Papers by Anne Stiggelbout
Value in Health, 2015
The aim of this study was to calculate preference weights for the Labor and Delivery Index (LADY-... more The aim of this study was to calculate preference weights for the Labor and Delivery Index (LADY-X) to make it suitable as a utility measure for perinatal care studies. In an online discrete choice experiment, 18 pairs of hypothetical scenarios were presented to respondents, from which they had to choose a preferred option. The scenarios describe the birth experience in terms of the seven LADY-X attributes. A D-efficient discrete choice experiment design with priors based on a small sample (N = 110) was applied. Two samples were gathered, women who had recently given birth and subjects from the general population. Both samples were analyzed separately using a panel mixed logit (MMNL) model. Using the panel mixed multinomial logit (MMNL) model results and accounting for preference heterogeneity, we calculated the average preference weights for LADY-X attribute levels. These were transformed to represent a utility score between 0 and 1, with 0 representing the worst and 1 representing the best birth experience. In total, 1097 women who had recently given birth and 367 subjects from the general population participated. Greater value was placed on differences between bottom and middle attribute levels than on differences between middle and top levels. The attributes that resulted in larger utility increases than the other attributes were "feeling of safety" in the sample of women who had recently given birth and "feeling of safety" and "availability of professionals" in the general population sample. By using the derived preference weights, LADY-X has the potential to be used as a utility measure for perinatal (cost-) effectiveness studies.
Journal of Clinical Epidemiology, 2015
To validate the Labor and Delivery Index (LADY-X), a new delivery-specific utility measure. In a ... more To validate the Labor and Delivery Index (LADY-X), a new delivery-specific utility measure. In a test-retest design, women were surveyed online, 6 to 8 weeks postpartum and again 1 to 2 weeks later. For reliability testing, we assessed the standard error of measurement (S.E.M.) and the intraclass correlation coefficient (ICC). For construct validity, we tested hypotheses on the association with comparison instruments (Mackey Childbirth Satisfaction Rating Scale and Wijma Delivery Experience Questionnaire), both on domain and total score levels. We assessed known-group differences using eight obstetrical indicators: method and place of birth, induction, transfer, control over pain medication, complications concerning mother and child, and experienced control. The questionnaire was completed by 308 women, 257 (83%) completed the retest. The distribution of LADY-X scores was skewed. The reliability was good, as the ICC exceeded 0.80 and the S.E.M. was 0.76. Requirements for good construct validity were fulfilled: all hypotheses for convergent and divergent validity were confirmed, and six of eight hypotheses for known-group differences were confirmed as all differences were statistically significant (P-values: <0.001-0.023), but for two tests, difference scores did not exceed the S.E.M. The LADY-X demonstrates good reliability and construct validity. Despite its skewed distribution, the LADY-X can discriminate between groups. With the preference weights available, the LADY-X might fulfill the need for a utility measure for cost-effectiveness studies for perinatal care interventions.
Journal of geriatric oncology, Jan 11, 2015
Prospective data on chemotherapy for (frail) elderly patients with advanced colorectal cancer (aC... more Prospective data on chemotherapy for (frail) elderly patients with advanced colorectal cancer (aCRC) are scant. UFT/leucovorin might be as effective as and less toxic than capecitabine. We firstly randomized both agents in patients >65years with aCRC not amenable to receive combination chemotherapy. Patients were randomised between first-line oral UFT/leucovorin and capecitabine in a Dutch multicentre trial. Primarily, efficacy and toxicity were determined. Secondary, quality of life (QoL) and abbreviated common geriatric assessment (aCGA) were analysed. Sixty-seven patients were randomised with a median age of 77years and 96% being frail. After interim analysis it was decided to stop recruitment because of low accrual. At a median follow up of 34months, the median progression-free survival (PFS) and overall survival (OS) were similar for both therapies, being 21weeks (p=0.17) and 12months (p=0.83), respectively. The overall response rates were 24% and 21%, respectively. Two pati...
Journal of clinical epidemiology, Jan 26, 2014
Multi-item questionnaires are frequently used to measure outcomes in randomized controlled trials... more Multi-item questionnaires are frequently used to measure outcomes in randomized controlled trials (RCTs) in patients with sciatica. Knowing the minimaly important change (MIC) values for these instruments will facilitate interpretation of change scores. MIC values have been shown to be dependent on baseline values. The question is whether they also depend on the type of intervention. To estimate the MIC of the Roland Morris Disability Questionnaire (modified 23 item version) (RMDQ) and of intensity of leg pain measured by a Visual Analogue Scale (VAS) in patients with sciatica and to assess to what extent MIC values depend on type of intervention and on baseline values. This is a secondary analysis of RCT data of the effects of early surgery vs. prolonged conservative treatment in patients with sciatica. Baseline and 8-week data were used to assess MIC of the RMDQ-23 and VAS leg pain. We used the receiver operator characteristic (ROC) method to assess the MIC. Global Perceived Recov...
Acta oncologica (Stockholm, Sweden), Jan 8, 2015
When deciding about the use of a defunctioning stoma in rectal cancer surgery, benefits and risks... more When deciding about the use of a defunctioning stoma in rectal cancer surgery, benefits and risks need to be weighed. This study investigated: (1a) factors associated with the use of defunctioning stomas; (1b) hospital variation; and (2) surgeons' perceptions regarding factors that determine this decision. Population-based data from the Dutch Surgical Colorectal Audit were used. Factors for receiving a defunctioning stoma were analyzed with multivariate logistic regression analysis. Hospital variation was assessed before and after case-mix adjustment. A survey was performed among gastroenterological surgeons on the importance of factors for the decision to construct a defunctioning stoma. In total 4368 patients were analyzed and 103 (34%) surgeons participated. Male gender, higher body mass index, lower tumors, preoperative radiotherapy, and treatment in a teaching/university hospital increased the odds for a defunctioning stoma. Unadjusted hospital variation ranged from 0% to 9...
Clinical Breast Cancer, 2014
Although adjuvant endocrine therapy effectively prevents breast cancer recurrence, nonadherence r... more Although adjuvant endocrine therapy effectively prevents breast cancer recurrence, nonadherence rates are substantial. We therefore examined associations of women's experiences and perceptions regarding the efficacy, side effects, and practical problems of endocrine therapy with nonadherence. Furthermore, we examined whether women's perceived self-efficacy moderated these associations. Two hundred forty-one breast cancer patients participated. Using the electronic Tailored Medicine Inventory, which enables skipping of irrelevant items, experiences and perceptions were assessed in a comprehensive yet feasible manner. Adherence was assessed according to self-report and evaluated for agreement with adherence estimated from pharmacy refill data. A substantial number of women doubted the efficacy of endocrine therapy, were worried about and/or had experienced hot flushes, loss of libido, joint ache, and/or practical problems with regard to information, intake, and packaging. Experience of practical problems (odds ratio [OR], 2.4; 95% confidence interval [CI], 1.0-5.8) and perceived self-efficacy with regard to medicine intake (OR, 0.5; 95% CI, 0.4-0.7) were associated with unintentional nonadherence. Number of side effects experienced (OR, 1.2; 95% CI, 1.05-1.4) and perceived self-efficacy with regard to learning about medication (OR, 0.6; 95% CI, 0.4-0.96) were associated with intentional nonadherence. Perceived self-efficacy did not moderate associations between women's treatment experiences and perceptions and nonadherence. Endocrine therapy is challenging for many women. Targeting women's specific experiences and perceptions and improving their perceived self-efficacy is likely to decrease intentional and unintentional nonadherence.
Purpose: The purpose of the study was to assess experiences with sexual dysfunctions, psychosexua... more Purpose: The purpose of the study was to assess experiences with sexual dysfunctions, psychosexual support, and psychosexual healthcare needs among cervical cancer survivors (CCSs) and their partners.
Methods: Semi-structured interviews were conducted with CCSs (n = 30) and their partners (n = 12).
Results: Many participants experienced one or more sexual dysfunctions often causing feelings of distress. Most participants reported having been asked about their sexual functioning, although attention for sexual functioning was often limited and medically oriented. Considering sexuality a taboo topic hampered some participants to seek help. Many participants desired information about treatment consequences for sexual functioning, practical advice on dealing with dysfunctions, and reassurance that it is common to experience sexual dysfunction. A website was generally considered a useful and accessible first resource for information about sexual functioning after cancer.
Conclusions: Sexual dysfunctions are often distressing. Many patients and partners experience psychosexual healthcare needs, but the provided information and care is generally limited. Psychosexual support should go beyond physical sexual functioning and should take aspects such as sexual distress, relationship satisfaction, and the partner perspective into account. Additionally, offering more practical and reassuring information about sexuality after cervical cancer would be valuable for both CCSs and their partners.
International Journal of Cardiology, 2014
Radiotherapy and oncology : journal of the European Society for Therapeutic Radiology and Oncology, Jan 11, 2015
The shared decision making (SDM) model states that patients' values and preferences should be... more The shared decision making (SDM) model states that patients' values and preferences should be clarified to choose a strategy that best fits the patient. This study aimed to assess whether values and preferences of rectal cancer patients are voiced and considered in deciding about preoperative radiotherapy (PRT), and whether this makes patients feel more involved in treatment decision making. Pre-treatment consultations of radiation oncologists and patients eligible for PRT were audiotaped (N=90). Tapes were transcribed and coded to identify patients' values and treatment preferences. Patients filled in a post-consultation questionnaire on their perceived involvement in decision making (N=60). Patients' values were voiced for 62/611 of benefits/harms addressed (10%), in 38/90 consultations (42%; maximum 4 values per consultation), and most often related to major long-term treatment outcomes. Patients' treatment preferences were discussed in 20/90 consultations (22%). ...
Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen, 2011
The Dutch health care system has been reformed in 2006 to make it more patient-oriented and deman... more The Dutch health care system has been reformed in 2006 to make it more patient-oriented and demand-driven. We shortly describe four strategies of this health care reform. Although research projects are now fully spread over the country, a coordinated research agenda on SDM is lacking.
Social Science [?] Medicine
Patient decision aids are known to positively impact outcomes critical to shared decision making ... more Patient decision aids are known to positively impact outcomes critical to shared decision making (SDM), such as gist knowledge and decision preparedness. However, research on the potential improvement of these and other important outcomes through cultural targeting and tailoring of decision aids is very limited. This is the case despite extensive evidence supporting use of cultural targeting and tailoring to improve the effectiveness of health communications. Building on prominent psychological theory, we propose a two-stage framework incorporating cultural concepts into the design process for screening and treatment decision aids. The first phase recommends use of cultural constructs, such as collectivism and individualism, to differentially target patients whose cultures are known to vary on these dimensions. Decision aid targeting is operationalized through use of symbols and values that appeal to members of the given culture. Content dimensions within decision aids that appear p...
Value in Health, 2009
Objectives: Few longitudinal studies have evaluated health-related quality of life (HRQoL) in Par... more Objectives: Few longitudinal studies have evaluated health-related quality of life (HRQoL) in Parkinson's disease (PD) and these studies have not evaluated all potentially relevant domains of PD. Our objective was to identify domains at baseline that predict change in HRQoL, and to evaluate the relation between change in HRQoL and change in particular domains of PD. Methods: A total of 336 patients who participated in the longitudinal SCOPA-PROPARK cohort study and had data from the first and third annual evaluation were included in this study. The Scales for Outcomes in Parkinson's disease (SCOPA) evaluation was used to assess impairments and disabilities. HRQoL was assessed with the EuroQol-5D visual analogue scale. Multiple linear regression analysis with "change in HRQoL" as dependent variable was used to identify factors that influence the change in HRQoL. Results: Health-related quality of life as well as most impairment and disability domains decreased significantly from baseline to follow-up. The two regression models of "change in HRQoL," adjusted for baseline HRQoL, included 1) the baseline domains autonomic dysfunction, nighttime sleep problems, and cognitive function, and 2) "change in psychosocial problems," "change in depressive symptoms," and "change in cognitive function." Conclusions: Patients who have autonomic dysfunction, nighttime sleep problems, and cognitive dysfunction are at risk for deterioration in HRQoL. Deterioration in HRQoL over 2-year time was associated with worsening in psychosocial well-being, mood, and cognitive function. Interventions aiming to improve these domains are important and would likely contribute to improvement in HRQoL, although more research is necessary.
Patient Education and Counseling, 2015
Probabilities of benefits and harms of treatment may help patients when making a treatment decisi... more Probabilities of benefits and harms of treatment may help patients when making a treatment decision. This study aimed to examine (1) whether and how radiation oncologists convey probabilities to rectal cancer patients, and (2) patients' estimates of probabilities of major outcomes of rectal cancer treatment. First consultations of oncologists and patients eligible for preoperative radiotherapy (PRT) (N=90) were audio taped. Tapes were transcribed verbatim and coded to identify probabilistic information presented. Patients (N=56) filled in a post-consultation questionnaire on their estimates of probabilities. Probabilities were mentioned in 99% (local recurrence), 75% (incontinence), 72% and 40% (sexual dysfunction in males and females, respectively) of cases. Most patients (89%) correctly estimated that PRT decreases the probability of local recurrence, and 10% and 38%/54% that it increases the probability of incontinence and sexual dysfunction in males/females, respectively. Patients tended to underestimate the probabilities of harms of treatment. Our results show that oncologists almost always mention probabilities of benefit of PRT. In contrast, probabilities of harms often go unmentioned. The effect of PRT on adverse events is often underestimated. Oncologists should stay alert to patients' possible misunderstanding of probabilistic information and should check patients' perceptions of probabilities.
Patient Preference and Adherence, 2014
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, Jan 3, 2015
Health state valuations, used to evaluate the effectiveness of healthcare interventions, can be o... more Health state valuations, used to evaluate the effectiveness of healthcare interventions, can be obtained either by the patients or by the general population. The general population seems to value somatic conditions more negatively than patients, but little is known about valuations of psychological conditions. This study examined whether individuals with and without depression differ in their valuations of depression and whether perceptions regarding depression (empathy, perceived susceptibility, stigma, illness perceptions) and individual characteristics (mastery, self-compassion, dysfunctional attitudes) bias valuations of either individuals with or without depression. In an online study, a general population sample used a time-trade-off task to value 30 vignettes describing depression states (four per participant) and completed questionnaires on perceptions regarding depression and individual characteristics. Participants were assigned to depression groups (with or without depres...
Patient Education and Counseling, 2004
Effective communication of treatment risks is important to enable patients to make informed decis... more Effective communication of treatment risks is important to enable patients to make informed decisions. This study aimed to determine the effects of different risk formats on participants' evaluation and interpretation of risk information and on their treatment choice. Participants (N = 44) were recruited among patients who had undergone surgery for an abdominal aneurysm and were asked to evaluate treatment risks (surgery or an observation policy) of two hypothetical cases presented in one of three risk formats (numbers, vertical bars or icons). Risk information presented in vertical bars was evaluated as the most difficult to comprehend, and the perceived threat of this information was evaluated as higher than that of the other risk formats. Risk information presented as icons was evaluated as more helpful for making a decision, but resulted in a lower percentage of participants choosing for surgery than when risks were presented in the other formats. In conclusion, this study showed that different risk formats have different effects on participants' evaluation of the information and on their choice. Doctors should therefore be careful in choosing the format in which they present treatment risks.
BMC medical informatics and decision making, 2014
We aimed to evaluate the effect of a decision aid (DA) with information only compared to a DA wit... more We aimed to evaluate the effect of a decision aid (DA) with information only compared to a DA with values clarification exercise (VCE), and to study the role of personality and information seeking style in DA-use, decisional conflict (DC) and knowledge. Two scenario-based experiments were conducted with two different groups of healthy female participants. Dependent measures were: DC, knowledge, and DA-use (time spent, pages viewed, VCE used). Respondents were randomized between a DA with information only (VCE-) and a DA with information plus a VCE(VCE+) (experiment 1), or between information only (VCE-), information plus VCE without referral to VCE(VCE+), and information plus a VCE with specific referral to the VCE, requesting participants to use the VCE(VCE++) (experiment 2). In experiment 2 we additionally measured personality (neuroticism/conscientiousness) and information seeking style (monitoring/blunting). Experiment 1. There were no differences in DC, knowledge or DA-use betw...
The Lancet Oncology, 2014
Adjuvant! Online is a prediction tool that can be used to aid clinical decision making in patient... more Adjuvant! Online is a prediction tool that can be used to aid clinical decision making in patients with breast cancer. It was developed in a patient population aged 69 years or younger, and subsequent validation studies included small numbers of older patients. Since older patients with breast cancer differ from younger patients in many aspects, the aim of this study was to investigate the validity of Adjuvant! Online in a large cohort of unselected older patients. We included patients from the population-based FOCUS cohort, which included all consecutive patients aged 65 years or older who were diagnosed with invasive or in-situ breast cancer between Jan 1, 1997, and Dec 31, 2004, in the southwestern part of the Netherlands. We included all patients who fulfilled the criteria as stated by Adjuvant! Online: patients with unilateral, unicentric, invasive adenocarcinoma; no evidence of metastatic or residual disease; no evidence of T4 features; and no evidence of inflammatory breast cancer. We entered data from all patients with the "average for age" comorbidity status (model 1) and with an individualised comorbidity status (model 2). We included 2012 patients. Median age of patients in the cohort was 74·0 years (IQR 69·0-79·0). 904 (45%) of 2012 patients died during follow-up, whereas 326 (16%) patients had recurrence. Median follow-up for overall survival was 9·0 years (IQR 7·4-10·7), and 6·6 years (4·4-6·6) for patients without recurrence. Using model 1, Adjuvant! Online overestimated 10-year overall survival by 9·8% ([95% CI 5·9-13·7], p<0·0001) and 10-year cumulative recurrence survival by 8·7% ([6·7-10·7], p<0·0001). By contrast, when using model 2, Adjuvant! Online underestimated the 10-year overall survival by -17·1% ([95% CI -21·0 to -13·2], p<0·0001). However, when using model 2, Adjuvant! Online predicted cumulative recurrence accurately in all patients (-0·7% [95% CI -2·7-1·3], p=0·48). Adjuvant! Online does not accurately predict overall survival and recurrence in older patients with early breast cancer. Dutch Cancer Foundation.
Purpose: Many studies have shown that patients value their somatic condition more favorably than ... more Purpose: Many studies have shown that patients value their somatic condition more favorably than healthy individuals. The opposite has been found for depression, as people with depression seem to value depression worse than non-depressed people. However, studies on this topic are limited in number and methodologically limited. Several factors such as low adaptive skills or stigma have been hypothesized to account for observed discrepancies, but have not been examined before. We studied: a. whether individuals with and without depression differ in their valuations of depression. b. and if so, whether these discrepancies are explained by demographic characteristics, cognitions (i.e. stigma towards, perceptions of, perceived susceptibility to depression, dysfunctional attitudes) and personal resources (i.e. mastery, empathy, self-compassion). Method: Thirty states of depression were constructed based on the McSad classification system and rated by experts concerning their severity. Par...
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Papers by Anne Stiggelbout
Methods: Semi-structured interviews were conducted with CCSs (n = 30) and their partners (n = 12).
Results: Many participants experienced one or more sexual dysfunctions often causing feelings of distress. Most participants reported having been asked about their sexual functioning, although attention for sexual functioning was often limited and medically oriented. Considering sexuality a taboo topic hampered some participants to seek help. Many participants desired information about treatment consequences for sexual functioning, practical advice on dealing with dysfunctions, and reassurance that it is common to experience sexual dysfunction. A website was generally considered a useful and accessible first resource for information about sexual functioning after cancer.
Conclusions: Sexual dysfunctions are often distressing. Many patients and partners experience psychosexual healthcare needs, but the provided information and care is generally limited. Psychosexual support should go beyond physical sexual functioning and should take aspects such as sexual distress, relationship satisfaction, and the partner perspective into account. Additionally, offering more practical and reassuring information about sexuality after cervical cancer would be valuable for both CCSs and their partners.
Methods: Semi-structured interviews were conducted with CCSs (n = 30) and their partners (n = 12).
Results: Many participants experienced one or more sexual dysfunctions often causing feelings of distress. Most participants reported having been asked about their sexual functioning, although attention for sexual functioning was often limited and medically oriented. Considering sexuality a taboo topic hampered some participants to seek help. Many participants desired information about treatment consequences for sexual functioning, practical advice on dealing with dysfunctions, and reassurance that it is common to experience sexual dysfunction. A website was generally considered a useful and accessible first resource for information about sexual functioning after cancer.
Conclusions: Sexual dysfunctions are often distressing. Many patients and partners experience psychosexual healthcare needs, but the provided information and care is generally limited. Psychosexual support should go beyond physical sexual functioning and should take aspects such as sexual distress, relationship satisfaction, and the partner perspective into account. Additionally, offering more practical and reassuring information about sexuality after cervical cancer would be valuable for both CCSs and their partners.