Anne M. Stiggelbout

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.

BACKGROUND Few prospective studies have been performed about the impact of preoperative radiotherapy (PRT) or total mesorectal excision (TME) on health-related quality of life (HRQL) and sexual functioning in patients with resectable rectal cancer. This report describes the HRQL and sexual functioning of 990 patients who underwent TME and were randomly assigned to short-term PRT (5 x 5 Gy). PATIENTS AND METHODS The Rotterdam Symptom Check List supplemented with additional items was used with questionnaires before treatment and at 3, 6, 12, 18, and 24 months after surgery. Patients without a recurrence the first 2 years were analyzed (n = 990). RESULTS Few differences were found in HRQL between patients treated with or without PRT. Daily activities were significantly less for PRT patients 3 months postoperatively. Irradiated patients recovered slower from defecation problems than TME-only patients (P = .006). PRT had a negative effect on sexual functioning in males (P = .004) and females (P < .001). Irradiated males had more ejaculation disorders (P = .002), and erectile functioning deteriorated over time (P < .001). PRT had similar effects in patients who underwent a low anterior resection (LAR) versus an abdominoperineal resection (APR). Patients with an APR scored better on the physical (P = .004) and psychologic dimension (P = .007) than LAR patients, but worse on voiding (P = .0007). CONCLUSION Short-term PRT leads to more sexual dysfunction, slower recovery of bowel function, and impaired daily activity postoperatively. However, this does not seriously affect HRQL. The comparison between LAR and APR patients demonstrates that the existence of a permanent stoma is not the only determinant of HRQL.

Shared decision making: really putting patients at the centre of healthcare

Although many clinicians feel they already use shared decision making, research shows a perception-reality gap. A M Stiggelbout and colleagues discuss why it is important and highlight some best practices

Systematic evaluation of rating scales for impairment and disability in Parkinson's disease

We assessed the clinometric characteristics of rating scales used for the evaluation of motor impairment and disability of patients with Parkinsons disease (PD), conducting a systematic review of PD rating scales published from 1960 to the present. Thirty studies describing clinometrics of 11 rating scales used for PD were identified. Outcome measures included validity (including factor structure), reliability (internal consistency, inter‐rater, and intrarater) and responsiveness. We traced three impairment scales (Webster, Columbia University Rating Scale [CURS] and Parkinsons Disease Impairment Scale), four disability scales (Schwab and England, Northwestern University Disability Scale [NUDS], Intermediate Scale for Assessment of PD, and Extensive Disability Scale), and four scales evaluating both impairment and disability (New York University, University of California Los Angeles, Unified Parkinsons Disease Rating Scale [UPDRS], and Short Parkinson Evaluation Scale). The scales showed large differences in the extent of representation of items related to signs considered responsive to dopaminergic treatment or to those signs that appear late in the disease course and lack responsiveness to treatment. Regardless of the scale, there was a conspicuous lack of consistency concerning inter‐rater reliability of bradykinesia, tremor, and rigidity. Overall disability items displayed moderate to good inter‐rater reliability. The available evidence shows that CURS, NUDS, and UPDRS have moderate to good reliability and validity. In contrast to their widespread clinical use for assessment of impairment and disability in PD, the majority of the rating scales have either not been subjected to an extensive clinometric evaluation or have demonstrated clinometric shortcomings. The CURS, NUDS, and UPDRS are the most evaluated, valid, and reliable scales currently available.

Assessment of autonomic dysfunction in Parkinson's disease: the SCOPA-AUT

We developed a questionnaire to assess autonomic symptoms in patients with Parkinsons disease (PD) and evaluated its reliability and validity. Based on the results of a postal survey in 46 PD patients, 21 multiple system atrophy patients, and 8 movement disorders specialists, items were included according to their frequency, burden, and clinical relevance. The questionnaire was evaluated in 140 PD patients and 100 controls, and test–retest reliability was established in a sample of 55 PD patients. The SCOPA‐AUT consists of 25 items assessing the following regions: gastrointestinal (7), urinary (6), cardiovascular (3), thermoregulatory (4), pupillomotor (1), and sexual (2 items for men and 2 items for women) dysfunction. Test–retest reliability was good. Autonomic problems increased significantly with increasing disease severity for all autonomic regions, except sexual dysfunction. We conclude that SCOPA‐AUT is a reliable and valid questionnaire that evaluates autonomic dysfunction in PD.

Follow-up of patients with colorectal cancer. A meta-analysis.

ObjectiveThe authors sought to determine whether intensive follow-up improves 5-year survival rates in patients with colorectal cancer who were operated on for cure. Summary Background DataIntensive follow-up of patients with colorectal cancer is still controversial. The present uncertainty in regard to the value of intensive follow-up could be the result of the absence of prospective randomized studies comparing patients with and without follow-up.Methods Studies comparing two follow-up programs of different intensities were identified in the medical literature and were aggregated in a meta-analysis using the “random effects method.” even nonrandomized studies describing 3283 patients were analyzed. ResultsPatients with intensive follow-up did have 9% better 5-year survival rates than did those with minimal or no follow-up, only when intensive follow-up included carcinoembryonic antigen (CEA) assays. In addition, more asymptomatic recurrences were detected and more recurrences were resected in patients with intensive follow-up. ConclusionsThis meta-analysis indicated that intensive follow-up using CEA assays can identify treatable recurrences at a relatively early stage. Treatment of these recurrences appears to be associated with improved 5-year survival rates. However, not all intensive follow-up strategies will be equally effective. Follow-up may yield the best results if diagnostic tests are used only to detect those recurrences that can be operated on with curative intent and when follow-up is “individualized,” according to patient characteristics.

Cosmesis and body image after laparoscopic-assisted and open ileocolic resection for Crohn's disease

AbstractBackground: The objectives of this study were to evaluate body image, cosmetic results, and quality of life in patients with Crohns disease of the terminal ileum who had either laparoscopic-assisted or open ileocolic resection, and to determine how patients experienced the pre- and postoperative periods after both procedures. Methods: Thirty-four patients participated: 11 patients after open resection (OR), 11 patients after laparoscopic-assisted resection (LR), and 12 patients without resection (WR). Retrospectively, the patients filled out several questionnaires pertaining to body image, hospital experiences, and quality of life. One-way analysis of variance, Students t-tests, and Pearsons correlation were used for statistical analysis. Results: The cosmetic score was significantly higher in the LR than in the OR group (p < 0.01). Body image correlated strongly with cosmesis and with quality of life. The hospital experiences of the laparoscopic and open groups were similar. Conclusions: Laparoscopic surgery was associated with better cosmesis than open surgery. Patients do not experience laparoscopic surgery any differently from open surgery.

What is the impact of fecal incontinence on quality of life

PURPOSE: The objective of this study was to determine at what point fecal incontinence affects quality of life. METHODS: In 35 patients who had anterior sphincter repair for fecal incontinence as a result of obstetric injury, continence evaluated by the Wexner score was compared with validated quality of life tests (Gastrointestinal Quality of Life Index and Medical Outcomes Study Short-Form General Health Survey). The questionnaires were sent by mail. Thirty-two patients responded. The Wexner score (0–20) was correlated with the Gastrointestinal Quality of Life Index and the Medical Outcomes Study Short-Form General Health Survey and matched with those of reference groups. RESULTS: The mean Wexner score was 8.8, corresponding with losing stools between once a week and once a month. The mean Gastrointestinal Quality of Life Index score was 105 (range, 48–136), which is significantly lower than the score found in a reference group of normal individuals. Medical Outcomes Study Short-Form General Health Survey scores were significantly lower in all six dimensions compared with the reference group. A Wexner score of 9 or higher was associated with a Gastrointestinal Quality of Life Index score of less than 105, which implies that patients were less mobile in the community and were confined to their homes. A similar correlation was found between a Wexner score higher than 9 and the Medical Outcomes Study Short-Form General Health Survey. CONCLUSIONS: A Wexner score of 9 or higher indicates a significant impairment of quality of life and can therefore be used in decision making.

Assessment of cognition in Parkinson’s disease

Objective: To develop a short, practical instrument that is sensitive to the specific cognitive deficits in Parkinson’s disease (PD) for comparing groups in research situations and for assessing change in cognitive functioning over time. Methods: A literature search was conducted to identify the most frequently affected cognitive domains in PD and to select candidate items for the initial scale. This scale was tested in 85 patients and 75 age-, education-, and sex-matched control subjects. Items that met predefined criteria for data quality, reproducibility, and discriminative properties were included in the final scale. Results: The final scale, the SCOPA-COG (SCales for Outcomes of PArkinson’s disease–cognition), consists of 10 items with a maximum score of 43, with higher scores reflecting better performance. The test–retest reliability of the total score was 0.78 (intraclass correlation coefficient) and ranged from 0.40 to 0.75 for individual items (weighted κ). Cronbach’s α was 0.83. Construct validity of the scale was supported by the expected correlations with the CAMCOG (Cambridge Cognitive Examination) and the Mini-Mental State Examination (MMSE) and by differences found between groups of participants classified by dementia status and between patients grouped by disease severity. The scale showed a clear trend toward lower cognition scores for patients with more advanced PD. The coefficient of variation of the SCOPA-COG was higher than that of the CAMCOG or the MMSE, indicating a better ability to detect differences between individuals. Conclusion: The SCOPA-COG is a short, reliable, and valid instrument that is sensitive to the specific cognitive deficits in PD.

Cognitive impairment in Parkinson's disease

Background: Cognitive impairment plays a role in Parkinson’s disease (PD) and has important consequences for patient management. However, many aspects of cognitive impairment in PD remain unclear because of the use of different and often invalid measurement instruments. In this study, a reliable and valid instrument, the SCales for Outcomes in PArkinson’s disease-COGnition (SCOPA-COG), was used. Aim: To evaluate cognitive functioning in a large cohort of patients with Parkinson’s disease and to assess the relations with demographic, disease related and clinical variables. Methods: A cohort of 400 patients with PD was evaluated for cognition, motor and non-motor domains, as well as for demographic and disease related characteristics. Results were compared with 150 controls matched for overall age, sex and education distribution. Results: Patients with PD scored significantly lower on all cognitive subdomains compared with controls, with the largest differences for executive functioning and memory. After correction for age and years of education, 22% of patients had impaired cognition, as measured by the total SCOPA-COG score, compared with controls. Across all patients, more severe cognitive impairment was associated with significantly more impairment in motor, autonomic, depressive and psychotic domains. Patients with the postural instability gait difficulty (PIGD) dominant phenotype showed more cognitive impairment compared with patients with the tremor dominant phenotype. Contrary to tremor scores, PIGD scores significantly worsened with increasing disease severity. Conclusions: Cognition is an important domain of the clinical spectrum of PD and poorer cognitive performance is associated with greater impairment in motor and non-motor domains in PD. The difference in cognitive scores between PIGD dominant patients and tremor dominant patients likely reflects more advanced disease.

Second cancer risk following testicular cancer: a follow-up study of 1,909 patients.

PURPOSE Improved survival in testicular cancer has been accompanied by concern about long-term side effects of therapy. We assessed the evolution of second cancer (SC) risk over a prolonged follow-up period, which has been rarely studied in large patient series. PATIENTS AND METHODS We estimated the risk of SCs in 1,909 patients with testicular cancer diagnosed in the Netherlands from 1971 to 1985. Complete medical information was obtained up to at least January 1988 for 92% of patients. Median follow-up was 7.7 years. For 89% of second tumors the diagnosis was confirmed through review of histologic slides; for an additional 8%, the diagnosis was verified by pathology reports only. RESULTS Seventy-eight patients developed a SC 1 year or more after start of treatment, as compared with 47.6 expected on the basis of incidence rates in the general population (relative risk [RR], 1.6; 95% confidence interval [CI], 1.3 to 2.1). The mean 15-year actuarial risk of all SCs was 9.8% (95% CI, 7.5% to 12.8%). Significantly increased RRs were observed for all gastrointestinal cancers combined (RR, 2.6; 95% CI, 1.7 to 3.9), stomach cancer (RR, 3.7; 95% CI, 1.8 to 6.8), contralateral testicular cancer (CLTC) (RR, 35.7; 95% CI, 21.8 to 55.2), and leukemia (RR, 5.1; 95% CI, 1.4 to 13.0). Patients who had received irradiation to the paraaortic lymph nodes and who survived testicular cancer for more than 5 years were at particularly high risk of developing stomach cancer (RR, 6.9; 95% CI, 3.3 to 12.7). The median interval between the diagnosis of testicular cancer and stomach cancer was 12.4 years. Patients treated with chemotherapy (CT) did not experience an increase in SCs in general. Indeed, CT-treated patients, as compared with those who received radiotherapy (RT), or surgery alone, had significantly reduced risk of CLTC. This finding might be attributed to an eradicating effect of CT on carcinoma in situ or subclinical CLTC. The excess risk of leukemia was not found to be clearly related to CT. CONCLUSION Testicular cancer patients who receive RT experience elevated risk of gastrointestinal tumors. CT does not seem to increase SC risk and may even decrease the risk of a CLTC. Following testicular cancer, the 15-year actuarial risk of all SCs is only about half the risk experienced by patients with Hodgkins disease.