionfriddo MR (2015) Assessing option grid practicability and feasibility for facilitating shared decision making: an exploratory study. Patient Educ Couns 98:871–877
Snijders HS, Kunneman M, Bonsing BA et al (2014 Feb) Preoperative risk information and patient involvement in surgical treatment for rectal and sigmoid cancer. Colorectal Dis 16(2):O43–O49
van de Water W, Kiderlen M, Bastiaannet E et al (2014) External validity of a trial comprised of elderly patients with hormone receptor-positive breast cancer. J Natl Cancer Inst 106(4):dju051
Siesling S, Kwast A, Gavin A, Baili P, Otter R (2013) Availability of stage at diagnosis, cancer treatment delay and compliance with cancer guidelines as cancer registry indicators for cancer care in Europe: results of EUROCHIP-3 survey. Int J Cancer 132(12):2910–2917
Carr AJ, Gibson B, Robinson PG (2001) Measuring quality of life: is quality of life determined by expectations or experience? BMJ 322(7296):1240–1243
Beyond TME Collaborative (2013) Consensus statement on the multidisciplinary management of patients with recurrent and primary rectal cancer beyond total mesorectal excision planes. Br J Surg 100(8):1009–1014
Ortiz H, Wibe A, Ciga MA, Lujan J, Codina A, Biondo S (2013) Impact of a multidisciplinary team training programme on rectal cancer outcomes in Spain. Colorectal Dis 15(5):544–551
Oka S, Tanaka S, Saito Y et al (2015) Local recurrence after endoscopic resection for large colorectal neoplasia: a multicenter prospective study in Japan. Am J Gastroenterol 110(5):697–707
Allaix ME, Rebecchi F, Giaccone C, Mistrangelo M, Morino M (2011) Long-term functional results and quality of life after transanal endoscopic microsurgery. Br J Surg 98(11):1635–1643
van Gijn W, Brehm V, de Graaf E et al (2013) Unexpected rectal cancer after TEM: outcome of completion surgery compared with primary TME. Eur J Surg Oncol 39(11):1225–1229
De Graaf EJ, Doornebosch PG, Tollenaar RA et al (2009) Transanal endoscopic microsurgery versus total mesorectal excision of T1 rectal adenocarcinomas with curative intention. Eur J Surg Oncol 35(12):1280–1285
Hompes R, Ashraf SQ, Gosselink MP et al (2017) Evaluation of quality of life and function at one year after transanal endoscopic microsurgery. Anticancer Res 37(2):825–830
Lezoche E, Paganini AM, Fabiani B et al (2014) Quality-of-life impairment after endoluminal locoregional resection and laparoscopic total mesorectal excision. Surg Endosc 28(1):227–234
Thong MS, Mols F, Lemmens VE et al (2011) Impact of preoperative radiotherapy on general and disease-specific health status of rectal cancer survivors: a population-based study. Int J Radiat Oncol Biol Phys 81(3):e49–e58
Zolciak A, Bujko K, Kepka L, Oledzki J, Rutkowski A, Nowacki MP (2006) Abdominoperineal resection or anterior resection for rectal cancer: patient preferences before and after treatment. Colorectal Dis 8(7):575–580
Bossema E, Stiggelbout A, Baas-Thijssen M, van de Velde MC (2008) Patients’ preferences for low rectal cancer surgery. Eur J Surg Oncol 34(1):42–48
Bakker IS, Snijders HS, Wouters MW et al (2014) High complication rate after low anterior resection for mid and high rectal cancer; results of a population-based study. Eur J Surg Oncol 40(6):692–698
Mala T, Nesbakken A (2008) Morbidity related to the use of a protective stoma in anterior resection for rectal cancer. Colorectal Dis 10(8):785–788
Mols F, Lemmens V, Bosscha K, van den Broek W, Thong MS (2014) Living with the physical and mental consequences of an ostomy: a study among 1–10-year rectal cancer survivors from the population-based PROFILES registry. Psychooncology 23(9):998–1004
Wu R, Boushey R, Potter B, Stacey D (2014) The evaluation of a rectal cancer decision aid and the factors influencing its implementation in clinical practice. BMC Surg 14:16
Scheer AS, O’Connor AM, Chan BP et al (2012) The myth of informed consent in rectal cancer surgery: what do patients retain? Dis Colon Rectum 55(9):970–975
Young JM, Badgery-Parker T, Masya LM et al (2014 Feb) Quality of life and other patient-reported outcomes following exenteration for pelvic malignancy. Br J Surg 101(3):277–287
Harji DP, Koh C, Solomon M, Velikova G, Sagar PM, Brown J (2015) Development of a conceptual framework of health-related quality of life in locally recurrent rectal cancer. Colorectal Dis 17:954–964
Harji DP, Griffiths B, Velikova G, Sagar PM, Brown J (2015) Systematic review of health-related quality of life issues in locally recurrent rectal cancer. J Surg Oncol 111(4):431–438
Wiltink LM, Chen TY, Nout RA et al (2014) Health-related quality of life 14 years after preoperative short-term radiotherapy and total mesorectal excision for rectal cancer: report of a multicenter randomised trial. Eur J Cancer 50(14):2390–2398
Masya LM, Young JM, Solomon MJ, Harrison JD, Dennis RJ, Salkeld GP (2009) Preferences for outcomes of treatment for rectal cancer: patient and clinician utilities and their application in an interactive computer-based decision aid. Dis Colon Rectum 52(12):1994–2002
Desnoo L, Faithfull S (2006) A qualitative study of anterior resection syndrome: the experiences of cancer survivors who have undergone resection surgery. Eur J Cancer Care (Engl) 15(3):244–251
Chen TY, Emmertsen KJ, Laurberg S (2014) Bowel dysfunction after rectal cancer treatment: a study comparing the specialist’s versus patient’s perspective. BMJ Open 4(1):e003374
Emmertsen KJ, Laurberg S (2012) Low anterior resection syndrome score: development and validation of a symptom-based scoring system for bowel dysfunction after low anterior resection for rectal cancer. Ann Surg 255(5):922–928
Juul T, Ahlberg M, Biondo S et al (2014) International validation of the low anterior resection syndrome score. Ann Surg 259(4):728–734
Peeters KC, van de Velde CJ, Leer JW et al (2005) Late side effects of short-course preoperative radiotherapy combined with total mesorectal excision for rectal cancer: increased bowel dysfunction in irradiated patients – a Dutch colorectal cancer group study. J Clin Oncol 23(25):6199–6206
Shipp S, McKinstry C, Pearson E (2015) The impact of colorectal cancer on leisure participation: a narrative study. Br J Occup Ther 78(5):311–319
Knowles G, Haigh R, McLean C, Phillips HA, Dunlop MG, Din FV (2013) Long term effect of surgery and radiotherapy for colorectal cancer on defecatory function and quality of life. Eur J Oncol Nurs 17(5):570–577
Krouse RS, Herrinton LJ, Grant M et al (2009) Health-related quality of life among long-term rectal cancer survivors with an ostomy: manifestations by sex. J Clin Oncol 27(28):4664–4670
Grant M, McMullen CK, Altschuler A et al (2011) Gender differences in quality of life among long-term colorectal cancer survivors with ostomies. Oncol Nurs Forum 38(5):587–596
Orsini RG, Thong MS, van de Poll-Franse LV et al (2013) Quality of life of older rectal cancer patients is not impaired by a permanent stoma. Eur J Surg Oncol 39(2):164–170
Pachler J, Wille-Jorgensen P (2012) Quality of life after rectal resection for cancer, with or without permanent colostomy. Cochrane Database Syst Rev 12:CD004323
Cornish JA, Tilney HS, Heriot AG, Lavery IC, Fazio VW, Tekkis PP (2007) A meta-analysis of quality of life for abdominoperineal excision of rectum versus anterior resection for rectal cancer. Ann Surg Oncol 14(7):2056–2068
Lynch BM, Hawkes AL, Steginga SK, Leggett B, Aitken JF (2008) Stoma surgery for colorectal cancer: a population-based study of patient concerns. J Wound Ostomy Continence Nurs 35(4):424–428
Sun V, Grant M, McMullen CK et al (2013) Surviving colorectal cancer: long-term, persistent ostomy-specific concerns and adaptations. J Wound Ostomy Continence Nurs 40(1):61–72
Beaver K, Latif S, Williamson S et al (2010) An exploratory study of the follow-up care needs of patients treated for colorectal cancer. J Clin Nurs 19(23–24):3291–3300
Taylor C, Morgan L (2011) Quality of life following reversal of temporary stoma after rectal cancer treatment. Eur J Oncol Nurs 15(1):59–66
Orsini RG, Vermeer TA, Traa MJ, Nieuwenhuijzen GA, de Hingh IH, Rutten HJ (2015) Does extended surgery influence health-related quality of life in patients with rectal cancer? Dis Colon Rectum 58(2):179–185
Marijnen CA, van de Velde CJ, Putter H et al (2005) Impact of short-term preoperative radiotherapy on health-related quality of life and sexual functioning in primary rectal cancer: report of a multicenter randomized trial. J Clin Oncol 23(9):1847–1858
Averyt JC, Nishimoto PW (2014) Addressing sexual dysfunction in colorectal cancer survivorship care. J Gastrointest Oncol 5(5):388–394
Tekkis PP, Cornish JA, Remzi FH et al (2009) Measuring sexual and urinary outcomes in women after rectal cancer excision. Dis Colon Rectum 52(1):46–54
Andersson J, Abis G, Gellerstedt M et al (2014) Patient-reported genitourinary dysfunction after laparoscopic and open rectal cancer surgery in a randomized trial (COLOR II). Br J Surg 101(10):1272–1279
Broholm M, Pommergaard HC, Gogenur I (2015) Possible benefits of robot-assisted rectal cancer surgery regarding urological and sexual dysfunction: a systematic review and meta-analysis. Colorectal Dis 17(5):375–381
Moene M, Bergbom I, Skott C (2006) Patients’ existential situation prior to colorectal surgery. J Adv Nurs 54(2):199–207
Sharpe L, Patel D, Clarke S (2011) The relationship between body image disturbance and distress in colorectal cancer patients with and without stomas. J Psychosom Res 70(5):395–402
Tsunoda A, Nakao K, Hiratsuka K, Yasuda N, Shibusawa M, Kusano M (2005) Anxiety, depression and quality of life in colorectal cancer patients. Int J Clin Oncol 10(6):411–417
Wilson K, Luker KA. Soc Sci Med. 2006 Apr;62(7):1616–27
Lee J, Lee M, Hong S et al (2015) Association between physical fitness, quality of life, and depression in stage II-III colorectal cancer survivors. Support Care Cancer 23:2569–2577
Gray NM, Hall SJ, Browne S et al (2014) Predictors of anxiety and depression in people with colorectal cancer. Support Care Cancer 22(2):307–314
Feddern ML, Jensen TS, Laurberg S (2015) Chronic pain in the pelvic area or lower extremities after rectal cancer treatment and its impact on quality of life. A population-based, cross-sectional study. Pain 156:1765–1771
You YN, Habiba H, Chang GJ, Rodriguez-bigas MA, Skibber JM (2011) Prognostic value of quality of life and pain in patients with locally recurrent rectal cancer. Ann Surg Oncol 18(4):989–996
Osti MF, Nicosia L, Agolli L et al (2015) Potential role of single nucleotide polymorphisms of XRCC1, XRCC3, and RAD51 in predicting acute toxicity in rectal cancer patients treated with preoperative radiochemotherapy. Am J Clin Oncol
Beijers A, Mols F, Dercksen W, Driessen C, Vreugdenhil G (2014) Chemotherapy-induced peripheral neuropathy and impact on quality of life 6 months after treatment with chemotherapy. J Community Support Oncol 12(11):401–406
Argyriou AA, Velasco R, Briani C et al (2012) Peripheral neurotoxicity of oxaliplatin in combination with 5-fluorouracil (FOLFOX) or capecitabine (XELOX): a prospective evaluation of 150 colorectal cancer patients. Ann Oncol 23(12):3116–3122
Macmillan Cancer Support (2013) Cured - but at what cost? Long-term consequences of cancer and its treatment. Available on-line https://www.macmillan.org.uk/documents/cancerinfo/livingwithandaftercancer/consequences/cured-but-at-what-cost-report.pdf (accessed 17/01/18) or available from BeMacmillan reference MAC14381
Minton O, Berger A, Barsevick A, Cramp F, Goedendorp M, Mitchell SA, Stone PC (2013) Cancer-related fatigue and its impact on functioning. Cancer 119:2124–2130. https://doi.org/10.1002/cncr.28058
Department of Health (2012) Quality of life of cancer survivors in England. Report on a pilot survey using Patient Reported Outcome Measures (PROMS)
Hodgson NA, Given CW (2004) Determinants of functional recovery in older adults surgically treated for cancer. Cancer Nurs 27(1):10–16
Vardy J, Dhillon HM, Pond GR et al (2014) Cognitive function and fatigue after diagnosis of colorectal cancer. Ann Oncol 25(12):2404–2412
O’Gorman C, Denieffe S, Gooney M (2014) Literature review: preoperative radiotherapy and rectal cancer – impact on acute symptom presentation and quality of life. J Clin Nurs 23(3–4):333–351
Herman JM, Narang AK, Griffith KA et al (2013) The quality-of-life effects of neoadjuvant chemoradiation in locally advanced rectal cancer. Int J Radiat Oncol Biol Phys 85(1):e15–e19
Taylor C, Cummings R, McGilly C (2012) Holistic needs assessment following colorectal cancer treatment. Gastrointest Nurs 10(9):42–49
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Boelens, P.G., Henning, G., Taylor, C. (2018). The Patient’s Perspective. In: Valentini, V., Schmoll, HJ., van de Velde, C. (eds) Multidisciplinary Management of Rectal Cancer. Springer, Cham. https://doi.org/10.1007/978-3-319-43217-5_2
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