Quantifying short-term dynamics of Parkinson's disease using self-reported symptom data from an internet social network

Background: Parkinson’s disease (PD) is an incurable neurological disease with approximately 0.3% prevalence. The hallmark symptom is gradual movement deterioration. Current scientific consensus about disease progression holds that symptoms will worsen smoothly over time unless treated. Accurate information about symptom dynamics is of critical importance to patients, caregivers, and the scientific community for the design of new treatments, clinical decision making, and individual disease management. Long-term studies characterize the typical time course of the disease as an early linear progression gradually reaching a plateau in later stages. However, symptom dynamics over durations of days to weeks remains unquantified. Currently, there is a scarcity of objective clinical information about symptom dynamics at intervals shorter than 3 months stretching over several years, but Internet-based patient self-report platforms may change this. Objective: To assess the clinical value of online self-reported PD symptom data recorded by users of the health-focused Internet social research platform PatientsLikeMe (PLM), in which patients quantify their symptoms on a regular basis on a subset of the Unified Parkinson’s Disease Ratings Scale (UPDRS). By analyzing this data, we aim for a scientific window on the nature of symptom dynamics for assessment intervals shorter than 3 months over durations of several years. Methods: Online self-reported data was validated against the gold standard Parkinson’s Disease Data and Organizing Center (PD-DOC) database, containing clinical symptom data at intervals greater than 3 months. The data were compared visually using quantile-quantile plots, and numerically using the Kolmogorov-Smirnov test. By using a simple piecewise linear trend estimation algorithm, the PLM data was smoothed to separate random fluctuations from continuous symptom dynamics. Subtracting the trends from the original data revealed random fluctuations in symptom severity. The average magnitude of fluctuations versus time since diagnosis was modeled by using a gamma generalized linear model. Results: Distributions of ages at diagnosis and UPDRS in the PLM and PD-DOC databases were broadly consistent. The PLM patients were systematically younger than the PD-DOC patients and showed increased symptom severity in the PD off state. The average fluctuation in symptoms (UPDRS Parts I and II) was 2.6 points at the time of diagnosis, rising to 5.9 points 16 years after diagnosis. This fluctuation exceeds the estimated minimal and moderate clinically important differences, respectively. Not all patients conformed to the current clinical picture of gradual, smooth changes: many patients had regimes where symptom severity varied in an unpredictable manner, or underwent large rapid changes in an otherwise more stable progression. Conclusions: This information about short-term PD symptom dynamics contributes new scientific understanding about the disease progression, currently very costly to obtain without self-administered Internet-based reporting. This understanding should have implications for the optimization of clinical trials into new treatments and for the choice of treatment decision timescales.

Pleasure, pain and procrastination:reflections on the experience of doing memory-work research

The focus of this article is the process of doing memory-work research. We tell the story of our experience of what it was like to use this approach. We were enthused to work collectively on a "discovery" project to explore a method with which we were unfamiliar. We hoped to build working relationships based on mutual respect and the desire to focus on methodology and its place in our psychological understanding. The empirical activities highlighted methodological and experiential challenges, which tested our adherence to the social constructionist premise of Haug's original description of memory work. Combined with practical difficulties of living across Europe, writing and analyzing the memories became contentious. We found ourselves having to address a number of tensions emanating from the work and our approach to it. We discuss some of these tensions alongside examples that illustrate the research process and the ways we negotiated the collective nature of the memory-work approach. © 2012 Copyright Taylor and Francis Group, LLC.

Developing an intervention to equip nurses for acute life threatening events (ALTEs) in hospital:a phenomenological approach to healthcare research

Objectives: To understand staff's experiences of acute life threatening events (ALTEs) in a pediatric hospital setting. These data will inform an intervention to equip nurses with clinical and emotional skills for dealing with ALTEs. Method: A mixed design was used in the broader research program; this paper focuses on phenomenon-focused interviews analyzed using interpretative phenomenological analysis (IPA). Results: Emerging themes included staff's relationships with patients and the impact of personhood on their ability to perform competently in an emergency. More experienced nurses described "automatic" competence generated through increased exposure to ALTEs and were able to recognize "fumbling and shaking" as a normal stress response. Designating a role was significant to staff experience of effectiveness. Key to nurses' learning experience was reflection and identifying experiences as "teachable moments." Findings were considered alongside existing theories of self-efficacy, reflective thought, and advocacy inquiry to create an experiential learning intervention involving a series of clinical and role-related scenarios. Conclusion: The phenomenological work facilitated an in-depth reading of experience. It accentuated the importance of exposure to ALTEs giving nurses experiential knowledge to prepare them for the impact of these events. Challenges included bracketing the personhood of child patients, shifting focus to clinical tasks during the pressured demands of managing an ALTE, normalizing the physiological stress response, and the need for a forum and structure for reflection and learning. An intervention will be designed to provide experiential learning and encourage nurses to realize and benefit from their embodied knowledge.

The effects of American Sign Language on general self-efficacy and anxiety among mothers in a residential rehabilitation facility for drug addiction and substance abuse

Globally, approximately 208 million people aged 15 and older used illicit drugs at least once in the last 12 months; 2 billion consumed alcohol and tobacco consumption affected 25% (World Drug Report, 2008). In the United States, 20.1 million (8.0%) people aged 12 and older were illicit drug users, 129 million (51.6%) abused alcohol and 70.9 million (28.4%) used tobacco (SAMHSA/OAS, 2008).Usually considered a problem specific to men (Lynch, 2002), 5.2% of pregnant women aged 15 to 44 are also illicit drug and substance abusers (SAMHSA/OAS, 2007). During pregnancy, illicit drugs and substance abuse (ID/SA) can significantly affect a woman and her infant contributing to developmental and communication delays for the infant and influencing parenting abilities (Budden, 1996; March of Dimes, 2006b; Rossetti, 2000). Feelings of guilt and shame and stressful experiences influence approaches to parenting (Ashley, Marsden, & Brady, 2003; Brazelton, & Greenspan, 2000; Ehrmin, 2000; Johnson, & Rosen, 1990; Kelley, 1998; Rossetti, 2000; Velez et al., 2004; Zickler, 1999). Parenthood is an expanded role that can be a trying time for those lacking a sense of self-efficacy and creates a high vulnerability to stress (Bandura, 1994). Residential treatment programs for ID/SA mothers and their children provide an excellent opportunity for effective interventions (Finkelstein, 1994; Social Care Institute for Excellence, 2005). This experimental study evaluated whether teaching American Sign Language (ASL) to mothers living with their infants/children at an ID/SA residential treatment program increased the mothers’ self-efficacy and decreased their anxiety. Quantitative data were collected using the General Self-Efficacy Scale and the State-Trait Anxiety Inventory showing there was both a significant increase in self efficacy and decrease in anxiety for the mothers. This research adds to the knowledge base concerning ID/SA mothers’ caring for their infants/children. By providing a simple low cost program, easily incorporated into existing rehabilitation curricula, the study helps educators and healthcare providers better understand the needs of the ID/SA mothers. This study supports Bandura’s theory that parents who are secure in their efficacy can navigate through the various phases of their child’s development and are less vulnerable to stress (Bandura, 1994).

Anxiety sensitivity's facets in relation to anxious and depressive symptoms in youth

Anxiety sensitivity is a multifaceted cognitive risk factor currently being examined in relation to anxiety and depression. The paucity of research on the relative contribution of the facets of anxiety sensitivity to anxiety and depression, coupled with variations in existing findings, indicate that the relations remain inadequately understood. In the present study, the relations between the facets of anxiety sensitivity, anxiety, and depression were examined in 730 Hispanic-Latino and European-American youth referred to an anxiety specialty clinic. Youth completed the Childhood Anxiety Sensitivity Index, the Revised Children’s Manifest Anxiety Scale, and the Children’s Depression Inventory. The factor structure of the Childhood Anxiety Sensitivity Index was examined using ordered-categorical confirmatory factor analytic techniques. Goodness-of-fit criteria indicated that a two-factor model fit the data best. The identified facets of anxiety sensitivity included Physical/Mental Concerns and Social Concerns. Support was also found for cross-ethnic equivalence of the two-factor model across Hispanic-Latino and European-American youth. Structural equation modeling was used to examine models involving anxiety sensitivity, anxiety, and depression. Results indicated that an overall measure of anxiety sensitivity was positively associated with both anxiety and depression, while the facets of anxiety sensitivity showed differential relations to anxiety and depression symptoms. Both facets of anxiety sensitivity were related to overall anxiety and its symptom dimensions, with the exception being that Social Concerns was not related to physiological anxiety symptoms. Physical/Mental Concerns were strongly associated with overall depression and with all depression symptom dimensions. Social Concerns was not significantly associated with depression or its symptom dimensions. These findings highlight that anxiety sensitivity’s relations to youth psychiatric symptoms are complex. Results suggest that focusing on anxiety sensitivity’s facets is important to fully understand its role in psychopathology. Clinicians may want to target all facets of anxiety sensitivity when treating anxious youth. However, in the context of depression, it might be sufficient for clinicians to target Physical/Mental Incapacitation Concerns.

The role of emotion regulation on social participation following stroke

© 2014 The British Psychological Society.

The role of emotion regulation on social participation following stroke

© 2014 The British Psychological Society.

Individual Differences in the Neural Response to Personal Goal Pursuit Success and Failure: A Developmental Analysis

Regulatory focus theory (RFT) proposes two different social-cognitive motivational systems for goal pursuit: a promotion system, which is organized around strategic approach behaviors and "making good things happen," and a prevention system, which is organized around strategic avoidance and "keeping bad things from happening." The promotion and prevention systems have been extensively studied in behavioral paradigms, and RFT posits that prolonged perceived failure to make progress in pursuing promotion or prevention goals can lead to ineffective goal pursuit and chronic distress (Higgins, 1997).

Research has begun to focus on uncovering the neural correlates of the promotion and prevention systems in an attempt to differentiate them at the neurobiological level. Preliminary research suggests that the promotion and prevention systems have both distinct and overlapping neural correlates (Eddington, Dolcos, Cabeza, Krishnan, & Strauman, 2007; Strauman et al., 2013). However, little research has examined how individual differences in regulatory focus develop and manifest. The development of individual differences in regulatory focus is particularly salient during adolescence, a crucial topic to explore given the dramatic neurodevelopmental and psychosocial changes that take place during this time, especially with regard to self-regulatory abilities. A number of questions remain unexplored, including the potential for goal-related neural activation to be modulated by (a) perceived proximity to goal attainment, (b) individual differences in regulatory orientation, specifically general beliefs about one's success or failure in attaining the two kinds of goals, (c) age, with a particular focus on adolescence, and (d) homozygosity for the Met allele of the catechol-O-methyltransferase (COMT) Val158Met polymorphism, a naturally occurring genotype which has been shown to impact prefrontal cortex activation patterns associated with goal pursuit behaviors.

This study explored the neural correlates of the promotion and prevention systems through the use of a priming paradigm involving rapid, brief, masked presentation of individually selected promotion and prevention goals to each participant while being scanned. The goals used as priming stimuli varied with regard to whether participants reported that they were close to or far away from achieving them (i.e. a "match" versus a "mismatch" representing perceived success or failure in personal goal pursuit). The study also assessed participants' overall beliefs regarding their relative success or failure in attaining promotion and prevention goals, and all participants were genotyped for the COMT Val158Met polymorphism.

A number of significant findings emerged. Both promotion and prevention priming were associated with activation in regions associated with self-referential cognition, including the left medial prefrontal cortex, cuneus, and lingual gyrus. Promotion and prevention priming were also associated with distinct patterns of neural activation; specifically, left middle temporal gyrus activation was found to be significantly greater during prevention priming. Activation in response to promotion and prevention goals was found to be modulated by self-reports of both perceived proximity to goal achievement and goal orientation. Age also had a significant effect on activation, such that activation in response to goal priming became more robust in the prefrontal cortex and in default mode network regions as a function of increasing age. Finally, COMT genotype also modulated the neural response to goal priming both alone and through interactions with regulatory focus and age. Overall, these findings provide further clarification of the neural underpinnings of the promotion and prevention systems as well as provide information about the role of development and individual differences at the personality and genetic level on activity in these neural systems.

Intervención cognitivo-conductual para el control de ansiedad ante la biopsia insicional en pacientes con cáncer de mama

Oncological patients are submitted to invasive exams in order to obtain an accurate diagnosis; these procedures may cause maladaptative reactions (fear, anxiety and pain). Particularly in breast cancer, the most common diagnose technique is the incisional biopsy. Most of the patients are unaware about the procedure and for that reason they may focus their thoughts on possible events such as pain, bleeding, the anesthesia, or the later surgical wound care. Anxiety and pain may provoke physiological, behavioral and emotional complications, and because of this reason, the Behavioral Medicine trained psychologist takes an active role before and after the biopsy. The aim of this study was to evaluate the effect of a cognitive-behavioral program to reduce anxiety in women submitted to incisional biopsy for the first time. There were 10 participants from the Hospital Juárez de México, Oncology service; all of them were treated as external patients. The intervention program focused in psycho-education and passive relaxation training using videos, tape-recorded instructions and pamphlets. Anxiety measures were performed using the IDARE-State inventory, and a visual-analogue scale of anxiety (EEF-A), and the measurement of blood pressure and heart rate). Data were analyzed both intrasubject and intersubject using the Wilcoxon test (p≤0.05). The results show a reduction in anxiety (as in punctuation as in ranges) besides, a reduction in the EEF-A.

Arteterapia en el final de la vida

El arteterapia permite una aproximación creativa biográfica particularmente valiosa en la etapa final de la vida. La persona enferma presenta múltiples necesidades – físicas, emocionales, sociales y espirituales – que solo una atención holística puede pretender abarcar, tal como lo contempla la filosofía de los cuidados paliativos. El arteterapeuta integrado en el equipo interdisciplinar contribuye a aliviar y acompañar el sufrimiento del paciente y su familia. Se presentan aquí las bases teóricas y la metodología de la intervención, así como el marco sanitario en el cual se inscribe.

La música en el desarrollo de la espiritualidad y la religiosidad. Una aproximación al Cristianismo y al Budismo

La música puede afectar al individuo en todos sus niveles –físico, mental y espiritual–. El presente artículo se centra en el papel que ésta desempeña en el desarrollo de la vida espiritual y trascendental. Para ello, realizaremos un repaso histórico de su evolución estética y social, abordaremos dicho fenómeno a nivel fisiológico y presentaremos sus aplicaciones clínicas y sociales. Seguidamente y a modo de ejemplo de las concepciones de pensamiento occidental y oriental, trataremos la forma en que el cristianismo y el budismo conciben la música dentro de su doctrina. Finalizaremos con algunas reflexiones sobre el tema.

Childhood Attention Problems and the Development of Comorbid Symptoms at the Transition to High School: The Mediating Role of Parent and Peer Relationships

Children with Attention-Deficit/Hyperactivity Disorder (ADHD) are at increased risk for the development of depression and delinquent behavior. Children and adolescents with ADHD also experience difficulty creating/maintaining high quality friendships and parent-child relationships, and these difficulties may contribute to the development of co-morbid internalizing and externalizing symptoms in adolescence. However, there is limited research examining whether high quality friendships and parent-child relationships mediate the relation between ADHD and the emergence of these co-morbid symptoms at the transition to high school. This study examines the mediating role of relationship quality in the association between ADHD and depressive symptoms/delinquent behaviors at this developmentally significant transition point. Results revealed significant indirect effects of grade 6 attention problems on grade 9 depressive symptoms through friendship quality and quality of the mother-child relationship in grade 8. Interventions targeting parent and peer relationships may be valuable for youth with ADHD to promote successful transitions to high school.

Brain matters…in social sciences

Here we offer a general introduction to cognitive neuroscience and provide examples relevant to psychology, healthcare and bioethics, law and criminology, information studies, of how brain studies have influenced, are influencing or show the potential to influence the social sciences. We argue that social scientists should read, and be enabled to understand, primary sources of evidence in cognitive neuroscience. We encourage cognitive neuroscientists to reflect upon the resonance that their work may have across the social sciences and to facilitate a mutually enriching interdisciplinary dialogue.

The Validity and Comparison of Two Affiliation Tasks in Schizophrenia

Negative symptoms are related to worse psychosocial functioning in schizophrenia. The current study evaluates two behavioral affiliation tasks—the video-based Social Affiliation Interaction Task (SAIT) and the in-vivo Conversation Task (CT)—and explores whether behavioral ratings of social affiliation are associated with negative symptoms and community functioning. Participants, 20 with schizophrenia/schizoaffective disorder (SZ) and 35 healthy controls (HC), completed both tasks and measures of negative symptoms and functioning. SZ evidenced lower behavioral affiliation on the SAIT compared to HC. There were no group differences in behavioral affiliation on the CT. Within groups, behavioral affiliation was not correlated between tasks or with symptoms and functioning. Across groups, behavioral affiliation from the SAIT was correlated with symptoms and functioning. Post hoc analyses revealed higher ratings of positive facial expression and valence in the CT for HC compared to SZ. Results suggest that the method of assessing behavioral affiliaton may influence research findings.

Social Influences of Error Monitoring

Adolescence is characterized by dramatic hormonal, physical, and psychological changes, and is a period of risk for affective and anxiety disorders. Pubertal development during adolescence plays a major role in the emergence of these disorders, particularly among girls. Thus, it is critical to identify early biomarkers of risk. One potential biomarker, the error-related negativity (ERN), is an event-related potential following an erroneous response. Individuals with an anxiety disorder demonstrate a greater ERN than healthy comparisons, an association which is stronger in adolescence, suggesting that pubertal development may play a role in the ERN as a predictor of anxiety. One form of anxiety often observed in adolescence, particularly among girls, is social anxiety, which is defined as anxiety elicited by social-evaluative contexts. In adults, enhancements of the ERN in social-evaluative contexts is positively related to social anxiety symptoms, suggesting that the ERN in social contexts may serve as a biomarker for social anxiety. This dissertation examined the ERN in and its relation with puberty and social anxiety among 76 adolescent girls. Adolescent girls completed a flanker task in two different