Decision support for patients with early-stage breast cancer: effects of an interactive breast cancer CDROM on treatment decision, satisfaction, and quality of life.

PURPOSE: To investigate the effects of the Interactive Breast Cancer CDROM as a decision aid for breast cancer patients with a choice between breast conserving therapy (BCT) and mastectomy (MT). PATIENTS AND METHODS: Consecutive patients with stage I and II breast cancer were enrolled. A quasi-experimental, longitudinal, and pretest/posttest design was used. Follow-up was scheduled 3 and 9 months after discharge from the hospital. Control patients (n = 88) received standard care (oral information and brochures). The CDROM was provided to patients in the experimental condition (n = 92) as a supplement to standard procedures. Outcome variables were treatment decision, satisfaction, and quality of life (QoL). RESULTS: No effect on treatment decision was found. CDROM patients expressed more general satisfaction with information at 3 and 9 months (95% confidence interval for the difference (d) between the means (d: 4.1 to 12.5 and 5.7 to 14.2 respectively). CDROM patients were also more satisfied with their treatment decision at 3 and at 9 months (d: 0.1 to 0.4; 0.2 to 0.5). Moreover, at 9 months, CDROM patients were more satisfied with breast cancer-specific information (d: 0.9 to 16.5), the decision-making process (d: 0.1 to 0.4), and communication (d: 0.2 to 11.0). At 3 and 9 months, a positive effect was found on general health (d: 0.2 to 14.5 and 0.3 to 15.0). Moreover, at 9 months, CDROM patients reported better physical functioning (d: 5.1 to 19.8), less pain (d: -17.9 to -4.5), and fewer arm symptoms (d: -14.1 to -0.5). CONCLUSION: The Interactive Breast Cancer CDROM improved decision making in patients with early-stage breast cancer with a choice between BCT and MT, as evaluated in terms of patients' satisfaction and QoL.

An eight-year follow-up to a randomized clinical trial of participant satisfaction with three types of mandibular implant-retained overdentures.

Studies have shown that mandibular implant overdentures significantly increase satisfaction and quality of life of edentulous elders. Improved chewing ability appears to have a positive impact on nutritional state. Therefore, it is important to determine the best design of this prosthesis over the long term. In this randomized controlled trial, three groups of edentulous participants with atrophic mandibles wore 3 types of implant overdentures. During an eight-year follow-up, only seven of the 110 participants had dropped out of this study. Almost all participants were still satisfied with their overdentures. Participant satisfaction concerning retention and stability of the mandibular overdenture had decreased significantly in the two-implant ball attachment group, whereas the opinion of participants in the single- and triple-bar groups was still at the same level. The long-term results suggest that a mandibular overdenture retained by 2 implants with a single bar may be the best treatment strategy for edentulous people with atrophic ridges.

Understanding the level of fatigue in cancer patients undergoing radiotherapy.

This study tests the hypothesis that a discrepancy between resources and demands explains most of the variance in fatigue in cancer patients undergoing radiotherapy. Patients (n=250) were interviewed at pretreatment, posttreatment, and at 9-month follow-up. Resources involved physical condition, neuroticism, optimism, social support, gender, age, and level of education. Demands entailed prognosis, radiotherapy dose, the effort associated with actual activity, and the patient's perception of overall burden. Regression analyses were performed, using interaction terms to operationalize the discrepancy between resources and demands. The hypothesis was not supported. At pretreatment, physical condition explained most of the fatigue, whereas, at posttreatment, both the patients' physical condition and perception of burden contributed to fatigue. At follow-up, demands did not add to the variance already explained by resources, and vice versa. Factors that contribute to the patient's physical condition before starting radiotherapy and to his/her perception of burden need to be addressed to further our understanding of their fatigue.

Assessment of medical students' communicative behaviour and attitudes: estimating the reliability of the use of the Amsterdam attitudes and communication scale through generalisability coefficients.

It is widely accepted that adequate attitudes and communicative skills are among the essential objectives in medical education. The Amsterdam attitude and communication scale (AACS) was developed to assess communicative skills and professional attitudes of medical students. More specifically, it was designed to evaluate the clinical behaviour of clerks to establish their suitability for the medical profession. The AACS covers nine dimensions. Moreover, an overall judgement of the student's performance is included. The present paper reports first results on the reliability of the use of the AACS. Data were collected in the course of an AACS training programme for future judges: senior medical and nursing staff members (N=98). Participants judged three videotapes of clerks interviewing patients at the bedside. For the assessment of videotapes, the first four dimensions of the AACS and the overall judgement are relevant. By applying Generalisability Theory to the training data we can forecast the reliability of the AACS in practice and gain insight in the number of raters that is needed to achieve sufficient reliability in clinical practice. If clerk behaviour is rated by six judges, summative assessment is sufficiently precise, i.e. <0.25. When using the full AACS, covering 10 items, the same number of judges is needed. Scores on individual AACS items are not sufficiently reliable. In conclusion, the results indicate that students' behaviour can be evaluated in a reliable manner using the AACS as long as enough judges and items are involved.

The decisional conflict scale: further validation in two samples of Dutch oncology patients.

The importance of patient involvement in medical decision making is indisputable. Yet, decision making concerning medical treatment options is a difficult task for most patients. In order to study decision-making processes in health care, O'Connor developed the decisional conflict scale (DCS). The DCS assesses the level of 'decisional conflict' that patients experience while making health care decisions, and encompasses the following three subscales: (1) uncertainty about choosing among alternatives; (2) factors contributing to uncertainty; (3) perceived effectiveness of the decision. The aim of the present study is to investigate the reliability and validity of the Dutch version of the DCS. A written version of the DCS was administered in two samples of Dutch cancer patients. One sample consisted of cancer patients faced with the decision whether or not to undergo palliative chemotherapy (N=29). The other sample included women with early stage breast cancer who had to choose between mastectomy or lumpectomy followed by radiation therapy (N=141). The response rates were 76% and 91%, respectively. The reliability coefficients of the three subscales were 0.52, 0.80, 0.84, and 0.74, 0.83, 0.83 in the two samples, respectively. Construct validity was partly supported. Criterion validity was substantiated. In evaluating the factorial validity, it was found that the original three-factor model had to be rejected (chi(2)(87)=293, root mean square error of approximation (RMSEA)=0.137). A subsequent exploratory factor analysis suggested an alternative four-factor model. The psychometric properties of the DCS were partly confirmed in Dutch cancer patients. Improved 'wording' of certain items, e.g. to avoid double negatives, could further increase the factorial validity of the DCS. Then, this scale may be a valuable tool for studies that address the quality of medical decision making.

Compliance in dentistry: general adherence, specific adherence and perceived dental health.

In this study it was attempted to replicate findings on the relationship between general and specific adherence and perceived health in the context of dental treatment. Furthermore the psychometric characteristics of a modified adherence scale for use in dental populations were investigated. A sample of 167 freshmen completed a questionnaire containing a general adherence scale (GAS) developed by DiMatteo et al. (Oncology 1992;6:50-7), a perceived health scale, a perceived dental health scale, and two items about adherence to recommendations on dental behaviour. The GAS showed adequate internal consistency. Positive correlations were found for general adherence on the one hand and for specific adherence, perceived health, and perceived dental health on the other. The results concerning the GAS and specific adherence do not correspond with the findings of DiMatteo et al. It is suggested that this discrepancy is due to the situation-specificity of adherence in combination with differences in the samples and the specific adherence measures used in both studies.

Reasons why patients bypass their GP to visit a hospital emergency department.

Knowledge about what motivates patients to visit the emergency department (ED) of a hospital for minor complaints, instead of visiting their general practitioner (GP), can help to reduce unnecessary utilization of expensive services. This paper reports on a study designed to investigate the reasons why patients visit the ED and to determine the influence of patient characteristics on specific motives. A multidimensional measurement instrument was designed to identify the motives of patients who bypass their GP and visit the ED. The instrument assessed 21 motives, all measured by means of three questions in Likert format. During a period of 1 week, all patients who visited the ED of two hospitals in Amsterdam were asked to complete a questionnaire when they were 'self-referred' with minor complaints. A total of 403 questionnaires were analysed, and the results show that motives relating to the GP play a minor role in the decision of patients to visit the ED. Profiles of two major patient groups could be identified. One group comprised patients with a high socio-economic status living in suburbs, whose motives for visiting the ED are mainly of a financial nature. Patients in the second group mainly lived in the inner-city, and preferred the expertise and facilities provided by the ED.

Taraxacum species as environmental indicators for grassland management.

A classification of the microspecies of the genus Taraxacum was made in a range from low to highly dynamic habitats based on qualitative inventories of grasslands under different management conditions. After several years of constant management, a characteristic species composition occurs. Under mowing (hayfield) conditions, dandelions disappear over a period of about twenty years in a sequence where the low-dynamic species T. adamii and T. nordstedtii are the last to vanish. Different microspecies in the section Vulgaria in one field can show small differences in response to environmental conditions, even where no other directly visible indication exists. New appearance of highly dynamic species can indicate disturbance of some kind or other within a relatively short period.The classification adopted seems to be correlated with the phosphate content of the soil. Differences in two easily perceptible morphological characteristics, namely position of the outer bracts and colour of the leaf-stem, fit into the established sequence. Small changes in these characteristics indicate conditions in the field that are improving or worsening from a nature-conservation point of view. A system is introduced in which merely these two morphological characters, without further taxonomical knowledge, can be used for an evaluation of grasslands and the impact of management practice.

Functional outcome after colectomy and ileorectal anastomosis compared with proctocolectomy and ileal pouch-anal anastomosis in familial adenomatous polyposis.

OBJECTIVE: To compare the long-term functional results of ileorectal anastomosis (IRA) with those of ileal pouch-anal anastomosis (IPAA) in patients with familial adenomatous polyposis (FAP). SUMMARY BACKGROUND DATA: In patients with FAP, hundreds of colorectal adenomas develop, and the patient will die of colorectal cancer if left untreated. The surgeon must choose between colectomy with IRA and restorative proctocolectomy with IPAA. One factor crucial to decision making is the functional outcome after either procedure. To date, studies on this issue have reported conflicting results and have been based on small series of patients. METHODS: To assess various functional variables, a questionnaire was sent to 323 patients with FAP who underwent either IRA or IPAA and who were registered at the Netherlands Foundation for the Detection of Hereditary Tumors. The overall response rate was 86%; the responders comprised 161 patients who underwent IRA and 118 patients who underwent IPAA. RESULTS: Patients who underwent IRA scored significantly better for daytime and nighttime stool frequency, soiling, occasional passive incontinence, flatus and feces discrimination, stool consistency, and need for antidiarrheal medication. There was no difference with regard to perianal irritation, episodes of bowel discomfort, or dietary restrictions. The functional results according to the aggregate score of the Gastro-Intestinal Functional Outcome Scale, where the items specified above were integrated (0 indicating a poor and 100 a good overall function), were significantly better in patients with an IRA (74.5) than in patients with an IPAA (66.0) (p < 0.01). CONCLUSION: The functional outcome after IRA is significantly better than after IPAA. On the basis of these results, IRA might still be considered in patients with a mild phenotypic expression of the disease in the rectum.

Hairpins involving both inverted and direct repeats are associated with homoplasious indels in non-coding chloroplast DNA of Taraxacum (Lactuceae: Asteraceae).

Sequence variation in 2.2 kb of non-coding regions of the chloroplast genome of eight dandelions (Taraxacum: Lactuceae) from Asia and Europe is interpreted in the light of the phylogenetic signal of base substitutions vs. indels (insertions-deletions). The four non-coding regions displayed a total of approximately 30 structural mutations of which 9 are potentially phylogenetically informative. Insertions, deletions, and an inversion were found that involved consecutive stretches of up to 172 bases. When compared to phylogenetic relationships of the chloroplast genomes based on nucleotide substitutions only, many homoplasious indels (33%) were detected that differed considerably in length and did not comprise simple sequence repeats typically associated with replication slippage. Though many indels in the intergenic spacers were associated with direct repeats, frequently, the variable stretches participated in inverted repeat stabilized hairpins. In each intergenic spacer or intron examined, nucleotide stretches ranging from 30 to 60 bp were able to fold into stabilized secondary structures. When these indels were homoplasious, they always ranked among the most stabilized hairpins in the non-coding regions. The association of higher order structures that involve both classes of repeats and parallel structural mutations in hot spot regions of the chloroplast genome can be used to differentiate among mutations that differ in phylogenetic reliability.

Quality of life after total colectomy with ileorectal anastomosis or proctocolectomy and ileal pouch-anal anastomosis for familial adenomatous polyposis.

BACKGROUND: Knowledge of postoperative health status is important in decision-making about the type of operation necessary in patients with familial adenomatous polyposis (FAP). This study compared the quality of life (QoL) between patients with an ileorectal anastomosis (group 1) and those with an ileal pouch-anal anastomosis (group 2). METHODS: QoL was assessed with both a generic questionnaire (Short Form-36 Health Survey; SF-36) and a disease-specific questionnaire (European Organization for Research and Treatment of Cancer Colorectal QoL Questionnaire; EORTC QLQ-CR38). The SF-36 consists of 36 items representing eight generic health domains, and the EORTC QLQ-CR38 comprises 38 items representing disease-specific health domains. Both questionnaires were distributed among 323 patients with FAP known at the Dutch Polyposis Registry who had previously undergone either operation. The results of the SF-36 were compared with the scores of age- and sex-matched respondents from the general population. RESULTS: Some 279 patients (86 per cent), 161 in group 1 and 118 in group 2, completed the questionnaire. Generic and disease-specific QoL was the same for groups 1 and 2. The SF-36 scores of both groups were significantly lower than those of the general population. CONCLUSION: There were no differences with respect to health status between patients in groups 1 and 2, and preference for either procedure cannot be based on QoL.

Validation of the gastrointestinal quality of life index for patients with potentially operable periampullary carcinoma.

BACKGROUND: A disease-specific quality of life questionnaire is not available for patients with periampullary carcinoma, although cancer-specific questionnaires and the Gastrointestinal Quality of Life Index (GIQLI) have been used. The aim of this study was to validate the GIQLI for patients with periampullary tumours and to evaluate if subscales of the GIQLI could be identified to allow a more detailed assessment of the patients' quality of life. METHODS: Patients with periampullary carcinoma, included in a study concerning diagnostic laparoscopy, were asked about symptoms and completed a questionnaire comprising the Medical Outcomes Study (MOS) 24 questionnaire, the GIQLI and one question of the Rotterdam Symptom Check List (RSCL). Clinical interpretation and statistical factor analysis were used to identify subscales of the GIQLI. RESULTS: The GIQLI could be divided into four subscales, measuring physical well-being, mental well-being, digestion and defaecation. All four subscales had a good internal reliability and the construct validity was supported by the pattern of correlations with the MOS and RSCL as well as differences in subscale scores for patients with or without certain symptoms. CONCLUSION: In patients with periampullary tumours the GIQLI can be divided into four subscales, measuring different aspects of quality of life. These subscales provide insight into the different problems affecting the patient.

Revealing response shift in longitudinal research on fatigue--the use of the thentest approach.

In this study we examined whether response shift resulting from changes in internal standards occurs in cancer patients undergoing radiotherapy. Ninety-nine newly diagnosed patients undergoing radiotherapy were administered two standardized self-report measures of fatigue prior to receiving radiotherapy. After completion of radiotherapy, patients filled out these questionnaires as a conventional posttest and in reference to how they perceived themselves as they were prior to radiotherapy (a so-called 'thentest'). A transition (direct change) score on fatigue was used as a stratification measure. Patients were subsequently interviewed about their responses. The pattern of mean scores indicative of response-shift effects was found in two distinct subgroups: patients experiencing diminishing levels of fatigue and patients facing early stages of adaptation to increased levels of fatigue. Since response shift may adversely affect the results of self-reported outcomes in clinical trials or other longitudinal research, further research is very much needed.

Detection of genetically divergent clone mates in apomictic dandelions.

This study aims to identify genetically diverged clone mates in apomictic dandelions. Clone mates are defined as individuals that may have diverged as a result of mutation accumulation and that have undergone only clonal reproduction since their most recent common ancestor. Based on distinctive morphology and an aberrant and rare chloroplast haplotype, northwest European individuals of Taraxacum section Naevosa are well suited for the detection of clonal lineages in which mutation has occurred. In the case of strictly clonal reproduction, nuclear genetic variability was expected to be hierarchically organized. Nucleotide polymorphisms in internal transcribed spacer (ITS) sequences, however, were incompatible with a clonal structure of the Norwegian individuals, probably due to persistent ancestral polymorphisms that pre-date the origin of the Naevosa clone. This interpretation is supported by the presence of ITS variants in section Naevosa that were also found in distantly related dandelions. In contrast to the ITS sequence data, amplified fragment length polymorphisms (AFLPs), isozymes and microsatellites strongly supported the contention of prolonged clonal reproduction and mutation accumulation in Norwegian Naevosa. Because these markers are generally considered to be more variable and more rapidly evolving than ITS sequences, mutations in these markers probably evolved after the origin of the clone. Within the Norwegian clone, a surprising number of markers distinguished the clone mates. As a consequence, incorporation of mutation in the detection of clone mates is anticipated to have a big impact on estimates of size, geographical range and age of clones as well as on experimental designs of studies of clonal plants.