A A Kaptein

Leiden University Medical Centre, Leyden, South Holland, Netherlands

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Publications (142)304.97 Total impact

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    ABSTRACT: Background Despite evidence that the blood-saving measures (BSMs) erythropoietin (EPO) and intra- and postoperative blood salvage are not (cost-)effective in primary elective total hip and knee arthroplasties, they are used frequently in Dutch hospitals. This study aims to assess the impact of barriers associated with the intention of physicians to stop BSMs.Study Design and MethodsA survey among 400 orthopedic surgeons and 400 anesthesiologists within the Netherlands was performed. Multivariate logistic regression was used to identify barriers associated with intention to stop BSMs.ResultsA total of 153 (40%) orthopedic surgeons and 100 (27%) anesthesiologists responded. Of all responders 67% used EPO, perioperative blood salvage, or a combination. After reading the evidence on non–cost-effective BSMs, 50% of respondents intended to stop EPO and 53% to stop perioperative blood salvage. In general, barriers perceived most frequently were lack of attention for blood management (90% of respondents), department priority to prevent transfusions (88%), and patient characteristics such as comorbidity (81%). Barriers significantly associated with intention to stop EPO were lack of interest to save money and the impact of other involved parties. Barriers significantly associated with intention to stop perioperative blood salvage were concerns about patient safety, lack of alternatives, losing experience with the technique, and lack of interest to save money.Conclusion Physicians experience barriers to stop using BSMs, related to their own technical skills, patient safety, current blood management policy, and lack of interest to save money. These barriers should be targeted in strategies to make BSM use cost-effective.
    Transfusion 06/2014; · 3.53 Impact Factor
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    ABSTRACT: A high prevalence of psychological morbidity and maladaptive personality as well as impaired quality of life (QoL) is observed in patients with and without hydrocortisone dependency following (cured) Cushing's syndrome. However, it is currently unclear whether a similar pattern is present in patients with chronic glucocorticoid replacement for primary adrenal insufficiency (PAI). To evaluate psychological functioning, personality traits, and QoL in patients with PAI. A cross-sectional study including 54 patients with stable treatment for PAI and 54 healthy matched controls. Both patients and controls completed questionnaires on psychological functioning (Apathy Scale, Irritability Scale, Mood and Anxiety Symptoms Questionnaire short-form, and Hospital Anxiety and Depression Scale), personality traits (Dimensional Assessment of Personality Pathology short-form), and QoL (Multidimensional Fatigue Inventory, Short-Form 36, EuroQoL-5D, Nottingham Health Profile, and Physical Symptom Checklist). Patients with PAI suffered from more psychological morbidity (i.e. irritability and somatic arousal) and QoL impairments compared with controls (all P<0.01). There were no differences regarding maladaptive personality traits between patients and controls. However, there was a strong and consistent positive association between the daily hydrocortisone dose and prevalence of maladaptive personality traits (i.e. identity problems, cognitive distortion, compulsivity, restricted expression, callousness, oppositionality, rejection, conduct problems, social avoidance, narcissism, and insecure attachment, all P<0.05). There was also a strong relation between the mean daily hydrocortisone dose and both psychological morbidity (i.e. depression, P<0.05) and QoL impairments (i.e. general health perception, several measures of physical functioning, and vitality, all P<0.05). Patients with stable glucocorticoid replacement therapy for PAI report psychological morbidity and impaired QoL. Psychological morbidity, impaired QoL, and maladaptive personality traits were all associated with higher hydrocortisone dosages.
    European Journal of Endocrinology 05/2014; · 3.14 Impact Factor
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    ABSTRACT: ABSTRACT The intercorrelations among the 15 scales of the EORTC QLQ-C30 quality of life questionnaire suggest that one may combine (a) the physical functioning and role functioning scales, (b) the emotional functioning and cognitive functioning scales, and (c) the nine symptom scales. Together with the global health/quality of life scale and the social functioning scale, five measures remain. Principal component analysis of those five measures, using data from Japanese and Dutch breast and lung cancer patients, yielded two dimensions: 1. generalized health related quality of life, and 2. health-independent psychological well-being. The correlations of these dimensions with the Brief Illness Perception Questionnaire and Karnofsky performance substantiated this interpretation.
    Journal of Psychosocial Oncology 05/2014; · 1.04 Impact Factor
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    ABSTRACT: Despite evidence that erythropoietin and intra- and postoperative blood salvage are expensive techniques considered to be non-cost-effective in primary elective total hip and knee arthroplasties in the Netherlands, Dutch medical professionals use them frequently to prevent the need for allogeneic transfusion. To actually change physicians' practice, a tailored strategy aimed at barriers that hinder physicians in abandoning the use of erythropoietin and perioperative blood salvage was systematically developed. The study aims to examine the effectiveness, feasibility and costs of this tailored de-implementation strategy compared to a control strategy. A cluster randomized controlled trial including an effect, process and economic evaluation will be conducted in a minimum of 20 Dutch hospitals. Randomisation takes place at hospital level. The hospitals in the intervention group will receive a tailored de-implementation strategy that consists of four components: interactive education, feedback in educational outreach visits, electronically sent reports on hospital performance (all aimed at orthopedic surgeons), and information letters or emails aimed at other involved professionals within the intervention hospital (transfusion committee, OR-personnel, pharmacists). The hospitals in the control group will receive a control strategy (i.e., passive dissemination of available evidence). Outcomes will be measured at patient level, using retrospective medical record review. This will be done in all hospitals at baseline and after completion of the intervention period. The primary outcome of the effect evaluation is the percentage of patients undergoing primary elective total hip or knee arthroplasty in which erythropoietin or perioperative blood salvage is applied. The actual exposure to the tailored strategy and users' experiences will be assessed in the process evaluation. In the economic evaluation, the costs of the tailored strategy and the control strategy in relation to the difference in their effectiveness will be compared. This study will show whether a systematically developed tailored strategy is more effective for de-implementation of non-cost-effective blood saving measures than the control strategy. This knowledge can be used in national and international initiatives to make healthcare more efficient. It also provides more generalized knowledge regarding de-implementation strategies.Trial registration: This trial is registered at the Dutch Trial Register NTR4044.
    Implementation Science 04/2014; 9(1):48. · 2.37 Impact Factor
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    ABSTRACT: Patients treated for pituitary adenomas generally report a reduced quality of life (QoL). At present, the patient's perspective of QoL has not been fully addressed and this, and further insight in potential determinants of QoL in pituitary diseases is required to design strategies to improve QoL. We aimed to define patients' perceived QoL and to identify potential factors they perceive to contribute to QoL. We conducted four independent focus groups of six patients each, per specific pituitary disease (Cushing's disease, Non-functioning pituitary macroadenoma, acromegaly, prolactinoma). In two sessions these focus groups discussed aspects of QoL. Verbatim transcripts were analyzed using a grounded theory approach. The issues raised by the patient groups were compatible with statements and items of available QoL questionnaires. In addition, other QoL aspects emerged, such as visual limitations (physical problems); issues with a desire to have children/family planning, fear of collapsing, fear of recurrence, panic, persisting thoughts, problems with an altered personality, anger, jealousy, sadness, frustration (psychological problems); and difficulties communicating about the disease, lack of sympathy and understanding by others, and a reduced social network (social problems). Next, this study uncovered factors which might contribute to a decreased QoL (e.g. less effective coping strategies, negative illness perceptions, negative beliefs about medicines, unmet needs regarding care). This focus group study demonstrated that important disease-specific aspects of QoL are neglected in current pituitary disease-specific questionnaires and elucidated potential factors that contribute to a decreased QoL. Information provided in this study can (and will) be used for developing additional items for disease-specific QoL questionnaires and for the development of a self-management intervention aiming to improve QoL in patients treated for pituitary diseases.
    Pituitary 03/2014; · 2.67 Impact Factor
  • The lancet. Respiratory medicine. 12/2013; 1(10):769-70.
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    ABSTRACT: Targeted therapies such as epidermal growth factor receptor inhibitors, multi-targeted tyrosine kinase inhibitors and mammalian target of rapamycin (mTOR) inhibitors have, to a greater or lesser extent, mucocutaneous adverse events (mcAEs) in common. Papulopustular rash, hand-foot skin reaction, and stomatitis are the most serious adverse events. At present, evidence of the effectiveness of the management options for mcAEs is lacking, and the effect of the mcAEs on health related quality of life (HRQoL) and adherence remains poorly understood. The aesthetic discomfort, which is frequently associated with itching or painful skin or nails, can lead to a decreased HRQoL and to dose reduction or discontinuation of anticancer treatment. As up till now the number of controlled studies from which evidence based advice for these mcAEs can be formulated, is very limited, we established 2 clinical studies. The first clinical trial is the BeCet trial. This is a phase III randomized double-blind trial of dexpanthenol (Bepanthen®) cream versus cetomacrogol cream in the prevention of papulopustular eruption in patients receiving EGFRIs (NCT01136005). The second clinical trial is the COMTT trial, a phase III randomized double-blind cross-over trial of supersaturated calcium-phosphate rinse (Caphosol®) versus NaCl 0.9% in the relief of oral complaints in patients receiving targeted therapy (NCT01265810).
    Nederlands Tijdschrift voor Oncologie. 12/2013; 10(8):343-347.
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    ABSTRACT: Although quality of life (QoL) is recognized as an important indicator of the course of a disease, it has rarely been addressed in studies evaluating the outcome of care for patients with pulmonary embolism (PE). This study primarily aimed to evaluate the QoL of patients with acute PE in comparison to population norms and to patients with other cardiopulmonary diseases, using a generic QoL questionnaire. Secondary, the impact of time period from diagnosis and clinical patient characteristics on QoL was assessed, using a disease-specific questionnaire. QoL was assessed in 109 consecutive out-patients with a history of objectively confirmed acute PE (mean age 60.4±15.0years, 56 females), using the generic Short Form-36 (SF-36) and the disease specific Pulmonary Embolism Quality of Life questionnaire (PEmb-QoL). The score of the SF-36 were compared with scores of the general Dutch population and reference populations with chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), a history of acute myocardial infarction (AMI), derived from the literature. Scores on the SF-35 and PEmb-QoL were used to evaluate QoL in the short-term and long-term clinical course of patients with acute PE. In addition, we examined correlations between PEmb-QoL scores and clinical patient characteristics. Compared to scores of the general Dutch population, scores of PE patients were worse on several subscales of the SF-36 (social functioning, role emotional, general health (P<0.001), role physical and vitality (P<0.05)). Compared to patients with COPD and CHF, patients with PE scored higher (=better) on all subscales of the SF-36 (P≤0.004) and had scores comparable with patients with AMI the previous year. Comparing intermediately assessed QoL with QoL assessed in long-term follow-up, PE patients scored worse on SF-36 subscales: physical functioning, social functioning, vitality (P<0.05), and on the PEmb-QoL subscales: emotional complaints and limitations in ADL (P≤0.03). Clinical characteristics did not correlate with QoL as measured by PEmb-QoL. Our study demonstrated an impaired QoL in patients after treatment of PE. The results of this study provided more knowledge about QoL in patients treated for PE.
    Thrombosis Research 09/2013; · 3.13 Impact Factor
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    ABSTRACT: Succinate dehydrogenase (SDH) mutation carriers are predisposed for developing paragangliomas. This study aimed to explore illness perceptions, risk perception and disease-related worry in these individuals. All consecutive SDHB and SDHD mutation carriers followed at the Department of Endocrinology of the Leiden University Medical Center (LUMC), a tertiary referral center, were eligible for inclusion. Illness perceptions were assessed using the validated Illness Perception Questionnaire-Revised and compared to reference populations. Risk perception and worry were measured by two items each and associations with illness perceptions explored. Twenty SDHB and 118 SDHD mutation carriers responded. Compared with various reference groups, SDH mutation carriers perceived less controllability of their condition. SDHB mutation carriers considered their condition to be less chronic in nature (p = 0.005) and perceived more personal (p = 0.018) and treatment control (p = 0.001) than SDHD mutation carriers. Mutation carriers with manifest disease reported more negative illness perceptions and a higher risk perception of developing subsequent tumors than asymptomatic mutation carriers. Illness perceptions, risk perception and disease-related worry were strongly correlated. Risk perception and disease-related worry may be assessed through illness perceptions. The development of interventions targeting illness perceptions may provide tools for genetic counseling.
    Familial Cancer 08/2013; · 1.94 Impact Factor
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    ABSTRACT: Context:Paraganglioma (PGL) patients and succinate dehydrogenase (SDH) gene mutation carriers at risk for PGLs have a decreased quality of life (QoL). QoL may be affected by the strategy an individual uses when dealing with a stressful situation, ie, specific coping styles. Understanding the various approaches to coping may allow the development of targeted interventions to improve patient QoL.Objective:The objective of the study was to assess coping styles in PGL patients and SDH mutation carriers.Design:This was a cross-sectional study.Setting:The study was conducted at a tertiary referral center.Patients and Methods:Coping styles were assessed using the Utrecht Coping List. The results from the study cohort were compared with a control group and data derived from the literature. Potential differences in coping styles between the various SDH mutation carriers and PGL patients without an SDH mutation were explored.Results:Of the 174 patients who responded, 122 were SDHD, 25 SDHB, and 2 SDHC mutation carriers. An additional 25 patients lacked an SDH mutation. They recruited 100 peers as controls. Compared with the general population, the study cohort was more avoidant of problems (P < .001) and reported less expression of emotion (P < .01). Compared with patients with other conditions, they sought more social support (P < .001). There were no significant differences in coping styles between the various categories of mutation carriers or PGL patients lacking a mutation.Conclusions:Coping styles of PGL patients and SDH mutation carriers differ from those of control and reference groups and include an avoidant coping style and a lack of emotional expression.
    The Journal of clinical endocrinology and metabolism 08/2013; · 6.50 Impact Factor
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    ABSTRACT: This study examined the effectiveness of low-intensity, practice-tailored training for general practitioners (GPs) aimed at personal and organizational barriers that arise when routinely asking patients' smoking status, advising to quit, and arranging follow-up. A cluster-randomized controlled trial with 49 GPs and 3,401 patients (677 smokers). Two patient groups participated: 2,068 patients (433 smokers) at baseline and 1,333 patients (244 smokers) postintervention. At follow-up, 225 smokers of both groups participated. The primary outcome was GP smoking cessation counseling (asking about smoking status, advising to quit, prescribing pharmacotherapy, and referring for behavioral support). Secondary outcomes were GPs' attitudes toward smoking cessation care, patients' intention to quit, and long-term quit rates. Outcomes were measured with GP self-report and patient report. Patients of trained GPs reported more often being asked about smoking behavior compared to patients of untrained GPs (OR = 1.94, 95% CI = 1.45-2.60). According to GP self-report, the training increased the provision of quit-smoking advices (difference 0.56 advice per day; 95% CI = 0.13-0.98) and the ability and intention of providing smoking cessation care. We found no effect on GPs' arrangement of follow-up, smokers' intention to quit, and long-term quit rates. After 1 hour of training, we found significant differences between trained and untrained GPs on the frequency in which they asked about smoking (patient reported) and advised smokers to quit (GP self-reported). The training did not increase prescriptions of pharmacotherapy, referrals to behavioral support, or quit rates. Future training methods should focus on the GPs' ability, tools, and skills to arrange follow-up to ensure intensive smoking cessation support.
    Nicotine & Tobacco Research 07/2013; · 2.48 Impact Factor
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  • Isabella A J van Duin, Ad A Kaptein
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    ABSTRACT: Fifty years ago, doctors did not tell their patients they had cancer. Improved patient-physician communication, feminization of the medical profession and increased patient empowerment may have improved matters. However, death is still a subject many doctors find difficult to deal with. We explore this issue in the context of medical humanities. In order to examine the different strategies in coping with illness and death, we compared illness perceptions in a literary text, W;t by Margaret Edson, about a woman who dies of ovarian cancer, with a personal narrative of a patient with ovarian cancer. Although there are many differences between the two patients in historical and cultural background, similarities were found in the way they cope with illness and death anxiety. Insight into illness perceptions and coping strategies of patients with cancer is important for raising awareness in clinicians, leading to improved understanding and better treatment of patients.
    Journal of Cancer Education 07/2013; · 0.88 Impact Factor
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    ABSTRACT: BACKGROUND AND AIMS: Understanding the determinants of Crohn's disease (CD) patients' health-related quality of life (HRQOL) may facilitate interventions that improve HRQOL. Therefore, we systematically assessed determinants of HRQOL in adult CD patients. METHODS: The databases PubMed, EMBASE, the Cochrane Library, PsycINFO and CINAHL were searched for English abstracts, related to socio-demographic, psychological, clinical and treatment-related determinants of HRQOL in CD disease. Two independent reviewers extracted study characteristics and assessed the methodological quality according the criteria of Hayden et al. The main outcome was the number of studies showing a statistically significant association between the above-mentioned determinants and HRQOL. A meta-analysis was performed to quantify the relationship between disease activity and HRQOL. RESULTS: Of the 2060 articles identified, 29 eligible studies were included. The majority of studies were cross-sectional and had a moderate to high quality. Data on psychological determinants were scarce. Work disability, increased disease activity, number of relapses, corticosteroid treatment and hospitalization rate were significantly associated with a lower HRQOL in the majority of included studies. Biological treatment positively influenced HRQOL. The pooled data on the association between disease activity and HRQOL resulted in a weighed mean correlation coefficient of -0.61 (CI -0.65 to -0.57). CONCLUSIONS: HRQOL of adult CD patients is consistently determined by markers of active disease, including work disability, increased disease activity, number of relapses, biological treatment and hospitalization rate. As disease activity contributed to only 37% of HRQOL, there remains a need for additional, possibly modifiable, determinants. These determinants may refine possibilities to improve HRQOL.
    Journal of Crohn s and Colitis 06/2013; · 3.39 Impact Factor
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    ABSTRACT: PURPOSE: The Functional Assessment of Cancer Therapy-Epidermal Growth Factor Receptor Inhibitor 18 (FACT-EGFRI-18) is a patient-reported outcomes questionnaire developed to assess the effect of EGFRI on patients. The FACT-EGFR-18 was translated into Dutch and evaluated in order to document that the translation adequately captures the concepts of the original English-language version of the questionnaire and is readily understood by subjects in the target population. METHOD: Translation of the FACT-EGFRI-18 from English to Dutch was accomplished by employing the Functional Assessment of Chronic Illness Therapy (FACIT) multilingual translation methodology. Ten native-speaking residents of the target country who reported EGFRI associated dermatological adverse events (dAEs) were asked to review the translation of the harmonized FACT-EGFRI-18. RESULTS: Participants generally found the Dutch FACT-EGFRI-18 easy to understand and complete. In addition, the translation retained the original meaning of the FACT-EGFRI-18 items and instructions. Based on the results of the cognitive debriefing interviews, no changes to improve clarity and comprehension of translations were identified. CONCLUSIONS: The Dutch FACT-EGFRI-18 demonstrates content validity and linguistic validity, and was found conceptually equivalent to its English source, thus confirming linguistic validation. The results suggest that the Dutch FACT-EGFRI-18 can be applied to measure dAE related health related quality of life in Dutch-speaking patients undergoing EGFRI therapy. Formal validation of the Dutch FACT-EGFRI-18 is ongoing.
    European journal of oncology nursing: the official journal of European Oncology Nursing Society 04/2013; · 1.13 Impact Factor
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    ABSTRACT: Sexual problems are common in patients with chronic illnesses. However, few studies have investigated problems with sexual functioning in patients with systemic lupus erythematosus (SLE). The present cross-sectional study assessed the influence of SLE on sexual functioning and its associations with illness perceptions and medical and socio-demographic characteristics. The study included 106 SLE patients who used at least one immunosuppressive agent to control their SLE. Sexual functioning was measured using the Physical Disability Sexual and Body Esteem and the Medical Impact Scale from the Sexual Functioning Questionnaire. Patients' illness perceptions were assessed using the Brief Illness Perception Questionnaire. 49.1% of patients agreed that their SLE had a negative influence on their sexual functioning. In addition, treatment for SLE seemed to play an important role in the negative impact on sexual functioning. Patients' illness perceptions were more important predictors of sexual functioning than medical and socio-demographic characteristics. SLE patients appear to report a lower sexual functioning than patients with other chronic illnesses. SLE in general and immunosuppressive treatment for SLE specifically have a negative influence on sexual functioning. Patients' illness perceptions appear to play a more important role in the negative impact on sexual functioning than medical characteristics such as disease activity. The high prevalence of sexual problems highlights the need to more frequently address and aim to improve sexual functioning in patients with SLE. Patients may benefit from methods such as illness perception modification and coping style interventions to reduce their sexual problems.
    Journal of psychosomatic research 03/2013; 74(3):260-4. · 2.91 Impact Factor
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    ABSTRACT: The purpose of this study is to know the views of people about their illness, i.e., illness perceptions, determine coping strategies, and outcome. Previous research suggests a higher prevalence and a different perception of musculoskeletal complaints between musicians and nonmusicians. The aim of this study is to compare illness perceptions related to musculoskeletal complaints between musicians and nonmusicians. In this cross-sectional study, students from three music academies (n = 345) and one university medical center (n = 2,870) in the Netherlands received an electronic questionnaire concerning questions on sociodemographic characteristics, use of musical instruments, occurrence and characteristics of musculoskeletal complaints in the past year, and the Brief Illness Perception Questionnaire (B-IPQ). Baseline and B-IPQ scores were compared between the samples by means of t tests, chi-square tests, and regression models to adjust for differences in sociodemographic characteristics. Eighty-three music academy students and 494 medical students completed the questionnaire (response rates, 25.5 and 17.6 %, respectively). Seventy-four (89 %) persons in the musician group and 382 (78 %) persons in the nonmusician group reported occurrence of musculoskeletal complaints during the last 12 months. Adjusted for sociodemographic characteristics, the B-IPQ scores of the domains consequences (my illness is a serious condition), concern (I am extremely concerned about my illness), and emotions (my illness makes me scared) were significantly higher among musicians, whereas personal control (there is little I can do to improve my illness), identity (number of symptoms patient sees as part of illness) were not significantly different. Music academy students had a significant more positive score on treatment control. Music academy students report more negative perceptions of their musculoskeletal complaints compared to medical students. Although some selection bias is present, this is supposed to have a minor effect on the outcomes of this study. Addressing illness perceptions in musicians with musculoskeletal complaints could have beneficial effects on physical and functional outcomes.
    Clinical Rheumatology 02/2013; · 2.04 Impact Factor
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    ABSTRACT: PURPOSE: The functional assessment of cancer therapy epidermal growth factor receptor inhibitor 18 (FACT-EGFRI-18) is a patient-reported outcomes questionnaire developed to assess the effect of EGFRI on health-related quality of life (HRQoL). METHODS: Ten native-speaking residents of The Netherlands who reported EGFRI-associated mucocutaneous adverse events (mcAEs) were administered the questionnaire. Patients were subsequently asked a standardized series of questions about the items' personal relevance. RESULTS: Responses reflected a major negative impact of mcAEs due to EGFRI on physical, social/emotional, and functional domains. In some cases, especially in the social/emotional domain, the responses to the qualitative interview indicated a greater impact on HRQoL than the numerical ratings previously selected for the Dutch FACT-EGFRI-18 questions. CONCLUSIONS: Based on these interviews, we identified that the physical items associated with mcAEs interfere most with HRQoL. The results suggest that the FACT-EGFRI-18 can be applied to measure mcAE-related HRQoL in cancer patients undergoing EGFRI therapy. In addition, patients feel the need to rate their symptom burden, too, and we recommend additional adverse event items to be incorporated into the questionnaire.
    Supportive Care in Cancer 02/2013; · 2.09 Impact Factor
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    ABSTRACT: CONTEXT: Germline mutations in succinate dehydrogenase (SDH) genes predispose carriers for developing paragangliomas and studies on their quality of life (QoL) are scarce. OBJECTIVES: The objectives of this study were to assess QoL in patients with paragangliomas, to evaluate long-term QoL and to explore potential differences in QoL between SDH-mutation carriers and paraganglioma patients without an SDH-mutation. DESIGN: Cross-sectional, case-control study. SETTING: Tertiary referral center. SUBJECTS: 174 paraganglioma patients were included; 25 SDHB-, 2 SDHC- and 122 SDHD-mutation carriers and 25 patients without an SDH-mutation. They provided 100 peers as control persons. Furthermore, patients were compared to age-adjusted reference populations. MAIN OUTCOME MEASURES: QoL was assessed using three validated health related QoL questionnaires: the Hospital Anxiety and Depression Scale (HADS), the Multidimensional Fatigue Index (MFI-20) and the Short Form 36 (SF-36). RESULTS: Patients reported a significantly impaired QoL compared to their own controls, mainly on fatigue and physical condition subscales. Compared to age-adjusted literature values, patients had significantly impaired scores on physical, psychological and social subscales. A decreased QoL was mainly related to paraganglioma-associated complaints. THERE WAS NO DIFFERENCE IN QOL BETWEEN THE VARIOUS SDH-MUTATION CARRIERS OR PARAGANGLIOMA PATIENTS WITHOUT AN SDH-MUTATION. QOL IN ASYMPTOMATIC MUTATION CARRIERS, I.E. WITHOUT MANIFEST DISEASE, DID NOT DIFFER FROM QOL OF THE GENERAL POPULATION.LONG-TERM RESULTS IN 41 PATIENTS SHOWED NO ALTERATION IN QOL, BESIDES A REDUCED LEVEL OF ACTIVITY.CONCLUSION: QoL is decreased in paraganglioma patients, but stable when measured over time.
    European Journal of Endocrinology 02/2013; · 3.14 Impact Factor

Publication Stats

2k Citations
304.97 Total Impact Points


  • 1997–2014
    • Leiden University Medical Centre
      • • Department of Pulmonology
      • • Department of Clinical Epidemiology
      • • Department of Clinical Oncology
      • • Department of Psychiatry
      Leyden, South Holland, Netherlands
  • 2012
    • University of Groningen
      Groningen, Groningen, Netherlands
  • 2011
    • Nederlands Instituut voor onderzoek van de Gezondheidszorg
      Utrecht, Utrecht, Netherlands
    • Ahmad Dahlan University
      • Faculty of Pharmacy
      Yogyakarta, Daerah Istimewa Yogyakarta, Indonesia
  • 2009
    • Syracuse University
      Syracuse, New York, United States
    • Isala Klinieken
      Zwolle, Overijssel, Netherlands
  • 1987–1998
    • Leiden University
      Leyden, South Holland, Netherlands