Understanding Fatigue-Related Disability in Rheumatoid Arthritis and Ankylosing Spondylitis: The Importance of Daily Correlates.

OBJECTIVE: Fatigue is common among people with inflammatory arthritis but is hard to manage. The aim of this study was to investigate how daily fluctuations in psychological variables correspond with changes in fatigue-related disability in the daily lives of people with inflammatory arthritis and to identify factors to target in psychological interventions and routine clinical practice. METHODS: A cohort of 143 patients with rheumatoid arthritis (n = 97) or ankylosing spondylitis (n = 46) participated in a 10-day online diary study. Each evening participants completed a diary questionnaire assessing their fatigue, pain, fatigue-related disability, and 4 components of psychological flexibility (valued activity, mindfulness, cognitive fusion, and fatigue avoidance). RESULTS: On days when participants were more engaged in valued activities or more mindful, they reported less disability due to fatigue, even when controlling for levels of fatigue and pain that day. The daily psychological flexibility variables explained a total of 15.6% of the variance in daily fatigue-related disability. CONCLUSION: Psychological flexibility variables are directly associated with fatigue-related disability in the daily lives of inflammatory arthritis patients. Further research is needed to investigate whether interventions that target psychological flexibility are effective at reducing fatigue-related disability.

Smart Data Collection for the Assessment of Treatment Effects in Irritable Bowel Syndrome: Observational Study.

BACKGROUND: End-of-day symptom diaries are recommended by drug regulatory authorities to assess treatment response in patients with irritable bowel syndrome. We developed a smartphone app to measure treatment response. OBJECTIVE: Because the employment of an app to measure treatment response in irritable bowel syndrome is relatively new, we aimed to explore patients' adherence to diary use and characteristics associated with adherence. METHODS: A smartphone app was developed to serve as a symptom diary. Patients with irritable bowel syndrome (based on Rome IV criteria) were instructed to fill out end-of-day diary questionnaires during an 8-week treatment. Additional online questionnaires assessed demographics, irritable bowel syndrome symptom severity, and psychosocial comorbidities. Adherence rate to the diary was defined as the percentage of days completed out of total days. Adherence to the additional web-based questionnaires was also assessed. RESULTS: Overall, 189 patients were included (age: mean 34.0 years, SD 13.3 years; female: 147/189, 77.8%; male: 42/189, 22.2%). The mean adherence rate was 87.9% (SD 9.4%). However, adherence to the diary decreased over time (P<.001). No significant association was found between adherence and gender (P=.84), age (P=.22), or education level (lower education level: P=.58, middle education level: P=.46, versus high education level), while higher anxiety scores were associated with lower adherence (P=.03). Adherence to the online questionnaires was also high (>99%). Missing data due to technical issues were limited. CONCLUSIONS: The use of a smartphone app as a symptom diary to assess treatment response resulted in high patient adherence. The data-collection framework described led to standardized data collection with excellent completeness and can be used for future randomized controlled trials. Due to the slight decrease in adherence to diary use throughout the study, this method might be less suitable for longer trials.

Being mindful at work and at home: A diary study on predictors and consequences of domain-specific mindfulness.

Although previous research on mindfulness predominantly focused on benefits of mindfulness, this study investigates quantitative and emotional demands as contextual antecedents of mindful awareness and acceptance both in the work and home domains. In addition, we examine goal attainment and satisfaction in the work and home domains as consequences of mindful awareness and acceptance. Results of a diary study across 5 workdays with 2 daily measurement occasions among 233 employees revealed that both in the work and home domains, quantitative demands were positively associated with awareness, but not with acceptance, whereas emotional demands were positively associated with acceptance, but not with awareness. Awareness and acceptance were both associated with increased goal attainment and satisfaction in both life domains. We did not find strong evidence for cross-domain relations between demands and mindfulness on the one hand and between mindfulness and goal attainment and satisfaction on the other hand. In sum, this study contributes to a more comprehensive understanding of mindfulness by shedding light on contextualized forms of mindfulness and considering both the awareness and acceptance facets of mindfulness and their contextual predictors and consequences. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Resolution of Hydronephrosis in Children with Dysfunctional Voiding After Biofeedback Therapy: A Randomized Clinical Trial.

We assessed efficacy of biofeedback therapy and home pelvic floor muscle exercises in children with dysfunctional voiding (DV) associated with mild to moderate hydronephrosis. This prospective study comprised fifty seven children (21 boys, 36 girls; mean age 8.9 ± 2.6) with DV and mild to moderate hydronephrosis. Children were randomly allocated into two treatment groups including control group who underwent standard urotherapy and case group who received biofeedback therapy in addition to standard urotherapy. A 99mTc diethylenetriamine pentaacetic acid (99mDTPA) scan, voiding cystoureterography, kidney and bladder ultrasounds, voiding diary and uroflowmetry with electromyography (EMG) were performed in all study participants at the baseline. Children with evidence of complete obstruction in DTPA scan and vesicoureteral reflux were excluded from enrollment. A complete voiding diary, kidney and bladder ultrasounds and uroflowmetry/EMG were also performed 6 months and 1 year after completion of the treatment. We noted a more significant decline in anteroposterior pelvic diameter in case group compared to control group (P < 0.05). The mean maximal urine flow rate prior to treatment was 16.5 ± 2.6 and 16.1 ± 3 ml/s in case and control groups, respectively. This finding increased significantly 1 year after the treatment in case group compared to controls (25 ± 7.2 ml/s vs. 18.4 ± 5.9 ml/s, respectively; P < 0.001). Improvement of various parameters in voiding diary was also more significant in the case group. Biofeedback therapy can effectively resolve non-refluxing and non-obstructive hydronephrosis in children with DV.

Does mindfulness practice promote psychological functioning or is it the other way around? A daily diary study.

Mindfulness-based interventions are commonly used to reduce psychological symptoms and enhance positive qualities of human functioning. However, the influence of mindfulness practice dosage remains poorly understood, limiting dissemination and implementation efforts. The current study examined the association between practice dosage and several constructs related to psychological functioning (positive and negative affect, state mindfulness) over the course of a standardized mindfulness-based intervention (Mindfulness-Oriented Recovery Enhancement). Twenty-five participants completed daily diary assessments for 12 weeks. Two-part gamma regression models examined the dichotomous (did practice occur?) and continuous (how much practice?) components of practice minutes. Practice time and outcomes showed same-day relationships in the expected directions. Lagged models, however, showed no evidence that current day practice time predicts subsequent day outcomes. In contrast, higher current day negative affect predicted less subsequent day practice time, and higher current day mindfulness predicted more subsequent day practice time. In a post hoc analysis, practice time moderated the link between day-to-day affect, strengthening the link for positive affect and weakening the link for negative affect. Collectively, these findings suggest that the causal direction linking practice time and outcome may flow from outcome to practice time, rather than the reverse-with potential recursive relationships between these factors. Further examination of lagged relationships between practice time and outcome as well as random assignment of participants to varying practice dosages (e.g., in within-person microrandomized trials) may help clarify the influence of this central treatment ingredient within mindfulness-based interventions. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Translating the Burden of Pollen Allergy Into Numbers Using Electronically Generated Symptom Data From the Patient's Hayfever Diary in Austria and Germany: 10-Year Observational Study.

BACKGROUND: Pollen allergies affect a significant proportion of the population globally. At present, Web-based tools such as pollen diaries and mobile apps allow for easy and fast documentation of allergic symptoms via the internet. OBJECTIVE: This study aimed to characterize the users of the Patient's Hayfever Diary (PHD), a Web-based platform and mobile app, to apply different symptom score calculations for comparison, and to evaluate the contribution of organs and medications to the total score for the first time. METHODS: The PHD users were filtered with regard to their location in Austria and Germany, significant positive correlation to the respective pollen type (birch/grass), and at least 15 entries in the respective season. Furthermore, 4 different symptom score calculation methods were applied to the datasets from 2009 until 2018, of which 2 were raw symptom scores and 2 were symptom load index (normalized) calculations. Pearson correlation coefficients were calculated pairwise for these 4 symptom score calculations. RESULTS: Users were mostly male and belonged to the age groups of 21 to 40 years or >40 years. User numbers have increased in the last 5 years, especially when mobile apps were made available. The Pearson correlation coefficients showed a significant linear relationship above 0.9 among the 4 symptom score datasets and thus indicated no significant difference between the different methods of symptom score calculation. The nose contributed the most to the symptom score and determined about 40% of the score. CONCLUSIONS: The exact method of calculation of the symptom score is not critical. All computation methods show the same behavior (increase/decrease during the season). Therefore, the symptom load index is a useful computation method in all fields exploring pollen allergy, and Web-based diaries are a globally applicable tool to monitor the effect of pollen on human health via electronically generated symptom data.

In Their Own Words: Experiences of Caregivers of Adults With Cancer as Expressed on Social Media.

PURPOSE: To explore caregivers' writings about their experiences caring for adult individuals with cancer on a social media health communication website. PARTICIPANTS & SETTING: Journal entries (N = 392) were analyzed for 37 adult caregivers who were posting on behalf of 20 individuals with cancer. CaringBridge is a website used by patients and informal caregivers to communicate about acute and chronic disease. METHODOLOGIC APPROACH: A retrospective descriptive study using qualitative content analysis of caregivers' journal entries from 2009 to 2015. FINDINGS: Major categories identified in caregivers' online journals included patient health information, cancer awareness/advocacy, social support, caregiver burden, daily living, emotions (positive and negative), and spirituality. IMPLICATIONS FOR NURSING: Nurses often recommend using social media as a communication strategy for patients with cancer and their caregivers. The findings from this study provide potential guidance nurses may wish to offer caregivers. For example, nurses may talk with caregivers about how and what to post regarding treatment decisions. In addition, nurses can provide support for caregivers struggling with when and how often to communicate on social media.

Filling the gaps: A mixed-methods study exploring the use of patient diaries in the critical care unit.

BACKGROUND: Survivors of critical illness often take time to recovery physically and psychologically from their critical care experience. There is tentative evidence suggesting that the use of a patient or family led diary with entries by nurses, doctors and allied health professionals may help the patient 'fill in the gaps' by making sense of a time they have forgotten. Many have confused or frightening memories and a diary can aid patients and their families in the recovery after critical illness. AIMS: A mixed methods study including a qualitative exploration of the impact of diaries on critical care patients in order to describe the long-term effects of patient diaries. METHODS: A two phase study including a prospective diary intervention and evaluation and subsequent in-depth interviews, using the principles of Grounded Theory. The instruments, Post Traumatic Stress Score-14 (PTSS-14) and EuroQol (EQ-5D-3L), were used to measured post-traumatic stress symptoms and quality of life in the year after diary. A questionnaire about diary use was completed by participants and content analysis of the diary was also undertaken, alongside basic demographics to explore patient characteristics. FINDINGS: For the 50 patients receiving the diary intervention, those completing a diary evaluation, 95% found them helpful and 90% found it helped fill memory gaps. Mean scores for PTSS-14 (cumulative) at four months and 12 months: 30.5 (SD=10.8) and 25.7 (SD=11.7). Mean EuroQol visual analogue scores at four months and 12 months were 77.8 (SD=14.3) and 71.8 (SD=18.5) respectively. Themes from subsequent interviews with eight patients included: providing holistic care, emotional support and empathy and dealing with loss of control. Data confirmed that whilst diaries had broad value in making sense of the critical care experience and their subsequent recovery, not all were able to read them again. Integrated analysis of four data sources suggested the core themes of the diary revealed its value as: a dynamic communication tool integral to holistic care and person-centredness; a reflection of the impact of a critical care event and a resource that helped give a sense of meaning to what had happened. CONCLUSION: Diaries can offer a means of providing clarity for patients who struggle to come to terms with their critical care experience and subsequent recovery, but should be given to patients with forethought and support. It remains unclear which types of patients might benefit most from diaries.

Medication history assessment in research: A randomized controlled trial comparing tablet-based (eMedHAT) versus structured interview (MedHAT).

PURPOSE: Accurate capture of medication use is important for high quality research. For epidemiologic studies, medication histories are the most common measure of exposure when trying to identify associations between medications and outcomes. Concomitant medications can alter the efficacy or safety of study drugs in clinical trials. However, there are few studies evaluating the accuracy and efficiency of methods to collect these histories. The objective of this study is to compare the accuracy of medication histories collected by structured interview to histories captured using a tablet-based application. METHODS: This was a randomized controlled trial. Subjects were instructed to record all prescription medications, non-prescription medications, vitamins, and dietary supplements in a diary for 30 days. At the end of the diary collection, subjects were randomized to providing a medication history during a structured interview by a trained research assistant (MedHAT) or using a tablet-based application (eMedHAT). The accuracy of these histories was compared using an adjusted analysis. We also measured the duration of the history collection and data entry. RESULTS: A total of 111 subjects were in the MedHAT group and 109 subjects were in the eMedHAT group. Recall of medications for the 30-day period was similar for MedHAT and eMedHAT (76.9% versus 75.2%, respectively). The total time required for researchers and subjects for history collection and data entry was 16 minutes shorter for the tablet-based method. CONCLUSIONS: Tablet-based medication histories were as accurate as histories obtained by research assistants and required less time for the researcher.

Diagnostic and Treatment Challenges of Sighted Non-24-Hour Sleep-Wake Disorder.

STUDY OBJECTIVES: To report the diagnostic and treatment challenges of sighted non-24-hour sleep-wake disorder (N24SWD). METHODS: We report a series of seven sighted patients with N24SWD clinically evaluated by history and sleep diaries, and when available wrist actigraphy and salivary melatonin levels, and treated with timed melatonin and bright light therapy. RESULTS: Most patients had a history of a delayed sleep-wake pattern prior to developing N24SWD. The typical sleep-wake pattern of N24SWD was seen in the sleep diaries (and in actigraphy when available) in all patients with a daily delay in midpoint of sleep ranging 0.8 to 1.8 hours. Salivary dim light melatonin onset (DLMO) was evaluated in four patients but was missed in one. The estimated phase angle from DLMO to sleep onset ranged from 5.25 to 9 hours. All six patients who attempted timed melatonin and bright light therapy were able to entrain their sleep-wake schedules. Entrainment occurred at a late circadian phase, possibly related to the late timing of melatonin administration, though the patients often preferred late sleep times. Most did not continue treatment and continued to have a non-24-hour sleep-wake pattern. CONCLUSIONS: N24SWD is a chronic debilitating disorder that is often overlooked in sighted people and can be challenging to diagnose and treat. Tools to assess circadian pattern and timing can be effectively applied to aid the diagnosis. The progressive delay of the circadian rhythm poses a challenge for determining the most effective timing for melatonin and bright light therapies. Furthermore, once the circadian sleep-wake rhythm is entrained, long-term effectiveness is limited because of the behavioral and environmental structure that is required to maintain stable entrainment.

The psychological health benefits of accepting negative emotions and thoughts: Laboratory, diary, and longitudinal evidence.

Individuals differ in the degree to which they tend to habitually accept their emotions and thoughts without judging them-a process here referred to as habitual acceptance. Acceptance has been linked with greater psychological health, which we propose may be due to the role acceptance plays in negative emotional responses to stressors: acceptance helps keep individuals from reacting to-and thus exacerbating-their negative mental experiences. Over time, experiencing lower negative emotion should promote psychological health. To test these hypotheses, Study 1 (N = 1,003) verified that habitually accepting mental experiences broadly predicted psychological health (psychological well-being, life satisfaction, and depressive and anxiety symptoms), even when controlling for potentially related constructs (reappraisal, rumination, and other mindfulness facets including observing, describing, acting with awareness, and nonreactivity). Next, in a laboratory study (Study 2, N = 156), habitual acceptance predicted lower negative (but not positive) emotional responses to a standardized stressor. Finally, in a longitudinal design (Study 3, N = 222), acceptance predicted lower negative (but not positive) emotion experienced during daily stressors that, in turn, accounted for the link between acceptance and psychological health 6 months later. This link between acceptance and psychological health was unique to accepting mental experiences and was not observed for accepting situations. Additionally, we ruled out potential confounding effects of gender, ethnicity, socioeconomic status, and life stress severity. Overall, these results suggest that individuals who accept rather than judge their mental experiences may attain better psychological health, in part because acceptance helps them experience less negative emotion in response to stressors. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Participatory methodologies in research with children: creative and innovative approaches. / Metodologias participativas em pesquisa com crianças: abordagens criativas e inovadoras.

OBJECTIVE: To describe the use of participatory methodologies in research with children. METHODS: Experience report with a qualitative approach, conducted with children between six and eleven years of age, from a municipal school in Pelotas and in the Psychosocial Children and Youth Care Center, in São Lourenço do Sul, both municipalities of the Rio Grande do Sul State. Data collection was based on records made in field and observation diaries, held from April to July 2016. RESULTS: The report pointed out that the Photovoice promoted motivation in the group, in addition to increasing the self-esteem and self-confidence of children. The Five Field Map made it possible to help children express feelings through the game. CONCLUSION: Photovoice and the Five Field Map are seen as tools that enable new methodological approaches in research with children, facilitating the construction of the proposed activities aimed at innovative and creative research processes in health/nursing.

Metodologias participativas em pesquisa com crianças: abordagens criativas e inovadoras / Metodologías de investigación participativa con niños: enfoques creativos e innovadores / Participatory methodologies in research with children: creative and innovative approaches

RESUMO Objetivo Relatar a experiência da utilização de metodologias participativas em pesquisa com crianças. Métodos Relato de experiência com abordagem qualitativa, realizado com crianças entre seis e onze anos de uma escola municipal, em Pelotas, e do Centro de Atenção Psicossocial Infantojuvenil, em São Lourenço do Sul, ambos municípios do Estado do Rio Grande do Sul. A coleta de dados foi baseada em registros feitos em diários de campo e observação, realizada de abril a julho de 2016. Resultados O relato apontou que o Photovoice promoveu a motivação entre o grupo e elevou a autoestima e a autoconfiança das crianças. O Mapa dos Cinco Campos possibilitou às crianças expressar sentimentos por intermédio do jogo. Conclusão Compreende-se que o Photovoice e o Mapa dos Cinco Campos são instrumentos que viabilizam novas abordagens metodológicas nas pesquisas com crianças, facilitando a construção das propostas de atividades que visam processos inovadores e criativos de pesquisa em saúde/enfermagem.

RESUMEN Objetivo Presentar la experiencia de usar enfoques participativos en la investigación con niños. Métodos Informe de experiencia con un enfoque cualitativo, realizado con niños de entre seis y once años, de una escuela municipal en Pelotas y en el Cuidado de Niños y Jóvenes Centro Psicosocial, en São Lourenço do Sul, ambos municipios de Rio Grande do Sul. La recogida de datos se basa en los registros realizados en diarios de campo y observación, de abril a julio de 2016. Resultados el informe señaló que la Fotovoz promueve la motivación entre el grupo, el aumento de la autoestima, autoconfianza de los niños. El Mapa de cinco campos y ayudan a los niños a expresar sus sentimientos por medio del juego. Conclusión Se entiende que el Fotovoz y mapa de cinco campos son herramientas que permiten los nuevos enfoques metodológicos de la investigación con los niños, lo que facilita la construcción de las actividades propuestas dirigidas a los procesos creativos e innovadores de la investigación en salud/enfermería.

ABSTRACT Objective To describe the use of participatory methodologies in research with children. Methods Experience report with a qualitative approach, conducted with children between six and eleven years of age, from a municipal school in Pelotas and in the Psychosocial Children and Youth Care Center, in São Lourenço do Sul, both municipalities of the Rio Grande do Sul State. Data collection was based on records made in field and observation diaries, held from April to July 2016. Results The report pointed out that the Photovoice promoted motivation in the group, in addition to increasing the self-esteem and self-confidence of children. The Five Field Map made it possible to help children express feelings through the game. Conclusion Photovoice and the Five Field Map are seen as tools that enable new methodological approaches in research with children, facilitating the construction of the proposed activities aimed at innovative and creative research processes in health/nursing.