Biomedical subjects

A M Stiggelbout

Publications and source records attributed to A M Stiggelbout.

At least 19 recordsLinked to original sources

PubMed2006

How important is the opinion of significant others to cancer patients' adjuvant chemotherapy decision-making?

GOALS: Decisions regarding adjuvant chemotherapy are difficult, since value tradeoffs are involved. Little is known about the importance of the significant others in patients' decision-making regarding adjuvant treatment. We surveyed patients with breast and colorectal cancer about the importance they assigned to the opinions of their significant others and assessed correlates of these importance scores. MATERIALS AND METHODS: One hundred and twenty-three patients rated on a five-point scale how much they cared about the opinion of six significant others. MAIN RESULTS: Most important was the opinion of their treating specialist, followed by that of their partner, children, other family, friends, and colleagues. Women assigned higher scores to the opinion of their children, younger patients to that of their specialist, and patients who were about to undergo chemotherapy to that of their family. Patients with breast cancer and patients without paid employment assigned slightly more importance to the opinion of their partner. CONCLUSIONS: Information on the influence of significant others may help clinicians when involving patients in treatment decision-making and discussing patients' treatment preferences.

Adult↗

PubMed2006

Responsiveness of impairments and disabilities in Parkinson's disease.

The objective of this study is to evaluate the responsiveness of items of the Activities of Daily Living (ADL) and Motor section of the Unified Parkinson's Disease Rating Scale (UPDRS) in patients with Parkinson's Disease (PD). A standardized Response Mean (SRM) per item was calculated using data of four trials (n=376) that randomised patients with early PD to dopamine agonist (DA) monotherapy or placebo. In the ADL section, the SRMs ranged from -0.04 (no effect) to -0.50 (moderate effect). Hand functions were the most responsive ADL items with 'handwriting' showing the largest response. Self-assessed symptoms were the least responsive. In the Motor section, SRMs ranged from -0.09 to -0.60 with bradykinesia items showing the largest response, especially the item 'finger taps'. The tremor items showed the smallest response, however, rest tremor arms was much more responsive than rest tremor of the head and legs or postural tremor. SRMs in the placebo group ranged from 0.08 to -0.21 in the ADL section and from 0.03 to -0.35 in the Motor section. ADL and motor items have comparable and mostly small effect sizes. The most responsive items are in the ADL section hand functions and in the Motor section bradykinesia items. A more responsive ADL section would omit the self-assessed symptoms and the Motor section would retain only rest tremor arms of the tremor items.

Activities of Daily Living↗

PubMed2006

Clinical ethical dilemmas: convergent and divergent views of two scholarly communities.

OBJECTIVE: To survey members of the American Society for Bioethics and Humanities (ASBH; n = 327) and of the Society for Medical Decision Making (SMDM; n = 77) to elicit the similarities and differences in their reasoning about two clinical cases that involved ethical dilemmas. CASES: Case 1 was that of a patient refusing treatment that a surgeon thought would be beneficial. Case 2 dealt with end-of-life care. The argument was whether intensive treatment should be continued of an unconscious patient with multiorgan failure. METHOD: Four questions, with structured multiple alternatives, were asked about each case: identified core problems, needed additional information, appropriate next steps and who the decision maker should be. OBSERVATIONS AND RESULTS: Substantial similarities were noticed between the two groups in identifying the core problems, the information needed and the appropriate next steps. SMDM members gave more weight to outcomes and trade-offs and ASBH members had patient autonomy trump other considerations more strongly. In case 1, more than 60% of ASBH respondents identified the patient alone as the decision maker, whereas members of SMDM were almost evenly divided between having the patient as the solo decision maker or preferring a group of some sort as the decision maker, a significant difference (p<0.02). In case 2, both groups agreed that the question of discontinuing treatment should be discussed with the family and that the family alone should not be the decision maker. CONCLUSION: Despite distinctively different methods of case analysis and little communication between the two professional communities, many similarities were observed in the actual decisions they reached on the two clinical dilemmas.

Aged↗

PubMed2005

Explaining differences in attitude toward adjuvant chemotherapy between experienced and inexperienced breast cancer patients.

PURPOSE: Previous studies have shown that patients who have experienced adjuvant chemotherapy (experienced patients) have a more favorable attitude towards chemotherapy than those who have not (inexperienced patients). However, not much is known about the reasons underlying this difference. According to the Theory of Planned Behavior, the attitude towards a particular behavior (eg, accepting chemotherapy) is based on beliefs about the likelihood of outcomes of the behavior and the evaluations of these outcomes. We used this theory to explore in what way the beliefs of experienced patients differed from those of inexperienced patients. PATIENTS AND METHODS: A cross-sectional survey was undertaken among 719 patients who had been treated for early-stage breast cancer between 1998 and 2003. Patients were asked, first, to indicate the likelihood of six positive and six negative outcomes of undergoing chemotherapy and, second, to give their evaluation of these outcomes. RESULTS: Four hundred forty-six women filled in the questionnaire (response rate, 62%). As hypothesized, experienced patients (ie, patients who had been treated with adjuvant chemotherapy as part of their primary treatment plan) had a more positive attitude towards chemotherapy. Experienced patients provided higher likelihood estimates of treatment advantages, such as life prolongation. In addition, they evaluated the positive outcomes of chemotherapy more favorably. With regard to the negative outcomes of chemotherapy, few differences were observed between treatment groups. CONCLUSION: Experienced patients have more confidence in the positive outcomes of chemotherapy than inexperienced patients. This might be the result of a cognitive mechanism to justify the way in which patients were treated.

Adaptation, Physiological↗

PubMed2005

Missing forms and dropout in the TME quality of life substudy.

OBJECTIVE: Missing forms may pose problems in health related quality of life (QOL) studies, because the absence of a QOL measure may be related to the patient's health and hence to the patient's QOL itself. Studying patterns of missingness, dropout, and the possible impact of missing data on QOL measures is an important step in reporting outcomes of QOL studies. We study patterns of dropout and evaluate the impact of missing forms in the TME QOL substudy. METHODS: Patients with rectal cancer, randomized to receive either radiotherapy plus total mesorectal excision (TME) or TME only were included in the TME trial. QOL was evaluated in 1302 Dutch patients, before treatment, and 3, 6, 12, 18 and 24 months after surgery. Here only the visual analogue score (VAS) was studied. RESULTS: At baseline, differences between VAS scores were found with respect to whether the QOL forms were dated before or after radiotherapy and surgery. Differences were small between different statistical methods accounting for dropout; only a cross-sectional analysis gave biased results. CONCLUSION: The results of the sensitivity analysis indicated that a linear mixed model analysis is a reliable and attractive approach for this study.

Analysis of Variance↗

PubMed2004

The impact of the perception of treatment choice on satisfaction with treatment, experienced chemotherapy burden and current quality of life.

Previous research has shown that involving patients in the decision-making process may improve their quality of life (QoL). Our purposes were to assess: (1) whether early-stage breast cancer patients perceived that they had treatment choice with regard to adjuvant chemotherapy, (2) what reasons patients provide for their perception of having had no choice of treatment and (3) whether the perception of treatment choice is related to satisfaction with the assigned treatment, experienced chemotherapy burden and current QoL. A total of 448 patients, treated between 1998 and 2003, filled in the questionnaire (response rate: 62%). Patients who indicated that they had not perceived a choice regarding chemotherapy could tick off one or more reasons out of 10 reasons, or provide their own reason(s). Quality of life was measured on a Visual Analogue Scale, by means of the EuroQol, and by means of the Hospital Anxiety and Depression Scale. Of the 405 patients who had answered the question on treatment choice, 316 patients (78%) had perceived no choice. The most frequently indicated reason for lack of choice was: "I follow the doctor's advice." We found no differences in the levels of satisfaction with assigned treatment and in how much of a burden they found chemotherapy between patients who perceived a choice of treatment and those who did not. In general, the perception of choice seemed to have no impact on QoL. However, we found an interaction effect, which indicated that the impact of perception of treatment choice on QoL was dependent upon whether the patient had been treated with chemotherapy or not. Within the group of patients who had not been treated with chemotherapy, the perception of having had a choice was related to lower current QoL. In cases when the decision to be treated or not has potential consequences for the chance of survival, patients' QoL may not be improved by the perception of having had a choice of treatment.

Adult↗

PubMed2004

Patient's needs and preferences in routine follow-up after treatment for breast cancer.

The purpose of the study was to analyse the needs of women who participated in a routine follow-up programme after treatment for primary breast cancer. A cross-sectional survey was conducted using a postal questionnaire among women without any sign of relapse during the routine follow-up period. The questionnaire was sent 2-4 years after primary surgical treatment. Most important to patients was information on long-term effects of treatment and prognosis, discussion of prevention of breast cancer and hereditary factors and changes in the untreated breast. Patients preferred additional investigations (such as X-ray and blood tests) to be part of routine follow-up visits. Less satisfaction with interpersonal aspects and higher scores on the Hospital Anxiety and Depression Scale (HADS) scale were related to stronger preferences for additional investigation. Receiving adjuvant hormonal or radiotherapy was related to a preference for a more intensive follow-up schedule. There were no significant differences between patients treated with mastectomy compared to treated with breast-conserving therapy. During routine follow-up after a diagnosis of breast cancer, not all patients needed all types of information. When introducing alternative follow-up schedules, individual patients' information needs and preferences should be identified early and incorporated into the follow-up routine care, to target resources and maximise the likelihood that positive patient outcomes will result.

Adult↗

PubMed2004

Ideals of patient autonomy in clinical decision making: a study on the development of a scale to assess patients' and physicians' views.

OBJECTIVES: Evidence based patient choice seems based on a strong liberal individualist interpretation of patient autonomy; however, not all patients are in favour of such an interpretation. The authors wished to assess whether ideals of autonomy in clinical practice are more in accordance with alternative concepts of autonomy from the ethics literature. This paper describes the development of a questionnaire to assess such concepts of autonomy. METHODS: A questionnaire, based on six moral concepts from the ethics literature, was sent to aneurysm patients and their surgeons. The structure of the questionnaire was assessed by factor analysis, and item reduction was based on reliability. RESULTS: Ninety six patients and 58 surgeons participated. The questionnaire consisted of four scales. Two of the scales reflected the paternalistic and consumerist poles of the liberal individualist model, one scale reflected concepts of Socratic autonomy and of procedural independence, and the fourth scale reflected ideals of risk disclosure. DISCUSSION: The Ideal Patient Autonomy Scale is a 14 item normative instrument. It is clearly distinct from the generally used psychological preference questionnaires that assess preferences for physician-patient roles.

Attitude of Health Personnel↗

PubMed2004

A short scale for the assessment of motor impairments and disabilities in Parkinson's disease: the SPES/SCOPA.

OBJECTIVES: To evaluate the reliability and validity of the Short Parkinson's Evaluation Scale (SPES)/SCales for Outcomes in Parkinson's disease (SCOPA)-a short scale developed to assess motor function in patients with Parkinson's disease (PD). METHODS: Eighty five patients with PD were assessed with the SPES/SCOPA, Unified Parkinson's Disease Rating Scale (UPDRS), Hoehn and Yahr (H&Y) scale, and Schwab and England (S&E) scale. Thirty four patients were examined twice by two different assessors who were blinded to each other's scores and test executions. Additionally, six items of the motor section of the SPES/SCOPA were assessed in nine patients and recorded on videotape to evaluate inter-rater and intra-rater reliability. RESULTS: The reproducibility of the sum scores in the clinical assessments was high for all subscales of the SPES/SCOPA. Inter-rater reliability coefficients for individual items ranged from 0.27-0.83 in the motor impairment section, from 0.58-0.82 in the activities of daily living section, and from 0.65-0.92 in the motor complications section. Inter-rater reliability of the motor items in the video assessments ranged from 0.70-0.87 and intra-rater reliability ranged from 0.81-0.95. The correlation between related subscales of the SPES/SCOPA and UPDRS were all higher than 0.85, and both scales revealed similar correlations with other measures of disease severity. The mean time to complete the scales differed significantly (p<0.001) and measured 8.1 (SD 1.9) minutes for the SPES/SCOPA and 15.6 (SD 3.6) minutes for the UPDRS. CONCLUSION: The SPES/SCOPA is a short, reliable, and valid scale that can adequately be used in both research and clinical practice.

Activities of Daily Living↗

PubMed2003

Palliative chemotherapy or best supportive care? A prospective study explaining patients' treatment preference and choice.

In palliative cancer treatment, the choice between palliative chemotherapy and best supportive care may be difficult. In the decision-making process, giving information as well as patients' values and preferences become important issues. Patients, however, may have a treatment preference before they even meet their medical oncologist. An insight into the patient's decision-making process can support clinicians having to inform their patients. Patients (n=207) with metastatic cancer, aged 18 years or older, able to speak Dutch, for whom palliative chemotherapy was a treatment option, were eligible for the study. We assessed the following before they consulted their medical oncologist: (1) socio-demographic characteristics, (2) disease-related variables, (3) quality-of-life indices, (4) attitudes and (5) preferences for treatment, information and participation in decision-making. The actual treatment decision, assessed after it had been made, was the main study outcome. Of 207 eligible patients, 140 patients (68%) participated in the study. At baseline, 68% preferred to undergo chemotherapy rather than wait watchfully. Eventually, 78% chose chemotherapy. Treatment preference (odds ratio (OR)=10.3, confidence interval (CI) 2.8-38.0) and a deferring style of decision-making (OR=4.9, CI 1.4-17.2) best predicted the actual treatment choice. Treatment preference (total explained variance=38.2%) was predicted, in turn, by patients' striving for length of life (29.5%), less striving for quality of life (6.1%) and experienced control over the cause of disease (2.6%). Patients' actual treatment choice was most strongly predicted by their preconsultation treatment preference. Since treatment preference is positively explained by striving for length of life, and negatively by striving for quality of life, it is questionable whether the purpose of palliative treatment is made clear. This, paradoxically, emphasises the need for further attention to the process of information giving and shared decision-making.

Adult↗

PubMed2003

Assessment of cognition in Parkinson's disease.

OBJECTIVE: To develop a short, practical instrument that is sensitive to the specific cognitive deficits in Parkinson's disease (PD) for comparing groups in research situations and for assessing change in cognitive functioning over time. METHODS: A literature search was conducted to identify the most frequently affected cognitive domains in PD and to select candidate items for the initial scale. This scale was tested in 85 patients and 75 age-, education-, and sex-matched control subjects. Items that met predefined criteria for data quality, reproducibility, and discriminative properties were included in the final scale. RESULTS: The final scale, the SCOPA-COG (SCales for Outcomes of PArkinson's disease-cognition), consists of 10 items with a maximum score of 43, with higher scores reflecting better performance. The test-retest reliability of the total score was 0.78 (intraclass correlation coefficient) and ranged from 0.40 to 0.75 for individual items (weighted kappa). Cronbach's alpha was 0.83. Construct validity of the scale was supported by the expected correlations with the CAMCOG (Cambridge Cognitive Examination) and the Mini-Mental State Examination (MMSE) and by differences found between groups of participants classified by dementia status and between patients grouped by disease severity. The scale showed a clear trend toward lower cognition scores for patients with more advanced PD. The coefficient of variation of the SCOPA-COG was higher than that of the CAMCOG or the MMSE, indicating a better ability to detect differences between individuals. CONCLUSION: The SCOPA-COG is a short, reliable, and valid instrument that is sensitive to the specific cognitive deficits in PD.

Aged↗

PubMed2003

Implicit normativity in evidence-based medicine: a plea for integrated empirical ethics research.

This paper challenges the traditional assumption that descriptive and prescriptive sciences are essentially distinct by presenting a study on the implicit normativity of the production and presentation of biomedical scientific facts within evidence-based medicine. This interdisciplinary study serves as an illustration of the potential worth of the concept of implicit normativity for bioethics in general and for integrated empirical ethics research in particular. It demonstrates how both the production and presentation of scientific information in an evidence-based decision-support contain implicit presuppositions and values, which prestructure the moral environment of the clinical process of decision-making. As a consequence, the evidence-based decision support did not only support the clinical decision-making process; it also transformed it in a morally significant way. This phenomenon undermines the assumption within much of the literature on patient autonomy that information disclosure is a conditional requirement before patient autonomy even starts; patient autonomy is already influenced during the production and presentation of information. These results imply an increased responsibility of those who produce and present evidence-based facts (i.e. scientists in general and physicians in particular). The insights of this study not only involve a different focus on both theory and practice of patient autonomy and informed consent, but they also call for a broader scope of morality than does traditional empirical research in bioethics. The concept of implicit normativity within integrated empirical ethics research calls for strong cooperation between bioethicists and descriptive scientists, i.e., a cooperation that goes beyond the discipline-specific epistemic values and that takes place during all phases of the research process.

Bioethics↗

PubMed2002

Cost-effectiveness analysis of colorectal cancer treatments.

A concise overview is provided of the methodology of cost-effectiveness analyses, followed by a survey of published CEAs of colorectal cancer treatments. To gain credibility, the methodology applied in CEAs must be further improved. Costs are rarely estimated from the societal perspective, and little is known about how colorectal patients value their treatment and health.

Chemotherapy, Adjuvant↗

PubMed2002

Health related quality of life in Parkinson's disease: a systematic review of disease specific instruments.

OBJECTIVE: To compare and contrast disease-specific quality of life instruments in Parkinson's disease and assess their clinimetric properties. METHODS: Two reviewers independently evaluated both thoroughness and results of studies regarding clinimetric characteristics of identified scales. RESULTS: Twenty studies were found reporting on the clinimetric properties of four scales. The content validity of the Parkinson's disease questionnaire-39 item version (PDQ-39), the Parkinson's disease quality of life questionnaire (PDQL), and the "Fragebogen Parkinson LebensQualität" (Parkinson Quality of Life questionnaire; PLQ) was adequate to good, but for the Parkinson's impact scale (PIMS) it was insufficient. Construct validity of both the PDQ-39 and the PDQL was good, but for the PLQ and the PIMS this was insufficiently evaluated. Internal consistency of all scale totals and of subscale totals of the PDQL were good, whereas for the social support subscale of the PDQ-39 and four subscales of the PLQ this was inadequate. Test-retest reliability was not evaluated for the PDQL and was adequate in the other scales. Responsiveness was partially established for the PDQ-39, and not assessed for the other scales. The number of available translations, as well as the number of studies in which these instruments were used, differed considerably. CONCLUSIONS: The selection of an instrument partially depends on the goal of the study. In many situations however, the PDQ-39 will probably be the most appropriate HRQoL instrument. The PDQL may be considered as an alternative, whereas the PLQ may be considered in studies involving German speaking patients with Parkinson's disease. Use of the PIMS should be considered only as a means of identifying areas of potential problems.

Activities of Daily Living↗

PubMed2001

Patients' preferences for adjuvant chemotherapy in early-stage breast cancer: is treatment worthwhile?

When making decisions about adjuvant chemotherapy for early-stage breast cancer, costs and benefits of treatment should be carefully weighed. In this process, patients' preferences are of major importance. The objectives of the present study were: (1) to determine the minimum benefits that patients need to find chemotherapy acceptable, and (2) to explore potential preference determinants, namely: positive experience of the treatment, reconciliation with the treatment decision, and demographic variables. Preferences were elicited from patients scheduled for adjuvant chemotherapy (chemotherapy group: n = 38) before (T(1)), during (T(2)), and 1 month after chemotherapy (T(3)), and were compared to responses from patients not scheduled for chemotherapy (no-chemotherapy group: n = 38). The patients were asked, for a hypothetical situation, to indicate the minimum benefit (in terms of improved 5-year disease-free survival) to find adjuvant chemotherapy acceptable. In the chemotherapy group, the median benefit was 1% at all 3 measurement points. In the no-chemotherapy group the attitude towards chemotherapy became more negative over time, although not statistically significantly so (T(1): 12%, T(2): 15%, T(3): 15%; P = 0.10). At all measurement points, the patients in the chemotherapy group indicated that they would accept chemotherapy for significantly (P< 0.01) less benefit than the patients in the no-chemotherapy group. Of the demographic variables, age was related to preferences, but only at T(2)and only in the no-chemotherapy group. The more positive attitude towards chemotherapy and the stability of preferences in the chemotherapy group indicated that reconciliation with the treatment decision was a more important determinant of patients' preferences than positive experience of the treatment.

Adult↗

PubMed2001

Patient preference for cancer therapy: an overview of measurement approaches.

PURPOSE: In the era of evidence-based medicine and shared decision making, the formal assessment of patient preference for treatments or treatment outcomes has attracted much attention. In this article, the two most common approaches to the evaluation of preference, ie, utility assessment and probability trade-off assessment, are described. The purpose is to provide clinicians with the background knowledge needed to interpret preference studies published in the literature and to judge whether the reported findings are relevant to their own patients. METHODS: An overview is given of the methods used to assess utilities and probability trade-off scores. Evidence on determinants of such scores is presented. Examples from oncology are provided. Because experience with the treatment plays an important role as a determinant of preferences for both treatments and treatment outcomes, special attention is paid to the interpretation of studies in the light of subject selection. Directions for future research are suggested. CONCLUSION: The choice of approach and the measuring instrument depend on the goal of the preference assessment. Normal psychologic processes, such as coping, adaptation, and cognitive dissonance reduction, cause patients who are about to undergo a therapy or have experienced a therapy to rate it more favorably than other patients do. This should be remembered when using evidence from the literature to inform patients or for patient decision making.

Choice Behavior↗

PubMed2001

What is the impact of fecal incontinence on quality of life?

PURPOSE: The objective of this study was to determine at what point fecal incontinence affects quality of life. METHODS: In 35 patients who had anterior sphincter repair for fecal incontinence as a result of obstetric injury, continence evaluated by the Wexner score was compared with validated quality of life tests (Gastrointestinal Quality of Life Index and Medical Outcomes Study Short-Form General Health Survey). The questionnaires were sent by mail. Thirty-two patients responded. The Wexner score (0-20) was correlated with the Gastrointestinal Quality of Life Index and the Medical Outcomes Study Short-Form General Health Survey and matched with those of reference groups. RESULTS: The mean Wexner score was 8.8, corresponding with losing stools between once a week and once a month. The mean Gastrointestinal Quality of Life Index score was 105 (range, 48-136), which is significantly lower than the score found in a reference group of normal individuals. Medical Outcomes Study Short-Form General Health Survey scores were significantly lower in all six dimensions compared with the reference group. A Wexner score of 9 or higher was associated with a Gastrointestinal Quality of Life Index score of less than 105, which implies that patients were less mobile in the community and were confined to their homes. A similar correlation was found between a Wexner score higher than 9 and the Medical Outcomes Study Short-Form General Health Survey. CONCLUSIONS: A Wexner score of 9 or higher indicates a significant impairment of quality of life and can therefore be used in decision making.

Adult↗

PubMed2001

The utility of health states after stroke: a systematic review of the literature.

BACKGROUND: To perform decision analyses that include stroke as one of the possible health states, the utilities of stroke states must be determined. We reviewed the literature to obtain estimates of the utility of stroke and explored the impact of the study population and the elicitation method. SUMMARY OF REVIEW: We searched various databases for articles reporting empirical assessment of utilities. Mean utilities of major stroke (Rankin Scale 4 to 5) and minor stroke (Rankin Scale 2 to 3) were calculated, stratified by study population and elicitation method. Additionally, the modified Rankin Scale was mapped onto the EuroQol classification system. Utilities were obtained from 23 articles. Patients at risk for stroke assigned utilities of 0.26 and 0.55 to major and minor stroke, respectively. Stroke survivors assigned higher utilities to both major (0.41) and minor stroke (0.72). The EuroQol completed by stroke survivors revealed a utility of 0.32 and 0.71 for major and minor stroke, respectively. Utilities elicited by the Standard Gamble were generally higher, while those obtained by the Visual Analogue Scale were lower than the Time Trade Off values. Remaining variation between utilities may be caused by differences in definitions of the health states. The mapped EuroQol indicated a utility of 0.64 for minor stroke and a value just below zero for major stroke. CONCLUSIONS: For minor stroke, a utility between 0.50 and 0.70 seems to be reasonable for both decision analyses and cost-effectiveness studies. The utility of major stroke may range between 0 and 0.30 and may possibly be negative.

Adolescent↗