Search

Introduction: An understanding of the long-term psychosocial impact of paediatric haematopoietic stem cell transplantation (HSCT) for nonmalignant diseases is needed to optimize pre-HSCT counselling, supportive care and long-term follow-up programmes after HSCT for this group of patients and caregivers. Methods: This qualitative study included 14 patients who underwent transplantation for a nonmalignant disease during childhood. In-depth interviews were held online to explore patients' perspectives on the long-term psychosocial impact of HSCT on their lives. The results were analysed based on the Grounded Theory approach. Results: Patients' median age at the time of the interview was 19 years (range: 14-49), and the median years after HSCT was 12 years (range: 3-33). Four main themes were identified: (1) doing okay, (2) experiencing persistent involvement with healthcare services, (3) influence on relationships with loved ones and (4) impact on the patient's life course. Subthemes extracted were doing okay, feeling of being cured, health limitations, sense of vulnerability, ongoing connection to the hospital, acceptance, friendship, family relations, development of own identity, not taking life for granted, social development, impact on (school) career and thinking about the future. Conclusions: Patients reported active coping strategies and resilience after this high-impact treatment. The data highlight the need for patient-adjusted supportive care, indicating more need for supportive care in the long-term outpatient clinic. Patient Contribution This study included patients as participants. Caregivers were approached if patients were below a certain age. Additionally, preliminary results were presented during a patient conference day.

Aims: To analyse the performance of a Shared Decision Making (SDM) intervention, we assessed perceived and experienced SDM in General Practitioners (GPs) and patients with type 2 diabetes (T2DM).Methods: Cluster-Randomised Controlled Trial (cRCT) testing the effect of a decision aid. Opinions and experienced role regarding SDM were assessed in 72 patients and 18 GPs with the SDM-Q-9 (range 0-45) and Control Preferences Scale (CPS, 0-5), and observed SDM with the OPTION5 (0-20). SDM at baseline was compared to 24 months' follow-up using paired t-tests.Results: At baseline, perceived levels of SDM did not significantly differ between GPs and patients with T2DM (difference of 2.3, p = 0.24). At follow-up, mean patients' perceived level of SDM was 7.9 lower compared to baseline (p < 0.01), whereas GPs' opinions had not changed significantly. After both visits, mean CPS scores differed significantly between patients and GPs. OPTION5 scores ranged between 6 and 20.Conclusion: Patients and GPs perceived similar baseline levels of SDM. Two years later, patients perceived less SDM, while GPs did not change their opinion. SDM was appropriate immediately after training, but perhaps GPs fell back in old habits over time. We recommend repeated SDM training.

ObjectivesTo identify what patient-related characteristics have been reported to be associated with the occurrence of shared decision-making (SDM) about treatment.DesignScoping review.Eligibility criteriaPeer-reviewed articles in English or Dutch reporting on associations between patient-related characteristics and the occurrence of SDM for actual treatment decisions.Information sourcesCOCHRANE Library, Embase, MEDLINE, PsycInfo, PubMed and Web of Science were systematically searched for articles published until 25 March 2019.ResultsThe search yielded 5289 hits of which 53 were retained. Multiple categories of patient characteristics were identified: (1) sociodemographic characteristics (eg, gender), (2) general health and clinical characteristics (eg, symptom severity), (3) psychological characteristics and coping with illness (eg, self-efficacy) and (4) SDM style or preference. Many characteristics showed no association or unclear relationships with SDM occurrence. For example, for female gender positive, negative and, most frequently, non-significant associations were seen.ConclusionsA large variety of patient-related characteristics have been studied, but for many the association with SDM occurrence remains unclear. The results will caution often-made assumptions about associations and provide an important step to target effective interventions to foster SDM with all patients.

Objectives: We have developed two Dutch questionnaires to assess the shared decision-making (SDM) process in oncology; the iSHAREpatient and iSHAREphysician. In this study, we aimed to determine: scores, construct validity, test-retest agreement (iSHAREpatient), and inter-rater (iSHAREpatient-iSHAREphysician) agreement.Methods: Physicians from seven Dutch hospitals recruited cancer patients, and completed the iSHAREphysician and SDM-Questionnaire-physician version. Their patients completed the: iSHAREpatient, nine-item SDM-Questionnaire, Decisional Conflict Scale, Combined Outcome Measure for Risk communication And treatment Decision-making Effectiveness, and five-item Perceived Efficacy in Patient-Physician Interactions. We formulated, respectively, one (iSHAREphysician) and 10 (iSHAREpatient) a priori hypotheses regarding correlations between the iSHARE questionnaires and questionnaires assessing related constructs. To assess test-retest agreement patients completed the iSHAREpatient again 1-2 weeks later.Results: In total, 151 treatment decision-making processes with unique patients were rated. Dimension and total iSHARE scores were high both in patients and physicians. The hypothesis on the iSHAREphysician and 9/10 hypotheses on the iSHAREpatient were confirmed. Test-retest and inter-rater agreement were >.60 for most items.Conclusions: The iSHARE questionnaires show high scores, have good construct validity, substantial test-retest agreement, and moderate inter-rater agreement.Practice implications: Results from the iSHARE questionnaires can inform both physician- and patient-directed efforts to improve SDM in clinical practice. (C) 2021 The Author(s). Published by Elsevier B.V. CC_BY_4.0

Background Informing patients with cancer about the possible implications of prospective treatment is a crucial yet challenging task. Unfortunately, patients’ recall of medical information is generally poor and their information needs are not met. Effective information giving entails that oncologists help patients understand and recall the implications of their treatment, meanwhile fostering a trusting physician-patient relationship. Communication strategies that are often suggested to be effective are structuring and tailoring (cognition-oriented) but also are oncologists’ expressions of caring or empathy (affect-oriented). Objective The aim of this study is to provide evidence concerning the pathways linking physician communication to (improved) consultation outcomes for patients. More specifically, the aim is to determine the effects of information structuring and information tailoring, combined with physician caring, on information recall, satisfaction with information, and trust in the physician (primary objective) and on symptom distress (secondary objective). Methods A randomized controlled trial, systematically testing the effects of information structuring and information tailoring, each combined with caring, in 2 video-vignette experiments (2×2 and 2×2×2 design). Using an online survey platform, participants will be randomly allocated (blinded) to 1 of 12 conditions in which they are asked to view a video vignette (intervention) in which an oncologist discusses a treatment plan for malignant lymphoma with a patient. The independent variables of interest are systematically varied across conditions. The outcome measures are assessed in a survey, using validated instruments. Study participants are (former) patients with cancer and their relatives recruited via online panels and patient organizations. This protocol discusses the trial design, including the video-vignette design, intervention pretesting, and a pilot study. Results Data collection has now been completed, and preliminary analyses will be available in Spring 2019. A total of 470 participants completed the first part of the survey and were randomized to receive the intervention. Conclusions The results of the proposed trial will provide evidence concerning the pathways linking physician information, giving skills to (improved) consultation outcomes for patients. Trial Registration Netherlands Trial Register NTR6153; https://www.trialregister.nl/trial/6022 (Archived by Webcite at http://www.webcitation.org/76xVV9xC8). International Registered Report Identifier (IRRID) DERR1-10.2196/12453

To assess the occurrence of questions that foster shared decision making, in particular cancer patients' understanding of treatment decisions and oncologists' understanding of patients' priorities, during consultations in which preference-sensitive decisions are discussed. Specifically, (a) regarding patient understanding, do oncologists ask about patients' preexisting knowledge, information preferences, and understanding and do patients and companions ask about the disease and treatment, and (b) regarding patient priorities, do oncologists ask about patients' treatment- and decision-related preferences and do patients and companions ask about the decision? Audiotaped pretreatment consultations of 100 cancer patients with 32 oncologists about (neo)adjuvant treatment were coded and analyzed to document question type, topic, and initiative. The oncologists ascertained prior knowledge in 50 patients, asked 24 patients about preferred (probability) information, and invited questions from 56 patients. The oncologists asked 32 patients about treatment preferences and/or for consent. Respectively, one-third and one-fifth of patients and companions asked about treatment benefits compared with three-quarters of them who asked about treatment harms and/or procedures. It would be helpful to patients if oncologists more often assessed patients' existing knowledge to tailor their information provision. Also, patients could receive treatment recommendations that better fit their personal situation if oncologists collected information on patients' views about treatments. Moreover, by educating patients to ask about treatment alternatives, benefits, and harms, patients may gain a better understanding of the choice they have

OBJECTIVE: The purpose of this study was to replicate and extend an earlier study carried out in the UK of lay understanding of cancer-related terms in a Dutch sample, by (i) examining understanding of common terms relating to diagnosis, prognosis, and treatment and (ii) experimentally exploring the effect of medical jargon versus plain language use on individuals' perceived efficacy in interacting with oncologists, participating in medical decision making, and interpersonal trust. METHODS: One hundred ninety-four lay people completed a questionnaire assessing (i) understanding, confidence in understanding, and worry after reading 10 scenarios presenting cancer-related terms and (ii) perceived communication efficacy, decision-making efficacy, and trust following a vignette portraying an oncologist using either jargon or plain language. RESULTS: On average, participants understood a majority (6.8 ± 1.6) of cancer-related terms, yet only 2.2% understood all 10 terms correctly. Compared with incorrect understanding, correct understanding was generally related to higher confidence in understanding and to worry levels that better matched the scenarios. Language complexity did not significantly affect measures of perceived efficacy or trust. Overall confidence in understanding was significantly related to measures of perceived efficacy (p

Background Increasingly, patient decision aids and values clarification methods (VCMs) are being developed to support patients in making preference-sensitive health-care decisions. Many VCMs encourage extensive deliberation about options, without solid theoretical or empirical evidence showing that deliberation is advantageous. Research suggests that simple, fast and frugal heuristic decision strategies sometimes result in better judgments and decisions. Durand et al. have developed two fast and frugal heuristic-based VCMs. Objective To critically analyse the suitability of the 'take the best' (TTB) and 'tallying' fast and frugal heuristics in the context of patient decision making. Strategy Analysis of the structural similarities between the environments in which the TTB and tallying heuristics have been proven successful and the context of patient decision making and of the potential of these heuristic decision processes to support patient decision making. Conclusion The specific nature of patient preference-sensitive decision making does not seem to resemble environments in which the TTB and tallying heuristics have proven successful. Encouraging patients to consider less rather than more relevant information potentially even deteriorates their values clarification process. Values clarification methods promoting the use of more intuitive decision strategies may sometimes be more effective. Nevertheless, we strongly recommend further theoretical thinking about the expected value of such heuristics and of other more intuitive decision strategies in this context, as well as empirical assessments of the mechanisms by which inducing such decision strategies may impact the quality and outcome of values clarification.

Item does not contain fulltext - Adjuvant treatments can be added to primary curative cancer treatments to increase the probability of survival. However, these treatments have side effects.- Research into what additional probability of survival cancer patients require from an adjuvant treatment before they consider it worthwhile, has been carried out in hypothetical situations.- The published literature on this subject shows that the additional benefit which patients expect is small. Yet, variation in patient preferences within studies is large.- Preferences regarding additional benefit are not consistently associated with patient socio-demographic or disease characteristics.- It is very likely that new patients who face the choice of adjuvant treatment will greatly differ from each other in the benefit that they require from it.- In order to give individualized recommendations, specialists need to ask the patient which benefits and disadvantages he or she considers to be important.

Little is known about the relation between communication during cancer genetic counseling and outcome. We assessed associations between counselor-counselee communication and counselee satisfaction, cognitions, anxiety, and fulfillment of major needs, corrected for pre-visit levels as appropriate. In total 171 consecutive new counselees, mainly referred for breast or colon cancer, received pre- and post-visit questionnaires assessing needs/fulfillment, knowledge, perceived control (PPC), anxiety (STAI), and satisfaction. Initial visits were videotaped and counselor eye gaze was recorded. Verbal communication was rated by Roter Interaction Analysis System (RIAS). Asking more medical questions was associated with lower satisfaction levels. Receiving more medical information was related to higher correct knowledge scores, higher reported fulfillment of some needs, and unrelated to perceptions of control. Receiving more psychosocial information and longer counselor eye gaze were related to higher anxiety scores. Longer visits were related to higher correct knowledge scores. Providing medical information appears the most powerful communication aspect to increase counselee satisfaction and address needs. More research is needed on how to address adequately (emotional) needs and increase feelings of control.

Objectives: To assess the influence of a 1-day individual video-feedback training for cancer genetic counselors on the interaction during initial visits. Feedback was intended to help counselors make counselees’ needs more explicit and increase counselors’ sensitivity to these. Methods: In total 158 counselees, mainly referred for breast or colon cancer and visiting 1 of 10 counselors, received a pre- and post-visit questionnaire assessing needs (fulfillment). Visits were videotaped, counselor eye gaze was assessed, and verbal communication was analyzed by Roter Interaction Analysis System (RIAS) adapted to the genetic setting. Halfway the study, five counselors were trained. Results: Trained counselors provided more psychosocial information, and with trained counselors emotional consequences of DNA-testing was more often discussed. Counselees seen by a trained counselor considered their need for explanations on (emotional) consequences of counseling as better fulfilled. Unexpectedly, counselees’ contribution to the interaction was smaller with trained counselors. Conclusion: Feedback appeared to result in greater emphasis on psychosocial issues, without lengthening the visit. However, counselors did not become more verbally supportive in other ways than by providing information. Practice implications: A 1 day individual training appears effective to some extend; increased opportunities for watching and practicing behavioral alternatives and arranging consolidating sessions may improve training results.

The fulfillment of counselees’ expectations in cancer genetic counseling and how this affects the outcome of counseling have received little attention so far. This study investigates how the initial consultation influences counselees’ cognitions and anxiety, whether counselors address counselees’ prior needs and preferences during the visit, and whether addressing needs is associated with a more positive outcome of the visit. One hundred twenty-eight affected and unaffected counselees from families with no known mutation, who were seen by one of fourteen counselors, participated. Pre- and post-visit questionnaires assessed correct knowledge about hereditary breast or colon cancer, perceived personal control (PPC), anxiety (STAI), risk perceptions, and(fulfillmentof)needs (QUOTE-geneca). Results demonstrated a pre- to post-visit significant increase in correct knowledge and PPC, and a significant decrease in STAI and risk perceptions. However, marked overestimation of risks persisted. Decrease in STAI and risk perceptions was significantly less pronounced in affected versus unaffected counselees. The majority of counselees were (very) satisfied about the extent to which their needs were addressed, albeit about one-fifth were not regarding emotional matters and explanations about their own cancer risk. Finally, the better counselees perceived their needs to be fulfilled, the significantly higher their PPC and the significantly lower their STAi scores were. Findings suggest that both unaffected and affected counselees should becounseled carefully. Also, a more effective service may be attained if counselors pay more attention to counselees’ emotional needs and detail more inheritance and penetrance of mutated genes in relation to counselees’ family history.

This study sought to describe counsellor–counselee interaction during initial cancer genetic counselling consultations and to examine whether the communication reflects counselees’ previsit needs. A total of 130 consecutive counselees, referred mainly for breast or colon cancer, completed a questionnaire before their first appointment at a genetic clinic. Their visit was videotaped. Counselee and counsellor verbal communications were analysed and initiative to discuss 11 genetics-specific conversational topics was assessed. The content of the visit appeared relatively standard. Overall, counselees had a stronger psychosocial focus than counsellors. Counsellors directed the communication more and initiated the discussion of most of the topics assessed. Counselees did not appear to communicate readily in a manner that reflected their previsit needs. Counsellors provided more psychosocial information to counselees in higher need for emotional support, yet did not enquire more about counselees’ specific concerns. New counselees may be helped by receiving more information on the counselling procedure prior to their visit, and may be advised to prepare the visit more thoroughly so as to help them verbalise more their queries during the visit.

Prolific growth of Typha australis in the lower part of the Senegal River and the Lac de Guiers resulted from changed ecological conditions following the construction of two high dams in the Senegal River. Fluctuation of the water level has decreased markedly and the water has changed from brackish to fresh as the inflow of salt water from the ocean is prevented. The efficiency of a hydraulic weed cutting boat (model Conver 480 H) has been tested in various plots in the Lac de Guiers. This lake, connected with the Senegal River, is economically very important as it is the city of Dakar's major drinking water supply and also provides irrigation water for vast agricultural areas. Cutting, performed at 20 cm and 50 cm below the water surface, was very effective in removing Typha stands. However, due to the excessively thick stems of the Typha plants, cutting took much more time compared to similar operations in Europe. It was estimated that approximately 35 h were required to clear one ha of dense Typha stands. Directly after cutting re-growth was observed during a relatively brief period (approximately three months), however, subsequently all newly formed growth tips in the plots had suddenly disappeared. It was concluded that this sudden collapse was linked to a destruction of the root zone due to anoxic conditions. Eventual re-growth was relatively slow as after one year the plots were still largely free from Typha plants. Efficiency of mowing was not related significantly to depth of cutting.