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Objectives: Theory has offered suggestions on how people may adjust their personal goals after goal disturbance or altered life situations. However, the actual use of these goal adjustment strategies has rarely been studied. This study aimed to investigate whether the goal adjustment strategies identified in the literature are used in the first 6 months following a diagnosis of cancer and whether alternative strategies can be identified.Design: Exploratory design with a qualitative method of data collection.Methods: Patients were asked to list their current personal goals within a month after being diagnosed with colorectal cancer. Six months later, they were asked what had happened to each of these goals. For each goal, raters scored whether (1) it was achieved or being pursued as planned, (2) a known strategy was used, or (3) an alternative strategy was used.Results: Patients with colorectal cancer (n = 130) reported that more than half of their goals had been achieved or were being pursued as planned. The remaining goals (n = 210) required goal adjustment strategies. Patients used five of six known strategies that involved mostly limited adjustment. Additionally, they used combinations of goal adjustment strategies, and two alternative strategies were identified.Conclusions: This study found that patients with cancer use goal adjustment strategies, and it provides illustrations on how these strategies are used, thus deepening and extending existing knowledge of and theory on goal adjustment. Future studies should take the newly identified strategies into account as well as the possible use of combinations of strategies.Statement Of Contribution: What is already known on this subject? The successful pursuit of personal goals is important for maintaining well-being. However, an unexpected and serious illness such as cancer can lead to the need to adjust goals, either because they have become difficult or impossible to attain due to physical hindrance of the illness and/or its treatment, or because other goals have become important due to the confrontation with the fragility of life. Theories have proposed options of how people may deal with their personal goals, but whether these so-called goal adjustment strategies are actually used by cancer patients, and whether there are alternative strategies we need to take into account, is still unclear. What does this study add? This study employs a qualitative method of data collection to study what actually happens to cancer patients' goals during the first 6 months after diagnosis. This study found that almost all goal adjustment strategies from theory are indeed used by cancer patients and that they mostly use strategies which involve only limited adjustment and a continued focus on the original goal. We found that patients with cancer use combinations of strategies and two alternative strategies, thereby complementing and expanding theories on goal adjustment. [ABSTRACT FROM AUTHOR]

Background/aims: Patient-reported outcomes (PROs) are increasingly considered important. We developed a web-based application to electronically assess PROs in routine dermatological practice. We assessed (1) the relevance of PRO measurement according to health care providers and patients, (2) the feasibility of our application in routine practice according to health care providers, supporting staff and patients, and (3) barriers/facilitators for implementation according to health care providers and supporting staff. Methods: Health care providers, supporting staff and patients completed study-specific questionnaires. Also, website statistics were analysed. Results: 3/6 clinics participated, including 9 professionals and 80 patients. Both health care providers and patients rated PRO measurement as relevant. However, implementation was only moderately feasible. Time constraints and logistical problems were mentioned as barriers, and motivated patients and supportive staff as facilitators. Conclusion: Electronic PRO assessment in routine practice is not self-evident. Adjustments in logistics are recommended to optimize implementation, using a plan-do-study-act approach. [ABSTRACT FROM AUTHOR]

Background. The degree of trust in and satisfaction with the physician has been shown to have important implications for treatment outcomes. This study aims to examine individual differences in patients' trust, satisfaction and general distress from an attachment theoretical perspective. Material and methods. One hundred and thirty recently diagnosed cancer patients of three medical hospitals were extensively interviewed by trained psychologists to assess attachment style. Patients completed standardized questionnaires three and nine months after diagnosis to assess trust, satisfaction and distress, t-tests and repeated measures ANOVAs were used to examine differences between securely and insecurely attached patients and changes over time. A mediation model based on a bootstrapping method was used to examine whether trust mediated between attachment and satisfaction, and attachment and distress. Results. Insecurely attached patients (N = 45, 35%) reported less trust in and satisfaction with their physician, and reported more general distress dian securely attached patients three and nine months after diagnosis (p < 0.05).Trust and distress levels did not change over time.Trust mediated between attachment and satisfaction, but not between attachment and distress. Conclusion. Insecurely attached patients trusted their physician less than securely attached patients, and in turn were less satisfied with their physician. Their higher levels of general distress were not related to their lower levels of trust. Attachment theory provides a framework to interpret differences in patients' trust, satisfaction and distress, and may help physicians respond in such a way that their patients feel secure, which in turn is expected to result in better health outcomes. [ABSTRACT FROM AUTHOR]

We compared adherence to cART and virological response between indigenous and immigrant HIV-infected patients in the Netherlands, and investigated if a possible difference was related to a difference in the psychosocial variables: HIV-stigma, quality-of-life, depression and beliefs about medications. Psychosocial variables were assessed using validated questionnaires administered during a face-to-face interview. Adherence was assessed trough pharmacy-refill monitoring. We assessed associations between psychosocial variables and non-adherence and having detectable plasma viral load using logistic regression analyses. Two-hundred-two patients participated of whom 112 (55%) were immigrants. Viral load was detectable in 6% of indigenous patients and in 15% of the immigrants ( P < 0.01). In multivariate analyses, higher HIV-stigma and prior virological failure were associated with non-adherence, and depressive symptoms, prior virological failure and non-adherence with detectable viral load. Our findings suggest that HIV-stigma and depressive symptoms may be targets for interventions aimed at improving adherence and virological response among indigenous and immigrant HIV-infected patients. [ABSTRACT FROM AUTHOR]

This study examines stigmatization among immigrant and indigenous (a person whose parents were both born in the Netherlands) HIV-infected patients in the Netherlands. We interviewed 90 indigenous Dutch and 112 immigrant HIV-infected patients using the personalized stigma and disclosure concerns subscales of the HIV Stigma Scale. Use of these scales with HIV-infected immigrant patients was feasible as we found adequate reliability and patients were able to answer the questions after explanation. Personalized stigma was significantly higher among HIV-infected immigrants. Disclosure concerns were significantly higher among persons with an HIV transmission route other than men having sex with men. In multivariate analyses adjusting for age, sex, and number of years being HIV positive, having an immigrant status remained significantly associated with personalized stigma and HIV transmission routes other than men having sex with men remained significantly associated with having more disclosure concerns. Our findings suggest that social workers and counselors should be especially attentive to experienced and perceived HIV stigma among HIV-infected persons from these particular populations. Future studies should explore the mechanisms underlying stigmatization in the different subgroups so interventions to decrease stigmatization can be developed and examined. [ABSTRACT FROM AUTHOR]

Background: HIV-infected patients on combination antiretroviral therapy (cART) may experience symptoms because of HIV disease or treatment. Symptoms might negatively affect quality of life, adherence, virological response, and survival. We investigated to what extent HIV-infected patients receiving cART experience symptoms with a median follow-up of 5.1 years. Additionally, we studied whether self-reported symptoms were related to concurrent quality of life and virological failure. Methods: Patients from the ATHENA cohort completed questionnaires on self-reported symptoms and quality of life every 6 months (January 1998 to June 2005). Quality of life was measured with the Medical Outcomes Study HIV Health Survey (MOS-HIV), resulting in a physical health summary (PHS) score and a mental health summary (MHS) score. Growth curve models were conducted to investigate the course of symptoms. Random effect models were carried out to study the association with concurrent quality of life and virological response. Results: We included 391 patients, completing 2,851 questionnaires. Symptoms that increased significantly over time were numb feeling in fingers or toes (P < .01), pain in legs (P < .01), pain when urinating (P < .01), sore muscles (P = .02), tingling of hands or feet (P = .06), and difficulties with seeing (P < .01). All self-reported symptoms were related to lower levels of PHS and MHS (P < .01). Trouble with sleeping (odds ratio [OR] 1.5; 95% Cl, 1.04-2.2), constipation (OR 2.8; 95% Cl, 1.7-1.8), pain in legs (OR 1.8; 95% Cl, 1.2-2.6), and numb feeling in fingers or toes (OR 1.7; 95% Cl, 1.1-2.7) were related to concurrent virological response. Conclusion: HIV-infected patients on cART report a large range of symptoms. Management of symptoms is relevant because a number of symptoms are related to poorer quality of life and virological failure. [ABSTRACT FROM AUTHOR]

Background. Previous studies have shown that health-related quality of life (HRQL) predicts survival in patients infected with human immunodeficiency virus (HIV). However, these studies predated the highly active antiretroviral therapy (HAART) era, included only a few patients receiving HAART, or had a limited duration of follow-up. This study investigates whether HRQL predicts survival among HIV-infected patients receiving HAART. Methods. HIV-infected patients participating in the focus group of the AIDS Therapy Evaluation in the Netherlands (ATHENA) study and starting or already receiving HAART completed the Medical Outcomes Study HIV Health Survey at study entry (1 May 1998 through 31 December 2000). The physical health summary (PHS) and mental health summary (MHS) scores were calculated. All-cause mortality was established at 31 March 2008. Kaplan-Meier analysis and Cox regression models were performed to predict survival. Results. The median follow-up was 8.4 years. Sixty-six patients (11.8%) died during follow-up. We found a significant relation between quartiles of PHS and survival (P < .001, log-rank test). Of patients with a PHS, 26 (20%) died in quartile 1 (indicating worst HRQL), 17 (13%) died in quartile 2, 10 (8%) died in quartile 3, and 5 (4%) died in quartile 4 (indicating best HRQL) (P < .001). The prediction of PHS on survival was independent of other (clinical) parameters (P < .001). No relation was found between MHS and survival (P = .13). Conclusion. Patient-reported HRQL predicted survival among HIV-infected patients receiving HAART. This information could be highly useful for physicians in determining the prognosis of their patients. [ABSTRACT FROM AUTHOR]

The purpose of this study was to examine (1) changes in quality of life (QoL) within 1 year after presentation with transient loss of consciousness (TLOC) and (2) which factors are predictive of these changes. This study was part of the Fainting Assessment Study (FAST), which assessed diagnostic strategies in patients with TLOC. Adult patients presenting to Academic Medical Center, Amsterdam, The Netherlands, with TLOC were included in the study. QoL was assessed with the generic Short Form 36 and the disease-specific Syncope Functional Status Questionnaire at presentation and 1 year of follow-up. Of 468 included patients, 82% completed questionnaires at presentation and 72% after 1-year follow-up. QoL improved on 7 of 8 subscales of the Short Form 36 and on all summary scales of the Syncope Functional Status Questionnaire. Older age, recurrence, higher level of co-morbidity, and a neurologic or psychogenic diagnosis were predictive of poorer QoL. In conclusion, QoL in patients with TLOC improves significantly over time. Physicians should particularly pay attention to patients who are older, have recurrent episodes, a neurologic or psychogenic diagnosis, and a higher level of co-morbidity because these patients are vulnerable to a relatively poorer QoL. [Copyright &y& Elsevier]

Background: Personalized prediction of treatment outcomes can aid patients with cancer when deciding on treatment options. Existing prediction models for esophageal and gastric cancer, however, have mostly been developed for survival prediction after surgery (ie, when treatment has already been completed). Furthermore, prediction models for patients with metastatic cancer are scarce. The aim of this study was to develop prediction models of overall survival at diagnosis for patients with potentially curable and metastatic esophageal and gastric cancer (the SOURCE study)., Methods: Data from 13,080 patients with esophageal or gastric cancer diagnosed in 2015 through 2018 were retrieved from the prospective Netherlands Cancer Registry. Four Cox proportional hazards regression models were created for patients with potentially curable and metastatic esophageal or gastric cancer. Predictors, including treatment type, were selected using the Akaike information criterion. The models were validated with temporal cross-validation on their C-index and calibration., Results: The validated model's C-index was 0.78 for potentially curable gastric cancer and 0.80 for potentially curable esophageal cancer. For the metastatic models, the c-indices were 0.72 and 0.73 for esophageal and gastric cancer, respectively. The 95% confidence interval of the calibration intercepts and slopes contain the values 0 and 1, respectively., Conclusions: The SOURCE prediction models show fair to good c-indices and an overall good calibration. The models are the first in esophageal and gastric cancer to predict survival at diagnosis for a variety of treatments. Future research is needed to demonstrate their value for shared decision-making in clinical practice.

Background: A relationship between quality of life (QoL) and survival has been shown for several types of cancer, mostly in clinical trials with highly selected patient groups. The relationship between QoL and survival for patients with pancreatic or periampullary cancer is unclear., Methods: This study analyzed QoL data from a prospective multicenter patient-reported outcome registry in patients with pancreatic or periampullary carcinoma registered in the nationwide Netherlands Cancer Registry (2015-2018). Baseline and delta QoL, between baseline and 3-month follow-up, were assessed with the Happiness, EORTC Quality of Life Questionnaire-Core 30 (QLQ-C30), and QLQ-PAN26 questionnaires. The relationship between QoL and survival was assessed using Cox regression models, and additional prognostic value of separate items was assessed using Nagelkerke R2 (explained variance)., Results: For the baseline and delta analyses, 233 and 148 patients were available, respectively. Most were diagnosed with pancreatic adenocarcinoma (n=194; 83.3%) and had stage III disease (n=77; 33.0%), with a median overall survival of 13.6 months. Multivariate analysis using baseline scores indicated several scales to be of prognostic value for the total cohort (ie, happiness today, role functioning, diarrhea, pancreatic pain, and body image; hazard ratios all P<.05) and for patients without resection (ie, overall satisfaction with life, physical and cognitive functioning, QLQ-C30 summary score, fatigue, pain, constipation, diarrhea, and body image; hazard ratios all P<.05). Except for diarrhea, all QoL items accounted for >5% of the additional explained variance and were of added prognostic value. Multivariate analysis using delta QoL revealed that only constipation was of prognostic value for the total cohort, whereas no association with survival was found for subgroups with or without resection., Conclusions: In a multicenter cohort of patients with pancreatic or periampullary carcinoma, QoL scores predicted survival regardless of patient, tumor, and treatment characteristics. QoL scores may thus be used for shared decision-making regarding disease management and treatment choice.

Background: The objective of this study was to compare fatigue levels between subjects with and without COPD, and to investigate the relationship between fatigue, demographics, clinical features and disease severity., Methods: A total of 1290 patients with COPD [age 65 ± 9 years, 61% male, forced expiratory volume in 1 s (FEV1) 56 ± 19% predicted] and 199 subjects without COPD (age 63 ± 9 years, 51% male, FEV1 112 ± 21% predicted) were assessed for fatigue (Checklist Individual Strength-Fatigue), demographics, clinical features and disease severity., Results: Patients with COPD had a higher mean fatigue score, and a higher proportion of severe fatigue (CIS-Fatigue score 35 ± 12 versus 21 ± 11 points, p  < 0.001; 49 versus 10%, p  < 0.001). Fatigue was significantly, but poorly, associated with the degree of airflow limitation [FEV1 (% predicted) Spearman correlation coefficient = -0.08, p  = 0.006]. Multiple regression indicated that 30% of the variance in fatigue was explained by the predictor variables., Conclusions: Severe fatigue is prevalent in half of the patients with COPD, and correlates poorly with the degree of airflow limitation. Future studies are needed to better understand the physical, psychological, behavioural, and systemic factors that precipitate or perpetuate fatigue in COPD.

Purpose: Working in conditions with daily exposure to organic solvents for many years can result in a disease known as chronic solvent-induced encephalopathy (CSE). The aims for this study were to describe the neuropsychological course of CSE after first diagnosis and to detect prognostic factors for neuropsychological impairment after diagnosis., Methods: This prospective study follows a Dutch cohort of CSE patients who were first diagnosed between 2001 and 2011 and underwent a second neuropsychological assessment 1.5-2 years later. Cognitive subdomains were assessed and an overall cognitive impairment score was calculated. Paired t tests and multivariate linear regression analyses were performed to describe the neuropsychological course and to obtain prognostic factors for the neuropsychological functioning at follow-up., Results: There was a significant improvement on neuropsychological subdomains at follow-up, with effect sizes between small and medium (Cohen's d 0.27-0.54) and a significant overall improvement of neuropsychological impairment with a medium effect size (Cohen's d 0.56). Prognostic variables for more neuropsychological impairment at follow-up were a higher level of neuropsychological impairment at diagnosis and having a comorbid diagnosis of a psychiatric disorder at diagnosis., Conclusions: Results are in line with previous research on the course of CSE, stating that CSE is a non-progressive disease after cessation of exposure. However, during follow-up the percentage patients with permanent work disability pension increased from 14 to 37%. Preventive action is needed in countries where exposure to organic solvents is still high to prevent new cases of CSE.

Introduction: Fatigue is the second most common symptom in patients with chronic obstructive pulmonary disease (COPD). Despite its high prevalence, fatigue is often ignored in daily practice. For this reason, little is known about the underlying determinants of fatigue in patients with COPD. The primary objectives of this study are to chart the course of fatigue in patients with COPD, to identify the physical, systemic, psychological and behavioural factors that precipitate and perpetuate fatigue in patients with COPD, to evaluate the impact of exacerbation-related hospitalisations on fatigue and to better understand the association between fatigue and 2-year all-cause hospitalisation and mortality in patients with COPD. The secondary aim is to identify diurnal differences in fatigue by using ecological momentary assessment (EMA). This manuscript describes the protocol of the FAntasTIGUE study and gives an overview of the possible strengths, weaknesses and clinical implications., Methods and Analysis: A 2-year longitudinal, observational study, enrolling 400 patients with clinically stable COPD has been designed. Fatigue, the primary outcome, will be measured by the subjective fatigue subscale of the Checklist Individual Strength (CIS-Fatigue). The secondary outcome is the day-to-day/diurnal fatigue, registered in a subsample (n=60) by EMA. CIS-Fatigue and EMA will be evaluated at baseline, and at 4, 8 and 12 months. The precipitating and perpetuating factors of fatigue (physical, psychological, behavioural and systemic) will be assessed at baseline and at 12 months. Additional assessments will be conducted following hospitalisation due to an exacerbation of COPD that occurs between baseline and 12 months. Finally, at 18 and 24 months the participants will be followed up on their fatigue, number of exacerbations, exacerbation-related hospitalisation and survival., Ethics and Dissemination: This protocol was approved by the Medical research Ethics Committees United, Nieuwegein, the Netherlands (NL60484.100.17)., Trial Registration Number: NTR6933; Pre-results., Competing Interests: Competing interests: Professor Spruit discloses receiving personal remuneration for consultancy and/or lectures from Boehringer Ingelheim, GSK, Novartis and AstraZeneca outside the scope of this work., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Objectives: The aim of the present study was to compare parent proxy reports with that of self-reports of children with anorectal malformations (ARMs) or Hirschsprung disease (HD) and healthy siblings and thereafter was examine whether these comparisons differed between patients and their siblings., Methods: Parents (n = 98) of either children with ARM (n = 44) or HD (n = 54) and a healthy sibling (n = 98) recruited from the 6 Dutch pediatric surgical centers and from the ARM and HD patient societies were included in this cross-sectional multilevel study. Agreement between child self-reports and parent proxy reports was compared through mean differences and through (intraclass) correlations. We conducted multilevel analyses to take dependencies between assessments within families into account., Results: All of the children (children with ARM or HD and their siblings) reported more pain and symptoms than their parents reported. We also found that only children with ARM or HD reported less positive emotions than their parents. Furthermore, higher correlations were found between parent proxy reports and patient-self reports than between parent proxy reports and sibling self-reports on cognitive functioning and social interaction., Conclusions: Parents tend to overestimate the physical functioning of both their ill and healthy children, and overestimate the emotional functioning of only their children with ARM or HD. Furthermore, children with ARM or HD and parents agree more on health-related quality of life domains than healthy children and parents.

Chronic skin diseases have a negative impact on patients' health-related quality of life (HRQoL). Patient education might contribute to HRQoL improvement. We developed a web-based, educational, HRQoL intervention for patients with a chronic skin disease. We aimed to assess 1) the feasibility of implementing the intervention in routine dermatological practice and patients' daily life, and 2) the acceptance of the intervention by health care providers and patients. Additionally, we aimed to create a patient user profile. We conducted an observational pilot study at 6 dermatological centres, including 105 outpatients. Implementation in routine practice was feasible and acceptable to health care providers. However, implementation in patients' daily life was found not to be entirely feasible. Perceived relevance by patients was low, though patients rated the intervention as convenient and attractive. No univocal user profile was found. Suggestions for improvements of the intervention, e.g. tailoring and adding blended learning components, are discussed.

Background and Aims: We compared health-related quality of life (HRQL) and disability in ulcerative colitis (UC) patients in remission with anti-tumor necrosis factor agents (TNF) or after restorative proctocolectomy (RPC) with ileal pouch-anal anastomosis (IPAA)., Methods: Two patient cohorts were studied. The first group consisted of patients in remission after RPC with IPAA (surgery group). The second group consisted of patients in remission with infliximab or adalimumab (medical group). For inclusion in the surgery group the pouch had to be functional for ≥1year and patients were excluded in case of postoperative complications. In the medical group, patients had to be on maintenance therapy with anti-TNF agents for ≥1year and in clinical remission. HRQL and disability outcomes were assessed using SF-36, COREFO, WPAI:UC and EORTC questionnaires., Results: 60 patients were included, 30 patients in both groups. 58 out of 60 patients (97%) returned the completed questionnaires: 29 patients in the surgery group (median age 42 years [22-67]; 48% female) and 29 patients in the medical group (median age 45 years [19-68]; 65% female). Patient characteristics were comparable between the two groups. There were no significant differences in SF-36, WPAI:UC and EORTC questionnaires between both groups, except for the medication and stool frequency scale (COREFO questionnaire) that was significantly higher in the surgery vs. the medical group (p=0.004 and p<0.001, respectively)., Conclusion: HRQL and disability were not different among the medical and surgical group, except for stool frequency and anti-diarrhea medication use that was significantly higher in surgically treated patients., (Copyright © 2013 European Crohn's and Colitis Organisation. Published by Elsevier B.V. All rights reserved.)

Background: To determine whether healthcare resources are allocated fairly, it is helpful to have information on the quality of life (QoL) of patients with Unexplained Physical Symptoms (UPS) and on the costs associated with them, and on how these relate to corresponding data in other patient groups. As studies to date have been limited to specific patient populations with UPS, the objective of this study was to assess QoL and costs in a general sample of patients with UPS using generic measures., Methods: In a cross-sectional study, 162 patients with UPS reported on their QoL, use of healthcare resources and lost productivity in paid and unpaid work. To assess QoL, the generic SF-36 questionnaire was used, from which multidimensional quality-of-life scores and a one-dimensional score (utility) using the SF-6D scorings algorithm were derived. To assess costs, the TiC-P questionnaire was used., Results: Patients with UPS reported a poor QoL. Their QoL was mostly decreased by limitations in functioning due to physical health, and the least by limitations in functioning due to emotional problems. The median of utilities was 0.57, and the mean was 0.58 (SD = .09).The cost for the use of healthcare services was estimated to be €3,123 (SD = €2,952) per patient per year. This cost was enlarged by work-related costs: absence from work (absenteeism), lower on-the-job productivity (presenteeism), and paid substitution of domestic tasks. The resulting mean total cost was estimated to be €6,815 per patient per year., Conclusions: These findings suggest that patients with UPS have a high burden of disease and use a considerable amount of healthcare resources. In comparison with other patient groups, the QoL values of patients with UPS were among the poorest and their costs were among the highest of all patient groups. The burden for both patients and society helps to justify the allocation of sufficient resources to effective treatment for patients with UPS.

Aim: To develop a patient-based Simple Clinical Colitis Activity Index (P-SCCAI) of ulcerative colitis (UC) activity and to compare it with the clinician-based SCCAI, C-reactive protein (CRP) and Physician's Global Assessment (PGA) of UC activity. Monitoring UC activity may give patients disease control and prevent unnecessary examinations., Methods: Consecutive UC patients randomly completed the P-SCCAI either before or after consultation. Gastroenterologists assessed patients' UC activity on the same day. Overall agreement between SCCAI and P-SCCAI was calculated with Spearman's Rho and Mann-Whitney U test. Agreement regarding active disease versus remission and agreement at domain level were calculated by percent agreement and kappa (κ)., Results: 149 (response rate 84.7%) UC patients participated. P-SCCAI and SCCAI showed a large correlation (rs=0.79). The medians (IQR) of the P-SCCAI (3.78;0-15) tended to be higher than those of the SCCAI (2.86;0-13), although this difference did not reach statistical significance (z=1.71| p=0.088). In 77% of the cases the difference between clinicians' and patients' scores was not clinically different (i.e.≤2). Percentage agreement between clinicians and patients, judging UC as active or in remission, was 87%, rs=0.66, κ=0.66, indicating a substantial agreement. In general patients tended to report more physical symptoms than clinicians. C-Reactive protein (CRP) was found to have a significant association with both P-SCCAI and SCCAI (κ=0.32, κ=0.39 respectively) as was PGA (κ=0.73 for both indices)., Conclusions: The P-SCCAI is a promising tool given its substantial agreement with the SCCAI and its feasibility. Therefore, P-SCCAI can complement SCCAI in clinical care and research., (Copyright © 2012 European Crohn's and Colitis Organisation. Published by Elsevier B.V. All rights reserved.)

Background: The degree of trust in and satisfaction with the physician has been shown to have important implications for treatment outcomes. This study aims to examine individual differences in patients' trust, satisfaction and general distress from an attachment theoretical perspective., Material and Methods: One hundred and thirty recently diagnosed cancer patients of three medical hospitals were extensively interviewed by trained psychologists to assess attachment style. Patients completed standardized questionnaires three and nine months after diagnosis to assess trust, satisfaction and distress. t-tests and repeated measures ANOVAs were used to examine differences between securely and insecurely attached patients and changes over time. A mediation model based on a bootstrapping method was used to examine whether trust mediated between attachment and satisfaction, and attachment and distress., Results: Insecurely attached patients (N = 45, 35%) reported less trust in and satisfaction with their physician, and reported more general distress than securely attached patients three and nine months after diagnosis (p < 0.05). Trust and distress levels did not change over time. Trust mediated between attachment and satisfaction, but not between attachment and distress., Conclusion: Insecurely attached patients trusted their physician less than securely attached patients, and in turn were less satisfied with their physician. Their higher levels of general distress were not related to their lower levels of trust. Attachment theory provides a framework to interpret differences in patients' trust, satisfaction and distress, and may help physicians respond in such a way that their patients feel secure, which in turn is expected to result in better health outcomes.

Background: Interest in health-related quality of life (HRQoL) outcome research in dermatology is increasing, especially in the systemic treatment of psoriasis with biologic agents. In other specialties, such as oncology, the application of a HRQoL intervention is considered to be an aid for monitoring disease and treatment over time, for the communication with the patient, and for improving treatment outcome. However, in dermatology practice, the application of this intervention is relatively new. Moreover, evidence on the effectiveness of a HRQoL intervention in dermatology is missing. It is hypothesized that the application of a HRQoL intervention in dermatology practice will have a positive impact on patients' HRQoL as well as on doctor-patient communication., Methods/design: In a prospective multicenter cluster randomized controlled trial, patients diagnosed with moderate to severe psoriasis who receive biologic treatment, will be followed for 48 weeks. The study sites, and not the patients, will be randomly allocated via a computer-based randomization system to either the intervention (treatment with etanercept and standardized HRQoL assessment and communication) or the control group (treatment with etanercept alone). The HRQoL intervention will include 1) the electronic assessment of the Skindex-29, a well-studied dermatology-specific HRQoL questionnaire, and 2) the communication of the resulting Skindex-29 data with the patient. Prior to study start, dermatologists in the intervention group will be educated and trained in standardized HRQoL assessment and communication using the Skindex-29. At six consecutive visits, patients at study sites in the intervention group will be asked to complete the Skindex-29 on a desk-top pc at the clinic, just before their consultation with the dermatologist. A print-out of the completed questionnaire will be made and, guided by this print-out, feedback on the HRQoL scores will be given during the consultation. Primary outcome parameters are the impact of the HRQoL intervention on patients' HRQoL, and the effect of the HRQoL intervention on doctor-patient communication. Secondary outcomes include health status and disease severity., Trial Registration: The Netherlands National Trial Register (NTR): NTR1364.

Objectives: To compare ratings of quality of care between patients with genetic cancer who receive specialized care with patients who receive non-specialized care while controlling for socio-demographic and clinical variables;, Material and Methods: All patients in a national cohort of adult patients diagnosed with familial adenomatous polyposis (FAP) who had undergone prophylactic colorectal surgery were assessed (n = 276, response rate 76%). Quality of care was measured with the Quality of Care from the Patient Perspective (QPP). Univariate and multivariate logistic regression analyses were performed;, Results: Patients receiving specialized care were significantly more likely to report the quality of care as better in all three QPP dimensions investigated than those receiving non-specialized care;, Conclusions: In order to promote and maintain good quality of care for surgically treated patients with FAP, and to minimize the risk of cancer, specialized care, including continuity and easy access of health care professionals, should be provided.

Low levels of statin adherence may compromise treatment outcomes. The aim of this study was to investigate whether nurse-led cardiovascular risk-factor counseling could improve statin adherence and lipid levels without increasing patients' anxiety. Patients with indications for statin therapy for primary or secondary prevention of cardiovascular disease were randomly assigned to receive routine care or extended care (EC) at baseline and at months 3, 9, and 18. Patients in the EC group received a personalized risk-factor passport, showing modifiable and unmodifiable individual risk factors and a graphical presentation of their calculated absolute 10-year cardiovascular disease risk as well as the target risk that could be reached if all modifiable risk factors were optimally treated. Lipid levels were assessed at each visit. Carotid intima-media thickness was measured at baseline and at month 18. Adherence, anxiety, quality of life, symptoms, and smoking status were assessed using a self-administered questionnaire at each visit. A total of 201 patients were included in the study. Statin adherence was significantly higher (p <0.01) and anxiety was significantly lower (p <0.01) in the EC group than in the routine care group. Low-density lipoprotein cholesterol was statistically significantly lower in the EC group than in the routine group (2.66 vs 3.00 mmol/L, respectively, p = 0.024) in primary prevention patients only. Intima-media thickness improved significantly from baseline (p <0.01) in all patients, irrespective of group assignment. In conclusion, cardiovascular risk-factor counseling resulted in improved lipid profiles in primary prevention patients and higher levels of adherence to statins and lower levels of anxiety in all patients., (Copyright © 2012 Elsevier Inc. All rights reserved.)

Objective: To investigate which perioperative treatment, ie, laparoscopic or open surgery combined with fast track (FT) or standard care, is the optimal approach for patients undergoing segmental resection for colon cancer., Summary Background Data: Important developments in elective colorectal surgery are the introduction of laparoscopy and implementation of FT care, both focusing on faster recovery., Methods: In a 9-center trial, patients eligible for segmental colectomy were randomized to laparoscopic or open colectomy, and to FT or standard care, resulting in 4 treatment groups. Primary outcome was total postoperative hospital stay (THS). Secondary outcomes were postoperative hospital stay (PHS), morbidity, reoperation rate, readmission rate, in-hospital mortality, quality of life at 2 and 4 weeks, patient satisfaction and in-hospital costs. Four hundred patients were required to find a minimum difference of 1 day in hospital stay., Results: Median THS in the laparoscopic/FT group was 5 (interquar-tile range: 4-8) days; open/FT 7 (5-11) days; laparoscopic/standard 6 (4.5-9.5) days, and open/standard 7 (6-13) days (P < 0.001). Median PHS in the laparoscopic/FT group was 5 (4-7) days; open/FT 6 (4.5-10) days; laparoscopic/standard 6 (4-8.5) days and open/standard 7 (6-10.5) days (P < 0.001). Secondary outcomes did not differ significantly among the groups. Regression analysis showed that laparoscopy was the only independent predictive factor to reduce hospital stay and morbidity., Conclusions: Optimal perioperative treatment for patients requiring segmental colectomy for colon cancer is laparoscopic resection embedded in a FT program. If open surgery is applied, it is preferentially done in FT care. This study was registered under NTR222 (www.trialregister.nl).

Transition items are a popular approach to determine the clinical significance of patient-reported change. These items assume that patients (1) arrive at a change evaluation by comparing posttest and pretest functioning, and (2) accurately recall their pretest functioning. We conducted cognitive think-aloud interviews with 25 cancer patients prior to and following radiotherapy. Two researchers independently analysed their responses using an analysis scheme based on cognitive process models of Tourangeau et al. and Rapkin and Schwartz. In 112 of the 164 responses to transition items, patients compared current and prior functioning. However, in 104 of these responses, patients did not refer to their functioning at pretest and/or posttest according to transition design's first assumption, but rather used a variety of time frames. Additionally, in 79 responses, the time frame employed and/or description of prior functioning provided differed from those employed in the corresponding pretest items. Transition design's second assumption was therefore not in line with the patients' cognitive processes. Our findings demonstrate that in interpreting transition assessments, one needs to be aware that patients provide change assessments, which are not necessarily based on the cognitive processes intended by researchers and health care providers.

Objective: A first step in the delivery of tailored care is answering the following question: does health care meet the needs of patients? Therefore patients' perspective on health care use and their needs was examined. The design used was cross-sectional questionnaire study., Patients: A total of 1109 adult congenital heart defect (CHD) patients attending one of eight Dutch hospitals were randomly selected from a national database (10% of all registered patients)., Main Outcome Measures: Patient reported questionnaires on in- and outpatient health care use during the past year and need for additional care., Results: A total of 66% and 40% of patients had contact with their cardiologist and general practitioner, respectively. Six to 10 percent were hospitalized, operated upon, or visited the emergency room. For the majority, the amount of contact was sufficient. Most patients indicated that the communication skills and expertise of the cardiologist and general practitioner were sufficient, and health care improvements were not necessary. Frequent health care users had a poor functional status and frequent contact with their cardiologist and general practitioner. Patients who want more contact with their cardiologist rated the communication skills of the cardiologist as insufficient., Conclusions: For most patients, the amount and quality of care are both sufficient. Patients who rate the communication skills of the cardiologist as insufficient have need more contact. In addition to the recommended training program as described in the American College of Cardiology/American Heart Association (ACC/AHA) and European Society of Cardiology (ESC) guidelines, we recommend the incorporation of communication training. This is the first study to provide insight into health care use and needs of CHD patients in countries with a compulsory health insurance system from the patient perspective., (© 2011 Copyright the Authors. Congenital Heart Disease © 2011 Wiley Periodicals, Inc.)

Background: Self-report is the most commonly used measure of adherence to highly active antiretroviral therapy, but typically shows weaker associations with virological treatment outcome than more objective adherence assessment methods. Socially desirable responding might hamper the validity of self-reported adherence. We investigated whether stratifying patients according to their socially desirable response set might improve the prediction of virological treatment response by self-reported adherence., Methods: Patients enrolled in the focus group of the Dutch national cohort ATHENA completed a social desirability scale, four self-report adherence questions, and had their plasma HIV type-1 (HIV-1) RNA concentrations measured. We calculated odds ratios and 95% confidence intervals for self-reported non-adherence to predict HIV-1 RNA>50 copies/ml among patients with a lower or a higher tendency towards socially desirable responding., Results: A total of 331 patients were included. Self-reported non-adherence was significantly predictive of HIV-1 RNA>50 copies/ml on three out of four questions among patients with lower socially desirable responding (n=198). Self-reported non-adherence did not predict HIV-1 RNA>50 copies/ml among patients with higher socially desirable responding (n=132)., Conclusions: Stratifying patients according to their socially desirable response set improved the prediction of virological treatment response by self-reported adherence. This finding emphasizes the importance of discussing medication adherence with patients in a non-threatening and non-judgemental way that normalizes non-adherence in order to reduce socially desirable responding.

In accordance with attachment theory, the present study investigates whether internal working models of attachment mediated the association between childhood memories and satisfaction about life in adulthood. A convenient sample of 437 participants completed questionnaires assessing a broad range of childhood memories, working models of attachment and life satisfaction. After controlling for demographics, relational status and living condition, Baron and Kenny's mediation criteria were met for the association between memories about childhood, adult attachment and life satisfaction. That is, family warmth and harmony and parental support were associated with attachment security while parental rejection and adverse childhood events (e.g., abuse, parental psychopathology) were associated with an insecure attachment style. More securely attached individuals were in turn more satisfied about their current life than insecurely attached individuals. Sobel test confirmed these findings. These finding are in accordance with attachment theory and highlight the importance of this theory for understanding how early childhood experiences may impact adult life.

Background: Quality of life (QoL) is considered to be an indispensable outcome measure of curative and palliative treatment. However, QoL research often yields findings that raise questions about what QoL measurement instruments actually assess and how the scores should be interpreted., Objective: To investigate how patients interpret and respond to questions on the EORTC-QLQ-C30 over time and to find explanations to account for counterintuitive findings in QoL measurement., Methods: Qualitative investigation was made of the response behaviour of small-cell lung cancer patients (n = 23) in the measurement of QoL with the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30). Focus was on physical functioning (PF, items 1 to 5), role functioning (RF, items 6 and 7), global health and QoL rating (GH/QOL, items 29 and 30). Interviews were held at four points: at the start of the chemotherapy, 4 weeks later, at the end, and 6 weeks after the end of chemotherapy. Patients were asked to 'think aloud' when filling in the questionnaire., Results: Patients used various response strategies when answering questions about problems and limitations in functioning, which impacted the accuracy of the scale. Patients had scores suggesting they were less limited than they actually were by taking the wording of questions literally, by guessing their functioning in activities that they did not perform, and by ignoring or excluding certain activities that they could not perform., Conclusion: Terminally ill patients evaluate their functioning in terms of what they perceive to be normal under the circumstances. Their answers can be interpreted in terms of change in the appraisal process (Rapkin and Schwartz 2004; Health and Quality of Life Outcomes, 2, 14). More care should be taken in assessing the quality of a set of questions about physical and role functioning.

Objective: To determine to what extent patients who have survived abdominal sepsis suffer from symptoms of posttraumatic stress disorder (PTSD) and depression, and to identify potential risk factors for PTSD symptoms., Design and Setting: PTSD and depression symptoms were measured using the Impact of Events Scale-Revised (IES-R), the Post-Traumatic Symptom Scale 10 (PTSS-10) and the Beck Depression Inventory II (BDI-II)., Patients and Participants: A total of 135 peritonitis patients were eligible for this study, of whom 107 (80%) patients completed the questionnaire. The median APACHE-II score was 14 (range 12-16), and 89% were admitted to the ICU., Measurements and Results: The proportion of patients with "moderate" PTSD symptom scores was 28% (95% CI 20-37), whilst 10% (95% CI 6-17) of patients had "high" PTSD symptom scores. Only 5% (95% CI 2-12) of the patients expressed severe depression symptoms. Factors associated with increased PTSD symptoms in a multivariate ordinal regression model were younger age (0.74 per 10 years older, p=0.082), length of ICU stay (OR=1.4 per doubling of duration, p=0.003) and having some (OR=4.9, p=0.06) or many (OR=55.5, p<0.001) traumatic memories of the ICU or hospital stay., Conclusion: As many as 38% of patients after abdominal sepsis report elevated levels of PTSD symptoms on at least one of the questionnaires. Our nomogram may assist in identifying patients at increased risk for developing symptoms of PTSD.

Background: To compare health related quality of life (HR-QoL) in patients surgically treated for secondary peritonitis to that of a healthy population. And to prospectively identify factors associated with poorer (lower) HR-QoL., Design: A prospective cohort of secondary peritonitis patients was mailed the EQ-5D and EQ-VAS 6-months following initial laparotomy., Setting: Multicenter study in two academic and seven regional teaching hospitals., Patients: 130 of the 155 eligible patients (84%) responded to the HR-QoL questionnaires., Results: HR-QoL was significantly worse on all dimensions in peritonitis patients than in a healthy reference population. Peritonitis characteristics at initial presentation were not associated with HR-QoL at six months. A more complicated course of the disease leading to longer hospitalization times and patients with an enterostomy had a negative impact on the mobility (p = 0.02), self-care (p < 0.001) and daily activities: (p = 0.01). In a multivariate analysis for the EQ-VAS every doubling of hospital stay decreases the EQ-VAS by 3.8 points (p = 0.015). Morbidity during the six-month follow-up was not found to be predictive for the EQ-5D or EQ-VAS., Conclusion: Six months following initial surgery, patients with secondary peritonitis report more problems in HR-QoL than a healthy reference population. Unfavorable disease characteristics at initial presentation were not predictive for poorer HR-QoL, but a more complicated course of the disease was most predictive of HR-QoL at 6 months.

Background: Response shift has gained increasing attention in the measurement of health-related quality of life (QoL) as it may explain counter-intuitive findings as a result of adaptation to deteriorating health., Objective: To search for response shift type explanations to account for counter-intuitive findings in QoL measurement., Methods: Qualitative investigation of the response behaviour of small-cell lung cancer (SCLC) patients (n = 23) in the measurement of fatigue with The European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30) question 'were you tired'. Interviews were conducted at four points during 1st line chemotherapy: at the start of chemotherapy, 4 weeks later, at the end of chemotherapy, and 6 weeks later. Patients were asked to 'think aloud' when filling in the questionnaire., Results: Fifteen patients showed discrepancies between their answer to the EORTC question 'were you tired' and their level of fatigue spontaneously reported during the interview. These patients chose the response options 'not at all' or 'a little' and explained their answers in various ways. In patients with and without discrepancies, we found indications of recalibration response shift (e.g. using a different comparison standard over time) and of change in perspective (e.g. change towards a more optimistic perspective). Patients in the discrepancy group reported spontaneously how they dealt with diagnosis and treatment, i.e. by adopting protective and assertive behaviour and by fighting the stigma. They distanced themselves from the image of the stereotypical cancer patient and presented themselves as not suffering and accepting fatigue as consequence of treatment., Conclusion: In addition to response shift, this study suggests that 'self-presentation' might be an important mechanism affecting QoL measurement, particularly during phases when a new equilibrium needs to be found.

Objective: It is thought that patients fare better when they participate in treatment decision-making, and when they have more control over the amount and type of information they receive. To facilitate informed decision-making, interactive decision aids have been introduced in health care. This article describes how much, and which information patients select from an interactive decision aid on breast cancer. To explore whether the interactive system facilitates that different patients receive different information, associations between patients' characteristics and information selection are inspected., Methods: The interactive decision aid was provided to 106 patients after an initial discussion with their surgeon about their diagnosis and treatment options. Information regarding patients' age, completed education, treatment preference, psychological functioning, decision uncertainty and decision style was collected with a written, structured questionnaire. The questionnaire was completed before patients used the interactive decision aid. To create categories, a median-split procedure was employed on the scores of the continuous background variables. The information patients selected from the interactive decision aid were registered into logfiles. Associations between patients' background variables and information selection were investigated by means of univariate statistics., Results: Patients (n=97; 92%) used the interactive decision aid intensively. On average, patients spent almost 70min searching for information and selected 21 information topics. Overall, treatment related information was clearly more selected than other types of information. Age, education, and decision style factors were associated with information selection., Conclusion: The interactive breast cancer decision aid was utilized intensively. The interactive system was found to facilitate that different patients received different amounts and types of information., Practice Implications: Interactive decision aids may improve information giving to patients, and as a result, the quality of care. To safeguard informed-choice, decision aids should be used in conjunction with other communication strategies. Decision aids should be available continuously and throughout the patients' disease journey. The Internet may help to achieve broad dissemination and enduring access.

Background: For employed cancer survivors, returning to work and maintaining employment is an important aspect of their quality of life. We developed an intervention aimed at enhancing this by means of (a) providing the patient with an educational leaflet on return to work and (b) enhancing communication between attending and occupational physicians. The purpose of this study is to test the feasibility of this intervention and to examine the relation of patient adherence to the advice of the leaflet and return to work., Methods: A patient series of 35 employed cancer survivors was used to evaluate the intervention. Survivors completed a baseline questionnaire prior to their treatment. Survivors and occupational physicians were interviewed by telephone eight weeks following all curative treatment. Our measure of feasibility included satisfaction of survivors with the intervention, adherence to the advice, time to return to work, satisfaction of occupational physicians with the intervention, and perceived influence on their rehabilitation efforts., Results: Interviews of 26 survivors and 24 occupational physicians, revealed that those groups perceived the leaflet as useful (i.e., 7 on a 0-10 scale. Also seven out of ten suggestions in the leaflet was adhered to and half of the occupational physicians perceived the guidance they provided was helpful. However there was no effect of level of adherence on actual return to work., Conclusion: This pilot study demonstrated the feasibility of the approach used. However level of adherence to educational leaflet was not associated with an improvement in return to work in cancer survivors.

Objective: The objective of this study was to examine the types of healthcare services used by children, adolescents, and adults with Hirschsprung Disease (HD) in relation to the severity of the initial defect (mild, severe), whether additional care was needed, the provision of information, transfer to adult care, and satisfaction with the care provided., Methods: Three hundred twenty (71%) HD patients, ages 6 to 54, completed a questionnaire that assessed the use of healthcare services, the need for more healthcare, the provision of information, the transfer to adult care and satisfaction with the provided care., Results: In 6 months, 45% of the children, 14% of the adolescents, and 15% of the adults consulted a medical specialist. Compared with patients with a mild form of HD in the age range of 6 to 16 years, only the more severely afflicted adult patients visited medical professionals more often (10% vs 29%) (P < .05). Of the children, the adolescents, and the adults 23%, 8%, and 6% respectively consulted a nonmedical professional. Less than 15% of all patients whould have liked more treatment. In 6 months 51% of the children, 24% of the adolescents, and 21% of the adults received treatment information, of which respectively 14, 8, and 20% wished they had received more information. Three (12%) patients who needed adult care encountered problems with the transfer. Almost all patients were satisfied with the care provided., Conclusions: There is good access to medical healthcare services, especially for children. The only lacuna in the healthcare system we revealed was a lack of information, particularly for adult patients. Most parents and patients reported to be very satisfied with the provided care.

Purpose: The aim of this study was to examine changes in the quality of life of adult patients with anorectal malformations or Hirschsprung's disease over a three-year interval and to identify demographic, clinical, and psychosocial variables that explain possible quality-of-life changes. Understanding the factors that affect changes in quality of life over time is particularly important to provide adequate care., Methods: Questionnaires were administered to 261 patients (77 percent), with a three-year interval. Background characteristics, including demographic and clinical variables, and psychosocial variables (i.e., self-esteem, mastery, social support, disease cognition) were measured on one occasion. Generic and disease-specific quality of life were measured twice., Results: On average patients indicated no change in quality-of-life level after three years. However, variance in the change scores revealed individual variation, indicating the presence of patients who improved and patients who deteriorated. Patients who were female, older, have other congenital diseases, or a stoma reported poorer quality of life over time. The psychosocial variable "disease cognition" most strongly affected the change in quality of life of patients with anorectal malformations or Hirschsprung's disease., Conclusions: Our results could alert clinicians to patients who are at risk for quality-of-life deterioration and might therefore be in need for extra care. Our findings illustrate the importance of psychosocial functioning for enhancing the quality of life over time of these patients.

Objectives: The convergent validity between utility assessment methods was assessed., Methods: Investigated were patients with esophageal cancer treated surgically with curative intent. Patients were interviewed in a period from 3 to 12 months after surgical resection. Patients evaluated their actual health and seven other states. Visual analogue scale (VAS) and standard gamble (SG) utilities were obtained for the health states in an interview. Patients also indicated whether or not they preferred death to living in a health state (worse than dead [WTD] preferences)., Results: Fifty patients completed the interview. Convergent validity was excellent at the aggregate and individual level. However, the relation between VAS and SG differed strongly across individuals. On a scale from 0 (dead) to 100 (perfect health), SG scores were lower for patients with WTD preferences (mean difference d = 35; p = .002); however, VAS scores did not vary by WTD preferences., Conclusions: In general, there is good agreement between VAS and SG measures, although patients disagree about how the VAS and SG are related. The standard gamble varied by WTD preferences, however, the VAS did not.

Objectives: The first aim was to identify the types of healthcare services used by children, adolescents, and adults with anorectal malformation (ARM) in relation to the severity of their disease and to examine whether additional care was needed. The second aim was to evaluate specific areas in the healthcare system, including provided information, transfer from pediatric to adult care, and satisfaction with the provided care., Methods: Three hundred eighty-six (61%) patients with ARM, ages 6 to 52, completed a questionnaire that assessed their use of healthcare services and the need for additional services. Also, questions were asked about specific areas in the healthcare system. Clinical and sociodemographic characteristics were extracted from medical records., Results: In the preceding 6 months 50% of the children, 24% of the adolescents, and 24% of the adults consulted a medical specialist. Compared with patients with a mild form of ARM in the age range of 6 to 16 years, the more severely afflicted patients visited medical professionals more often (18% vs. 32%). Particularly, adolescents in the age range of 12 to 16 years with a severe form of the disease more often visited the pediatric surgeon than their peers with a mild form (2% vs. 16%). Twenty-three percent of the children, 7% of the adolescents, and 8% of the adults consulted a nonmedical professional. Twenty percent of the children, 13% of the adolescents, and 17% of the adults would have liked additional or more treatment of a nonmedical professional. In 6 months, 40% of the children, 24% of the adolescents, and 20% of the adults received treatment information. One third of the adult patients who were transferred to "adult" surgeons encountered transfer problems. Almost all patients were satisfied with the care provided., Conclusions: There is good access to medical healthcare services, especially for children. However, more psychosocial and paramedical care is considered necessary. As could be expected, children and adolescents with a severe form of the disease reported to have visited a medical specialist more often. Although healthcare for patients with ARM may be improved at certain points, most parents and patients were very satisfied with the care provided.

The objective is to show how structural equation modeling can be used to detect reconceptualization, reprioritization, and recalibration response shifts in quality of life data from cancer patients undergoing invasive surgery. A consecutive series of 170 newly diagnosed cancer patients, heterogeneous to cancer site, were included. Patients were administered the SF-36 and a short version of the multidimensional fatigue inventory prior to surgery, and 3 months following surgery. Indications of response shift effects were found for five SF-36 scales: reconceptualization of 'general health', reprioritization of 'social functioning', and recalibration of 'role-physical', 'bodily pain', and 'vitality'. Accounting for these response shifts, we found deteriorated physical health, deteriorated general fitness, and improved mental health. The sizes of the response shift effects on observed change were only small. Yet, accounting for the recalibration response shifts did change the estimate of true change in physical health from medium to large. The structural equation modeling approach was found to be useful in detecting response shift effects. The extent to which the procedure is guided by subjective decisions is discussed.