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1.
BMC Cancer ; 18(1): 55, 2018 01 08.
Article in English | MEDLINE | ID: mdl-29310605

ABSTRACT

BACKGROUND: Systemic treatment for advanced cancer offers uncertain and sometimes little benefit while the burden can be high. Hence, treatment decisions require Shared Decision Making (SDM). The CHOICE trial examines the separate and combined effect of oncologist training and a patient communication aid on SDM in consultations about palliative systemic treatment. METHODS: A RCT design with four parallel arms will be adopted. Patients with metastatic or irresectable cancer with a median life expectancy <12 months who meet with a medical oncologist to discuss the start or continuation of palliative systemic treatment are eligible. A total of 24 oncologists (in training) and 192 patients will be recruited. The oncologist training consists of a reader, two group sessions (3.5 h; including modelling videos and role play), a booster feedback session (1 h) and a consultation room tool. The patient communication aid consists of a home-sent question prompt list and a value clarification exercise to prepare patients for SDM in the consultation. The control condition consists of care as usual. The primary outcome is observed SDM in audio-recorded consultations. Secondary outcomes include patient and oncologist evaluation of communication and decision-making, the decision made, quality of life, potential adverse outcomes such as anxiety and hopelessness, and consultation duration. Patients fill out questionnaires at baseline (T0), before (T1) and after the consultation (T2) and at 3 and 6 months (T3 and T4). All oncologists participate in two standardized patient assessments (before-after training) prior to the start of patient inclusion. They will fill out a questionnaire before and after these assessments, as well as after each of the recorded consultations in clinical practice. DISCUSSION: The CHOICE trial will enable evidence-based choices regarding the investment in SDM interventions targeting either oncologists, patients or both in the advanced cancer setting. The trial takes into account the immediate effect of the interventions on observed communication, but also on more distal and potential adverse patient outcomes. Also, the trial provides evidence regarding the assumption that SDM about palliative cancer treatment results in less aggressive treatment and more quality of life in the final period of life. TRIAL REGISTRATION: Netherlands Trial Registry number NTR5489 (prospective; 15 Sep 2015).


Subject(s)
Decision Making , Neoplasms/epidemiology , Oncologists/education , Palliative Care/psychology , Adult , Choice Behavior , Female , Humans , Male , Middle Aged , Neoplasms/psychology , Netherlands/epidemiology , Oncologists/psychology , Patient Participation/psychology , Physician-Patient Relations , Quality of Life , Surveys and Questionnaires
2.
Patient Educ Couns ; 100(7): 1338-1344, 2017 Jul.
Article in English | MEDLINE | ID: mdl-28233585

ABSTRACT

OBJECTIVE: Cancer patients need information provision to cope with their disease. However, only 20-60% of information provided during consultations is remembered. This study aimed to investigate whether oncologists' use of trust-conveying communication, characterized by communicating competence, honesty and caring, enhances patients' memory. Moreover, we aimed to investigate if this hypothetical relationship is mediated by a reduction in psychophysiological arousal during the consultation. METHODS: An experimental design was used, allowing for conclusion about causality. Two versions of a scripted video-taped consultation were used in which the oncologist adopted either a standard or a trust-conveying communication style. 97 cancer-naive individuals acted as analogue patients and were randomly assigned to watch one of the consultations. RESULTS: Free recall, assessed 24-28h after viewing, was higher (p=0.039) in the trust-conveying condition (65.3% versus 59.5%). Recognition did not differ (p=0.502). Psychophysiological assessment during watching showed a smaller heart rate response in the trust-conveying condition (p=0.037). No mediation effect nor an effect on electrodermal activity was found. CONCLUSION: These results suggest that oncologists' use of trust-conveying communication could increase patients' free recall of information and diminish their cardiovascular response. PRACTICE IMPLICATIONS: The underlying mechanisms by which oncologists' communication influences information recall warrants further investigation.


Subject(s)
Communication , Mental Recall/physiology , Oncologists/psychology , Physician-Patient Relations , Female , Humans , Male , Middle Aged , Neoplasms , Referral and Consultation , Trust
3.
Psychooncology ; 26(4): 452-460, 2017 04.
Article in English | MEDLINE | ID: mdl-27246192

ABSTRACT

OBJECTIVE: This study aims to identify patients with oesophageal cancer's level of distress, type of problems, and wish for referral prior to treatment. To identify the clinical relevance of patients with oesophageal cancer's level of distress and type of problems, we build models to predict elevated distress, wish for referral, and overall survival. METHODS: We implemented the Distress Thermometer and Problem List in daily clinical practice. A score of ≥5 on the Distress Thermometer reflected elevated distress. We first created an initial model including predictors based on the literature. We then added predictors to the initial model to create an extended model based on the sample data. We used the 'least absolute shrinkage and selection operator' to define our final model. RESULTS: We obtained data from 187 patients (47.9%, of 390 eligible patients with oesophageal cancer) which were similar to non-respondents in their demographic and clinical characteristics. One-hundred thirteen (60%) patients reported elevated distress. The five most frequently reported problems were as follows: eating, tension, weight change, fatigue, and pain. Most patients did not have a wish for referral. Predictors for elevated distress were as follows: being female, total number of practical, emotional, and physical problems, pain, and fatigue. For referral, we identified age, the total number of emotional problems, the level of distress, and fear. The level of distress added prognostic information in a model to predict overall survival. CONCLUSIONS: Patients with oesophageal cancer report elevated distress and a myriad of problems yet do not have an explicit wish for referral prior to receiving their medical treatment plan. Copyright © 2016 John Wiley & Sons, Ltd.


Subject(s)
Esophageal Neoplasms/psychology , Fatigue/psychology , Quality of Life/psychology , Referral and Consultation , Social Support , Stress, Psychological/psychology , Adult , Aged , Cross-Sectional Studies , Esophageal Neoplasms/complications , Fatigue/etiology , Female , Humans , Male , Middle Aged , Needs Assessment , Netherlands , Stress, Psychological/etiology , Surveys and Questionnaires
4.
Patient Educ Couns ; 98(10): 1172-9, 2015 Oct.
Article in English | MEDLINE | ID: mdl-26215573

ABSTRACT

OBJECTIVE: Shared decision-making (SDM) is advocated as the model for decision-making in preference-sensitive decisions. In this paper we sketch the history of the concept of SDM, evidence on the occurrence of the steps in daily practice, and provide a clinical audience with communication strategies to support the steps involved. Finally, we discuss ways to improve the implementation of SDM. RESULTS: The plea for SDM originated almost simultaneously in medical ethics and health services research. Four steps can be distinguished: (1) the professional informs the patient that a decision is to be made and that the patient's opinion is important; (2) the professional explains the options and their pros and cons; (3) the professional and the patient discuss the patient's preferences and the professional supports the patient in deliberation; (4) the professional and patient discuss the patient's wish to make the decision, they make or defer the decision, and discuss follow-up. In practice these steps are seen to occur to a limited extent. DISCUSSION: Knowledge and awareness among both professionals and patients as well as tools and skills training are needed for SDM to become widely implemented. PRACTICE IMPLICATIONS: Professionals may use the steps and accompanying communication strategies to implement SDM.


Subject(s)
Communication , Decision Making , Patient Participation , Physician-Patient Relations , Decision Support Techniques , Delivery of Health Care , Health Services Research , Humans , Patient Preference
5.
Internist (Berl) ; 56(7): 833-7, 2015 Jul.
Article in German | MEDLINE | ID: mdl-26036656

ABSTRACT

A 61-year-old man with occlusion of the common bile duct due to metachronous metastases after surgery for adenocarcinoma of the stomach underwent a bile drainage intervention using endoscopic ultrasound (EUS). A self-expanding metal stent was inserted into the common bile duct of the liver via the esophagus. Successful drainage of the bile fluid into the duodenum was achieved for 14 months until the death of the patient. EUS interventions are becoming increasingly common. Although many questions such as the methodological details still remain, EUS interventions have the potential to become standard procedures especially in the situation of malignant stenoses of the bile or pancreatic duct.


Subject(s)
Common Bile Duct Diseases/etiology , Common Bile Duct Diseases/surgery , Drainage/methods , Endosonography/methods , Jaundice/etiology , Stomach Neoplasms/complications , Common Bile Duct Diseases/diagnostic imaging , Drainage/instrumentation , Endoscopy/methods , Humans , Jaundice/prevention & control , Male , Middle Aged , Stents , Treatment Outcome
6.
Eur J Cancer Care (Engl) ; 24(2): 213-23, 2015 Mar.
Article in English | MEDLINE | ID: mdl-25615269

ABSTRACT

This study aims to investigate the effects of illustrations in online cancer information on older cancer patients' website satisfaction (i.e. satisfaction with the attractiveness, comprehensibility and emotional support from the website) and recall of information. In an online experiment, 174 younger (<65 years) and older (≥65 years) colorectal cancer patients were randomly exposed to a webpage about transanal endoscopic microsurgery consisting of either text-only information, text with two cognitive illustrations or text with two affective illustrations. In general, adding cognitive illustrations compared with text-only information improved the satisfaction with the attractiveness of the website in both younger and older patients. For older patients in particular, cognitive illustrations facilitated recall of cancer information: whereas older patients recalled less information overall compared with younger patients (39% vs. 50%), no statistically significant differences in age on recall were observed when cognitive illustrations were added to text. Furthermore, older patients were more satisfied with the emotional support from the website than younger patients, especially when affective illustrations were present. Our results suggest that effective online cancer communication for ageing populations involves considering both cognitive and affective illustrations to enhance website satisfaction and recall of cancer information.


Subject(s)
Colorectal Neoplasms/surgery , Internet , Medical Illustration , Mental Recall , Patient Education as Topic/methods , Transanal Endoscopic Microsurgery , Adult , Aged , Comprehension , Female , Humans , Male , Middle Aged , Patient Satisfaction
7.
Br J Surg ; 101(13): 1692-701, 2014 Dec.
Article in English | MEDLINE | ID: mdl-25319127

ABSTRACT

BACKGROUND: There is no consensus among patients and healthcare professionals (HCPs) on the topics that need to be addressed after oesophageal cancer surgery. The aim of this study was to identify these topics, using a two-round Delphi survey. METHODS: In round 1, patients and HCPs (surgeons, dieticians, nurses) were invited to rate the importance of 49 topics. The proportion of panellists that considered a topic to be of low, moderate or high importance was then calculated for each of these two groups. Based on these proportions and the i.q.r., topics were categorized as: 'consensus to be included', 'consensus to be excluded' and 'no consensus'. Only topics in the first category were included in the second round. In round 2, panellists were provided with individual and group feedback. To be included in the final list, topics had to meet criteria for consensus and stability. RESULTS: There were 108 patients and 77 HCPs in the round 2 analyses. In general, patients and HCPs considered the same topics important. The final list included 23 topics and revealed that it was most important to address: cancer removed/lymph nodes, the new oesophagus, eating and drinking, surgery, alarming new complaints and the recovery period. CONCLUSION: The study provides surgeons with a list of topics selected by patients and HCPs that may be addressed systematically at the initial follow-up consultation after oesophageal cancer surgery.


Subject(s)
Esophageal Neoplasms/surgery , Adult , Aged , Consensus , Delphi Technique , Female , Follow-Up Studies , Humans , Male , Middle Aged , Patient Satisfaction , Quality of Life , Young Adult
8.
Eur J Vasc Endovasc Surg ; 48(3): 276-83, 2014 Sep.
Article in English | MEDLINE | ID: mdl-24913683

ABSTRACT

OBJECTIVE: Abdominal aortic aneurysm patients tend to be informed inconsistently and incompletely about their disorder and the treatment options open to them. The objective of this trial was to evaluate whether these patients are better informed and experience less decisional conflict regarding their treatment options after viewing a decision aid. DESIGN: A six-centre, randomised clinical trial comparing a decision aid plus regular information versus regular information from the surgeon. METHODS: Included patients had recently been diagnosed with an asymptomatic abdominal aortic aneurysm at least 4 cm in diameter. The decision aid consisted of a one-time viewing of an interactive CD-ROM elaborating on elective surgery versus watchful waiting. Generally, the decision aid advised patients with aneurysms less than 5.5 cm to agree to watchful waiting, for larger aneurysms the decision aid provided insight into the balance of benefit and harm of surgical and conservative approaches, taking into account age, co-morbidity and size of the aneurysm. The primary outcome was patient decisional conflict measured at 1 month follow-up (Decisional Conflict Scale). Secondary outcomes were patient knowledge, anxiety and satisfaction. RESULTS: In 178 aneurysm patients, decisional conflict scores did not differ significantly between the decision aid and the regular information groups (22 vs. 24 on the 0-100 Decisional Conflict Scale; p = .33). Patients in the decision aid group had significantly better knowledge (10.0 vs. 9.4 out of 13 points; p = .04), whereas anxiety levels (4.4 and 5.0 on a 0-21 scale; p = .73) and satisfaction scores (74 and 73 on a 0-100 scale; p = .81) were similar in both groups. CONCLUSION: In addition to regular patient-surgeon communication, a decision aid helps to share treatment decisions with abdominal aortic aneurysm patients by increasing their knowledge about the disorder and available treatment options without raising anxiety levels; however, it does not reduce decisional conflict, nor does it improve satisfaction.


Subject(s)
Aortic Aneurysm, Abdominal/therapy , Decision Support Techniques , Patient Education as Topic , Aged , Aortic Aneurysm, Abdominal/mortality , Aortic Aneurysm, Abdominal/pathology , CD-ROM , Elective Surgical Procedures , Female , Humans , Male , Patient Participation , Patient Satisfaction , Quality of Life , Surveys and Questionnaires , Watchful Waiting
10.
J Clin Oncol ; 32(3): 238-50, 2014 Jan 20.
Article in English | MEDLINE | ID: mdl-24344212

ABSTRACT

BACKGROUND: It is a challenge for oncologists to distinguish patients with breast cancer who can forego adjuvant systemic treatment without negatively affecting survival from those who cannot. Risk prediction models (RPMs) have been developed for this purpose. Oncologists seem to have embraced RPMs (particularly Adjuvant!) in clinical practice and often use them to communicate prognosis to patients. We performed a systematic review of published RPMs and provide an overview of the prognosticators incorporated and reported clinical validity. Subsequently, we selected the RPMs that are currently used in the clinic for a more in-depth assessment of clinical validity. Finally, we assessed lay comprehensibility of the reports generated by RPMs. METHODS: Pubmed, EMBASE, and Web of Science were searched. Two reviewers independently selected relevant articles and extracted data. Agreement on article selection and data extraction was achieved in consensus meetings. RESULTS: We identified RPMs based on clinical prognosticators (N = 6) and biomolecular features (N = 14). Generally predictions from RPMs seem to be accurate, except for patients ≤ 50 years or ≥ 75 years at diagnosis, in addition to Asian populations. RPM reports contain much medical jargon or technical details, which are seldom explained in lay terms. CONCLUSION: The accuracy of RPMs' prognostic estimates is suboptimal in some patient subgroups. This urgently needs to be addressed. In their current format, RPM reports are not conducive to patient comprehension. Communicating survival probabilities using RPM might seem straightforward, but it is fraught with difficulties. If not done properly, it can backfire and confuse patients. Evidence to guide best communication practice is needed.


Subject(s)
Antineoplastic Agents/therapeutic use , Breast Neoplasms/mortality , Breast Neoplasms/pathology , Neoplasm Recurrence, Local/mortality , Neoplasm Recurrence, Local/prevention & control , Truth Disclosure , Breast Neoplasms/drug therapy , Chemotherapy, Adjuvant , Female , Health Policy , Health Services Misuse/prevention & control , Humans , Models, Statistical , Neoplasm Staging , Predictive Value of Tests , Prognosis , Quality of Life , Risk Assessment , Risk Factors , Uncertainty
11.
Qual Life Res ; 23(4): 1097-115, 2014 May.
Article in English | MEDLINE | ID: mdl-24129668

ABSTRACT

PURPOSE: The purpose of the study is to (1) estimate the direction, clinical relevance, and duration of health-related quality of life (HRQL) change in the first year following esophageal cancer surgery and (2) to assess the robustness of the estimates by subgroup and sensitivity analyses, and an exploration of publication bias. METHODS: A systematic literature search in MEDLINE, EMBASE, CINAHL, PsychINFO, and CENTRAL to identify randomized and non-randomized studies was performed. We compared the baseline HRQL data with 3-, 6-, 9-, or 12-month follow-ups to estimate the magnitude and duration of HRQL change. These estimates were then classified as trivial, small, medium, or large. Primary outcomes were role functioning, eating, and fatigue. Secondary outcomes were physical and social functioning, dysphagia, pain, and coughing problems. We conducted subgroup analysis for open surgery, open surgery preceded by neo-adjuvant therapy, and minimally invasive surgery. Sensitivity analyses assessed the influence of study design, transformation/imputation of the data, and HRQL questionnaire used. RESULTS: We included data from 15 studies to estimate the change in 28 HRQL outcomes after esophageal cancer surgery. The main analysis showed that patients' social functioning deteriorated. Symptoms of fatigue, pain, and coughing problems increased. These changes lasted for 9-12 months, although some symptoms persisted beyond the first year after surgery. For many other HRQL outcomes, estimates were only robust after subgroup or sensitivity analyses (e.g., role and physical functioning), or remained too heterogeneous to interpret (e.g., eating and dysphagia). CONCLUSIONS: Patients will experience a clinically relevant and long-lasting deterioration in HRQL after esophageal cancer surgery. However, for many HRQL outcomes, more and better quality evidence is needed.


Subject(s)
Esophageal Neoplasms/psychology , Esophageal Neoplasms/surgery , Health Status , Quality of Life/psychology , Survivors/psychology , Combined Modality Therapy , Esophagectomy , Fatigue/etiology , Fatigue/psychology , Humans , Patient Outcome Assessment , Surveys and Questionnaires , Time Factors
12.
Qual Life Res ; 23(4): 1155-76, 2014 May.
Article in English | MEDLINE | ID: mdl-24293086

ABSTRACT

PURPOSE: The purpose of the study is to (1) estimate the direction, clinical relevance, and duration of health-related quality-of-life (HRQL) change in the first year following esophageal cancer surgery and (2) to assess the robustness of the estimates by subgroup and sensitivity analyses, and an exploration of publication bias. METHODS: A systematic literature search in MEDLINE, EMBASE, CINAHL, PsychINFO, and CENTRAL to identify randomized and non-randomized studies was performed. We compared the baseline HRQL data with 3-, 6-, 9-, or 12-month follow-ups to estimate the magnitude and duration of HRQL change. These estimates were then classified as trivial, small, medium, or large. Primary outcomes were role functioning, eating, and fatigue. Secondary outcomes were physical and social functioning, dysphagia, pain, and coughing problems. We conducted subgroup analysis for open surgery, open surgery preceded by neoadjuvant therapy, and minimally invasive surgery. Sensitivity analyses assessed the influence of study design, transformation/imputation of the data, and HRQL questionnaire used. RESULTS: We included the data from 15 studies to estimate the change in 28 HRQL outcomes after esophageal cancer surgery. The main analysis showed that patients' social functioning deteriorated. Symptoms of fatigue, pain, and coughing problems increased. These changes lasted for 9-12 months, although some symptoms persisted beyond the first year after surgery. For many other HRQL outcomes, estimates were only robust after subgroup or sensitivity analyses (e.g., role and physical functioning), or remained too heterogeneous to interpret (e.g., eating and dysphagia). CONCLUSIONS: Patients will experience a clinically relevant and long-lasting deterioration in HRQL after esophageal cancer surgery. However, for many HRQL outcomes, more and better quality evidence is needed.


Subject(s)
Esophageal Neoplasms/psychology , Esophageal Neoplasms/surgery , Health Status , Quality of Life/psychology , Survivors/psychology , Combined Modality Therapy , Esophagectomy , Fatigue/etiology , Fatigue/psychology , Humans , Patient Outcome Assessment , Surveys and Questionnaires , Time Factors
13.
Neth J Med ; 70(5): 242-8, 2012 Jun.
Article in English | MEDLINE | ID: mdl-22744929

ABSTRACT

BACKGROUND: The release of the report 'To err is human' put medical safety and the disclosure of errors to the forefront of the health care agenda. Disclosure of medical errors by physicians is vital in this process. We studied the role of background and social psychological factors in internists' willingness to report medical errors. METHODS: Survey among a random sample of internists from five teaching hospitals in the Netherlands, all internists and internists in training at the Departments of Internal Medicine of the participating hospitals. RESULTS: Questionnaires were received from 115 participants (response 51%). The willingness to disclose was related to the severity of the error, with the majority of near misses not reported to the head of department or the hospital error committees. Errors were more often reported to colleagues. Positive factors in favour of disclosing were reported more often than negative ones prohibiting disclosure. Motivation, behavioural control and social barriers were related to the disclosure of errors. CONCLUSION: Personal and social issues contributing to the will and addressed properly to stimulate disclosure. The creation of an atmosphere where disclosing errors is routine seems vital. In addition, it is essential to create a departmental culture where medical errors are discussed in a non-judgmental, safe environment. In order to improve reporting of medical errors, more emphasis should be placed on the individual barriers that preclude adequate reporting.


Subject(s)
Attitude of Health Personnel , Internal Medicine/standards , Medical Errors/statistics & numerical data , Practice Patterns, Physicians'/statistics & numerical data , Truth Disclosure , Adult , Female , Humans , Male , Medical Errors/ethics , Medical Staff, Hospital/ethics , Medical Staff, Hospital/statistics & numerical data , Netherlands , Practice Patterns, Physicians'/ethics , Quality Assurance, Health Care/statistics & numerical data , Surveys and Questionnaires
14.
Breast Cancer Res Treat ; 134(1): 267-76, 2012 Jul.
Article in English | MEDLINE | ID: mdl-22453754

ABSTRACT

Tamoxifen and aromatase inhibitors are associated with side effects which can significantly impact quality of life (QoL). We assessed QoL in the Tamoxifen Exemestane Adjuvant Multinational (TEAM) Trial and compared these data with reported adverse events in the main database. 2,754 Dutch postmenopausal early breast cancer patients were randomized between 5 years of exemestane, or tamoxifen (2.5-3 years) followed by exemestane (2.5-2 years). 742 patients were invited to participate in the QoL side study and complete questionnaires at 1 (T1) and 2 (T2) years after start of endocrine treatment. Questionnaires comprised the EORTC QLQ-C30 and BR23 questionnaires, supplemented with FACT-ES questions. 543 patients completed questionnaires at T1 and 454 patients (84%) at T2. Overall QoL and most functioning scales improved over time. The only clinically relevant and statistically significant difference between treatment types concerned insomnia; exemestane-treated patients reported more insomnia than tamoxifen-treated patients. Discrepancy was observed between QoL issue scores reported by the patients and adverse events reported by physicians. Certain QoL issues are treatment- and/or time-specific and deserve attention by health care providers. There is a need for careful inquiry into QoL issues by those prescribing endocrine treatment to optimize QoL and treatment adherence.


Subject(s)
Antineoplastic Combined Chemotherapy Protocols/adverse effects , Breast Neoplasms/drug therapy , Carcinoma, Ductal, Breast/drug therapy , Postmenopause , Aged , Androstadienes/administration & dosage , Antineoplastic Combined Chemotherapy Protocols/therapeutic use , Chemotherapy, Adjuvant , Female , Humans , Middle Aged , Quality of Life , Surveys and Questionnaires , Tamoxifen/administration & dosage
15.
Support Care Cancer ; 20(8): 1787-95, 2012 Aug.
Article in English | MEDLINE | ID: mdl-21947560

ABSTRACT

PURPOSE: The aim of this study was to develop and validate the Trust in Oncologist Scale (TiOS), which aims to measure cancer patients' trust in their oncologist. Structure, reliability and validity were examined. METHODS: Construction of the TiOS was based on a multidimensional theoretical framework. Cancer patients were surveyed within a week after their consultation. Trust, satisfaction, trust in health care, self-reported health and background variables were assessed. Dimensionality, internal consistency, test-retest reliability and construct validity were investigated. RESULTS: Data of 423 patients were included (response rate = 65%). After item reduction, the TiOS included 18 items. Trust scores were high. Exploratory factor analysis suggested one-dimensionality. Confirmatory factor analysis nevertheless indicated a reasonable fit of our four-dimensional theoretical model, distinguishing competence, fidelity, honesty and caring. Internal consistency and test-retest reliabilities were high. Good construct validity was indicated by moderate correlations of trust (TiOS) with satisfaction, trust in health care, willingness to recommend and number of consultations with the oncologist. Exploratory analyses suggested significant correlations of trust with ethnicity and age. CONCLUSIONS: The TiOS reliably and validly assesses cancer patients' trust in their oncologist. The questionnaire can be employed in both clinical practice and future research of cancer patients' trust.


Subject(s)
Medical Oncology , Physician-Patient Relations , Surveys and Questionnaires , Trust , Adult , Aged , Aged, 80 and over , Chi-Square Distribution , Female , Humans , Male , Middle Aged , Netherlands , Patient Satisfaction , Psychometrics , Reproducibility of Results
16.
Z Gastroenterol ; 49(12): 1535-42, 2011 Jul.
Article in German | MEDLINE | ID: mdl-22139877

ABSTRACT

Urea cycle defects belong to the most common metabolic disorders with a cumulative incidence of 1:8000. A common trait of urea cycle defects is a disturbed detoxification of ammonia leading to hyperammonemia in the event of a high nitrogen load. Most patients develop symptoms in the neonatal period or in infancy, e. g. vomiting, seizures and disturbed consciousness. Depending on the affected enzyme and its residual activity, patients differ in the age at first presentation, the character and severity of symptoms and in the susceptibility to metabolic derangement. The presence of hyperammonemia and an altered plasma amino acid profile give the essential diagnostic clues. Since modern therapeutic measures have prolonged the life expectancy of these patients and provided the possibility of a first presentation in adulthood, patients with urea cycle defects have become an increasing challenge in internal medicine. The reported case series illustrates the heterogeneous clinical course of these disorders from childhood to adulthood.


Subject(s)
Urea Cycle Disorders, Inborn/diagnosis , Urea Cycle Disorders, Inborn/therapy , Adult , Female , Humans , Male , Middle Aged , Young Adult
17.
Eur J Med Res ; 16(11): 491-4, 2011 Nov 10.
Article in English | MEDLINE | ID: mdl-22027642

ABSTRACT

Pyoderma gangrenosum is a non-infectious neutro?philic skin disease commonly associated with underlying systemic diseases. Histopathological and laboratory diagnostics are unspecific in the majority of the cases and the diagnosis is made in accordance with the clinical picture. Here, we report the case of a 69-year old man with progredient pyoderma gangrenosum-like ulcerations under treatment with sunitinib due to hepatocellular carcinoma. A conventional ulcer therapy did not lead to a regression of the lesions. Solely cessation of sunitinib therapy resulted in an improvement of the ulcerations. Sunitinib is a multikinase inhibitor that targets the PDGF-α- and ?ß-, VEGF-1-3-, KIT-, FLT3-, CSF-1- and RET-receptor, thereby impairing tumour proliferation, pathological angiogenesis and metastasation. Here, we demonstrate that pyoderma gangrenosum-like ulcers may represent a serious side effect of sunitinib-based anti-cancer treatment.


Subject(s)
Antineoplastic Agents/adverse effects , Indoles/adverse effects , Pyoderma Gangrenosum/chemically induced , Pyoderma Gangrenosum/complications , Pyrroles/adverse effects , Ulcer/chemically induced , Ulcer/complications , Aged , Erythema/chemically induced , Erythema/complications , Humans , Hyperpigmentation/chemically induced , Hyperpigmentation/complications , Hypopigmentation/chemically induced , Hypopigmentation/complications , Male , Negative-Pressure Wound Therapy , Pyoderma Gangrenosum/therapy , Sunitinib , Ulcer/therapy
18.
Qual Saf Health Care ; 19(5): e24, 2010 Oct.
Article in English | MEDLINE | ID: mdl-20577001

ABSTRACT

BACKGROUND: Patient satisfaction is one of the relevant indicators of quality of care; however, measuring patient satisfaction had been criticised. A major criticism is that many instruments are not reliable and/or valid. The instruments should have enough discriminative power for benchmarking of the results. OBJECTIVE: To develop a "core questionnaire for the assessment of patient satisfaction in academic hospitals" (COPS) that is reliable and appropriate for benchmarking patient satisfaction results. RESEARCH DESIGN: The development of COPS, the testing of its psychometric quality and its use in eight Dutch academic hospitals in three national comparative studies in 2003, 2005 and 2007 are described in this study. Results were reported only if they were significant (p<0.05) and relevant (also Cohen d>0.2). RESULTS: The questionnaire was returned in 2003 by 40,678 patients (77,450 sent, 53%) and by 40,248 patients (75,423 sent, 53%) in 2005. In 2007, the questionnaire was returned by 45,834 patients (87,137, 53%). The six dimensions have good Cronbach α's, varying from 0.79 to 0.88.The results of every item were reported to the individual hospital. A benchmark overview showed the overall comparison of all specialties of the eight hospitals for the clinic and outpatient departments. The 2007 measurement showed relevant differences in satisfaction on two dimensions in the clinical setting. CONCLUSIONS: COPS is shown to be a feasible and reliable instrument to measure the satisfaction of patients in Dutch academic hospitals. It allows comparison of hospitals and gives benchmark information on a hospital as well as data on specialty levels and previous measurements, including best practices.


Subject(s)
Academic Medical Centers , Patient Satisfaction , Surveys and Questionnaires , Female , Humans , Male , Middle Aged , Netherlands , Psychometrics/instrumentation
19.
Ann Oncol ; 21(10): 2094-2101, 2010 Oct.
Article in English | MEDLINE | ID: mdl-20357033

ABSTRACT

BACKGROUND: We prospectively examined the association between physical activity, body weight and quality of life in Dutch postmenopausal early breast cancer patients treated with adjuvant endocrine therapy. PATIENTS AND METHODS: In this side study of a large clinical trial, lifestyle and quality-of-life questionnaires were filled out 1 and 2 years after the start of endocrine therapy (T1 and T2, respectively) and included a pre-diagnosis lifestyle assessment (T0). A total of 435 breast cancer patients returned both questionnaires. RESULTS: Individuals with a physical activity level above the median who maintained this level from T0 to T1 reported the best global quality of life and physical functioning and the least fatigue at T2, as compared with individuals with low levels of physical activity which further decreased after diagnosis (difference of +16, +14, and -22 points on a 0-100 quality-of-life scale, respectively; P < 0.01). Overweight or obese women who gained body weight after diagnosis reported worst quality of life and most fatigue as compared with women who maintained a stable body weight (difference of -8, -10 and +2 points, respectively; P < 0.01). CONCLUSION: Maintaining high pre-diagnosis physical activity levels and a healthy body weight is associated with better quality of life after breast cancer.


Subject(s)
Body Weight , Breast Neoplasms/physiopathology , Exercise/physiology , Postmenopause , Quality of Life , Activities of Daily Living , Aged , Breast Neoplasms/therapy , Fatigue , Female , Humans , International Agencies , Life Style , Middle Aged , Neoplasm Staging , Overweight , Prognosis , Prospective Studies , Risk Factors , Survival Rate
20.
Eur J Vasc Endovasc Surg ; 39(6): 708-13, 2010 Jun.
Article in English | MEDLINE | ID: mdl-20347601

ABSTRACT

OBJECTIVES: To explore what kind of information surgeons communicate with patients diagnosed with an abdominal aortic aneurysm, and if the information provided regarding the disorder and treatment options available complies with legal requirements. METHODS: Dutch vascular surgeons sound-recorded consultations with their patients. Recordings were scored using a checklist based on ethical considerations and five statutory categories of information on: (1) the disorder, (2) procedure and aim of surgery, (3) consequences and risks of surgery, (4) watchful observation and (5) individual prognosis regarding state of health. Each category was represented by several information items, which were scored dichotomously ('not mentioned' or 'mentioned'). A category was considered sufficiently addressed if at least one of its items was mentioned. RESULTS: Thirty-five consultations were recorded (13 patients with aneurysmal diameter <5.5 cm and 22 with diameter >or=5.5 cm). In a minority of recordings, all five categories were addressed: 1/13 (8%) and 9/22 (41%), respectively. None of the information items was discussed consistently in every recording. Although most patients were informed about the proposed treatment option (11/13; 85% and 19/22; 86%), the alternative treatment option was mentioned only occasionally (4/13; 31% and 14/22; 64%). CONCLUSIONS: Patients with an abdominal aneurysm are informed inconsistently about their disorder and treatment options. Information is often less than that legally required. This may hinder shared decision making.


Subject(s)
Aortic Aneurysm, Abdominal/surgery , Communication , Decision Making , Informed Consent , Patient Participation , Physician-Patient Relations , Referral and Consultation , Aged , Aortic Aneurysm, Abdominal/diagnosis , Decision Support Techniques , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Netherlands , Prospective Studies
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