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.

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.

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.

Sexual health problems and associated help-seeking behavior of people with physical disabilities and chronic diseases.

The aim of this study was to investigate help-seeking behavior in relation to sexual problems among people with a disease or an impairment, as well as determining factors that promote people to seek professional sexological help. A total of 341 respondents (224 men, 117 women) participated. Approximately 50% wanted professional help with finding a sexual partner and sexual adjustment problems. Further, approximately 40% wanted professional help for problems in their sexual relationship, practical sexual problems, and the inability to enjoy their sexuality. In total, two third considered contacting a health care professional of which 35% had indeed had contact with a health care professional. Only a third of those evaluated these contacts as positive. To identify factors associated with the respondent's participation in psychosexual therapy, we performed a logistic regression analyses with a participation in a psychosexual intervention as the dependent variable. Sexual dissatisfaction was the strongest predictor of participation in psychosexual therapy. Furthermore, people who indicated that they wanted professional help for their sexual problems and people who had already discussed sexuality issues with a health care professional were more likely to participate. Disease and demographic characteristics did not influence one's decision to participate.

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.