Oncologists' communication about uncertain information in second opinion consultations: a focused qualitative analysis

Introduction: Uncertainty is omnipresent in cancer care, including the ambiguity of diagnostic tests, efficacy and side effects of treatments, and/or patients' long-term prognosis. During second opinion consultations, uncertainty may be particularly tangible: doubts and uncertainty may drive patients to seek more information and request a second opinion, whereas the second opinion in turn may also affect patients' level of uncertainty. Providers are tasked to clearly discuss all of these uncertainties with patients who may feel overwhelmed by it. The aim of this study was to explore how oncologists communicate about uncertainty during second opinion consultations in medical oncology.Methods: We performed a secondary qualitative analysis of audio-recorded consultations collected in a prospective study among cancer patients (N = 69) who sought a second opinion in medical oncology. We purposively selected 12 audio-recorded second opinion consultations. Any communication about uncertainty by the oncologist was double coded by two researchers and an inductive analytic approach was chosen to allow for novel insights to arise.Results: Seven approaches in which oncologists conveyed or addressed uncertainty were identified: (1) specifying the degree of uncertainty, (2) explaining reasons of uncertainty, (3) providing personalized estimates of uncertainty to patients, (4) downplaying or magnifying uncertainty, (5) reducing or counterbalancing uncertainty, and (6) providing support to facilitate patients in coping with uncertainty. Moreover, oncologists varied in their (7) choice of words/language to convey uncertainty (i.e., "I" vs. "we"; level of explicitness).Discussion: This study identified various approaches of how oncologists communicated uncertain issues during second opinion consultations. These different approaches could affect patients' perception of uncertainty, emotions provoked by it, and possibly even patients' behavior. For example, by minimizing uncertainty, oncologists may (un)consciously steer patients toward specific medical decisions). Future research is needed to examine how these different ways of communicating about uncertainty affect patients. This could also facilitate a discussion about the desirability of certain communication strategies. Eventually, practical and evidence-based guidance needs to be developed for clinicians to optimally inform patients about uncertain issues and support patients in dealing with these.Analysis and support of clinical decision makin

Mobility and Maternal Position during Childbirth in Tanzania: An Exploratory Study at Four Government Hospitals.

Emerging research evidence suggests a potential benefit in being upright in the first stage of labour and a systematic review of trials suggests both benefits and harmful effects associated with being upright in the second stage of labour. Implementing evidence-based obstetric care in African countries with scarce resources is particularly challenging, and requires an understanding of the cumulative nature of science and commitment to applying the most up to date evidence to clinical decisions. In this study, we documented current practice rates, explored the barriers and opportunities to implementing these procedures from the provider perspective, and documented women's preferences and satisfaction with care. This was an exploratory study using quantitative and qualitative methods. Practice rates were determined by exit interviews with a consecutive sample of postnatal women. Provider views were explored using semi-structured interviews (with doctors and traditional birth attendants) and focus group discussions (with midwives). The study was conducted at four government hospitals, two in Dar es Salaam and two in the neighbouring Coast region, Tanzania. MAIN OUTCOME MEASURES: Practice rates for mobility during labour and delivery position; women's experiences, preferences and views about the care provided; and provider views of current practice and barriers and opportunities to evidence-based obstetric practice. Across all study sites more women were mobile at home (15.0%) than in the labour ward (2.9%), but movement was quite restricted at home before women were admitted to labour ward (51.6% chose to rest with little movement). Supine position for delivery was used routinely at all four hospitals; this was consistent with women's preferred choice of position, although very few women are aware of other positions. Qualitative findings suggest obstetricians and midwives favoured confining to bed during the first stage of labour, and supine position for delivery. The barriers to change appear to be complicated and require providers to want to change, and women to be informed of alternative positions during the first stage of labour and delivery. We believe that highlighting the gap between actual practice and current evidence provides a platform for dialogue with providers to evaluate the threats and opportunities for changing practice

How does non-nutritive sucking support infant feeding?

Fifty nine premature infants participated in a randomized controlled study to determine the effectiveness of non-nutritive sucking (NNS). It was predicted that NNS would not accelerate the development of full oral feeding or early language skills as sometimes perceived in practice. However, it was predicted that using NNS as a strategy to support parents to identify and respond to early communication and oral readiness signs would increase confidence in infant management and enable quicker discharge home. Infants were aged 26-35 weeks gestation. Infants with no significant difficulties were randomly assigned to one of three groups; Group 1, NNS pre-tube feeding (n=19); Group 2, NNS on onset of tube feeding (n=20) and Group 3, Control (n=20). Follow-up occurred at 6 months. There were no significant differences with number of days to full oral feeding between the groups receiving NNS and the Control group, χ(2)(2, n=59)=4.33, p=.115. A significant difference in number of days in hospital between the Control group and the other two groups was found χ(2) (2, n=59)=7.678, p=.022. Significant changes were noted with the development of more normal sucking patterns in Groups 1-3. At 6 months there were no significant differences in receptive or expressive language skills between all groups. NNS had no significant impact on the transition to full oral feeding or later language development. There was a significant difference in the number of days in hospital between the Control group and the other two groups which involved parents in identification of early communication signs. Possible reasons for this change and future directions are discussed

Development of the Thalassaemia Adult Life Index (ThALI)

Abstract: Background: Beta Thalassaemia Major (βTM) is a chronic genetic illness whereby the challenges faced by patients exposes them to increased risk of psychosocial issues. Despite this, a disease-specific tool to measure the impact of this illness on adult patients has yet to be developed. Methods: In collaboration with βTM adult patients, this study aimed to develop a comprehensive, disease-specific, easy to use psychometrically sound tool to measure the impact of chelation and transfusion dependent βTM in a cross-cultural patient group in England.The Thalassaemia Life Index (ThALI) was developed in two stages – item generation and pre-testing and item reduction – in collaboration with service users. Recruited adult patients shaped the design of the instrument including its statements and subscales. Standard item reduction techniques were used to develop the instrument. Results: The final version of the ThALI encompasses 35 statements and five sub-scales - general physical health, coping, body image, appearance and confidence, social relationships and autonomy. This endorses the multidimensionality of quality of life (QoL). The factor structure of the ThALI is highly stable and its internal consistency is high (alpha = 0.87 for the overall scale; 0.83–0.94 for its subscales). The ThALI has sound scaling assumptions, acceptability and score variability. Content validity was confirmed by experts and service user interviewees. The loadings for the items retained were adequate and the item discriminant validity sound. Conclusions: The ThALI covers the impact of βTM in adult patients. Preliminary testing shows its multidimensionality to be reliable and valid. The national authentication of the tool with patients treated in Centres of Excellence will aim to provide further evidence regarding the ThALI’s psychometric properties. Once authenticated, the ThALI may be utilised in research and in clinical settings to assess the effects of new therapies and/or interventions from the patients’ perspective to inform practice and/or to identify areas of concern

Integrative modeling of transcriptional regulation in response to antirheumatic therapy

<p>Abstract</p> <p>Background</p> <p>The investigation of gene regulatory networks is an important issue in molecular systems biology and significant progress has been made by combining different types of biological data. The purpose of this study was to characterize the transcriptional program induced by etanercept therapy in patients with rheumatoid arthritis (RA). Etanercept is known to reduce disease symptoms and progression in RA, but the underlying molecular mechanisms have not been fully elucidated.</p> <p>Results</p> <p>Using a DNA microarray dataset providing genome-wide expression profiles of 19 RA patients within the first week of therapy we identified significant transcriptional changes in 83 genes. Most of these genes are known to control the human body's immune response. A novel algorithm called TILAR was then applied to construct a linear network model of the genes' regulatory interactions. The inference method derives a model from the data based on the Least Angle Regression while incorporating DNA-binding site information. As a result we obtained a scale-free network that exhibits a self-regulating and highly parallel architecture, and reflects the pleiotropic immunological role of the therapeutic target TNF-alpha. Moreover, we could show that our integrative modeling strategy performs much better than algorithms using gene expression data alone.</p> <p>Conclusion</p> <p>We present TILAR, a method to deduce gene regulatory interactions from gene expression data by integrating information on transcription factor binding sites. The inferred network uncovers gene regulatory effects in response to etanercept and thus provides useful hypotheses about the drug's mechanisms of action.</p