Ad A Kaptein

Leiden University Medical Centre, Leyden, South Holland, Netherlands

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Publications (148)343.01 Total impact

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    ABSTRACT: The nature and severity of respiratory disease are typically expressed with biomedical measures such as pulmonary function, X-rays, blood tests, and other physiological characteristics. The impact of respiratory illness on the sufferer, however, is reflected in the stories patients tell: to themselves, their social environment, and their health care providers. Behavioral research often applies standardized questionnaires to assess this subjective impact. Additional approaches to sampling patients' experience of respiratory illness may, however, provide important and clinically useful information that is not captured by other methods. Herein, we assert that novels, poems, movies, music, and paintings may represent a rich, experiential understanding of the patient's point of view of asthma, cystic fibrosis, lung cancer, and tuberculosis. Examination of these works illustrates the broad range and major impact of respiratory illness on patients' quality of life. We suggest that examining how illness is represented in various art forms may help patients, their social environment, and their health care providers in coping with the illness and in humanizing medical care. Medical students' clinical skills may benefit when illness experiences as expressed in art are incorporated in the medical curriculum. More generally, Narrative Health Psychology, Narrative Medicine, and Medical Humanities deserve more attention in education, training, and clinical care of (respiratory) physicians, medical students, and other health care professionals. © The Author(s) 2015.
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    ABSTRACT: Pituitary adenomas give rise to physical and psychological symptoms, which may persist after biochemical cure. Growing attention has been paid to quality of life (QoL) in these patients. We aimed to systematically analyze QoL assessment methods and QoL outcome in these patients. We conducted a systematic literature search up to January 2014 in PubMed, Web of Knowledge, PsycInfo and EMBASE. 102 papers assessing QoL in patients with a pituitary adenoma were included. In clinical (original) studies in which QoL was the primary outcome parameter (n = 54), 19 studies combined a generic questionnaire with a disease-specific questionnaire. QoL was found to be impaired in patients with active disease relative to controls, and generally improved during biochemical cure. However, no normalization occurred, with patients with remitted Cushing's disease demonstrating the smallest improvement. Somatic factors (e.g., hypopituitarism, sleep characteristics), psychological factors (illness perceptions) and health care environment (rural vs. urban) were identified as influencing factors. Intervention studies (predominantly evaluating medical interventions) have been found to improve QoL. The growing number of studies assessing QoL generally described the negative impact of pituitary adenomas. QoL research in this patient group could be further elaborated by the development of disease-specific questionnaires for prolactinoma and non-functioning adenoma, consequent use of generic and disease-specific questionnaires and using a long-term (longitudinal) follow-up. Surgical and pharmacological interventions improve but not normalize QoL. We postulate that there might be margin for further improvement of QoL, for instance by using psychosocial interventions, in addition to optimal medical treatment.
    Pituitary 01/2015; DOI:10.1007/s11102-015-0636-7 · 2.22 Impact Factor
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    ABSTRACT: The inflammatory bowel disease (IBD) disability index has recently been introduced to measure patients' physical, psychological, familial, and social limitations associated with IBD. We assessed factors related to self-reported disability and the relationship between disability and direct health care costs. A large cohort of patients with Crohn's disease (CD) and ulcerative colitis (UC) was prospectively followed for 2 years by 3 monthly web-based questionnaires. At 2 years, patients completed the IBD disability index, with lower score indicating more disability. Linear regression analysis was used to examine the impact of demographics, clinical characteristics, and illness perceptions on self-reported disability. Trends in direct health care costs across the disability severity groups minimal, mild, moderate, and severe, were tested. A total of 554 patients with CD and 424 patients with UC completed the IBD disability index (response rate, 45%). Both clinical characteristics and illness perceptions significantly contributed to self-reported disability (45%-47%, P = 0.000 and 8%-12%, P = 0.000, respectively). Patients with CD scored lower on the self-reported IBD disability index than patients with UC (0.255 versus 3.890, P < 0.000), indicating more disability in patients with CD. Factors independently associated with higher self-reported disability rates were increased disease activity, illness identity (higher number of symptoms attributed to IBD), and stronger emotional response. Disease duration and disease phenotype were not associated with self-reported disability. Direct health care costs increased with the worsening of self-reported disability (P = 0.000). More disability was reported by patients with CD than by UC. Self-reported disability in IBD was mainly determined by clinical disease activity and illness perceptions but not by disease duration or disease phenotype.
    Inflammatory Bowel Diseases 01/2015; DOI:10.1097/MIB.0000000000000278 · 5.48 Impact Factor
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    ABSTRACT: Background Strategies are needed to help general practitioners (GPs) promote smoking cessation as recommended by guidelines. This study examines whether the quality of action planning among GPs improves their provision of smoking cessation care.Methods The effectiveness of a 1-h training programme was examined in a cluster randomised controlled trial in which 49 GPs participated. GPs who followed the training (intervention group; n¿=¿25) formulated action plans related to i) enquiring about smoking, ii) advising to quit smoking, and iii) arranging follow-up for smokers motivated to quit. GPs also formulated a coping plan for encountering smokers not motivated to quit. The quality of these plans (plan specificity) was rated and, 6 weeks after the training, GPs reported on the performance of these plans (plan enactment). Multilevel regression analyses were used to examine the effects of plan specificity and plan enactment on patient-reported smoking cessation activities of the GPs in the intervention group (n¿=¿1,632 patients) compared with the control group (n¿=¿1,769 patients).ResultsCompared to the control group, GPs who formulated a highly specific action plan during the training asked their patients about smoking more often after the training compared to prior to the training (OR 2.11, 95% CI 1.51¿2.95). GPs were most likely to have asked patients about smoking after the training compared to prior to the training when they had enacted a highly specific formulated action plan (OR 3.08, 95% CI 2.04¿4.64). The effects of GP plan specificity and plan enactment on asking patient about smoking were most prominent among GPs who, at baseline, intended to provide smoking cessation care.ConclusionsA highly specific action plan formulated by a GP on when, how, and by whom patients will be asked about smoking had a positive effect on GPs¿ asking patients about smoking, especially when these professionals also reported to have enacted this plan. This effect was most prominent among GPs who intended to provide smoking cessation care prior to the intervention. Training in devising personalised coping plans is recommended to further increase GPs¿ provision of advice to quit smoking and arranging follow-up support to quit smoking.
    Implementation Science 12/2014; 9(1):779. DOI:10.1186/s13012-014-0180-2 · 3.47 Impact Factor
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    ABSTRACT: Back and joint pain are the most common extraintestinal symptoms reported by patients with inflammatory bowel disease (IBD). We assessed the impact of back/joint pain, illness perceptions and coping on quality of life (QOL) and work productivity in patients with IBD. Our cohort included 155 IBD patients with and 100 without arthropathy. Arthropathy was defined as daily back pain for ≥ three months and/or peripheral joint pain and/or joint swelling over the last year. At baseline and at 12 months, patients completed questionnaires on the extent of back/joint pain, IBD disease activity, illness perceptions, coping, QOL, and work productivity. The impact of back/joint pain, illness perceptions and coping on QOL and work productivity was determined, using linear mixed models. In total, 204 IBD patients (72% Crohn's disease, 40% male, mean age 44±14 years) completed questionnaires at both time points. At both time points, IBD patients with back/joint pain reported a significantly lower QOL and work productivity compared to IBD patients without back/joint pain. Predictors of low QOL were back/joint pain (ß -1.04, 95% CI -1.40,-0.68), stronger beliefs about the illness consequences (ß-0.39, 95% CI -0.59,-0.18) and emotional impact of IBD (ß -0.47, 95% CI -0.66,-0.28), and the coping strategy "decreasing activity" (ß -0.26, 95% CI-0.48,-0.03). Predictors of work productivity were back/joint pain (ß 0.22, 95% CI 0.07,0.37) and illness consequences (ß 0.14, 95% CI 0.06,0.22). Back/joint pain, illness perceptions and coping are significant predictors of QOL and work productivity, after controlling for disease activity. Copyright © 2014 European Crohn’s and Colitis Organisation (ECCO). Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.
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    ABSTRACT: Objective To examine the extent to which smokers express negative statements about quitting and the extent to which these statements influence general practitioners’ (GPs’) and practice nurses’ (PNs’) (dis)continuation of guideline-recommended smoking cessation care. Methods Fifty-two video-consultations were observed (GP-consultations: 2007-2008; PN-consultations: 2010-2011). Dialogues were transcribed verbatim and professionals’ and patients’ speech units were coded and analysed using sequential analyses (n = 1424 speech units). Results GPs focused on asking about smoking (GPs: 42.4% versus PNs: 26.2%, p = 0.011) and advising them to quit (GPs: 15.3% versus PNs: 3.5%, p < 0.001), whereas PNs focused on assisting them with quitting (GPs: 25.4% versus PNs: 55.2%, p < 0.001). Overall, patients expressed more negative statements about quitting than positive statements (negative: 25.3% versus positive: 11.9%, p < 0.001), especially when PNs assessed their willingness to quit (OR 3.61, 95% CI 1.44-9.01) or assisted them with quitting (OR 2.23, 95% CI 1.43-3.48). Practice implications An alternative approach to smoking cessation care is proposed in which GPs’ tasks are limited to asking, advising, and arranging follow-up. This approach seems the least likely to evoke negative statements of patients about quitting during dialogues with GPs and is compatible with the tasks and skills of PNs who could, subsequently, assist smokers with quitting.
    Patient Education and Counseling 12/2014; 97(3). DOI:10.1016/j.pec.2014.08.006 · 2.60 Impact Factor
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    ABSTRACT: Living with SLE is a major task for the patients and their social environment. In modern health care, quality of life is increasingly incorporated as an important outcome. Studying novels about illness is a new method of exploring quality of life in patients with an illness. In this paper, we use the novel A tribe of women by Hervé Bazin as data to explore how a patient with SLE gives meaning to her illness and how her social environment reacts toward the illness and its treatment. We find that the novel-probably the only one where SLE is a major subject-offers a rich set of data on "living with SLE". Our findings may be instrumental in encouraging health care providers to explore quality of life in patients with SLE, incorporating self-management in order to improve their quality of life, and in teaching medical students about "medical humanities".
    Clinical Rheumatology 11/2014; DOI:10.1007/s10067-014-2814-9 · 1.77 Impact Factor
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    ABSTRACT: In this narrative review, we put self-management in the context of a 50-year history of research about how patients with COPD respond to their illness. We review a definition of self-management, and emphasize that self-management should be combined with disease management and the chronic care model in order to be effective. Reviewing the empirical status of self-management in COPD, we conclude that self-management is part and parcel of modern, patient-oriented biopsychosocial care. In pulmonary rehabilitation programs, self-management is instrumental in improving patients' functional status and quality of life. We conclude by emphasizing how studying the way persons with COPD make sense of their illness helps in refining self-management, and thereby patient-reported outcomes in COPD.
    International Journal of COPD 09/2014; 9:907-917. DOI:10.2147/COPD.S49622
  • Annals of the Rheumatic Diseases 06/2014; 73(Suppl 2):758-758. DOI:10.1136/annrheumdis-2014-eular.4274 · 9.27 Impact Factor
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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; 54(10pt2). DOI:10.1111/trf.12672 · 3.57 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; DOI:10.1530/EJE-14-0023 · 3.69 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; 32(4). DOI:10.1080/07347332.2014.917139 · 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. DOI:10.1186/1748-5908-9-48 · 3.47 Impact Factor
  • Osteoarthritis and Cartilage 04/2014; 22:S200. DOI:10.1016/j.joca.2014.02.382 · 4.66 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; 18(1). DOI:10.1007/s11102-014-0561-1 · 2.22 Impact Factor
  • SABCS 2013; 12/2013
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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).
  • The Lancet Respiratory Medicine 12/2013; 1(10):769-70. DOI:10.1016/S2213-2600(13)70268-6
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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.
    Thrombosis Research 09/2013; 132(5). DOI:10.1016/j.thromres.2013.06.016 · 2.43 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; DOI:10.1007/s10689-013-9680-5 · 1.62 Impact Factor

Publication Stats

2k Citations
343.01 Total Impact Points

Institutions

  • 1998–2014
    • Leiden University Medical Centre
      • • Department of Medical Decision Making
      • • Department of Pulmonology
      • • Department of Clinical Epidemiology
      • • Department of Clinical Oncology
      • • Department of Psychiatry
      Leyden, South Holland, Netherlands
  • 1987–2014
    • Leiden University
      Leyden, South Holland, Netherlands
  • 2009
    • Isala Klinieken
      Zwolle, Overijssel, Netherlands