Long-term Rectal Cancer Survivors Research Articles

Life with a stoma across five European countries-a cross-sectional study on long-term rectal cancer survivors.

Stoma-related problems are known to be important to patients and potentially affect everyday life. The prevalence of stoma-related problems in rectal cancer survivors remains undetermined. This study aimed to examine aspects of life with a long-term stoma, stoma management, and stoma-related problems and explore the impact of stoma-related problems on daily life. In total, 2262 patients from 5 European countries completed a multidimensional survey. Stoma-related problems were assessed using the Colostomy Impact score. Multivariable regression analysis, after adjusting for potential confounding factors, provided odds ratio (OR) and 95% confidence intervals (CI) for stoma-related problems' association with restrictions in daily life. The 2262 rectal cancer survivors completed the questionnaire at a median of 5.4years (interquartile range 3.8-7.6) after stoma formation. In the total sample, leakage (58%) and troublesome odour (55%) were most prevalent followed by skin problems (27%) and pain (21%). Stoma-related problems were more prevalent in patients with parastomal bulging. A total of 431 (19%) reported feeling restricted in daily activities in life with a stoma. Leakage, odour, skin problems, stool consistency, and frequent appliance changes were significantly associated with restrictions in daily life. The highest risk of experiencing restrictions was seen for patients having odour (OR 2.74 [95% CI: 1.99-3.78]) more than once a week and skin problems (OR 1.77 [95% CI: 1.38-2.27]). In this large cohort with rectal cancer, stoma-related problems were highly prevalent and impacted daily life. Supportive care strategies should entail outreach to patients with a long-term stoma.

Preoperative Short-Course Radiotherapy and Surgery versus Surgery Alone for Patients with Rectal Cancer: A Propensity Score-Matched Analysis at 18-Year Follow-Up.

A significant problem for long-term rectal cancer survivors may be the late toxicity of radiotherapy. It creates the possible risk of developing second primary malignancy and a theoretical decrease in overall survival. This study aimed to assess the influence of short-course preoperative radiotherapy in patients with locally advanced rectal cancer on overall survival, local recurrence rate, and second malignancy at 18-year follow-up. The rectal cancer trial was conducted in a single tertiary center between February 1992 and June 2006. A total of 389 patients with locally advanced rectal cancer (cT2-cT4, cN0/+, cM0) were included in the study. Preoperative radiotherapy was conducted in 148 patients and 241 patients underwent surgery alone. The propensity-matched group consisted of 105 patients operated on after radiotherapy and 105 controls. The number of local recurrences was 7 (6.7%) in the preoperative radiotherapy group and 22 (21%) in the surgery alone group (p = 0.016). The 18-year survival analysis showed no survival benefit in the preoperative radiotherapy group (38% versus 48%, p = 0.107) but improved recurrence-free survival (81% versus 58%, p = 0.001). The preoperative short-course radiotherapy significantly decreases the risk of local recurrence in locally advanced rectal cancer and may improve recurrence-free survival without an increased risk of second primary malignancy.

Diet and Behavior Modifications by Long-term Rectal Cancer Survivors to Manage Bowel Dysfunction-Associated Symptoms*

Background: Rectal cancer (RC) survivors experience significant bowel function issues after treatment. We aimed to describe self-reported dietary and behavioral modifications among long-term (≥5 yr) RC survivors to manage bowel dysfunction.Methods: RC survivors from Kaiser Permanente Northern California and Northwest regions completed surveys either via postage-paid return mail or telephone. Summary statistics on diet/behavioral modifications data were tabulated by proportion of responses. Modifications and frequency of bowel symptoms cited and were compared by ostomy status.Results: A total of 575 respondents were included (overall response rate = 60.5%). Fruits and vegetables were troublesome for symptoms, but was also helpful in mitigating constipation, obstruction, and frequency, as well as improving predictability. Many respondents attributed red meat (17.7%), fried foods (13.9%), spicy foods (13.1%), carbonated beverages (8.0%), and sweets (7.6%) to increased diarrhea, gas, and urgency. Common behavioral modifications included controlling meal portions (50.6%), timing regularity (25.3%), and refraining from late night eating (13.8%). Permanent ostomy survivors were more likely to report symptoms of obstruction, while anastomosis survivors were more likely to report urgency.Conclusion: Multiple modifications were attempted by RC survivors to manage bowel symptoms. Identifying diet changes among RC survivors can improve symptom management and survivorship care.

Ongoing ostomy self-care challenges of long-term rectal cancer survivors.

Surgical treatment for rectal cancer (RC) can result in an intestinal ostomy that requires lifelong adaptation and investment of physical, cognitive, and financial resources. However, little is known about the extent of ongoing challenges related to ostomy self-care among long-term RC survivors. We analyzed the prevalence of self-reported ostomy self-care challenges and the physical and environmental factors that can support or undermine ostomy self-care. We mailed surveys to long-term (≥ 5years post-diagnosis) RC survivors, including 177 adults with ostomies who were members of integrated health systems in northern California, Oregon, and Washington State. Potential participants were identified through tumor registries. Data were also extracted from electronic health records. The response rate was 65%. The majority of respondents were male (67%), and the mean age was 75years. Sixty-three percent of respondents reported at least one ostomy self-care challenge. The most common challenges were leakage or skin problems around the ostomy and needing to change the pouching system too frequently. Twenty-two percent reported difficulty caring for their ostomy. Younger age and higher BMI were consistently related to ostomy self-care challenges. The majority of RC survivors reported ostomy-related self-care challenges, and 31% experienced problems across multiple domains of ostomy self-care. In addition, most survivors reported significant physical challenges that could lead to ostomy-related disability. Although the participants surveyed had access to ostomy care nurses, the care gaps we found suggest that additional work is needed to understand barriers to ostomy care, reduce unmet needs, and improve well-being among this group.

Erratum to: Predictors of Bowel Function in Long-term Rectal Cancer Survivors with Anastomosis.

Erratum to: Predictors of Bowel Function in Long-term Rectal Cancer Survivors with Anastomosis.

Predictors of Bowel Function in Long-term Rectal Cancer Survivors with Anastomosis.

Bowel function in long-term rectal cancer survivors with anastomosis has not been characterized adequately. We hypothesized that bowel function is associated with patient, disease, and treatment characteristics. The cohort study included Kaiser Permanente members who were long-term (≥5years) rectal cancer survivors with anastomosis. Bowel function was scored using the self-administered, 14-item Memorial Sloan-Kettering Cancer Center Bowel Function Index. Patient, cancer, and treatment variables were collected from the electronic medical chart. We used multiple regression to assess the relationship of patient- and treatment-related variables with the bowel function score. The study included 381 anastomosis patients surveyed an average 12years after their rectal cancer surgeries. The total bowel function score averaged 53 (standard deviation, 9; range, 31-70, higher scores represent better function). Independent factors associated with worse total bowel function score included receipt of radiation therapy (yes vs. no: 5.3-unit decrement, p<0.0001), tumor distance from the anal verge (≤6cm vs.>6cm: 3.2-unit decrement, p<0.01), and history of a temporary ostomy (yes vs. no: 4.0-unit decrement, p<0.01). One factor measured at time of survey was also associated with worse total bowel function score: ever smoking (2.3-unit decrement, p<0.05). The regression model explained 20% of the variation in the total bowel function score. Low tumor location, radiation therapy, temporary ostomy during initial treatment, and history of smoking were linked with decreased long-term bowel function following an anastomosis. These results should improve decision-making about surgical options.

Behavioral adjustments, supplements, and medications to manage bowel dysfunction in rectal cancer survivors.

150 Background: Bowel dysfunction is a common long-term treatment effect that adversely impacts the quality of life (QOL) of rectal cancer (RC) survivors. Research suggests that self-care strategies such as behavioral adjustments and supplements/medications are used to achieve bowel control. Evidence describing the specific types of self-care strategies is lacking. The purpose of this study is to describe behavioral adjustments and supplement/medications use in long-term ( ≥ 5 years) RC survivors for managing bowel dysfunction. Methods: Long-term RC survivors with or without permanent ostomies who were enrolled in two Kaiser Permanente Regions completed a survey that included questions eliciting behavioral adjustments and supplements/medications used for bowel control. Written comments from the questions were coded for content and themes. The themes were reviewed and agreed upon by the research team. Responses mentioned &lt; 9 times were combined into broader categories; those mentioned ≥ 9 times were coded separately. Results: A total of 577 RC survivors responded to the survey. 118 survivors (20.4%) responded to the behavioral adjustment question, while 248 (43%) responded to the helpful supplements/medications question. Behavioral adjustments included controlling meal portions (38.9%), eating meals at regular times (19.4%), not eating late or before bedtime (10.1%), and grazing (8.4%); they mitigated constipation, obstruction, bloating, frequency, urgency, and improved bowel predictability. Other behavioral adjustments include not eating before or after activities (5.9%), not eating (5.1%), snacking at regular times (2.5%), and eating less when traveling (1.6%). Helpful supplements/medications include anti-diarrheals (23.6%), dietary fiber supplements (16.6%), stool softeners (15.0%), laxatives (12.6%), antacid (5.6%), probiotics (5.0%), and opioids (3.6%). Conclusions: RC survivors used multiple behavioral adjustments and supplements/medications to achieve bowel control. The specific adjustments and strategies varied greatly. Findings will aid in developing personalized strategies to manage bowel symptoms during survivorship.

Greatest Challenges of Rectal Cancer Survivors: Results of a Population-Based Survey.

Eliciting the priorities of cancer survivors is essential to address the specific needs of cancer survivor subgroups. The purpose of this study was to describe the greatest challenges related to treatment for long-term rectal cancer survivors. This was an observational study with a cross-sectional survey. The study included members of Kaiser Permanente Northern California and Northwest health plans. A survey was mailed to long-term (≥5 years postdiagnosis) survivors of rectal cancer who had an anastomosis, temporary ostomy, or permanent ostomy. The main outcome was measured with an open-ended question about the greatest challenge related to cancer surgery. We categorized responses using a grounded theory approach with double coding for reliability. Bonferroni-adjusted χ values were used to assess differences in the proportions of subgroups who mentioned challenges within each response category. The survey completion rate was 61% (577/953); 76% (440/577) of participants responded to the greatest challenge question. The greatest challenges for respondents were bowel/ostomy management (reported by 44%), negative psychosocial effects (37%), late effects of treatment (21%), comorbidities and aging (13%), postoperative recovery (5%), and negative healthcare experiences (5%). Survivors with temporary ostomy or anastomosis were more likely than survivors with permanent ostomy to report late effects (p < 0.0001 and p = 0.01). Survivors with anastomosis were less likely than survivors with permanent ostomy to report negative psychosocial impacts (p = 0.0001). Generalizability is restricted by the lack of ethnically and racially diverse, uninsured (non-Medicare-eligible population), and non-English-speaking participants. Because the survey was cross-sectional and included respondents at different times since diagnosis, we could not adequately address changes in the greatest challenges over time. Our results reveal the need for bowel/ostomy management, psychosocial services, and surveillance for late effects in survivorship and supportive care services for all survivors of rectal cancer, regardless of ostomy status. The perspective of long-term survivors with anastomosis reveals challenges that may not be anticipated during decision making for treatment (see Video, Supplemental Digital Content 1, http://links.lww.com/DCR/A254).

Sexual Function and Health-Related Quality of Life in Long-Term Rectal Cancer Survivors

IntroductionSexual dysfunction is a treatment sequela in survivors of rectal cancer (RC). Differences in health-related quality of life (HRQOL) can occur based on ostomy status (permanent ostomy vs anastomosis). AimTo describe alterations in sexual function and HRQOL based on ostomy status in long-term (≥5 years) survivors of RC. MethodsSurvivors of RC with an ostomy (n = 181) or anastomosis (n = 394) were surveyed using validated HRQOL and functional status tools. We compared sexuality outcomes between the ostomy and anastomosis groups and reported differences adjusted for clinical and demographic characteristics. Qualitative data from one open-ended question on survivors' greatest challenges since their surgery were analyzed to explore sexuality, symptoms, and relationships. Main Outcome MeasuresWhether sexually active, satisfaction with sexual activity, and select sexual dysfunction items from the Modified City of Hope Quality of Life-Colorectal. ResultsSurvivors with a permanent ostomy were more likely to have been sexually inactive after surgery if it occurred before 2000 and experience dissatisfaction with appearance, interference with personal relationships and intimacy, and lower overall HRQOL. Female survivors of RC with an ostomy were more likely to have problems with vaginal strictures and vaginal pain after surgery that persisted at the time of the survey (≥5 years later). Radiation treatment, tumor stage, soilage of garments in bed, and higher Charlson-Deyo comorbidity scores were negatively associated with outcomes. Six qualitative themes emerged: loss of and decreased sexual activity, psychological issues with sexual activity, physical issues with sexual activity, partner rejection, ostomy interference with sexual activity, and positive experiences with sexuality. ConclusionSexual dysfunction is a common long-term sequela of RC treatment, with more problems observed in survivors with a permanent ostomy. This warrants widespread implementation of targeted interventions to manage sexual dysfunction and improve HRQOL for these survivors.

Sexual function of long-term rectal cancer survivors.

209 Background: Many rectal cancer survivors report problems with intimacy and sexual function after surgery. The extent of these problems is not well known. Methods: Long-term rectal cancer survivors (5+ years post-diagnosis) who were members of Kaiser Permanente with permanent ostomy (n = 183) or sphincter-sparing surgery (N = 394) completed a mailed survey. Participants were identified through tumor registries and health plan data. Items from the City of Hope Quality of Life Colorectal Cancer scale assessed disruption to intimate relationships due to the surgery on a scale of 0-10, with 10 indicating the least disruption. Other items assessed current experiences of and satisfaction with sexual function as well as comfort being undressed in front of a partner. Results: Survey response rate was 60.5% (N = 577). Respondents’ average age was 73 years, 41% were female, 63% were married or partnered at the time of survey, and 30% reported being sexually active. Fifteen percent of those who were not sexually active feared resuming sexual activity. Thirty-five percent of all respondents found their sexual activity unsatisfying. Of the 236 female respondents, 24% reported current problems with vaginal dryness, 12% with vaginal stricture, and 9% with vaginal pain. Of the 341 male respondents, 64% reported current problems getting an erection and 65% with maintaining one. Survivors with ostomy vs. sphincter-sparing surgery reported more interference with personal relationships (6.4 vs. 8.3, p &lt; .001) and less ability to be intimate (5.1 vs. 7.0, p &lt; .0001). A higher percentage with ostomy also reported discomfort being undressed in front of their partner (40.6% vs. 10.6%, p &lt; .001). Conclusions: Many rectal cancer survivors were unsatisfied with their sexual activity. One in ten women reported vaginal stricture, which can be mitigated by early intervention. Nearly 1/4 reported problems (dryness, pain) that can be addressed at any phase of survivorship. Two thirds of men reported trouble with getting an erection and with maintaining one, indicating a significant opportunity for intervention in this cohort. Sexual function did not differ significantly between surgery groups. In line with previous reports, survivors with ostomy had more intimacy and body image problems.

Self-reported depression and perceived financial burden among long-term rectal cancer survivors.

Types of surgery for rectal cancer (RC), including permanent ostomy (PO) or temporary ostomy followed by anastomosis (TO) or initial anastomosis (AN), can affect psychological and financial well-being during active treatment. However, these relationships have not been well studied among long-term survivors (≥5years post-diagnosis). A mailed survey with 576 long-term RC survivors who were members of Kaiser Permanente was conducted in 2010-2011. Prevalence of current depression was ascertained using a score of ≤45.6 on the Short Form-12 version 2 mental component summary. Perceived financial burden was assessed using a Likert scale ranging from 0 (none) to 10 (severe). Regression analyses were used to measure associations after adjustment for covariates. The overall prevalence of depression was 24% among RC survivors with the highest prevalence among those with a history of PO (31%). The adjusted odds of depression among TO and AN survivors were lower than that among PO survivors, 0.42 (CI95% 0.20-0.89) and 0.59 (CI95% 0.37-0.93), respectively. Twenty-two percent perceived moderate-to-high current financial burden (≥4 points). PO survivors also reported higher mean financial burden than AN survivors (2.6 vs. 1.6, respectively; p = 0.002), but perceived burden comparably to TO survivors (2.3). Self-reported depression was associated with higher perceived financial burden (p < 0.001); surgical procedure history did not modify this relationship. Depression was reported frequently among these long-term RC survivors, particularly among PO survivors. Depression was associated with greater perception of financial burden. Screening for depression and assessing financial well-being might improve care among long-term RC survivors.Copyright © 2015 John Wiley & Sons, Ltd.

Abstract 3431: What are the greatest challenges of rectal cancer survivors? Results of a population-based survey

Abstract Purpose: Rectal cancer (RC) survivors with and without permanent ostomy have similar health-related quality of life outcomes, though these may be driven by different factors. Identifying patient-centered concerns among survivors with different surgical reconstructions can guide treatment decision-making and optimize survivorship care. Methods: We mailed a survey to long-term (≥5 years post-diagnosis) RC survivors enrolled in Kaiser Permanente (Northern California and Oregon/Southwest Washington). Participants with anastomosis, temporary ostomy, and permanent ostomy were asked an open-ended question about the “greatest challenge” they experienced related to their cancer surgery. Using a grounded theory approach, we identified all topics in the responses of 440 participants who wrote an answer (76% of 577 respondents). These topics were collapsed into codes and organized into domains. Responses were assigned as many codes as were applicable and double-coded by pairs of researchers who met to resolve any discrepancies. We used Bonferroni-adjusted chi-squares to test differences in the proportion of respondents within each surgical group who mentioned challenges in each domain. Results: Greatest challenge responses were provided by 241 participants with anastomosis, 54 with temporary ostomy, and 145 with permanent ostomy. Respondents were more educated but otherwise they resembled non-respondents demographically and clinically. Respondents described seven challenge domains: 1) bowel dysfunction; 2) bowel self-care; 3) post-operative recovery; 4) complications and late-effects; 5) negative psychosocial impacts; 6) comorbidities and aging (unrelated to RC); and 7) negative health care experiences. The most commonly reported problems in each group were bowel dysfunction, negative psychosocial impacts, complications and late effects, and bowel self-care. Anastomosis and temporary ostomy groups provided similar response profiles, but there were some significant differences in the proportion of respondents in each group who mentioned challenges for each domain. Respondents with permanent ostomy were less likely to mention challenges with bowel management than either respondents with temporary ostomy (p = .0024) or anastomosis (p = .0003). Respondents with temporary ostomy reported more complications and late effects than those with permanent ostomy (p = .0009). Respondents with anastomosis were less likely to report negative psychosocial impacts than those with permanent ostomy (p = .0003). Conclusions: We identified enduring concerns for long-term RC survivors that should be prioritized in survivorship care. Patients choosing among surgical options should know that long-term bowel dysfunction, complications, and late effects are more common concerns for patients without permanent ostomy. In contrast, patients with permanent ostomy report the most negative psychosocial impacts. Citation Format: Robert S. Krouse, Joanna E. Bulkley, Andrea Altschuler, Christopher S. Wendel, Marcia Grant, Mark C. Hornbrook, Virginia Sun, Carmit K. McMullen. What are the greatest challenges of rectal cancer survivors? Results of a population-based survey. [abstract]. In: Proceedings of the 106th Annual Meeting of the American Association for Cancer Research; 2015 Apr 18-22; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Res 2015;75(15 Suppl):Abstract nr 3431. doi:10.1158/1538-7445.AM2015-3431

Adaptive Resources and Unmet Needs Related to Ostomy Self-Care Among Long-Term Rectal Cancer Survivors

Background/Aims: Surgical treatment for rectal cancer can result in an intestinal ostomy that requires lifelong adaptation and investment of physical, cognitive and financial resources. However, little is known about the prevalence of functional limitation related to ostomies among long-term cancer survivors.

PS2-39: Depression and Its Relationship to Perceived Financial Burden among Long-term Rectal Cancer Survivors with Ostomies and Anastomoses

Background/Aims Consequences of surgery for rectal cancer (permanent ostomy (PO), anastomosis (AN), or temporary ostomy (TO) followed by anastomosis) can affect survivors’ psychological and financial well-being. We investigated depression and its association with perceived financial burden resulting from their illness/treatment among long-term (≥5 years post-diagnosis) survivors.

Reliability and validity of a survey to measure bowel function and quality of life in long-term rectal cancer survivors.

Examination of reliability and validity of a specialized health-related quality of life questionnaire for rectal cancer (RC) survivors (≥5 years post-diagnosis). We mailed 1,063 Kaiser Permanente (KP) RC survivors (313 ostomy and 750 anastomosis) a questionnaire containing the Modified City of Hope Quality of Life-Ostomy (mCOH-QOL-O), SF-12v2, Duke-UNC Functional Social Support Questionnaire (FSSQ), and Memorial Sloan-Kettering Cancer Center Bowel Function Index (BFI). We adapted certain BFI items for use by subjects with intestinal ostomies. We evaluated reliability for all instruments with inter-item correlations and Cronbach's alpha. We assessed construct validity only for the BFI in the ostomy group, because such use has not been reported. The overall response rate was 60.5 % (577 respondents/953 eligible). Compared with non-responders, participants were on average 2 years younger and more likely non-Hispanic white, resided in educationally non-deprived areas, and had KP membership through a group. The mCOH-QOL-O, SF-12, and FSSQ were found to be highly reliable for RC survivors. In the ostomy group, BFI Urgency/Soilage and Dietary subscales were found to be reliable, but Frequency was not. Factor analysis supported the construct of Urgency/Soilage and Dietary subscales in the ostomy group, although one item had a moderate correlation with all three factors. The BFI also demonstrated good concurrent validity with other instruments in the ostomy group. With possible exception of the BFI Frequency subscale in populations with ostomies, components of our survey can be used for the entire population of RC survivors, no matter whether they received anastomosis or ostomy.

PS1-21: Long-term Rectal Cancer Survivors: Perceived Effects of Cancer on Work and Volunteering

Background/AimsSurgical treatments for rectal cancer include intestinal ostomy (externalization of the bowel to the abdominal wall) or, more frequently, an anastomosis (reconnection) of the rectum. These surgeries can give rise to long-term after-effects. We examined differences reported between survivors with ostomies (SO) versus anastomoses (SA) with respect to their work and volunteer activities, and how much they perceived their cancer affected these experiences.MethodsWe mailed our survey to 1,000 long-term (=5 years post-diagnosis) rectal cancer survivors in KP Northern California and KP Northwest during 2010–2011. Our overall response rate was 57.7% (577/1,000). The survey asked about current employment status and the impact of their cancer on labor force participation, demotions, job discrimination, forced retirement, and volunteer activities. Responses from 446 survivors (SA=292 (65%), SO=154 (35%)) were analyzed for differences in changes in work- and volunteer activities.ResultsMean ages for both groups were significantly beyond the retirement age for most Americans (SA=72 yrs, SO=74 yrs). SAs were more likely to be currently working (FT+PT = 30% (89/292)) than SOs (FT+PT = 17% (25/151)), while SOs were more likely to be retired (67% (101/151) vs. 55% (160/292) (p<.05). Rates of permanent disability were similar between the groups—SOs=6.6% (10/151), SAs=5.5% (16/292). One-fifth of survivors (SA=22% (65/290), SA=18% (28/154)) reported volunteering on a regular basis an average of 11 (SOs) to 15 (SAs) hours/week. SAs reported more support from employers than SOs (64% (138/215) vs. 53% (60/113), p<.05), and from co-workers (68% (146/214) vs. 57% (64/112), p<.05). SAs and SOs did not differ in marital status at times of diagnosis or survey. The distribution of marital status shifted between diagnosis and survey: 72% (305/425) were married and 10% (43/425) were widowed at diagnosis; 62% (263/424) were married and 20% (84/424) were widowed at time of survey. No differences were reported by treatment about being forced into retirement.DiscussionCompared to SOs, SAs were more likely to be currently employed, to receive higher rates of support from employers and coworkers, and to volunteer more hours. Perhaps interventions can be developed to allow ostomy survivors to participate more in these functions in their communities.

PS1-09: Comparing the Greatest Challenges of Long-Term Rectal Cancer Survivors with Anastomosis Versus Ostomy

Background Patients surgically treated for rectal cancer receive either an intestinal ostomy (externalization of the bowel to the abdominal wall) or, more frequently, an anastomosis (reconnection) of the rectum. While the challenges of intestinal ostomies have been previously described by this research team, much less is known about the long-term challenges of living with an anastomosis. Understanding the challenges of long-term rectal cancer survivors with both types of surgeries is important for informing and improving current practice.

Health-Related Quality of Life Among Long-Term Rectal Cancer Survivors With an Ostomy: Manifestations by Sex

Intestinal stomas can pose significant challenges for long-term (> or = 5 years) rectal cancer (RC) survivors. Specifying common challenges and sociodemographic or clinical differences will further the development of tailored interventions to improve health-related quality of life (HRQOL). This was a matched cross-sectional study of long-term RC survivors conducted in three Kaiser Permanente regions. The mailed questionnaire included the modified City of Hope Quality of Life-Ostomy (mCOH-QOL-Ostomy) and Medical Outcomes Study 36-Item Short-Form Health Survey, version 2 (SF-36v2). Groups surveyed were permanent ostomates (cases) and those who did not require an ostomy (controls). RC survivors were matched on sex, age, and time since diagnosis. Comparisons between groups used regression analysis with adjustment for age, comorbidity score, history of radiation therapy, income, and work status. Response rate was 54% (491 of 909). Cases and controls had similar demographic characteristics. On the basis of the mCOH-QOL-Ostomy, both male and female cases had significantly worse social well-being compared with controls, while only female cases reported significantly worse overall HRQOL and psychological well-being. For younger females (< age 75 years), ostomy had a greater impact on physical well-being compared with older females. Based on the SF-36v2, statistically significant and meaningful differences between female cases and controls were observed for seven of the eight scales and on the physical and mental component summary scores. Men and women report a different profile of challenges, suggesting the need for targeted or sex-specific interventions to improve HRQOL in this population. This may include focus on physical HRQOL for female ostomy survivors younger than age 75.

Adaptive Conjoint Analysis as individual preference assessment tool: Feasibility through the internet and reliability of preferences

Objective Patient values are not routinely assessed in clinical practice. Adaptive Conjoint Analysis (ACA) is increasingly applied in studies assessing treatment preferences, and could provide a means to routinely assess individual patients’ treatment preferences. Methods An ACA-questionnaire was administered three times (7–10 days apart) to 98 long-term rectal cancer survivors either on a portable computer or through internet, to assess whether (a) responses differ according to administration mode, (b) relative importances of rectal cancer treatment outcomes (survival, local control, incontinence, sexual problems) consolidate over time, (c) ACA-outcomes are sufficiently reliable (ICC) for use in individual decision-making. We also evaluated patients’ acceptance of ACA. Results Mode did not affect ACA-completion or evaluation. Importance scores did not consolidate over time. ICCs were poor for sexual problems and fair for the other outcomes, and were at least equal or higher from first to second retest. Most participants valued completing the ACA-questionnaire and learning their results. Conclusion Values did not show consolidation over time. ACA-derived preferences should not determine which treatment patients should choose. Practice implications Findings extend ACA-validation studies to the health care setting and suggest that ACA-questionnaires might be appreciated as adjuncts to treatment decision-making in newly diagnosed patients.