Shared decision-making and providing information among newly diagnosed patients with hematological malignancies and their informal caregivers: Not "one-size-fits-all".

OBJECTIVE: To optimize personalized medicine for patients with hematological malignancies (HM), we find that knowledge on patient preferences with regard to information provision and shared decision-making (SDM) is of the utmost importance. The aim of this study was to investigate the SDM preference and the satisfaction with and need for information among newly diagnosed HM patients and their informal caregivers, in relation to sociodemographic and clinical factors, cognitive coping style, and health related quality of life. METHODS: Newly diagnosed patients and their caregivers were asked to complete the Hematology Information Needs Questionnaire, the Information Satisfaction Questionnaire, and the Threatening Medical Situations Inventory. Medical records were consulted to retrieve sociodemographic and clinical factors and comorbidity by means of the ACE-27. RESULTS: Questionnaires were completed by 138 patients and 95 caregivers. Shared decision-making was preferred by the majority of patients (75%) and caregivers (88%), especially patients treated with curative intent (OR = 2.7, P = .041), and patients (OR = 1.2, P < .001) and caregivers (OR = 1.2, P = .001) with a higher monitoring cognitive coping style (MCCS). Among patients, total need for information was related to MCCS (P = .012), and need for specific information was related to MCCS and several clinical factors. Importantly, dissatisfaction with the information they received was reported by a third of the patients and caregivers, especially patients who wanted SDM (χ2  = 7.3, P = .007), and patients with a higher MCCS (OR = 0.94, P = .038). CONCLUSION: The majority of HM patients want to be involved in SDM, but the received information is not sufficient. Patient-tailored information is urgently needed, to improve SDM.

Coping with parental cancer: web-based peer support in children.

OBJECTIVE: To investigate the use and content of web-based peer support in children coping with parental cancer. METHODS: In children aged above 12 years, 158 forum discussions on the Dutch website www.kankerspoken.nl in a time-period of 3 months were investigated. Age, gender, number of discussions, participation and main activities on the website were quantitatively assessed. Contents of the discussions were qualitatively analyzed. RESULTS: In total, 129 children and 8 adults participated on the website with an average age of 15.3 years. The majority was female (80%). On average, a child was on-line for 3 days and participated in 4 to 5 forum discussions. Main activities on the website were sharing personal experience, providing encouragement/support, providing and seeking information or advice and seeking contact outside of the website. Qualitative content analysis revealed that children regularly faced emotional problems and experienced a lack of understanding and communication in their direct environment. CONCLUSIONS: In dealing with parental cancer, children experience a variety of difficulties. This study offers a window into the use of web-based peer support by children dealing with parental cancer.

Trauma-related sequelae in individuals with a high level of dental anxiety. Does this interfere with treatment outcome?

This study assessed trauma-related sequelae of 56 highly anxious patients attending a dental fear clinic. It was also examined whether such symptomatology interferes with anxiety reduction in response to a cognitive-behavioral treatment approach. About 34 patients (59%) indicated that they had experienced one or more aversive dental events that could explain the onset of their dental anxiety. There was no difference between the dental anxiety scores of patients who reported such a background and those who did not. Severity of trauma-related symptomatology was indexed by the Impact of Event Scale (IES). The mean IES score of patients with a traumatically induced dental fear was remarkably high (33.0; SD=19.7). Furthermore, there was a strong direct relationship between severity of trauma-related symptomatology and severity of dental anxiety (shared variance was 38%). Two patients (10%) met all DSM-IV diagnostic criteria for Posttraumatic Stress Disorder (PTSD) on the basis of the Self-Rating Scale for PTSD. However, no evidence was found to suggest that either a traumatic background, or level of trauma-related symptomatology, has a negative effect on treatment outcome.

A cross-case comparison of two independent analyses of intake workers' descriptions of the process of assessment for psychotherapy.

This study compares the analyses by two clinical psychologists of material gathered during research interviews held with 18 intake workers employed by four different institutes for psychotherapy. Each intake worker responded to questions regarding their experiences with two clients during intake interviews for psychotherapy. During the research interviews, the intake workers described their impressions regarding the clients as persons, the course of the encounter with these clients as well as motives for proposing a particular type of treatment. Comparison of the two psychologists' analyses of the original material revealed remarkably similar descriptions of the structure of the intake workers' experiences and of that of their motivation for proposing several types of treatment. In line with contemporary qualitative research practices, the current comparative study may be seen as a form of interpreter triangulation.

Cancer patients' coping styles and doctor-patient communication.

Monitoring and blunting styles have become relevant concepts regarding their potential impact on patients' and doctors' behaviors. The present study aimed at investigating the relation between cancer patients' coping styles and doctor-patient communication and global affect. Coping styles were assessed by means of the Threatening Medical Situations Inventory (TMSI). Since a shortened version of the TMSI was used, the validity of this instrument was also evaluated. First, it was examined whether the two factor structure of the original TMSI could be confirmed in our version. Then, the relation between coping style and patients' preferences for information and participation in decision-making was evaluated. Second, the relation between monitoring and blunting and patients' age, sex, education, quality of life and prognosis was investigated. Finally, the relation between patients' coping styles and communicative behaviors and global affect of both patients and physicians during the initial oncological consultation was examined. Patients (N = 123) visited their gynaecologist or medical oncologist for an initial discussion of possible treatment. Patients' coping styles, socio-demographics, preference for information and participation in decision-making, quality of life and prognosis were assessed by postal questionnaire prior to the visit to the outpatient clinic. The consultation was audiotaped and analysed according to Roter's Interaction Analysis System, to identify instrumental and affective communicative behaviors of both patients and physicians. The two factor structure of the TMSI could be confirmed. A monitoring style was related to a preference for detailed information (r = 0.23) and participation in medical decision-making (r = 0.23). A monitoring style was also related to patient question-asking (r = 0.25) and patient dominance (r = 0.23). To conclude, the validity of the shortened TMSI is satisfactory. Also, cancer patients' coping styles are not related to other personal and disease characteristics. Further, a monitoring style seems to have an impact on patients' question-asking and dominance during the oncological consultation.

Experiences of parents of childhood cancer survivors: a qualitative analysis.

As the prognosis of childhood cancer improves, so does concern for the quality of survival. Because childhood cancer affects the entire family, insight is needed into the late consequences for parents and how they cope with it. For this purpose, a qualitative research method was used because this method enables a description of what it is like to live through childhood cancer in all its aspects. Parents whose child survived cancer were interviewed in depth about the late consequences of the disease. To maximize contrast in parental experience and in coping with the disease, variational sampling was used. Results indicated that parents experienced changes of a definitive and long-lasting nature as a result of cancer in their child. In spite of the child's survival, feelings of loss and perseveration of problems prevailed. To cope with late sequelae, characteristic strategies were identified including the position parents adopt a life or death perspective on the final outcome of the disease, the extent to which they express emotions, and the use of family planning and parenting behavior. Coping strategies used had not only an effect on the individual parent but also on the other family members. Parents who used coping strategies in a non-extreme way appeared to be functioning well. Implications for patient care and research are discussed.

The standard of neutrality during genetic counselling: an empirical investigation.

One of the standards for the genetic counsellor's profession is neutrality, which enables clients to decide 'in freedom' what is best for them. However, in a world with divergent and changing values, neutrality may be difficult to achieve. In order to highlight possible biases in counsellors' communications, verbal exchanges during 30 counselling sessions in a clinical genetics centre in the Netherlands were analyzed. The results show that the main background against which the attitudes of both clients and counsellors must be considered is their notion of the rapid development of medical science. Although most counsellors' attitudes clearly reflected a striving for neutrality, some did not always succeed in that: (a) they exceeded the original brief, (b) they implicitly expressed their own opinions and values, (c) they ignored client' objections and (d) they issued directives. Practical implications are discussed.

Uncertainty in the information provided during genetic counseling.

Clients seek genetic counseling in order to become informed, to make better decisions, and, if possible, to be reassured. Genetic knowledge, however, is fragmentary and incomplete and therefore it may involve more uncertainty than is desirable. In a cohort of 30 counseling sessions we studied the genetic information that was actually conveyed in terms of its predictability, controllability and novelty. With regard to predictability it emerged to be rather the rule than the exception that clients of genetic counseling were confronted with (1) an inconclusive diagnosis, (2) the chance or an estimate of the chance of the occurrence or recurrence of a genetic disorder, and (3) ambiguity about the severity of the disease. In case of bad news, possibilities for control (therapeutic or preventive measures) were minimal. In a few cases, clients were confronted with completely unexpected findings, i.e., information of high novelty. It is concluded that the high degree of uncertainty in the information provided during genetic counseling--reflecting the true state of the art--is in direct contrast to the needs of clients.

Clinical decision making in intake interviews for psychotherapy: a qualitative study.

The present paper is based on a study, carried out in an institute for psychotherapy, of intake workers' appraisals of encounters with their clients during intake interviews for psychotherapy. The main purpose of the study was to gain insight into the factors determining intake workers' perceptions of encounters with their clients. The presumed relationship between the perception of clients and the formulation of specific proposals for treatment by intake workers was an additional point of interest. Four intake workers were interviewed by the first author. Each intake worker described his or her encounter during the intake with two separate clients. A semi-structured qualitative interview format and a qualitative method of response analysis were used. A consistent relationship was found between the client's mode of selfpresentation as perceived by the intake worker and the formulation of a specific proposal for treatment. The most conspicuous distinction found was that between the proposal of either deep insight-oriented therapy or supportive therapy and the client's perceived ability or relative inability to be genuinely open emotionally, and get to the core of his or her problems as presented. Further research will be necessary to corroborate the findings described.

Symptom perception: psychological correlates of symptom reporting and illness behavior of women with medically unexplained gynecological symptoms.

Medically unexplained (gynecological) symptoms can be viewed as an indication of the somatization of negative emotions. Most studies regarding psychological correlates of medically unexplained gynecological symptoms have paid attention only to certain personality characteristics of women with these symptoms. In this study the reporting of physical symptoms and the resulting illness behavior is explained in terms of information processing or a perception process, i.e. the process by which people detect and interpret physical sensations as symptoms of illness (symptom perception). Symptom perception is in part determined by environmental characteristics and cognitive and emotional processes, such as variation in daily life, (coping with) emotional threat and the use of cognitive illness schemes. Differences in symptom perception and illness behavior of women with medically unexplained and explained gynecological symptoms, compared to women with medically explained gynecological symptoms and a control group, were established with the help of a questionnaire, containing a number of scales. As expected, women with medically unexplained gynecological symptoms had higher reports of common symptoms and sensations and showed also more other illness behavior than the other two groups. They reported less variation and more threat in daily life than the other two groups. These variables together with the use of illness schemes contributed most to symptom reporting of women with medically unexplained symptoms. It is concluded that defence against threat is probably an important determinant. Suggestions for further research and some practical implications are discussed.

Cognitive correlates of dental anxiety.

This study examined cognitive correlates of dental anxiety among 24 highly anxious patients and 17 low-anxious patients. In both groups, anxiety expectations, dental trait anxiety, and state anxiety (in the waiting room and in the dental chair) were rated. Negative cognitions and cognitive control were also assessed. It was found that dentally high-anxious patients claimed to experience more negative thoughts than those with low anxiety (p < 0.001). None of the highly anxious patients reported relatively few negative cognitions, and none of the patients in the low-anxiety group reported relatively numerous negative cognitions. While patients from both groups reported that cognitive control declined with the imminence of treatment, highly anxious patients were found to have less control over their negative thoughts (p < 0.001). A series of stepwise regression analyses revealed that both the number of negative cognitions and perceived cognitive control accounted for 75% of the variance in dental trait anxiety. The results of the present study suggest that cognitive activities, such as negative thinking (catastrophizing) and cognitive control, are important moderators of dental anxiety.

The fear questionnaire. Some data on validity, reliability and layout.

In order to assess some psychometric properties of Marks & Mathews' (1979) short Fear Questionnaire, a Dutch translation of this form was administered to 143 phobic outpatients: 100 women and 43 men. There was a special interest in assessing validity by comparing the scores of agoraphobics, social phobics and simple phobics. The findings were that all scales have sufficient internal consistency, although the Total Phobia scale does not seem to add meaningful information to its subscales. Most scales are significantly related to neuroticism, and the Social Phobia subscale is strongly related to social anxiety. The Agoraphobia and Social Phobia subscales discriminate between categories of phobics in the expected way. For the Blood/Injury subscale the relevant comparisons could not be made. The data presented in this study can be used to develop FQ norms for phobic patients.