Psychological distress and resilience in patients with gastroenteropancreatic neuroendocrine tumor.

An increased incidence of gastroenteropancreatic neuroendocrine tumors (GEP-NETs) has been reported in many countries. However, the prevalence and impact factors of psychological distress and resilience in patients with GEP-NETs are unclear. We recruited 200 patients with GEP-NETs to assess psychological distress and resilience. Measures comprised the Distress Thermometer, the Hospital Anxiety and Depression Scale, Connor-Davidson Resilience scale and Medical Coping Modes Questionnaire. Our results found that the prevalence of distress, anxiety, depression and low resilience were 31.5%, 31%, 17.8%, and 25.9%, respectively. Female patients were more likely to be distressed, as were those with NET Grade 1, were partly aware of diagnosis, and had known the diagnosis less than 3 months. Distress positively correlated with acceptance-resignation, and resilience positively correlated with confrontation and avoidance. Resilience negatively correlated with psychological distress. Patients coping disease with acceptance-resignation had higher odds of anxiety, depression, and low resilience. Our findings indicate that psychological distress and low resilience were common in patients with GEP-NETs. This suggests a need to integrate psychosocial domain into GEP-NETs clinical practice.

Coping with social consequences of disease-related symptoms in patients with a metastatic small intestinal neuroendocrine tumour: A qualitative study.

Patients with small intestine neuroendocrine tumours (SINETs) face various disease-related symptoms that can affect their social functioning and quality of life. The present study aimed to explore the social consequences of disease-related symptoms in patients with a metastatic SINET and to develop a theory on how these patients experience their disease. Patients were eligible when they were diagnosed with a metastatic SINET between 2009 and 2016 and were younger than 60 years of age during diagnosis, and had a good functional performance status. Semi-structured interviews were conducted between January and June 2018. Data were transcribed and analysed independently by two researchers using grounded theory. Data saturation was reached at 10 interviews and, in total, 12 patients participated. A core component that arose from the interviews was resilience in the face of social consequences of having a metastatic SINET. Prominent physical symptoms were fatigue, diarrhoea and flushes. All of these symptoms were associated with limitations to function in work-related and social activities, as well as feelings of embarrassment and shame. Adaptive strategies, such as careful planning, or focusing on the perspective to live well with a neuroendocrine tumour, helped patients to experience the consequences as less burdensome. Other helpful factors that were identified constituted social support, engaging in meaningful activities and financial stability. Patients with a metastatic SINET experienced social consequences of disease-related symptoms in daily life, although they were able to attenuate the burden of these consequences by using adaptive problem-based, emotion-based and meaning-based coping strategies. Clinicians could explore the perceived consequences and educate patients about adaptive strategies.

Patient reported symptoms, coping and quality of life during somatostatin analogue treatment for metastatic small- intestinal neuroendocrine tumours.

BACKGROUND: Patients with metastatic small-intestinal neuroendocrine tumours (NET) have been shown to have a reduced quality of life compared to the general population and many have disabling symptoms during somatostatin analogue (SSA) treatment. The aim of this prospective study was to document the patient-reported symptoms, coping and quality of life during SSA treatment and to measure patients' fat-soluble vitamin levels. METHODS: Patients with metastatic small-intestinal NET on treatment with long-acting SSA were included. Data on patient characteristics, blood samples, questionnaires (EORTC-QLQ-C30 and GI.NET-21) and structured patient interviews were collected at inclusion and after 1 year. RESULTS: Eighty-eight patients were included, 77 (88%) attended 1 year follow-up. Approximately 50% of patients reported symptoms, the most common symptoms at baseline and after 1 year follow-up were diarrhoea, flatulence, fatigue, abdominal discomfort and sore injection lumps. Diarrhoea and fatigue were reported as their main complaint, 23% had > 5 daily episodes of diarrhoea and 59% reported fatigue. However, patients reported a high perceived quality of life, high daily activity, coped with their symptoms and managed their daily life well. Deficiency of vitamin D (27%) and A (13%) were observed. CONCLUSIONS: Patients with metastatic small-intestinal NET on SSA treatment reported a high frequency of symptoms. Minor improvements were seen after 1-year of follow-up, illustrating that many symptoms might be difficult to improve, or may not be recognised by the health service. Patients, however, generally reported a high quality of life. Care for NET patients on SSA treatment should include a regular systematic symptom registration and vitamin measurements.

Quality of life in patients with midgut NET following peptide receptor radionuclide therapy.

OBJECTIVES: There is convincing evidence that peptide receptor radionuclide therapy (PRRT) using 177Lu-DOTATATE compared to octreotide therapy has a positive effect on overall survival and progression-free survival in midgut neuroendocrine tumors (NET). The current study analyzed health-related quality of life (QoL) in patients undergoing PRRT with a special focus on differences in functional performance. MATERIALS AND METHODS: In our study, 70 patients (39 men or 31 female) suffering from midgut NET were included, with a mean age of 64.2 years. Functional performance was assessed by the index of the Eastern Cooperative of Oncology Group (ECOG). Thirty-three patients (47%) showed ECOG 0, 31 patients (44%) ECOG 1, and six patients (9%) ECOG 2. Health-related QoL was assessed by the EORTC QLQ-C30 questionnaire filled in at baseline and 3 months after each PRRT cycle. RESULTS: The median cumulative administered activity was 27.4 GBq. Global health status significantly improved compared to baseline status after 1st (p = 0.05), 2nd (p = 0.004), and 3rd (p = 0.04) treatment cycle. Analyzing specific aspects of QoL, emotional functioning significantly improved after 1st and 2nd treatment cycle (both p < 0.001) as well as after 3rd cycle (p = 0.001). With regard to cognitive functioning, there was a significant improvement after 1st and 2nd treatment cycle (p = 0.003 and p = 0.05 respectively). With regard to alleviation of somatic symptoms, a significant reduction in pain and diarrhea was observed after the 2nd cycle (p = 0.038) and 3rd cycle (p = 0.036). Furthermore, changes in QoL in relation to functional performance status as assessed by ECOG were analyzed. There were no significant differences with regard to QoL alterations between patients with high (ECOG 0 or 1) and moderate performance status. CONCLUSION: Our study confirmed an equally positive effect of PRRT on quality of life in midgut NET patients with high or moderate functional status in terms of increasing global health, functional status, and alleviating symptoms.

'I've got a very dichotomous difference in the way that I perceive myself': Positive and negative constructions of body image following cancer treatment.

This study investigated how women constructed body image following cancer. Four women, aged 32-67 years, who had experienced breast or bowel cancer took part in a 2-hour, in-depth focus group. Discourse analysis revealed that women orientated to positive aspects of the post-treatment body (silhouette, trust, acceptance) while acknowledging that their experiences were also traumatic (hair loss, scarring, sickness, swelling). Bodies and illness were concealed from public judgment, and women developed new trust in their bodies due to overcoming cancer; post-cancer bodies were accepted despite opportunities for normalisation. Implications for those wanting to support women during and after cancer are discussed.

'Why don't I need a colonoscopy?' A novel approach to communicating risks and benefits of colorectal cancer screening.

BACKGROUND AND OBJECTIVES: There is significant growth in demand for colonoscopies, with over 700,000 performed in Australia in 2012-13. For every one million Australians aged 50 years and older, 80,000 people at average risk of colorectal cancer are being over-screened with colonoscopy, and 29,000 people at increased risk are not having the colonoscopy they need. METHOD: Using monitoring data from the Australian National Bowel Cancer Screening Program and published data on colonoscopic screening, we have developed expected frequency trees (EFTs) to demonstrate projected outcomes of different colorectal cancer screening options for participants at different levels of colorectal cancer risk in Australia. RESULTS: The EFTs highlight the overall balance in favour of faecal occult blood screening for those at average risk in terms of fewer deaths and complications. DISCUSSION: This novel method of risk communication can be used to promote appropriate patient choice of colorectal cancer screening modality and potentially reduce the number of referrals for colonoscopy in patients who are not at increased risk of colorectal cancer.

Antidepressants appear safe in patients with carcinoid tumor: Results of a retrospective review.

INTRODUCTION: Patients living with neuroendocrine tumors have high rates of depression, often necessitating antidepressants, including selective serotonin reuptake inhibitors (SSRI). Neuroendocrine tumors (NETs) secrete vasoactive substances, including serotonin, which contribute to the cluster of symptoms known as carcinoid syndrome (flushing and diarrhea). Controversy exists over whether or not antidepressants are safe in NET. We aimed to study the safety of antidepressant use in NET patients. METHODS: We conducted a retrospective chart review of patients with well differentiated NET who were also prescribed antidepressants from January 2008 through April 2015. The study took place at Memorial Sloan Kettering Cancer Center and was approved by the hospital's institutional review board. RESULTS: Ninety-two patients were included. There were 16 (17.4%) patients with carcinoid syndrome (10 ileum, 1 duodenum, 1 jejunum and 4 unknown primary); and 76 (82.6%) patients without (41 lung, 9 pancreas, 8 ileal, 5 duodenum, 5 appendix, 2 unknown primary, 1 jejunum and 5 other). Median duration of antidepressant prescription was 11.6 months (range, 0-121) among those with carcinoid syndrome (N = 16) and 14.3 months (range, 0-172) among those without carcinoid syndrome (n = 76). Antidepressants were stopped in 31 cases (33.7%), though the reason was not specified in the majority of cases (n = 18; 58%). None of the patients developed carcinoid syndrome while being prescribed antidepressants. No patients developed carcinoid crisis. CONCLUSION: Our findings do not support previous authors' recommendations that SSRIs must be avoided in NET patients. Several classes of antidepressants appeared safe in NET patients with and without carcinoid syndrome.

Increasing participation of people with learning disabilities in bowel screening.

Learning disability nurses have a key role in addressing the health inequalities experienced by people with learning disabilities. People with learning disabilities are less likely to participate in bowel screening than other sectors of the population, despite there being evidence of this population being at an increased risk of developing bowel cancer. There are a range of barriers at individual and systemic levels that impact on participation in bowel screening by people with learning disabilities. Actions to address these barriers have been identified in the literature and learning disability nurses are a key agent of change in enabling people with learning disabilities to participate in the national screening programmes.

Health-related quality of life, anxiety, depression and impulsivity in patients with advanced gastroenteropancreatic neuroendocrine tumours.

AIM: To compare health-related quality of life (HRQoL), anxiety, depression, and impulsivity scores in patients with and without carcinoid syndrome (CS), and correlated them with serum 5-hydroxyindoleacetic acid (5-HIAA) levels. METHODS: Patients with advanced gastroenteropancreatic neuroendocrine tumours (GEPNET), with and without CS completed HRQoL QLQ-C30 and QLQ-GI.NET21, Hospital Anxiety and Depression Scale (HADS) and Barratt Impulsivity Scale (BIS) questionnaires. Two-sample Wilcoxon test was applied to assess differences in serum 5-HIAA levels, two-sample Mann-Whitney U test for HRQoL and BIS, and proportion test for HADS, between those with and without CS. RESULTS: Fifty patients were included; 25 each with and without CS. Median 5-HIAA in patients with and without CS was 367nmol/L and 86nmol/L, respectively (P = 0.003). Scores related to endocrine symptoms were significantly higher amongst patients with CS (P = 0.04) and scores for disease-related worries approached significance in the group without CS, but no other statistically-significant differences were reported between patients with and without CS in responses on QLQ-C30 or QLQ-GI.NET21. Fifteen patients (26%) scored ≥ 8/21 on anxiety scale, and 6 (12%) scored ≥ 8/21 on depression scale. There was no difference in median 5-HIAA between those scoring < or ≥ 8/21 on anxiety scale (P = 0.53). There were no statistically significant differences between groups in first or second-order factors (BIS) or total sum (P = 0.23). CONCLUSION: Excepting endocrine symptoms, there were no significant differences in HRQoL, anxiety, depression or impulsivity between patients with advanced GEPNET, with or without CS. Over one quarter of patients had high anxiety scores, unrelated to peripheral serotonin metabolism.

Patients' initial steps to cancer diagnosis in Denmark, England and Sweden: what can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors?

OBJECTIVES: To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms. DESIGN: Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer. PARTICIPANTS: 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6 months before interview. SETTING: Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants' homes. RESULTS: Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden. CONCLUSION: We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced.

Patient-reported health state utilities in metastatic gastroenteropancreatic neuroendocrine tumours - an analysis based on the CLARINET study.

BACKGROUND: Gastroenteropancreatic neuroendocrine tumours (GEP-NETs) are rare cancers most often found in the gastrointestinal system or the pancreas. However, patient-reported health state utilities based on clinical trials have not been previously reported in this disease area. METHODS: The CLARINET study collected EORTC QLQ-C30 data from patients in both stable and progressive disease states, although data for the latter were only available during the early stage of progression due to trial design. Using published algorithms, data were mapped to EQ-5D utility values. Random-effects generalised least squares models were used to investigate the impacts of progression status, tumour site and other patient characteristics on mapped utility values. RESULTS: In total, 1053 observations from 204 patients were mapped to EQ-5D utilities using the McKenzie mapping algorithm. The final random-effects model included age, gender, baseline utility and progression status as covariates; it was not feasible to investigate time-to-death utility due to a limit number of deaths in the CLARINET study. Tumour location (midgut vs pancreas) does not seem to affect utility. However, the difference in utilities based on progression status is statistically significant (p < 0.05) in the base case analysis, and the estimated utilities for stable and progressive disease are 0.776 and 0.726, respectively. Furthermore, scenario analyses showed that utility for progressive disease is numerically lower than for stable disease, but this may not be statistically significant in scenarios where alternative Longworth mapping algorithm was used. CONCLUSIONS: Patients with GEP-NETs experience worse utility values in the progressive disease state compared to the stable disease state, based on patient-reported health-related quality of life (HRQL) data from the CLARINET study. The decline of utility in the progressive disease state may be underestimated because progressive HRQL data were only collected shortly after the progression event in the trial. The estimated trial-based utilities can be used in future economic evaluations for GEP-NET treatments and to provide more insights to physicians on patient-reported quality of life outcomes in GEP-NETs. TRIAL REGISTRATION: CLARINET EU Clinical Trials Register Number, 2005-004904-35 .

[Stigmatization in Employed Patients with Breast, Intestinal, Prostate and Lung Cancer]. / Stigmatisierung von erwerbstätigen Patienten mit Brust-, Darm-, Prostata- und Lungenkrebs.

Background The stigma of cancer patients can lead to far-reaching consequences, both for the individual and for the society. Quantitative studies on the stigmatization of cancer patients are scarce. The present study assessed the stigma of cancer patients in relation to their status of employment, and analyzes sociodemographic, disease and occupational predictors. Methods In a bicentric study, 858 patients with breast, bowel, lung or prostate cancer were included. Of these, n=305 were employed and entered into the analyses (age average 55 years, 43% female, 47% breast cancer). As a comparison group, a matched sample of non-employed persons (n=213) is used from our data set. In addition to questions on work and health aspects, stigmatization was measured using the SIS-D (Social Impact Scale). The data are evaluated uni- and multivariable. Results Employed persons with prostate or breast cancer are less stigmatized (p<0.01) than non-employed persons, with effects between d=0.35-0.97. The strongest influence on perceived stigma is the lack of support from the employer, further predictors are poor health, low mental workability and diagnosis of breast cancer (R2 of the final model=0.35). Conclusion The employment of cancer patients is associated with lesser perceived stigmatization. Occupational stigmatization depends above all on the work environment or the employer's supportive attitude.

Systematic review reveals lack of quality in reporting health-related quality of life in patients with gastroenteropancreatic neuroendocrine tumours.

BACKGROUND: Gastroenteropancreatic neuroendocrine tumours (GEP-NET) are often slow-growing and patients may live for years with metastasised disease. Hence, along with increasing overall and progression-free survival, treatments aim at preserving patients' well-being and health-related quality of life (HRQoL). However, studies on systematic HRQoL assessment in patients with GEP-NET are scarce. Therefore, the purpose of the current review is to systematically evaluate the methodological quality of the identified studies. METHODS: A targeted database search was performed in PubMed, EMBASE, and CENTRAL. Data extraction was conducted by two independent researchers according to predefined criteria. For study evaluation, the Minimum Standard Checklist for Evaluating HRQoL Outcomes in Cancer Clinical Trials and the CONSORT Patient-Reported Outcome extension were adapted. RESULTS: The database search yielded 48 eligible studies. We found the awareness for the need of HRQoL measurement to be growing and application of cancer-specific instruments gaining acceptance. Overall, studies were too heterogeneous in terms of patient characteristics and treatment interventions to draw clear conclusions for clinical practice. More importantly, a range of methodological shortcomings has been identified which were mainly related to the assessment and statistical analysis, as well as the reporting and interpretation of HRQoL data. CONCLUSION: Despite an increasing interest in HRQoL in GEP-NET patients, there is still a lack of knowledge on this issue. A transfer of HRQoL results into clinical practice is hindered not only by the scarceness of studies, but also by the often limited quality of HRQoL processing and reporting.

Health-related quality of life in well-differentiated metastatic gastroenteropancreatic neuroendocrine tumors.

Gastroenteropancreatic neuroendocrine tumors (GEP-NETs) are rare neoplasms capable of producing hormones. The development of new treatments has improved progression-free survival, albeit with increased toxicity. Health-related quality of life (HRQoL) has become an important endpoint in clinical research to evaluate patients' well-being in such a contradictory scenario. In this review, we examine key reported outcomes across clinical studies exploring HRQoL in patients with GEP-NETs. We have conducted a review of the literature using PubMed, The Cochrane Library, EMBASE, and Google Scholar. Selection criteria for articles were (1) publication in English between 1995 and 2014, (2) patients with GEP-NET, and (3) analysis of HRQoL, including mental health and psychological symptoms. Forty-nine studies met the inclusion criteria (31 clinical trials, 14 observational studies, and 4 developments of NET-specific HRQoL instruments). The scope and nature of the literature was diverse with 27 instruments used to measure aspects of HRQoL. EORTC QLQ-C30 was the most frequently used, in 38 of the 49 studies. Standardized measures revealed that in spite of generally good HRQoL, GEP-NET patients have specific psychological and physical complaints. The clinical benefit of somatostatin analogs and sunitinib has been clearly supported by HRQoL assessment. Improvement in HRQoL scores or symptom relief over time was also reported in 14 trials of peptide receptor radionuclide therapy, however the absence of randomized studies obviate definitive conclusions. We have also identified several unanswered questions that should be addressed in further research concerning chemotherapy, everolimus, surgery, local ablative therapies, and chemoembolization. Future research should incorporate GEP-NET-specific HRQoL instruments into phase III trials. This review may help both clinicians and researchers to select the most appropriate tools to assess changes in HRQoL in this population.

The incidence of over-the-counter medication use in patients with midgut neuroendocrine tumors.

Recent increases in the use of over-the-counter (OTC) medicines and the underreporting of the use of these medications to physicians have sparked interest in the number and types of "supportive" therapies used by patients with neuroendocrine tumors (NETS). Patients with NETS are of special interest as a result of the potential interactions/interferences between tumor-associated peptide and amine production and OTC supplements. A prospective analysis of patients with primary small bowel NETS between 1998 and 2012 was conducted to define and catalog each patient's prescription and OTC medication use at each clinic visit. The most recently recorded patient medications were used for this analysis. Three hundred sixty-two patients with small bowel primary NETS were studied. One hundred eighty-seven patients (51.6%) were taking nutritional supplements. Of these taking supplements, the per cent of patients taking one, two, three, or more than three supplements was 28.3, 24.1, 22.5, and 25.1 per cent, respectively. Females (n = 109) were more likely to take supplements in comparison to males (n = 78; P = 0.037). Fifty one patients (14.1%) took proton pump inhibitors and 31 patients (8.6%) took loperamide. OTC supplements were used by 50 per cent of patients with primary small bowel NETS in this study. Over one-third of our patients reported using three or more OTC medicines daily. These medicines have the potential to interact with the metabolism of prescribed medicines, modify ability to clot during surgery, exacerbate NET symptoms, and alter NET markers. Given the prevalence of OTC medications and their potential actions, it is important to carefully catalog their use.

[Utilisation of Psycho-oncological Services in Hospitals and Outpatient Counselling Centres by Survivors of Breast, Colon and Prostate Cancer]. / Inanspruchnahme psychoonkologischer Versorgung im Krankenhaus und in Krebsberatungsstellen durch Brust-, Darm- und Prostatakrebsüberlebende.

INTRODUCTION: We investigated how many cancer survivors receive psycho-oncological care in hospitals and outpatient cancer counselling centres and which factors influence usage. METHODS: Long-term survivors of breast, colon or prostate cancer completed a questionnaire assessing the use of psycho-oncological services in the "Cancer Survivorship--a multiregional population-based study (CAESAR)". Gender, age, community size, education, income and stage of disease were investigated as potential predictors of use. RESULTS: Out of 6,143 participants, 547 (9%) reported having received psycho-oncological support in the hospital, 183 (3%) had visited a counselling centre. Inpatient services were more frequently used by higher educated persons (OR 1.5), women (OR 1.3), and patients with advanced disease (OR 1.3); less frequently by older survivors (OR 0.6). Community size and income were not related to inpatient use. Counselling centres were visited more frequently by women (OR 2.2), higher educated survivors (OR 2.1), patients with advanced disease (OR 1.6), and participants from communities with >100,000 inhabitants (OR 2.4); less frequently from elderly OR 0.4). DISCUSSION: Especially the use of outpatient cancer counselling centres was associated with contextual and individual factors whereas this was not so much the case with the use of inpatient services. This implies that care models where psycho-oncologists actively approach patients are better able to access all patient groups in contrast to care models where patients have to actively seek help. It also implies that non-use not necessarily means that patients do not need help but that there are barriers to health care access.

Reasons for non-uptake and subsequent participation in the NHS Bowel Cancer Screening Programme: a qualitative study.

BACKGROUND: Screening for bowel cancer using the guaiac faecal occult blood test offered by the NHS Bowel Cancer Screening Programme (BCSP) is taken up by 54% of the eligible population. Uptake ranges from 35% in the most to 61% in the least deprived areas. This study explores reasons for non-uptake of bowel cancer screening, and examines reasons for subsequent uptake among participants who had initially not taken part in screening. METHODS: Focus groups with a socio-economically diverse sample of participants were used to explore participants' experience of invitation to and non-uptake of bowel cancer screening. RESULTS: Participants described sampling faeces and storing faecal samples as broaching a cultural taboo, and causing shame. Completion of the test kit within the home rather than a formal health setting was considered unsettling and reduced perceived importance. Not knowing screening results was reported to be preferable to the implications of a positive screening result. Feeling well was associated with low perceived relevance of screening. Talking about bowel cancer screening with family and peers emerged as the key to subsequent participation in screening. CONCLUSIONS: Initiatives to normalise discussion about bowel cancer screening, to link the BCSP to general practice, and to simplify the test itself may lead to increased uptake across all social groups.

Patients' perception of colonoscopy: patients with inflammatory bowel disease and irritable bowel syndrome experience the largest burden.

BACKGROUND: Colonoscopy is a frequently performed procedure worldwide with a negative perception, leading to reluctance to undergo the procedure. Perceptions could differ depending on the specific indication for the colonoscopy. AIMS: To compare patient satisfaction with the colonoscopy procedure between five different patient groups: inflammatory bowel disease (IBD), familial predisposition for cancer, adenoma/carcinoma surveillance, symptoms suggestive of cancer, and irritable bowel syndrome (IBS). METHODS: A prospective questionnaire study was carried out in two regional hospitals and two tertiary teaching hospitals in the Netherlands. A total of 797 consecutive patients scheduled for colonoscopy between October 2009 and June 2010, 146 (18%) IBD, 153 (19%) adenoma or carcinoma surveillance, 104 (13%) familial predisposition, 280 (35%) symptoms suggestive of cancer, and 114 (14%) IBS-like symptoms, were included. Two questionnaires were administered: one on the day of the procedure and another 6 weeks after the procedure. The main outcome measurements were embarrassment, pain, burden, most burdensome aspect, and overall level of satisfaction. RESULTS: Patients with IBD and IBS reported significantly more embarrassment and burden from the bowel preparation phase (P=0.040 and 0.018, respectively) and more pain during the colonoscopy procedure (P=0.018). This difference in pain was also observed when adjusting for volume of sedation administered, familiarity with the endoscopist, duration of the colonoscopy, or whether or not an intervention was performed. All patient groups were less satisfied with the procedure at 6 weeks than directly after the colonoscopy; they recalled more embarrassment and burden, but less pain. CONCLUSION: Patient groups, defined by indication for colonoscopy, experience the colonoscopy procedure differently.