Abstract
Purpose
This descriptive, hypothesis-generating study sought to obtain input from rectal cancer survivors regarding key features of their long-term experience.
Methods
We administered a 12-question internet-based survey to self-identified rectal cancer survivors to assess 1) how neuropathy, fatigue, trouble with ostomy/bowel movements, and trouble with sexual function affect daily life; and 2) whether knowing about these symptoms a priori would have changed their treatment decision. Responses are presented descriptively. Qualitative analysis assessed themes reported in response to an open-ended question.
Results
Responses from 116 rectal cancer survivors, 55 of whom provided open-ended responses, were obtained. Respondents were predominantly young (62% <50 years at diagnosis) and several years from treatment (53% ≥ 2 years). They reported their lives were affected “A lot” by bowel/ostomy trouble (49%), trouble with sexual function (45%), fatigue (34%), and nerve toxicity (24%). Between 24-50% of survivors reporting a symptom affected their life “A lot” would have changed their treatment decisions with a priori knowledge of these lasting effects. Key qualitative themes were the lack of information about and support for negative effects.
Conclusions
Rectal cancer survivors report substantial symptom burden, decisional regret, and inadequate support. Interventions should target patients with high distress during their survivorship transition.
Keywords: Rectal cancer, cancer survivor, symptom burden, informational needs
Introduction
Colorectal cancer is second only to lung cancer in annual incidence in the United States, affecting 1 in 20 Americans at some point in their life.(“American Cancer Society. Cancer Facts & Figures 2014. Atlanta: American Cancer Society; 2014.,”) Cure rates for colorectal cancer continue to rise,(Edwards et al., 2010) and colorectal cancer survivors now comprise 8-9% of the estimated 14.5 million cancer survivors living in the US.(DeSantis et al., 2014) Unfortunately, the treatments used to cure colorectal cancer, including surgery, chemotherapy, and radiotherapy, carry substantial risk of long-term sequelae.
Colorectal cancer treatment undoubtedly results in lasting effects on health-related quality of life and symptom burden among survivors. Colorectal cancer survivors have been reported to have lower health-related quality of life up to 10 years out from their treatment,(Jansen, Herrmann, et al., 2011; Jansen, Hoffmeister, et al., 2011) although other studies have reported that only a minority of patients have a lasting detrimental effect of their treatment.(Ramsey, Berry, Moinpour, Giedzinska, & Andersen, 2002; Rauch, Miny, Conroy, Neyton, & Guillemin, 2004; Sapp et al., 2003; Zucca, Boyes, Linden, & Girgis, 2012) When present, these detrimental effects include disease-specific issues such as difficulty with ostomy and bowel function, and sexual dysfunction, but also encompass nonspecific adverse sequelae common to all cancer survivors such as fatigue.(Di Fabio, Koller, Nascimbeni, Talarico, & Salerni, 2008; Jansen, Herrmann, et al., 2011; Ramsey et al., 2002; Thong et al., 2013) Rectal cancer patients face a unique set of issues related to the more challenging surgical procedure needed to eradicate cancer from the pelvis, and the radiation and chemotherapy given to prevent pelvic and extrapelvic recurrence. Likely because of the greater intensity of therapy and the anatomic constraints of the pelvis, long term detriments in health-related quality of life appear to be more common in this population of colorectal cancer survivors.(Krouse et al., 2009; Mols, Lemmens, Bosscha, van den Broek, & Thong, 2014)
Thus while some, if not most, colorectal cancer survivors have an excellent long-term outcome, there are patients for whom colorectal cancer treatment causes life-altering adverse sequelae. Rectal cancer patients seem at greatest risk for these sequelae. However, just as it is notoriously difficult to predict the likelihood a cancer will respond to treatment resulting in cure, predicting which individuals will have a markedly negative response to the physical changes that follow rectal cancer surgery, chemotherapy, and radiation is exceptionally hard. Gaining a better understanding of these patients who do have lasting suffering by examining their experience and the support they perceive they would benefit from might help ameliorate suffering for those patients whose lives are irrevocably altered by rectal cancer and the long-term sequelae of treatments.
We wanted to obtain input from rectal cancer survivors regarding key features of their long-term experience, and factors they feel would have helped them make more informed decisions about their treatment. To do so we advertised and conducted through social media a web-based survey designed to identify key areas in need of future study in rectal cancer survivors. Here we describe the results of this exploratory, hypothesis-generating study.
Materials and Methods
The objectives of this study were to 1) determine the feasibility of using social media to gather information regarding the patient experience, 2) explore the importance of specific adverse outcomes from rectal cancer on the lives of survivors, and 3) examine whether rectal cancer survivors felt knowing about these lasting effects a priori would have changed their treatment decisions. We designed a 12-question survey using the free, online tool available at www.fluidsurveys.com (available from the authors upon request). The survey was distributed though social media by advertising links through the websites and Facebook pages of the Lineberger Comprehensive Cancer Center and the Fight Colorectal Cancer advocacy group.
The survey asked the extent to which the following common lasting adverse outcomes affect the life of respondents: neuropathy, fatigue, trouble with bowel movements or ostomy, and trouble with sexual function. These domains were chosen based on the clinical experience of the research team, literature review, and through discussion with rectal cancer patients. Responses were scored on a three-point Likert scale of how much the respondent’s life was affected: “A lot”, “A little”, “Not at all”. An option of “Not applicable” was provided for each question. These response options were selected to allow exploration of the severity of effect on decisional regret. For each adverse outcome, respondents were asked whether they would have changed their choice regarding treatment if they had known beforehand of that outcome. Respondents were asked to provide open-ended comments on any additional potential benefits or harms of rectal cancer treatment they believe to be important when considering treatment options. Self-reported age at diagnosis, sex, and length of time since the end of the initial course of treatment were also collected. Because no identifying information was collected, we cannot confirm that each response is from a unique individual. In addition, although the survey was entitled, “Rectal Cancer Patient Experience Survey” we cannot confirm all respondents had rectal cancer.
Because a large proportion of respondents provided a lengthy response to the open-ended question, we undertook an exploratory qualitative data analysis to better categorize the key themes reported by rectal cancer survivors. Qualitative data analysis of the 55 responses was conducted by three members of the study team (WLM, ALM, SW). A list of coding variables was created to encompass the themes reported by respondents. Two coders independently read through all of the responses and recorded the presence or absence of each coding variable. When the coders’ ratings were not in agreement, a third coder broke the tie. Inter-coder reliability was excellent for the majority of coded variables, Cronbach’s alpha was >0.8 in 36/45 variables and >0.7 in 42/45 variables. Variables which were deemed to report a similar higher order concept as judged by the study team were combined into higher-order variables and analyzed together. For example, sexual side effects and neuropathy were both included with many other adverse negative outcomes in the higher-order variable called side effects.
Given the exploratory nature of this survey and the lack of generalizability in the sampling scheme, survey responses are presented descriptively. No significance testing was performed.
This voluntary survey collecting de-identified data was deemed exempt from review by the Office of Human Research Ethics at the University of North Carolina (13-1390).
Results
A total of 116 surveys were completed over the course of 31 days, with 90 (78%) responding within 48 hours. The respondents were overwhelmingly female (87, 75%), Table 1. Seventy-two (63%) were less than 50 years of age when diagnosed with rectal cancer, 39 (34%) aged 50-64. Only three reported being 65-69 years old when diagnosed, and one between the ages of 70-74 years.
Table 1.
Respondent Characteristics
| Characteristic | n (%) |
|---|---|
| Sex | |
| Male | 29 (25%) |
| Female | 87 (75%) |
|
| |
| Age Range when Diagnosed | |
| <50 years | 72 (62%) |
| 50-64 years | 39 (34%) |
| 65-70 years | 3 (3%) |
| ≥70 years | 1 (<1%) |
| Missing | 1 (<1%) |
|
| |
| Time from Initial Treatment | |
| <1 year | 29 (25%) |
| 1-<2 years | 21 (18%) |
| 2- <3 years | 18 (16%) |
| ≥3 years | 44 (39%) |
| Missing | 2 (2%) |
|
| |
| Time from Survey Posting to Completion | |
| 1 day | 67 (58%) |
| 2 days | 23(20%) |
| 3-5 days | 4 (3%) |
| 6-31 days | 22 (19%) |
The majority of rectal cancer survivors reported having at least “A little” trouble with each of the symptom domains questioned, Table 2. Survivors commonly reported their lives were affected “A lot” by bowel or ostomy trouble (49%), trouble with sexual function (45%), fatigue (34%), and nerve toxicity (24%). Symptom severity was greater among patients over 50 years, with older patients reporting having “A lot” of difficulty in each domain more frequently than younger patients, Figure 1A. For all symptoms except sexual function, those within the first year of treatment completion reported having “A lot” of difficulty more frequently than those 3 or more years from treatment completion, Figure 1B.
Table 2.
Severity of the Effect of Adverse Outcomes on Daily Life
| Symptom | Total respondinga | A Lot n (%) |
A Little n (%) |
Not at all n (%) |
Not Applicable n (%) |
|---|---|---|---|---|---|
| Trouble with Bowel or Ostomy | 114 | 56 (49%) | 49 (43%) | 8 (7%) | 1 (1%) |
| Trouble with Sexual Function | 113 | 51 (45%) | 22 (19%) | 24 (21%) | 16 (14%) |
| Fatigue | 115 | 39 (34%) | 51 (44%) | 25 (22%) | 0 |
| Nerve Toxicity | 113 | 27 (24%) | 49 (43%) | 28 (25%) | 9 (8%) |
Respondents were not required to provide an answer to each question.
Figure 1.
Severity of the Effect of Adverse Outcomes on Daily Life by Age and Time from Initial Course of Treatment. Panel A, Severity by Age, Panel B, Severity by Time from Initial Course of Treatment
Between 24-50% of survivors reporting symptoms affect their lives “A lot” said they would have changed their treatment decisions if they had known beforehand about the lasting effects of treatment on these domains, Figure 2.
Figure 2.
Proportion who would Change Treatment Decision with A Priori Knowledge of Current Symptoms
These symptoms and decisional regret were further explored in the qualitative data analysis of open-ended comments. The key higher-order themes reported focused on the presence of negative side effects (38%) and lack of information about and support for addressing these negative effects (35%), Table 3. As would be expected in rectal cancer survivors, 27% reported upon lasting effects on continence and bowel/digestive function.
Table 3.
Qualitative Themes Reported in 10% or more of Open-Ended Responses
| Thematic Higher-Order Variable | N (%) Who Commented on this Theme |
|---|---|
| Negative side effects | 36 (65%) |
| Negative side effects were due to radiation/chemo/other | 21 (38%) |
| Lack of information about treatment options, side effects, and/or support for side effects | 19 (35%) |
| Incontinence/bowel/digestive problems | 15 (27%) |
| Thematic Variable: Treatment | N (%) |
| Had radiation | 27 (49%) |
| Had surgery | 24 (44%) |
| Had chemotherapy | 19 (35%) |
| Had ostomy/ileostomy/colostomy | 15 (27%) |
| Time since treatment ended | 7 (13%) |
| Wanted to try aggressive treatment | 6 (11%) |
| Thematic Variable: Durable Adverse Outcomes | |
| Continues to experience negative side effects | 19 (35%) |
| Negative side effects due to radiation | 15 (27%) |
| Negative side effects were worth beating the cancer | 12 (22%) |
| Other bowel/digestive problems | 10 (18%) |
| Sexual side effects | 9 (16%) |
| Nerve problems/Neuropathy | 8 (15%) |
| Negative side effects due to chemo | 8 (15%) |
| Complications from surgical/medical procedure | 8 (15%) |
| Incontinence | 6 (11%) |
| Loss of energy/fatigue | 6 (11%) |
| Thematic Variable: Inadequate Information/Support and Regret | |
| Lack of information about and/or support for side effects | 17 (31%) |
| Felt negative about choice/would choose differently next time | 13 (24%) |
| Desire for more support dealing with long-term effects including ostomy | 10 (18%) |
| Wasn’t told at all or enough about side effects | 8 (15%) |
| Felt positive about choice | 6 (11%) |
Discussion
Although colorectal cancer survivors, including those with permanent ostomies, can have excellent long-term health-related quality of life across a broad variety of domains, we found that a large proportion of rectal cancer survivors responding to this internet-based survey reported a major effect of fatigue, bowel/ostomy trouble, sexual trouble, and neuropathy on their daily life. Further, many of these survivors reported that, had they known about the durable nature of these moderate to severe symptoms at the time of treatment decision-making, they would not have made the same decision about treatment. Because of the limited nature of the survey, we have no information with regard to which decisions the survivors would change nor whether this sentiment is a lasting one or might change over time.
The sampling scheme for this survey—a purely internet-based survey geared towards people looking at cancer and colorectal cancer websites and Facebook pages—is inherently biased towards a unique subset of younger, predominantly female rectal cancer survivors. It is also reasonable to assume that the sample is enriched with survivors with lasting sequelae who would be more likely to be engaged in websites related to colorectal cancer. Thus, while these results are limited and cannot in any way be interpreted to represent the prevalence of symptoms in the general population of rectal cancer survivors, they do highlight that a subset of rectal cancer patients have lasting adverse effects.
This study also highlights social media as an untapped resource for research. We were able to obtain responses from 90 individuals free of charge within two days of survey posting. Certainly, strategies to overcome the aforementioned limitations imposed by the sampling scheme need to be overcome prior to widespread use of social media as a research recruitment tool.
Of major concern is that in this group of young, internet savvy rectal cancer survivors, over one third of those providing open-ended responses said they were not able to get enough information about treatment and side effects. A patient’s perception of how well their informational needs about their cancer, treatment, and side-effects have been fulfilled is strongly associated with key long-term outcomes of health-related quality of life, anxiety, and depression as well as their perception of their illness severity.(Husson, Mols, & van de Poll-Franse, 2011; Husson et al., 2013)
The failure of oncologists to convey realistic expectations with regard to cancer treatments and difficulties in patient-physician communication have been well described.(Ayanian et al., 2005; Weeks et al., 2012) It is clear that no single “one size fits all” strategy will work across all ages, cultures, and levels of education. Studies of the informational needs of patients embarking upon rectal cancer therapy that are large enough to evaluate the effect of sociodemographic characteristics on these needs, as well as how the urgency of treatment affects quality decision-making are clearly needed. Our preliminary data also highlight how we must focus on finding ways to address the ongoing symptom distress and perceived lack of information and support among rectal cancer survivors. Targeted interventions for patients with high perceived illness severity and a high symptom burden might help alleviate the significant distress reported by these rectal cancer survivors.
Implications for practice.
i) Rectal cancer patients even three or more years from the end of treatment may have symptoms that have a substantial negative effect on their daily life; ii) They also report feeling inadequately informed about how to deal with their lasting symptoms. Iii) Careful attention to the symptom burden and level of distress of patients as they make their transition to post-treatment surveillance, with focused symptom management and education for those with high levels of distress, may improve the long term outcomes of those with lasting adverse effects from treatment.
Acknowledgments
The authors would like to thank the Lineberger Comprehensive Cancer Center (unclineberger.org) and Fight Colorectal Cancer (fightcolorectalcancer.org) for help with disseminating the link to our survey.
Footnotes
Conflict of Interest
Dr. Sanoff has received research funding from Bayer, Novartis, and the National Cancer Institute and has served as a consultant for Amgen. There are no other conflicts to disclose.
References
- American Cancer Society. Cancer Facts & Figures 2014. Atlanta: American Cancer Society; 2014. [Google Scholar]
- Ayanian JZ, Zaslavsky AM, Guadagnoli E, Fuchs CS, Yost KJ, Creech CM, Wright WE. Patients’ perceptions of quality of care for colorectal cancer by race, ethnicity, and language. J Clin Oncol. 2005;23(27):6576–6586. doi: 10.1200/JCO.2005.06.102. [DOI] [PubMed] [Google Scholar]
- DeSantis CE, Lin CC, Mariotto AB, Siegel RL, Stein KD, Kramer JL, Jemal A. Cancer treatment and survivorship statistics, 2014. CA Cancer J Clin. 2014;64(4):252–271. doi: 10.3322/caac.21235. [DOI] [PubMed] [Google Scholar]
- Di Fabio F, Koller M, Nascimbeni R, Talarico C, Salerni B. Long-term outcome after colorectal cancer resection. Patients’ self-reported quality of life, sexual dysfunction and surgeons’ awareness of patients’ needs. Tumori. 2008;94(1):30–35. doi: 10.1177/030089160809400107. [DOI] [PubMed] [Google Scholar]
- Edwards BK, Ward E, Kohler BA, Eheman C, Zauber AG, Anderson RN, Ries LA. Annual report to the nation on the status of cancer, 1975-2006, featuring colorectal cancer trends and impact of interventions (risk factors, screening, and treatment) to reduce future rates. Cancer. 2010;116(3):544–573. doi: 10.1002/cncr.24760. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Husson O, Mols F, van de Poll-Franse LV. The relation between information provision and health-related quality of life, anxiety and depression among cancer survivors: a systematic review. Ann Oncol. 2011;22(4):761–772. doi: 10.1093/annonc/mdq413. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Husson O, Thong MS, Mols F, Oerlemans S, Kaptein AA, van de Poll-Franse LV. Illness perceptions in cancer survivors: what is the role of information provision? Psychooncology. 2013;22(3):490–498. doi: 10.1002/pon.3042. [DOI] [PubMed] [Google Scholar]
- Jansen L, Herrmann A, Stegmaier C, Singer S, Brenner H, Arndt V. Health-related quality of life during the 10 years after diagnosis of colorectal cancer: a population-based study. J Clin Oncol. 2011;29(24):3263–3269. doi: 10.1200/JCO.2010.31.4013. [DOI] [PubMed] [Google Scholar]
- Jansen L, Hoffmeister M, Chang-Claude J, Koch M, Brenner H, Arndt V. Age-specific administration of chemotherapy and long-term quality of life in stage II and III colorectal cancer patients: a population-based prospective cohort. Oncologist. 2011;16(12):1741–1751. doi: 10.1634/theoncologist.2011-0124. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Krouse RS, Herrinton LJ, Grant M, Wendel CS, Green SB, Mohler MJ, Hornbrook MC. Health-related quality of life among long-term rectal cancer survivors with an ostomy: manifestations by sex. J Clin Oncol. 2009;27(28):4664–4670. doi: 10.1200/JCO.2008.20.9502. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Mols F, Lemmens V, Bosscha K, van den Broek W, Thong MS. 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. 2014 doi: 10.1002/pon.3517. [DOI] [PubMed] [Google Scholar]
- Ramsey SD, Berry K, Moinpour C, Giedzinska A, Andersen MR. Quality of life in long term survivors of colorectal cancer. Am J Gastroenterol. 2002;97(5):1228–1234. doi: 10.1111/j.1572-0241.2002.05694.x. [DOI] [PubMed] [Google Scholar]
- Rauch P, Miny J, Conroy T, Neyton L, Guillemin F. Quality of life among disease-free survivors of rectal cancer. J Clin Oncol. 2004;22(2):354–360. doi: 10.1200/JCO.2004.03.137. [DOI] [PubMed] [Google Scholar]
- Sapp AL, Trentham-Dietz A, Newcomb PA, Hampton JM, Moinpour CM, Remington PL. Social networks and quality of life among female long-term colorectal cancer survivors. Cancer. 2003;98(8):1749–1758. doi: 10.1002/cncr.11717. [DOI] [PubMed] [Google Scholar]
- Thong MS, Mols F, Wang XS, Lemmens VE, Smilde TJ, van de Poll-Franse LV. Quantifying fatigue in (long-term) colorectal cancer survivors: a study from the population-based patient reported outcomes following initial treatment and long term evaluation of survivorship registry. Eur J Cancer. 2013;49(8):1957–1966. doi: 10.1016/j.ejca.2013.01.012. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Weeks JC, Catalano PJ, Cronin A, Finkelman MD, Mack JW, Keating NL, Schrag D. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012;367(17):1616–1625. doi: 10.1056/NEJMoa1204410. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Zucca AC, Boyes AW, Linden W, Girgis A. All’s well that ends well? Quality of life and physical symptom clusters in long-term cancer survivors across cancer types. J Pain Symptom Manage. 2012;43(4):720–731. doi: 10.1016/j.jpainsymman.2011.04.023. [DOI] [PubMed] [Google Scholar]