Rachael Roberts

What do patients want? Patient preferences and surrogate decision making in the treatment of colorectal cancer

AbstractPURPOSE: Clinicians often make decisions for their patients, despite evidence that suggests that correspondence between patient and clinician decision making is poor. The management of colorectal cancer presents difficult decisions because the impact of treatment on quality of life might overshadow its survival efficacy. This study investigated whether patients are able to trade survival for quality of life as a means to express their preference for treatment options and to compare their preferences with those expressed by clinicians. METHODS: Patients undergoing curative surgery for colorectal cancer were interviewed postoperatively to elicit their preferences in four hypothetical treatment scenarios. A questionnaire was mailed to all Australian colorectal surgeons and medical oncologists that asked them to respond as if they themselves were patients. RESULTS: One hundred patients (91 percent), 43 colorectal surgeons (77 percent), and 103 medical oncologists (50 percent) participated. In all four scenarios, patients were able to trade survival for quality of life. Patients’ responses varied between scenarios, both in willingness to trade and the average amount traded. There were significant differences between patients and clinicians. Clinicians were more willing than patients to trade survival to avoid a permanent colostomy in favor of chemoradiotherapy. Patients’ strongest preference was to avoid chemotherapy, more than to avoid a permanent colostomy. CONCLUSIONS: Patients are able to trade survival as a measure of preference for quality of life and can do so differentially between treatment scenarios. Patients’ preferences do not always accord with those of clinicians. Unless patients’ preferences are explicitly sought and incorporated into clinical decision making, patients may not receive the treatment that is best for them.

Randomized, controlled trial of biofeedback with anal manometry, transanal ultrasound, or pelvic floor retraining with digital guidance alone in the treatment of mild to moderate fecal incontinence.

AbstractBACKGROUND: A prospective, three-armed, randomized, controlled trial was performed to assess whether pelvic floor exercises with biofeedback using anal manometry or transanal ultrasound are superior to pelvic floor exercises with feedback from digital examination alone in terms of continence, quality of life, physiologic sphincter strength, and compliance. Its secondary objectives were to assess whether there are any differences in these outcomes between biofeedback with transanal ultrasound vs. anal manometry and to correlate the physiologic measures with clinical outcome. METHODS: One hundred twenty patients with mild to moderate fecal incontinence were randomized into one of three treatment groups: biofeedback with anal manometry, biofeedback with transanal ultrasound, or pelvic floor exercises with feedback from digital examination alone. Commencing one week after an initial 45-minute assessment session, patients attended monthly treatments for a total of five sessions. Each session lasted 30 minutes and involved sphincter exercises with biofeedback that involved instrumentation or digital examination alone, and patients were encouraged to perform identical exercises twice per day between outpatient visits. RESULTS: One hundred two patients (85 percent) completed the four-month treatment program. Across all treatment allocations, patients experienced modest but highly significant improvements in all nine outcome measures during treatment, with 70 percent of all patients perceiving improvement in symptom severity and 69 percent of patients reporting improved quality of life. With the possible exception of isotonic fatigue time, there were no significant differences between the three treatment groups in compliance, physiologic sphincter strength, and clinical or quality-of-life measures. Correlations between physiologic measures and clinical outcomes were much stronger with ultrasound-based measures than with manometry. CONCLUSIONS: Although patients in this study who completed pelvic floor exercises with feedback from digital examination achieved no additional benefit from biofeedback and measurement with transanal ultrasound or manometry, it may be that the guidance received through digital examination alone offered patients in the pelvic floor exercise group an effective biofeedback mechanism. Contrary to our hypothesis, the use of transanal ultrasound offered no benefit over manometry, but the use of ultrasound for isotonic fatigue time and isometric fatigue contractions provided potentially important physiologic measures that require further study. This study has confirmed, through a large sample of patients, that pelvic floor retraining programs are an effective treatment for improving physiologic, clinical, and quality-of-life parameters in the short term.

Assessment of Quality of Life in the Treatment of Patients With Neuropathic Fecal Incontinence

AbstractINTRODUCTION: Development of quality-of-life measures has been the focus of research in colorectal disorders in recent years. The assessment of quality of life for fecal incontinence should be more important than quantitative measurement of soiling. PURPOSE: This study assesses specific patient quality-of-life objectives, categorizes objectives, and correlates these objectives with continence scores. METHODS: One hundred eighteen patients entered into a randomized, controlled trial of biofeedback were assessed using the Direct Questioning of Objectives quality-of-life measure. All objectives were documented, categorized, and correlated with continence scores and analog scales. RESULTS: In patients with neuropathic fecal incontinence, the most frequent quality-of-life group concerned the ability to get out of home, to socialize outside of home, to go shopping, and not to have to worry about the location of the nearest toilet while out of home (34 percent; 123/364). At least one of these four objectives was stated by 72 percent of patients (85/118). Only 31 percent of patients (37/118) nominated an objective related to the physical act of soiling. The ability to travel (29 percent), exercise including walking (25 percent), perform home duties (19 percent), family and relationships (22 percent), and job (13 percent) were less frequently cited by patients. CONCLUSION: Continence scores focus heavily on the physical aspects of incontinence such as soiling and hygiene, aspects which seem to be less important to the patients themselves. It is important, therefore, that assessments of fecal incontinence should include reference to quality of life, and in particular to its impact on activities relating to “getting out of the house.”

Long-term outcomes of pelvic floor exercise and biofeedback treatment for patients with fecal incontinence.

AbstractPURPOSE: The aim of this study was to assess the long-term clinical and quality of life outcomes for patients after referral to a four-month treatment program for fecal incontinence based on pelvic floor exercises and biofeedback. Secondary objectives were to document patients’ subsequent treatment activities and their perception of the biofeedback training; to establish the long-term outcomes and initial predictors for the subset of patients who did not complete the treatment, or who failed to improve during the program; and to correlate changes in clinical outcome measures and quality of life over time. METHODS: Patients were contacted by telephone to determine their perception of progress subsequent to the treatment program, any subsequent treatment or activities relating to their fecal incontinence, and which aspect of the treatment program they believed was most helpful. St. Mark’s and Pescatori fecal incontinence scores were also recorded, along with patients’ self-assessments of their incontinence severity and quality of life. RESULTS: Eighty-three (69 percent) patients were contacted for interviews at a median of 42 (range, 26–56) months after program completion. At the time of follow-up, patients who completed the program continued to enjoy strongly significant improvements in all outcome measures, with 75 percent perceiving a symptomatic improvement and 83 percent reporting improved quality of life. For many patients, improvement continued subsequent to program completion. Patients whose incontinence scores became worse during treatment still reported improvement in their quality of life and perceived incontinence severity during the same time period; many experienced some degree of “catch-up” in their continence scores during the follow-up period. Fourteen patients (17 percent) went on to have surgery for fecal incontinence; of these, 6 (7 percent) had a stoma. Twenty (24 percent) regularly took antidiarrheal medication. Thirty program completers (41 percent) were continuing pelvic floor exercises. CONCLUSIONS: This study confirms the long-term improvement in fecal incontinence achieved through treatment with biofeedback and pelvic floor exercises. In this study, patients also continued to improve after treatment completion, possibly because of the strong emphasis placed on patients during treatment to continue the pelvic floor exercises on their own. The poor correlation between quality of life and quantitative scores of fecal incontinence suggests that there are important aspects of continence that are not being appropriately recognized.

Does radiotherapy of the primary rectal cancer affect prognosis after pelvic exenteration for recurrent rectal cancer

BACKGROUND: Radiotherapy reduces local recurrence rates but is also capable of short- and long-term toxicity. It may also render treatment of local recurrence more challenging if it develops despite previous radiotherapy. OBJECTIVE: This study examined the impact of radiotherapy for the primary rectal cancer on outcomes after pelvic exenteration for local recurrence. DESIGN: We conducted a retrospective review of exenteration databases. SETTING: The study took place at a quaternary referral center that specializes in pelvic exenteration. PATIENTS: Patients referred for pelvic exenteration from October 1994 to November 2012 were reviewed. Patients who did and did not receive radiotherapy as part of their primary rectal cancer treatment were compared. MAIN OUTCOME MEASURES: The main outcomes of interest were resection margins, overall survival, disease-free survival, and surgical morbidities. RESULTS: There were 108 patients, of which 87 were eligible for analysis. Patients who received radiotherapy for their primary rectal cancer (n = 41) required more radical exenterations (68% vs 44%; p = 0.020), had lower rates of clear resection margins (63% vs 87%; p = 0.010), had increased rates of surgical complications per patient (p = 0.014), and had a lower disease-free survival (p = 0.022). Overall survival and disease-free survival in patients with clear margins were also lower in the primary irradiated patients (p = 0.049 and p < 0.0001). This difference in survival persisted in multivariate analysis that corrected for T and N stages of the primary tumor. LIMITATIONS: This study is limited by its retrospective nature and heterogeneous radiotherapy regimes among radiotherapy patients. CONCLUSIONS: Patients who previously received radiotherapy for primary rectal cancer treatment have worse oncologic outcomes than those who had not received radiotherapy after pelvic exenteration for locally recurrent rectal cancer.

Effect of timing on baseline quality of life scores among surgical cancer patients

ObjectivesTo investigate differences between quality of life (QoL) scores obtained preoperatively or recalled in the early postoperative period amongst patients undergoing major cancer surgery.ResultsOf the 283 patients included, 133 completed their baseline QoL questionnaire preoperatively and 150 postoperatively. Patient groups were broadly comparable in terms of age however the preoperative group had a lower proportion of patients from non-English speaking backgrounds. There were important and statistically significant differences between mean scores for physical health (overall physical health, physical functioning and role physical domains) and mental health (overall mental health and mental health domains) between pre- and postoperative groups. There were no differences for other domain-specific scores (bodily pain, general health, vitality, social functioning and role emotional).