Patients feeling severely affected by multiple sclerosis: How do patients want to communicate about end-of-life issues?

Objective

Investigate multiple sclerosis patients’ desire to communicate with their physicians about their disease progression and end-of-life issues.

Methods

Persons meeting the inclusion criteria of feeling severely affected by MS were invited via the German MS society to complete a needs questionnaire. Replies to questions on physician empathy and wishes about communication regarding disease progression and death and dying were quantitatively analyzed. Endpoints (point 1 + 2/4 + 5) of 5-point-likert scales are summarized under results.

Results

573 of 867 questionnaires meeting our criteria were analyzed. In response to a general question 64% (n = 358) indicated a wish for disease progression and death and dying to be addressed by their doctor. A majority (76%, n = 427) considered it important that progression of their disease be discussed, while 44% (n = 246) regard addressing death and dying as unimportant. No objective disease criteria could be identified to explain the wish for communicating end-of-life issues. Doctors who were retrospectively viewed as avoiding raising critical aspects of the illness were perceived as less empathetic (p < 0.001).

Conclusion

People with MS have a desire to talk about progression of their disease with their doctors.

Practice implications

Physicians should be empathetic in raising critical aspects of the patients’ illness individually.     

How do dendrites take their shape?

Recent technical advances have made possible the visualization and genetic manipulation of individual dendritic trees. These studies have led to the identification and characterization of molecules that are important for different aspects of dendritic development. Although much remains to be learned, the existing knowledge has allowed us to take initial steps toward a comprehensive understanding of how complex dendritic trees are built. In this review, we describe recent advances in our understanding of the molecular mechanisms underlying dendritic morphogenesis, and discuss their cell-biological implications.     

How much do surgeons like their patients?

OBJECTIVES: Physicians experience feelings of caring and sometimes frustration toward patients during routine visits. To date, no studies have explored surgeons' feelings toward patients. Our objectives were: (1) to examine how much surgeons like their patients and (2) to assess the relationship of surgeons' liking to patient and surgeon characteristics and to patient satisfaction. METHODS: Participants included 66 surgeons (orthopaedic and general surgeons) in community practice in Colorado and Oregon, and 701 of their patients. Exit questionnaires asked surgeons how much they liked the patient on a 1-5 scale ranging from "not at all" to "very much". Patients scored satisfaction with the visit on a 1-5 scale. Logistic regression was conducted with surgeon liking and patient satisfaction as dependent variables. RESULTS: Surgeons' ratings of liking ranged across all five categories. Patient characteristics including age over 65 years, higher education and income, and better health were associated with higher liking scores. Surgeon characteristics hours worked per week, practice setting and surgeons' self-rating of their own health were associated with liking. Patient satisfaction were associated with "liking". CONCLUSION AND PRACTICE IMPLICATIONS: These findings shed light on a rarely addressed issue-surgeons' feelings toward their patients. We found that surgeons do not like their patients equally. Their feelings are associated with surgeon and patient characteristics, and with patient satisfaction. Our findings have important implications for surgeons seeking to improve care striving to enhance or maintain their own career satisfaction.     

How do teenagers manage their food allergies?

Background The peak incidence of deaths from anaphylaxis associated with nut allergy occurs in teenagers and young adults. During adolescence, the management of food allergy shifts from being the responsibility of parents to that of the young person. This is a group who therefore need special attention in the clinic. Objective This study aimed to understand the practical challenges that teenagers with food allergy experience using a qualitative approach and generate potential interventions for tackling these. Methods Teenagers aged 1118 years with food allergy completed a questionnaire about their food allergy and underwent a focused, semi‐structured interview with open questions guided by a priori topic areas. Interviews were recorded, transcribed and analysed using a thematic approach. Results The study enrolled 18 teenagers with a median age of 15 years (10 females); the most common food allergens were peanuts and tree nuts. Three key themes emerged: avoidance of allergens, preparation for reactions and the treatment of reactions. The majority of teenagers reported eating foods labelled as ‘may contain’ an allergen as they perceive that they are actually very unlikely to contain an allergen. Many of the teenagers only carried their self‐injectable adrenaline when they thought they are particularly at risk of a reaction. Some do not know how to appropriately treat an allergic reaction. More than half believed that educating other students at school about the seriousness of food allergies would make it easier to live with their food allergy. Conclusions A significant number of teenagers demonstrate risk‐taking behaviour in the management of their food allergies. Teenagers also felt it would be helpful for their peers to be educated about food allergy. This novel strategy might help them to avoid trigger foods and enable teenagers to access help more readily if they suffer a reaction. Cite this as: H. Monks, M. H. Gowland, H. MacKenzie, M. Erlewyn‐Lajeunesse, R. King, J. S. Lucas and G. Roberts, Clinical & Experimental Allergy, 2010 (40) 1533–1540.     

Acute disseminated encephalomyelitis progressing to multiple sclerosis: Are infectious triggers involved?

Acute disseminated encephalomyelitis (ADEM) and multiple sclerosis (MS) are demyelinating disorders affecting the central nervous system. An autoimmune aetiology has been proposed for both. ADEM principally affects adolescents following acute infection by a variety of pathogens and has also been reported to occur following vaccination. ADEM typically resolves following medical treatment, whereas MS follows a more relapsing and remitting course. The pathogenesis of MS remains unclear, but it is thought that a combination of infectious and non-infectious environmental factors and host genetics act synergistically to cause disease. A variety of viruses, including Epstein Barr virus, cytomegalovirus, herpes simplex virus and varicella zoster virus, have been implicated as possible infectious triggers. The similar clinical and pathological presentation of ADEM and MS presents a diagnostic challenge for distinguishing ADEM from a first episode of MS. Some cases of ADEM progress to MS for reasons that are not currently clear. This review examines the evidence for infectious agents as triggers for ADEM progressing to MS and suggests potential methods that may facilitate identification of infectious agents that may be responsible for the pathogenesis of ADEM to MS.     

How do students react to analyzing their own genomes in a whole-genome sequencing course?: outcomes of a longitudinal cohort study

PurposeHealth-care professionals need to be trained to work with whole-genome sequencing (WGS) in their practice. Our aim was to explore how students responded to a novel genome analysis course that included the option to analyze their own genomes.MethodsThis was an observational cohort study. Questionnaires were administered before (T3) and after the genome analysis course (T4), as well as 6 months later (T5). In-depth interviews were conducted at T5.ResultsAll students (n = 19) opted to analyze their own genomes. At T5, 12 of 15 students stated that analyzing their own genomes had been useful. Ten reported they had applied their knowledge in the workplace. Technical WGS knowledge increased (mean of 63.8% at T3, mean of 72.5% at T4; P = 0.005). In-depth interviews suggested that analyzing their own genomes may increase students’ motivation to learn and their understanding of the patient experience. Most (but not all) of the students reported low levels of WGS results–related distress and low levels of regret about their decision to analyze their own genomes.ConclusionGiving students the option of analyzing their own genomes may increase motivation to learn, but some students may experience personal WGS results–related distress and regret. Additional evidence is required before considering incorporating optional personal genome analysis into medical education on a large scale.Genet Med17 11, 866–874.     

An ageing question: do embryonic stem cells protect their genomes?

Many physiological and cellular processes contribute to the ageing of individuals. One hypothesis argues that the genomes of somatic cells accumulate mutations, which, in turn, alter the metabolism of the cells and contribute to the ageing process. The frequency of somatic mutation approaches 10(-4) and the majority of mutagenic events at heterozygous loci is due to loss of heterozygosity as a consequence of mitotic recombination. A corollary to the argument that somatic cells accumulate mutations is that cells of the germ line and ES cells have a greater requirement for maintaining the integrity of their genomes. In the former case, a high somatic mutation frequency predicts an increase in somatic disease, which limits our lifespan. The corollary is that cells of the germline and ES cells must minimize the mutational burden to limit the frequency of congenital disease and to ensure the proper transmission of undamaged DNA to the gene pool. This report describes two mechanisms utilized by murine ES cells to minimize DNA damage within the proliferative pool. In the first case, murine ES cells display a frequency of mutation and mitotic recombination that is about 100-fold lower than that observed in somatic cells. Second, ES cells lack a G1 checkpoint following DNA damage. When subjected to ionizing radiation, the fraction of apoptotic cells increases to about 40%. Ectopic expression of Chk2 is sufficient to establish a G1 arrest and the concomitant protection from cell death.     

How do index patients participating in genetic screening programmes for familial hypercholesterolemia (FH) interpret their DNA results? A UK-based qualitative interview study

Objective

To explore patients’ interpretations of their DNA results for familial hypercholesterolemia (FH).

Methods

In-depth interviews were conducted with patients from two lipid clinics in Scotland, who were offered genetic testing as part of a nationwide cascade screening service.

Results

Patients were receptive to taking part in genetic screening and most expected a positive result. Receiving a molecular diagnosis of FH could provide reassurance to patients that diet and lifestyle factors were not the primary causes of their condition. Patients who received inconclusive results tended to interpret this as meaning that their high cholesterol was not genetic, which could induce feelings of uncertainty and self-blame. With the exception of newly diagnosed patients, for whom a positive result could provide a useful rationale for initiating statins, most perceived DNA screening to be of little relevance to their own medication use or their own approaches to lifestyle management.

Conclusions

Index patients are likely to view DNA screening for FH as non-threatening. Receiving a positive DNA result can be reassuring for patients. Patients may not, however, interpret inconclusive DNA results correctly.

Practice implications

Health professionals need to ensure FH index patients are prepared to receive, and fully understand, inconclusive DNA results.     

How do social media users process cancer prevention messages on Facebook? An eye-tracking study

ObjectiveThe quality of cancer-related information on social media (SM) is mixed, and exposure to inaccurate information may negatively affect knowledge, attitudes, and behaviors. This study examines SM users’ attention to simulated Facebook posts related to cancer and identifies message features associated with increased attention.MethodsSM users (N = 53) participated in a mixed methods experimental study using eye-tracking technology, whereby participants’ dwell time on message components was measured. Stimuli conditions included message format (narrative/non-narrative), information veracity, source (organization/individual), and cancer topic (HPV vaccine and sunscreen safety).ResultsPixel-size adjusted analyses revealed that average dwell time was longer on posts attributed to individuals and on narrative-based posts. The source of the message received nearly the same amount of dwell time as the text. Dwell time on other message components did not significantly differ by condition.ConclusionThis study found that the source of a message attracted substantial attention, whereas other features were not associated with attention. The study illustrates how communication research can help us understand the processing of ubiquitous cancer-related messages on SM.Practical ImplicationsHealth communication practitioners should consider message features that garner attention when developing efforts to facilitate the exchange of evidence-based information and to mitigate the harms of misinformation.     

(How) do medical students regulate their emotions?

Background

Medical training can be a challenging and emotionally intense period for medical students. However the emotions experienced by medical students in the face of challenging situations and the emotion regulation strategies they use remains relatively unexplored. The aim of the present study was to explore the emotions elicited by memorable incidents reported by medical students and the associated emotion regulation strategies.

Methods

Peer interviewing was used to collect medical students’ memorable incidents. Medical students at both preclinical and clinical stage of medical school were eligible to participate. In total 104 medical students provided memorable incidents. Only 54 narratives included references to emotions and emotion regulation and thus were further analyzed.

Results

The narratives of 47 clinical and 7 preclinical students were further analyzed for their references to emotions and emotion regulation strategies. Forty seven out of 54 incidents described a negative incident associated with negative emotions. The most frequently mentioned emotion was shock and surprise followed by feelings of embarrassment, sadness, anger and tension or anxiety. The most frequent reaction was inaction often associated with emotion regulation strategies such as distraction, focusing on a task, suppression of emotions and reappraisal. When students witnessed mistreatment or disrespect exhibited towards patients, the regulation strategy used involved focusing and comforting the patient.

Conclusions

The present study sheds light on the strategies medical students use to deal with intense negative emotions. The vast majority reported inaction in the face of a challenging situation and the use of more subtle strategies to deal with the emotional impact of the incident.

     

How do taxonomic versus thematic relations impact similarity and difference judgments? An ERP study

Taxonomically related concepts like “bee” and “butterfly” and thematically related concepts like “bee” and “honey” have different roles in similarity judgments. We examined the complex impact of taxonomic and thematic relations on similarity and difference judgments via ERPs in a S1–S2 paradigm. Subjects were required to remember a word denoting some object or animal (S1), and compare that to a second word (S2) that was either thematically related, taxonomically related or unrelated to S1, making a “high” or “low” similarity and difference judgments in separate blocks. We found two main differences that suggest thematic and taxonomic relations engage distinct neural processes. The first difference is an N400 effect peaking between 300 ms and 400 ms that is more negative for unrelated words than for thematically and taxonomically related words. The second difference is a frontally distributed P600 peaking between 500 ms and 600 ms that is larger for taxonomically related words than for both unrelated and thematically related words. These results suggest that the dual process model for perceiving similarity is superior to the comparison only model of similarity judgments, and furthermore, provide evidence that the thematic relations are dissociative from taxonomic relations in making similarity and difference judgments.     

How well do patients with schizophrenia track multiple moving targets?

It has been demonstrated that patients with schizophrenia perform poorly on tasks that require orienting, focusing, maintaining, and shifting attention. However, it is unknown how patients with schizophrenia can track multiple moving targets. To elucidate this issue, the authors investigated fast and slow multiple-object tracking in patients with schizophrenia (n = 30) and in matched healthy control participants (n = 30) and assessed their relationship with motion perception (velocity discrimination), sustained attention and context processing (Continuous Performance Test, 1-9 version; J. R. Finkelstein, T. D. Cannon, R. E. Gur, R. C. Gur, & P. Moberg, 1997), and object and spatial working memory. Results revealed that patients with schizophrenia displayed impaired performances on multiple-object tracking tasks. Linear regression analysis revealed a specific relationship among object tracking, velocity discrimination, and spatial working memory. In patients with schizophrenia, velocity discrimination and spatial working memory were the predictive factors of multiple-object tracking, whereas in healthy control participants, the single predictive factor was velocity discrimination. Probabilistic regression analysis revealed that only the Continuous Performance Test made significant contribution to discriminating between patients and control participants. These results suggest that multiple-object tracking is impaired in schizophrenia, and that it is specifically associated with motion perception and spatial working memory.     

How do social firms contribute to recovery from mental illness? A qualitative study

Background: A definition of recovery drawn from qualitative literature and the ‘consumer/survivor’ movement suggests that recovery should be seen as a way of developing satisfaction and purpose in life, whether or not symptoms of mental illness are present. A qualitative review suggested that meaningful activity may facilitate recovery by providing a sense of purpose in life. Social firms may be well placed to offer this activity due to their ethos of empowerment, their community integration and their similarity to ‘recovery‐oriented services’. Aims: The aim of this study was to explore experiences of recovery from mental illness in the context of two emerging social firms. Method: A social constructionist version of grounded theory was used to develop a model of recovery through participation in the emerging social firms. Multiple coding, triangulation and respondent validation were used to increase the rigour of study findings. Findings: A model of recovery in the context of the emerging social firms was constructed. This was influenced by characteristics such as a flexible structure, a meaningful and diverse activity, an accepting social group and an inclusive leadership. Conclusion: Social firms may provide an important model for ‘recovery‐oriented services’. Clinical, research and policy implications of findings are discussed. Copyright © 2010 John Wiley & Sons, Ltd. Key Practitioner Message:

• Social firms are a form of enterprise that employs people who are disadvantaged in the labour market by their disability.
• Social firms promote a model of community integration and empowerment for their employees.
• We found that individuals recovering from a mental illness experience social firms as providing a flexible environment which promotes feelings of belonging, success, competence and individuality.
• We interpret these findings as social firms providing secure base for recovery.

     

Introduction: How can research discover how to do psychotherapy?

It is almost exceptional that psychotherapy researchers set out to answer questions like these: What are some new and better ways of doing actual in-session psychotherapeutic work? What are some new and better changes that psychotherapy can help bring about, and what are some new and better ways of helping to bring them about? The purpose of this special series of papers is to provide a forum for researchers to tell how to do research to answer those questions, i.e., to present practical and useful methodologies, designs, and strategies that are helpful in answering these questions.     

Concurrent multiple sclerosis and amyotrophic lateral sclerosis: where inflammation and neurodegeneration meet?

Background

Alterations in blood?Cbrain barrier permeability have been proposed to represent a relevant factor contributing to Parkinson??s disease progression. However, few studies have addressed this issue in patients at different stages of disease.

Methods

Albumin was measured in cerebrospinal fluid and serum samples obtained from 73 non-demented subjects with idiopathic Parkinson??s disease and 47 age-matched control subjects. The albumin ratio (AR) was calculated to assess blood-cerebrospinal fluid and blood?Cbrain barrier function. The group of patients with Parkinson??s disease included 46 subjects with Hoehn-Yahr staging between 1 and 2 and 27, with a score ranging from 2.5 to 4.

Results

Statistically significant differences in albumin ratio were found between patients with advanced disease, and both early-stage and unaffected groups. Conversely, early-phase patients did not differ from healthy subjects. Additionally, dopaminergic treatment seems to exert a possible effect on AR values.

Conclusions

Our study demonstrates that possible dysfunction of the blood-cerebrospinal fluid barrier, blood?Cbrain barrier, or both, characterize Parkinson??s disease progression. The associations between clinical scores, treatments and biochemical findings suggest a progressive impairment of barrier integrity during the course of the disease.     

Vitamin A: yet another player in multiple sclerosis pathogenesis?

Evaluation of: Løken-Amsrud KI, Myhr KM, Bakke SJ et al. Retinol levels are associated with magnetic resonance imaging outcomes in multiple sclerosis. Mult. Scler. doi:10.1177/1352458512457843 (2012) (Epub ahead of print).

A combination of genetic and environmental factors probably plays a role in determining an increased susceptibility to multiple sclerosis (MS). Among these factors, vitamin D and A metabolites are likely to play a role given their immunomodulatory properties. Decreased serum vitamin D levels have been associated with clinical and MRI activity of MS. Løken-Amsrud et al. evaluated the association of retinol concentration with clinical and MRI measures of disease activity in MS patients over a 2-year period. Serum retinol levels correlated with MRI metrics of disease activity, but not with clinical findings. Following IFN-β-1a treatment, the association with MRI metrics was lost. These results support a role of vitamin A metabolites in influencing disease activity in MS.