Effects on patient-reported outcomes of "Screening of Distress and Referral Need" implemented in Dutch oncology practice.

PURPOSE: This study investigated the effect of the "Screening for Distress and Referral Need" (SDRN) process (completing a screening instrument; patient-caregiver discussion about the patient's responses, regardless of distress level, and possible referral to specialized care), implemented in Dutch oncology practice on patient-reported outcomes (PROs). METHODS: A non-randomized time-sequential study was conducted to compare two cohorts. Cohort 1 respondents (C1) were recruited before and cohort 2 respondents (C2) after SDRN implementation in nine Dutch hospitals. Participants completed the EORTC-QLQ-C30, HADS, Patient Satisfaction Questionnaire-III, and the Distress Thermometer and Problem List (DT&PL). Descriptive analyses and univariate tests were conducted. RESULTS: C2 respondents (N = 422, response = 54%) had significantly lower mean scores on the practical (t = 2.3; p = 0.02), social (t = 2.3; p = 0.03), and emotional PL domains (t = 2.9; p = 0.004) compared with C1 (N = 518, response = 53%). No significant differences were found on quality of life, anxiety, depression, satisfaction with care, distress level, the spiritual and physical PL domains, or on referral wish. CONCLUSIONS: After implementation of SDRN, patients report significantly fewer psychosocial (practical, social, and emotional) problems on the DT/PL but responses on the other patient-reported outcomes were comparable. These results add to the mixed evidence on the beneficial effect of distress screening. More and better focused research is needed.

Transcutaneous electrical nerve stimulation as an additional treatment for women suffering from therapy-resistant provoked vestibulodynia: a feasibility study.

INTRODUCTION: The current approach to women with provoked vestibulodynia (PVD) comprises a multidimensional, multidisciplinary therapeutic protocol. As PVD is considered to be a chronic pain disorder, transcutaneous electrical nerve stimulation (TENS) can be used as an additional therapy for women with otherwise therapy-resistant PVD. AIMS: The aims of this study were to evaluate whether TENS has a beneficial effect on vulvar pain, sexual functioning, and sexually-related personal distress in women with therapy-resistant PVD and to assess the effect of TENS on the need for vestibulectomy. METHODS: A longitudinal prospective follow-up study was performed on women with therapy-resistant PVD who received additional domiciliary TENS. Self-report questionnaires and visual analog scales (VASs) were completed at baseline (T1), post-TENS (T2), and follow-up (T3). MAIN OUTCOME MEASURES: Vulvar pain, sexual functioning, and sexually-related personal distress were the main outcome measures. RESULTS: Thirty-nine women with therapy-resistant PVD were included. Mean age was 27 ± 5.6 years (range: 19 to 41); mean duration between TENS and T3 follow-up was 10.1 ± 10.7 months (range: 2 to 32). Vulvar pain VAS scores directly post-TENS (median 3.4) and at follow-up (median 3.2) were significantly (P < 0.01) lower than at baseline (median 8.0). Post-TENS, sexual functioning scores on the Female Sexual Functioning Index questionnaire had improved significantly (P = 0.2); these scores remained stable at follow-up. Sexually-related personal distress scores had improved significantly post-TENS (P = 0.01). Only 4% of the women who received TENS needed to undergo vestibulectomy vs. 23% in our previous patient population. CONCLUSION: The addition of self-administered TENS to multidimensional treatment significantly reduced the level of vulvar pain and the need for vestibulectomy. The long-term effect was stable. These results not only support our hypothesis that TENS constitutes a feasible and beneficial addition to multidimensional treatment for therapy-resistant PVD, but also the notion that PVD can be considered as a chronic pain syndrome.

Effects of communication styles on marital satisfaction and distress of parents of pediatric cancer patients: a prospective longitudinal study.

OBJECTIVE: The aim of this study was to examine the longitudinal effects of communication styles on marital satisfaction and distress of parents of children treated for cancer. METHODS: Marital dissatisfaction (Maudsley Marital Questionnaire), intimacy, avoidance, destructive and incongruent communication (Communication Skills Inventory) and psychological distress (General Health Questionnaire) were assessed in 115 parents of pediatric cancer patients shortly after diagnosis (T1) and 5 years later (T2). RESULTS: Only mothers' marital dissatisfaction increased significantly over time. No gender differences in dissatisfaction were found. Mothers had a significantly higher lack of intimacy score than fathers. All T1 communication styles were significantly univariately related to fathers' and mothers' T2 marital dissatisfaction, while not to T2 distress. Mothers' T1 marital dissatisfaction accounted for 67% and fathers' for 12% in the explained variance of T2 dissatisfaction. T1 destructive communication uniquely affected fathers' T2 marital dissatisfaction and T1 avoidant communication that of mothers. CONCLUSIONS: Five years after cancer diagnosis in their children, the quality of parents' marital relationships seemed largely unchanged. Parents' use of communication skills at diagnosis appeared to have limited effect on their marital dissatisfaction and no effect on their distress 5 years later. While avoidant communication seemed indicative of mothers' marital distress, fathers' seemed affected by destructive communication.

How to attain expertise in clinical communication?

Several factors complicate the attainment of expertise in clinical communication. Medical curricula and postgraduate training insufficiently provide the required learning conditions of deliberate practice to overcome these obstacles. In this paper we provide recommendations for learning objectives and teaching methods for the attainment of professional expertise in patient education. Firstly, we propose to use functional learning objectives derived from the goals and strategies of clinical communication. Secondly, we recommend using teaching and assessment methods which: (1) contain stimulating learning tasks with opportunities for immediate feedback, reflection and corrections, and (2) give ample opportunity for repetition, gradual refinements and practice in challenging situations. Video-on-the-job fits these requirements and can be used to improve the competency in patient education of residents and medical staff in clinical practice. However, video-on-the-job can only be successful if the working environment supports the teaching and learning of communication and if medical staff which supervises the residents, is motivated to improve their own communication and didactic skills.

Coping and its effect on psychological distress of parents of pediatric cancer patients: a longitudinal prospective study.

OBJECTIVE: This prospective 5-year longitudinal study examined the use of coping styles of fathers and mothers of pediatric cancer patients over time and the prospective effects of coping on distress. METHODS: Psychological distress (General Health Questionnaire) and the use of seven coping styles (Utrecht Coping List: active problem focussing, palliative and passive reaction patterns, avoidance, social support seeking, expression of emotions, and comforting cognition) were assessed in 115 parents shortly after diagnosis, 6 and 12 months, and 5 years later. RESULTS: At diagnosis, parents' use of coping styles did not differ from the norm population except more frequent use of support seeking. No significant change over time was found in a palliative reaction pattern. Support seeking declined and emotional expression increased linearly, whereas use of the remaining coping styles decreased, followed by an increase. At 5 years, parents' use differed from the norm population only in less use of expression of emotions and comforting cognitions. Initial coping use significantly predicted fathers' future distress at 6 and 12 months but not at 5 years. This was not found for mothers. Changes in coping were significantly associated with both parents' changes in distress only during the first year. Increased passive reaction pattern and social support seeking were the risk factors for mothers. Increased avoidance, a passive reaction pattern, expression of emotions, and decreased active problem focussing formed the risk factors for fathers. CONCLUSION: Findings illustrate that coping seems to be a situation-specific process and that coping predictors vary as a function of parents' gender.

Key factors in paediatric organ and tissue donation: an overview of literature in a chronological working model.

There is a growing shortage of size-matched organs and tissues for children. Although examples of substandard care are reported in the literature, there is no overview of the paediatric donation process. The aim of the study is to gain insight into the chain of events, practices and procedures in paediatric donation. Method; a survey of the 1990-2010 literature on paediatric organ and tissue donation and categorization into a coherent chronological working model of key events and procedures. Studies on paediatric donation are rare. Twelve empirical studies were found, without any level I or level II-1 evidence. Seventy-five per cent of the studies describe the situation in the United States. Literature suggests that the identification of potential donors and the way in which parental consent is requested may be substandard. We found no literature discussing best practices. Notwithstanding the importance of looking at donation care as an integrated process, most studies discuss only a few isolated topics or sub-processes. To improve paediatric donation, more research is required on substandard factors and their interactions. A chronological working model, as presented here, starting with the identification of potential donors and ending with aftercare, could serve as a practical tool to optimize paediatric donation.

Children as donors: a national study to assess procurement of organs and tissues in pediatric intensive care units.

A shortage of size-matched organs and tissues is the key factor limiting transplantation in children. Empirical data on procurement from pediatric donors is sparse. This study investigated donor identification, parental consent, and effectuation rates, as well as adherence to the national protocol. A national retrospective cohort study was conducted in all eight Dutch pediatric intensive care units. Records of deceased children were analyzed by an independent donation officer. Seventy-four (11%) of 683 deceased children were found to be suitable for organ donation and 132 (19%) for tissue donation. Sixty-two (84%) potential organ donors had been correctly identified; the parental consent and effectuation rate was 42%. Sixty-three (48%) potential tissue donors had been correctly identified; the parental consent and effectuation rate was 27%. Correct identification increased with age (logistic regression, organs: P = .024; tissues: P = .011). Although an overall identification rate of 84% of potential organ donors may seem acceptable, the variation observed suggests room for improvement, as does the overall low rate of identification of pediatric tissue donors. Efforts to address the shortage of organs and tissues for transplantation in children should focus on identifying potential donors and on the reasons why parents do not consent.

Children's opinions about organ donation: a first step to assent?

BACKGROUND: Parents have to decide about organ donation after the death of their child. Although most parents probably would like to respect their child's intentions, parents often are not aware of their child's wishes. This requires insight into children's opinions about donation. METHODS: An internet survey that investigated whether Dutch children in the age range of 12 through 15 years had heard about organ donation, what their opinions were on donation and whether the topic had been discussed at home. Questionnaire response rate 38%. RESULTS: Around 99% of 2016 responders had heard about organ donation and about the possibility of becoming a donor, 75% preferred to decide for themselves about donation, 43% had discussed organ donation more than once at home, 66% were willing to donate. The willingness to donate was positively associated with age and socio-economic status. CONCLUSION: This survey indicates that these children at 12 through 15 years of age are capable and willing to think about organ donation. Thought should be given about how to raise awareness and how to enable parents and children to develop some sort of health literacy concerning the concept of organ donation. Children and their parents should be given adequate opportunities to receive appropriate information, suited to their psychological and moral developmental status.

Internists' ambivalence toward their role in health counseling and promotion: A qualitative study on the internists' beliefs and attitudes.

Crucial to its success is that physicians enhance their competence in Lifestyle Medicine and take on their role as Health Advocates in Health Counseling and Promotion (HC&P). However, studies on patients' views of lifestyle counseling in clinical practice demonstrate that many patients neither perceived a need to adopt a healthy lifestyle nor having had any discussion with their physician about their lifestyle. This study is part of a participatory action research project focusing on identifying areas of improvement for health promotion in the practice of internists. Within this project, we interviewed 28 internists from six different subspecialties of an academic medical center in the Netherlands. This study aims to gain insight into how internists understand their role in HC&P by a qualitative analysis of their beliefs and attitudes in the interview data. Participants claimed that promoting a healthy lifestyle is important. However, they also reflected a whole system of beliefs that led to an ambivalent attitude toward their role in HC&P. We demonstrate that little belief in the success of HC&P nurtured ambivalence about the internists' role and their tasks and responsibilities. Ambivalence appeared to be reinforced by beliefs about the ability and motivation of patients, the internists' motivational skills, and the patient-doctor relationship, and by barriers such as lack of time and collaboration with General Practitioners. When participants viewed HC&P as a part of their treatment and believed patients were motivated, they were less ambivalent about their role in HC&P. Based on our data we developed a conceptual framework that may inform the development of the competences of the Health Advocate role of internists in education and practice.

Adolescents' emotional reactions to parental cancer: effect on emotional and behavioral problems.

OBJECTIVES: We examined adolescents' emotional reactions to parental cancer and explored relationships between emotional reactions and adolescents' emotional/behavioral problems. METHODS: Two studies were performed: retrospective and prospective. A total of 221 adolescents (105 sons) of 138 patients (retrospective) and 70 adolescents (31 sons) of 70 patients (prospective) participated. Adolescents reported on cancer-specific uncertainty, loneliness, helplessness and positive emotions (Situation-Specific Emotional Reactions Questionnaire), and filled in the Youth Self-Report once retrospectively during the period of 1-5 year(s) after diagnosis and three times prospectively during the first year (4 months post-diagnosis, 6 and 12 months after T1). RESULTS: Emotional reactions were similar between pro- and retrospective studies. Prospectively, uncertainty and helplessness decreased over time. Uncertainty and loneliness related significantly to adolescents' dysfunction (prospective and retrospective). Relationships between emotions and functioning were stronger and more often significant for daughters. Prospectively, adolescents' post-diagnosis emotional reactions were largely unrelated to later functioning. CONCLUSIONS: Uncertainty and loneliness related to adolescents' emotional and behavioral problems. Daughters' emotions seem more strongly related to functioning than sons'.

Psychophysiological assessment of sexual function in women after radiotherapy and total mesorectal excision for rectal cancer: a pilot study on four patients.

INTRODUCTION: The potential contribution of psychological and anatomical changes to sexual dysfunction in female patients following short-term preoperative radiotherapy (5 x 5 Gy) and total mesorectal excision (TME) is not clear. Aim. In this study we assessed female sexual dysfunction in patients who underwent radiotherapy and TME for rectal cancer. MAIN OUTCOME MEASURES: Genital arousal was assessed using vaginal videoplethysmography. METHODS: Sexual functioning was examined in four patients who had rectal cancer and underwent radiotherapy and TME. All investigations were done at least 15 months after treatment. The results were compared with an age-matched group of 18 healthy women. RESULTS: The patients and healthy controls showed comparable changes in vaginal vasocongestion during sexual arousal, though three out of four patients showed a lower mean spectral tension (MST) of the vaginal pulse compared with healthy controls. Subjective sexual arousal was equivalent between the two groups. CONCLUSIONS: In this study the changes of genital and subjective sexual arousal after erotic stimulus condition between patients and healthy controls were not different, though lower MST of the vaginal pulse was found in three out of four patients compared with healthy women. Additional work, however, must be performed to clarify the mechanisms of sexual dysfunction following treatment of rectal cancer.

[The bad-news consultation: 10 tips]. / Het slechtniewsgesprek: 10 tips.

A bad-news conversation often evokes strong emotions in a patient and those close to her or him. These emotions may inhibit mental processing of additional information. During a bad-news conversation, you should therefore not only provide information, but also help your patient to cope with these emotions and provide support. All this is necessary if your patient is to come to well-considered decisions in consultation with you.

The relationship between reciprocity and burnout in Dutch medical residents.

OBJECTIVE: This study examined reciprocity in medical residents' relationships with supervisors, fellow residents, nurses and patients, and associations between reciprocity and burnout. Furthermore, we considered if a discrepancy between the perceived and preferred levels of reciprocity influenced the level of burnout complaints. METHODS: In 2003, self-report questionnaires were sent to the homes of all 292 medical residents at the University Medical Centre Groningen (UMCG), Groningen, the Netherlands. Reciprocity was measured with a single-item reciprocity scale based on the Hatfield Global Measure of Equity Scale. The Utrecht Burn-Out Scale (UBOS/MBI-HHS) was used to measure burnout. RESULTS: A total of 158 residents participated in the study. Those who reported under-benefiting in the relationship with supervisors perceived significantly more emotional exhaustion and depersonalisation than those who perceived a reciprocal relationship. Residents who indicated that they over-benefited in the relationship with nurses reported more emotional exhaustion than residents who perceived a reciprocal relationship and less personal accomplishment than residents who perceived a reciprocal relationship or under-benefit. No differences on the burnout subscales were found between residents who perceived their relationships with patients and fellow residents to be reciprocal and those who considered they under- or over-benefited. The greater the discrepancy between perceived and preferred reciprocity in the relationship with the supervisor, the more emotional exhaustion residents reported. CONCLUSIONS: Perceptions of reciprocity in relationships with supervisors and nurses had particular influence on the level of burnout complaints among residents. The discrepancy between the impacts of perceived and preferred reciprocity on burnout was negligible and the only significant relationship to emerge concerned that with emotional exhaustion.

Internists' dilemmas in their interactions with chronically ill patients; A comparison of their interaction strategies and dilemmas in two different medical contexts.

BACKGROUND: Internists appear to define productive interactions, key concept of the Chronic Care Model, as goal-directed, catalyzed by achieving rapport, and depending on the medical context: i.e. medically explained symptoms (MES) or medically unexplained symptoms (MUS). OBJECTIVE: To explore internists' interaction strategy discourses in the context of MES and MUS. METHODS: We interviewed twenty internists working in a Dutch academic hospital, identified relevant text fragments in the interview transcripts and analyzed the data based on a discourse analysis approach. RESULTS: We identified four interaction strategy discourses: relating, structuring, exploring, and influencing. Each was characterized by a dilemma: relating by 'creating nearness versus keeping distance'; structuring by 'giving space versus taking control'; exploring by 'asking for physical versus psychosocial causes'; and influencing by 'taking responsibility versus accepting a patient's choice. The balance sought in these dilemmas depended on whether the patient's symptoms were medically explained or unexplained (MES or MUS). Towards MUS the internists tended to maintain greater distance, take more control, ask more cautiously questions related to psychosocial causes, and take less responsibility for shared decision making. DISCUSSION AND CONCLUSIONS: Adopting a basic distinction between MES and MUS, the internists in our study appeared to seek a different balance in each of four rather fundamental clinical dilemmas. Balancing these dilemmas seemed more difficult regarding MUS where the internists seemed more distancing and controlling, and tended to draw on their medical expertise. Moving in this direction is counterproductive and in contradiction to guidelines which emphasize that MUS patients warrant emotional support requiring a shift towards interpersonal, empathic communication.

Cancer patients' experiences with and opinions on the process 'Screening of Distress and Referral Need' (SDRN) in clinical practice: A quantitative observational clinical study.

OBJECTIVE: This observational clinical study investigated patients' experiences with and opinions on the Dutch 'Screening of Distress and Referral Need' (SDRN) process implemented in oncology practice. Insight into these can guide improvement of the SDRN process. METHODS: Patients from hospitals that had implemented SDRN for at least a year completed questions on experiences with essential SDRN process steps (1: completion of the Distress Thermometer and Problem List as screening instrument (DT&PL), 2: information on SDRN+DT&PL, 3: information on referral options, 4: discussing DT&PL responses, 5: referral when needed), and on opinions about SDRN and DT&PL. Descriptive and univariate analyses were conducted. RESULTS: Of the 498 participants (response = 54%), 81% completed a DT&PL, of whom 86-87% was exposed to steps 2-3 and 76% discussed responses; only three needing care were not offered referral. Sixty-one percent encountered all SDRN steps and 78% would recommend SDRN to others. Recommending SDRN is related to more frequent DT&PL completion (t = -2.5; p≤0.01), receipt of information on SDRN+DT&PL and referral options (X2 = 4.9; p≤0.05 and X2 = 5.9; p≤0.05 respectively), discussion of responses (X2 = 10.2; p≤0.001), and fuller exposure to SDRN process steps (X2 = 14.8; p≤0.01). Percentages (strongly) agreeing were highest on the DT&PL being useful (90%) and suitable (88%), and lowest on burdensome (31%) and time-consuming (28%). CONCLUSION: The majority of participating patients encountered the steps of the SDRN process considered essential, with 3/5 having encountered all steps. Referral is largely targeted to patients' need. Patients' perceived benefit of SDRN increases with fuller exposure to all process steps. Therefore, improvements, particularly in DT&PL completion and discussion of responses should be made.

Sexual functioning of people with rheumatoid arthritis: a multicenter study.

The objective of this study is to compare men and women with rheumatoid arthritis (RA) to controls regarding sexual motivation, activity, satisfaction, and specific sexual problems, and to determine the correlation of physical aspects of the disease with sexual functioning. Questionnaire for screening sexual dysfunctions (QSD), self-constructed questionnaire on experienced distress with joints during sexual activities, arthritis impact measurements scales 2 (AIMS2), and the modified disease activity score 28 (DAS 28) were the methods used. RA patients were recruited from a registration base in three Dutch hospitals. Controls were age and sex matched healthy volunteers. A completed questionnaire was sent back by 271 patients (response 23%). Forty-seven men and 93 women were clinically examined to obtain the DAS 28. Male patients felt less sexual desire, and female patients masturbated and fantasized less than controls. Differences in satisfaction were not found. Male and female patients did not experience more sexual problems than controls. Among the women, correlations were predominantly found between age and sexual motivation and activities, among the men between physical health and sexual problems. Up to 41% of the men (4-41 depending on the joints), and up to 51% of the women (10-51 depending on the joints) have troubles with several joints during sexual activities. Medications influencing ejaculation in men correlated with distress with orgasm. Conclusions are that patients are less sexually active than controls and a considerable number of both male and female patients have trouble with their joints during sexual activities. However, patients do not differ from controls regarding sexual satisfaction. Physiological changes due to RA are apparently independent from those on psychological level. It is argued that sexual satisfaction also depends on personal and social factors. In men, physical health and disease activity are more related with sexual problems than in women.

Education on organ donation and transplantation in primary school; teachers' support and the first results of a teaching module.

Organ and tissue donation can also involve children. Because of its sensitivity, this topic requires careful decision making. Children have the ability to carefully reflect on this subject and enjoy participating in family discussions about it. Therefore, what children need is proper information. When schools are used to educate children about this subject, information about teacher support for this type of lesson along with its effects on the depth of family discussions is important. METHODS: A questionnaire was sent to all 7,542 primary schools in the Netherlands. The goal was to gather information on teachers' perspectives about a neutral lesson devoted to organ and tissue donation, and also on the best age to start giving such a lesson. The second part of our study examined the effects of a newly developed lesson among 269 primary school pupils. The school response was 23%. Of these, 70% were positive towards a lesson; best age to start was 10-11 years. Pupils reported 20% more family discussions after school education and enjoyed learning more about this topic. There is significant support in primary schools for a school lesson on organ and tissue donation. Educational programs in schools support family discussions.

Supervisors' and residents' patient-education competency in challenging outpatient consultations.

OBJECTIVES: We compared supervisors' and residents' patient-education competency in challenging consultations in order to establish whether supervisors demonstrate sufficient patient-education competency to act credibly as role models and coaches for residents. METHODS: All consultations conducted at one, two, or three of the outpatient clinics of each of the participating physicians were videoed. Each participant selected two challenging consultations from each clinic for assessment. We assessed their patient-education competency using the CELI instrument, we calculated net consultation length for all videoed consultations and we measured patient opinion about the patient education received using a questionnaire. RESULTS: Forty-four residents and fourteen supervisors participated in the study. They selected 230 consultations for assessment. On average, supervisors and residents demonstrated similar patient-education competency. Net consultation length was longer for supervisors. Patient opinion did not differ between supervisors and residents. CONCLUSIONS: Supervising consultants generally do not possess sufficient patient-education competency to fulfill their teaching roles in workplace-based learning that is aimed at improving residents' patient-education competency. PRACTICE IMPLICATIONS: Not only residents but also supervising consultants should improve their patient-education competency. Workplace-based learning consisting of self-assessment of and feedback on videoed consultations could be useful in attaining this goal.

Male sexuality after cancer treatment--needs for information and support: testicular cancer compared to malignant lymphoma.

Testicular cancer (TC) as well as malignant lymphoma (ML), both have nowadays an excellent prognosis. However, both types of cancer may be diagnosed at young adulthood and patients may experience sexual concerns. In this article the need for information and support concerning sexuality will be explored, and the traumatic impact of cancer diagnosis with respect to this will be considered. A total of 264 patients with testicular cancer, median age 36 (S.D. 9.7) years, and 50 patients with malignant lymphoma, median age 42 (S.D. 11.7) years returned a questionnaire concerning sexual functioning; four items assessed the need for information or support concerning sexuality, at diagnosis and at follow-up. It appeared that more than half of the patients with testicular cancer reported a lack of information and support concerning sexuality during treatment; 67% of them still had a need for information at follow-up. These rates were significantly lower for patients with malignant lymphoma. Especially patients with testicular cancer who suffered sexual dysfunction reported extremely high needs for information and support. According to these findings it can be concluded that more attention should be paid to the doctor-patient communication with respect to sexual concerns in general, and especially where it concerns patients with testicular cancer.