Symptoms In Daily Life Research Articles

Exercise moderates longitudinal group psychopathology networks in individuals with eating disorders

Individuals with eating disorders (EDs) often engage in exercise no matter potential negative long-term outcomes (e.g., weight loss, injury). Yet exercising may temporarily attenuate ED symptoms, but whether exercise also affects network structure and pairwise associations of ED symptoms remained unclear. We used a novel approach called Moderated Multilevel Graphical Vector Autoregression to estimate changes in psychopathology networks from before to after exercising in ecological momentary assessment data from 102 individuals with EDs across multiple days (M = 22.14, SD = 5.40; range: 6–22 days) at 4 times daily. Between-person and within-person temporal networks were computed, obtaining stable centrality coefficients for temporal networks only. In those, autoregressive effects of several symptoms, including binge-eating, overeating, or weighing oneself, were attenuated when participants previously exercised. Exercise mostly downregulated temporal effects of ED symptoms on other symptoms, including effects of binge eating and other compensatory behaviors on feeling guilty after the most recent meal, vomiting on weighing oneself, and overeating on fear of weight gain. Our study highlights the complex dynamic effects of exercise on ED symptoms in daily life and calls for novel studies investigating mechanisms of exercise to inform treatments targeting detrimental long-term effects of exercise in EDs.

Real-time biopsychosocial antecedents and correlates of functional neurological symptoms in daily life: A pilot remote monitoring technology study

Functional neurological symptom disorder (FNSD) is a neuropsychiatric diagnosis referring to symptoms resembling those of neurological disorders, occurring without causal neuropathology. FNSD has a complex biopsychosocial aetiology but its mechanisms are poorly understood. Remote monitoring technologies (RMT) could provide critical insights into functional neurological symptoms (FNS) in real-world contexts. We examined the feasibility and acceptability of a novel RMT protocol, to identify psychobiological correlates and antecedents of FNS in everyday life. Seventeen individuals with FNS (seizures/motor) and 17 healthy controls (HC) completed ecological momentary assessments (EMA) eight times daily for 1-week, reporting FNS severity, associated physical and psychological symptoms, and subjectively significant events. Sleep quality was reported daily. Physiological variables were measured using wearable Fitbit 5 devices. Multilevel modelling examined variables associated with FNS variability. Average EMA completion rates were good in both groups (≥80%). At week-level, the FNS group reported significantly greater subjective arousal, pain, fatigue, dissociation, negative affect, daily events, stressful events, and sleep duration, compared to HC. Objective sleep disturbance and duration, and resting heartrate, were also significantly greater in the FNS sample. FNS severity correlated significantly with daily events, affect, subjective arousal, pain, fatigue and sleep disturbance, at day- or within-day levels. Daily events and negative affect were the most prominent time-lagged predictors of within-day moment-to-moment FNS severity. RMTs are feasible and acceptable tools for investigation of FNS in real-world settings, revealing daily events and negative affect as possible triggers of FNS. Interventions targeting affective reactivity and regulation might be beneficial in this group. Larger-scale, longer-term RMT studies are needed in this population.

Platelet changes and bleeding symptoms in children, adolescents, and adults with 22q11.2 deletion syndrome.

The deletion region of 22q11.2 deletion syndrome (22q11.2DS) contains a gene encoding glycoprotein Ibβ (GPIbβ), which is required to express the GPIb/IX/V complex on the platelet surface. Therefore, patients with 22q11.2DS may have congenital platelet disorders. However, information is limited on platelets and bleeding symptoms. In this study, we investigated clinical information, including bleeding symptoms, platelet counts, and GPIb expression levels in children and adolescents/adults with 22q11.2DS. Thirty-two patients with 22q11.2DS were enrolled in a prospective cohort study between 2022 and 2023 at outpatient clinics within our institute. The median platelet counts in adolescents/adults with 22q11.2DS were significantly lower than those in children (p<.0001). A gradual decrease was found along with increasing age (p=.0006). Values of median GPIb expression on platelet surfaces (66% in children and 70% in adolescents/adults) were significantly lower than those in healthy controls (p<.0001 and p=.0002). Bleeding symptoms included surgery-related bleeding (52%), purpura (31%), and epistaxis (22%); most of them were minor. The median International Society on Thrombosis and Hemostasis bleeding assessment tool score was not significantly different between children and adolescents/adults (p=.2311). Although there was an age-related decrease in platelet count and a disease-related decrease in GPIb expression, no difference in bleeding symptoms was found between children and adolescents/adults. 22q11.2DS overall had minor bleeding symptoms in daily life, and the disease had little effect on spontaneous bleeding. However, some patients had major bleeding events; further accumulation of data on hemostasis during surgery and trauma is required.

The Role of Defeatist Performance Beliefs in State Fluctuations of Negative Symptoms in Schizophrenia Measured in Daily Life via Ecological Momentary Assessment.

The Cognitive Model of Negative Symptoms is a prominent model that posits that defeatist performance beliefs (DPB) are a key psychological mechanism underlying negative symptoms in those with schizophrenia (SZ). However, the ecological validity of the model has not been established, and temporally specific evaluations of the model's hypotheses have not been conducted. This study tested the model's key hypotheses in real-world environments using ecological momentary assessment (EMA). Fifty-two outpatients with SZ and 55 healthy controls (CN) completed 6 days of EMA. Multilevel models examined concurrent and time-lagged associations between DPB and negative symptoms in daily life. SZ displayed greater DPB in daily life than CN. Furthermore, greater DPB were associated with greater concurrently assessed negative symptoms (anhedonia, avolition, and asociality) in daily life. Time-lagged analyses indicated that in both groups, greater DPB at time t led to elevations in negative symptoms (anhedonia, avolition, or asociality) at t + 1 above and beyond the effects of negative symptoms at time t. Results support the ecological validity of the Cognitive Model of Negative Symptoms and identify a temporally specific association between DPB and subsequent negative symptoms that is consistent with the model's hypotheses and a putative mechanistic pathway in Cognitive Behavioral Therapy for negative symptoms. Findings suggest that DPB are a psychological factor contributing to negative symptoms in real-world environments. Implications for measuring DPB in daily life and providing just-in-time mobile health-based interventions to target this mechanism are discussed.

Using Multimodal Assessments to Reevaluate Depression Designations for Spine Surgery Candidates.

Depression is common in spine surgery candidates and may influence postoperative outcomes. Ecological momentary assessments (EMAs) can overcome limitations of existing depression screening methods (e.g., recall bias, inaccuracy of historical diagnoses) by longitudinally monitoring depression symptoms in daily life. In this study, we compared EMA-based depression assessment with retrospective self-report (a 9-item Patient Health Questionnaire [PHQ-9]) and chart-based depression diagnosis in lumbar spine surgery candidates. We further examined the associations of each depression assessment method with surgical outcomes. Adult patients undergoing lumbar spine surgery (n = 122) completed EMAs quantifying depressive symptoms up to 5 times daily for 3 weeks preoperatively. Correlations (rank-biserial or Spearman) among EMA means, a chart-based depression history, and 1-time preoperative depression surveys (PHQ-9 and Psychache Scale) were analyzed. Confirmatory factor analysis was used to categorize PHQ-9 questions as somatic or non-somatic; subscores were compared with a propensity score-matched general population cohort. The associations of each screening modality with 6-month surgical outcomes (pain, disability, physical function, pain interference) were analyzed with multivariable regression. The association between EMA Depression scores and a depression history was weak (rrb = 0.34 [95% confidence interval (CI), 0.14 to 0.52]). Moderate correlations with EMA-measured depression symptoms were observed for the PHQ-9 (rs = 0.51 [95% CI, 0.37 to 0.63]) and the Psychache Scale (rs = 0.68 [95% CI, 0.57 to 0.76]). Compared with the matched general population cohort, spine surgery candidates endorsed similar non-somatic symptoms but significantly greater somatic symptoms on the PHQ-9. EMA Depression scores had a stronger association with 6-month surgical outcomes than the other depression screening modalities did. A history of depression in the medical record is not a reliable indication of preoperative depression symptom severity. Cross-sectional depression assessments such as PHQ-9 have stronger associations with daily depression symptoms but may conflate somatic depression symptoms with spine-related disability. As an alternative to these methods, mobile health technology and EMAs provide an opportunity to collect real-time, longitudinal data on depression symptom severity, potentially improving prognostic accuracy. Diagnostic Level III. See Instructions for Authors for a complete description of levels of evidence.

Temporal associations between trauma-related sleep disturbances and PTSD symptoms: An experience sampling study.

There is robust evidence for the influence of sleep disturbances on the maintenance of PTSD symptoms. However, little is known about day-to-day variation in trauma-related sleep disturbances (namely insomnia symptoms and nightmares) and their associations with PTSD symptoms. Therefore, we explored the dynamic interplay of these symptoms in daily life using an experience sampling method (ESM). For 15 consecutive days, participants with PTSD symptomatology as primary complaint (N = 48) reported momentary levels of insomnia symptoms and nightmares as well as PTSD symptoms via a mobile app. Multilevel model analyses revealed that insomnia and nightmares were significant predictors of PTSD symptomatology on the following day; furthermore, nightmares were predictive of each of the four PTSD symptom clusters, namely reexperiencing, avoidance, cognition and hyperarousal as well as symptoms of dissociation. However, PTSD symptoms did not predict insomnia or nightmares during the following night. Multilevel mediation analyses suggested that nightmares mediate the relationship between insomnia and next-day PTSD symptoms. These findings support accumulating evidence that trauma-related sleep disturbances play an important role in the maintenance of PTSD symptoms, by elevating symptoms daily. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

An evaluation of the moderating effects of routine and busyness on the relationship between prospective memory and everyday functioning in older persons with HIV disease

ABSTRACT Introduction People living with HIV (PLWH) often experience difficulties in everyday functioning, which can arise in part from deficits in the strategic/executive aspects of prospective memory (PM). Using Suchy’s Contextually Valid Executive Assessment (ConVExA) framework, this study sought to determine whether the contextual factors of busyness and routine moderate the relationship between the strategic/executive aspects of PM and everyday functioning in older PLWH. Methods Participants in this cross-sectional analysis were 145 PLWH aged 50 years and older who had completed the Martin and Park Environmental Demands (MPED) questionnaire of routine and busyness, the performance-based Cambridge Test of Prospective Memory, and self-report measures of activities of daily living (ADLs) and cognitive symptoms in daily life. Results Multiple regression analyses covarying for relevant comorbidities showed that higher levels of busyness – but not routine – were associated with more frequent cognitive symptoms in daily life. Neither busyness nor routine interacted with PM in association with cognitive symptoms. However, routine and a strategic/executive measure of PM interacted in predicting ADLs; specifically, the association between time-based PM and ADLs was stronger in persons with higher levels of routine in their daily lives. Parallel analyses with less executively-demanding event-based PM were null and small. Conclusions Overall, findings provided mixed – and unexpected – evidence for the associations between contextual factors (i.e. routine and busyness), everyday functioning, and PM in this sample of older adults with HIV disease. Results and clinical implications are interpreted and discussed in the framework of the ConVExA model.

Photosensitivity and self-induction in patients aged 50 and older.

Photosensitivity is known to occur predominantly in children and adolescents and with a clear female predominance. Little is known on the prevalence of photosensitivity in older patients (50+) and its phenotypical appearance. A retrospective observational study was performed investigating the prevalence of a photoparoxysmal EEG response (PPR) on at least one EEG during the period 2015-2021. Data were gathered from patients aged 50 years and older by retrieving clinical and EEG characteristics from existing medical records. Data on photosensitivity-related symptoms in daily life were gathered with telephone interviewing. In 248 patients a PPR had been elicited, of whom 16 patients (6.5%) were 50 years or older. In older patients, photosensitivity was a persistent feature of childhood-onset epilepsy (n = 8), of adult-onset epilepsy (n = 7), or an incidental finding (n = 1). In the 50+ group, 56% of photosensitive patients was female, whereas 72% in the total PPR-group. In six of 16 older patients, eye closure sensitivity was observed; two of these patients reported self-induction. Symptoms of photosensitivity in daily life were present in eight out of nine patients who consented in a telephone interview. For seven of these patients, wearing sunglasses was helpful. Female preponderance for photosensitivity was not found in epilepsy patients of 50 years and older. In 44% of the older photosensitive patients in this series, the PPR was a feature of adult-onset epilepsy. Symptoms of photosensitivity in daily life in older patients with epilepsy seem comparable to those in younger patients, and thus worthwhile to diagnose and treat them equally.

Seeing the Invisible: A Photovoice Exploration of Living With and Managing the Invisible Symptoms of Multiple Sclerosis

In this photovoice study, we explored how people with multiple sclerosis (MS) experience living with and managing invisible symptoms in daily life. Twelve people with MS produced digital images over a 2-week period to capture their experiences of invisible symptoms. Participants then discussed their images in semistructured interviews. We thematically analyzed the interviews and developed three main themes that encompass the difficulties around conceptualizing invisible symptoms and the conflicts of legitimacy this presents for people with MS, in which the reality of their invisible symptoms is invalidated by others and sometimes for themselves. Participants navigated these issues in dynamic ways, choosing to fit their symptoms to their lives or make space for their symptoms depending on the context, often influenced by a desire to “stay invisible” or to “be seen.” We highlight clinical implications for supporting people with MS around the legitimacy conflicts they experience and how they negotiate living with invisible symptoms.

Affect and post-COVID-19 symptoms in daily life: An exploratory experience sampling study.

Insight into the daily life experiences of patients with post-COVID-19 syndrome is lacking. The current study explored temporal fluctuations of and associations between positive and negative affect and symptoms throughout the day in previously hospitalised post-COVID-19 patients using an experience sampling methodology. Ten participants (age: median = 60, interquartile range = 9 years; 50% women; 80% ≥1 comorbidity; 8-12 months since hospital discharge) filled out brief online questionnaires, six times a day for 14 consecutive days. Positive and negative affect, and self-reported symptoms (physical and mental fatigue, cognitive functioning, dyspnoea, and pain) were assessed in real-time. Primarily, graphs were analysed to assess the individual longitudinal courses of and (concurrent and time-lagged) associations between affect and symptoms. Secondly, correlations or multilevel linear regression models were used to support these interpretations. Visual assessment showed limited temporal fluctuation in affect and symptoms. All symptoms appeared to associate positively with each other (correlations between .26 and .85). Positive affect was associated with lower symptoms severity (β's between -.28 and -.67), and negative affect with higher symptoms severity (β's between .24 and .66). Time-lagged analyses showed that-adjusted for residual symptom severity of prior measurements-both types of affect predicted symptom severity two hours later (β's between -.09 and -.31 for positive affect; between .09 and .28 for negative affect). These findings suggest that positive and negative affect may play important roles in post-COVID-19 symptom experience and temporal fluctuation.

Negative emotion differentiation in trauma-exposed community members: Associations with posttraumatic stress disorder symptoms in daily life.

The ability to make fine-grained distinctions between discrete negative emotions-termed negative emotion differentiation (NED)-is important for emotion regulation and psychological well-being. Posttraumatic stress disorder (PTSD) is associated with elevated trauma-related negative emotions (e.g., fear, anger, guilt, shame) and self-reported difficulty identifying feelings, suggesting that low NED may be a feature of PTSD. PTSD is also characterized by overreliance on avoidance as an emotion regulation strategy-a characteristic that could be influenced by low NED. Here, we examined whether NED is reduced in PTSD and the role NED plays in the association between trauma-related avoidance and other PTSD symptoms (traumatic reexperiencing, negative alterations in cognition and mood, alterations in arousal and reactivity). Hypotheses were tested using 3 days of ecological momentary assessment (up to 17 prompts per day) in 80 trauma-exposed participants (39 with PTSD, 41 without PTSD; total completed surveys = 2,158). NED was reduced and self-reported difficulty identifying feelings was elevated in those with PTSD, and both predicted PTSD severity (Clinician-Administered PTSD Scale-5 score) and momentary PTSD symptoms. Furthermore, low NED, but not difficulty identifying feelings, predicted a stronger association between momentary trauma-related avoidance and PTSD symptoms. Results suggest that NED is involved in the emotional processing of trauma by decreasing the negative impact of avoidance behavior on other PTSD symptoms. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Effects of a dissociative drug on fronto-limbic resting-state functional connectivity in individuals with posttraumatic stress disorder: a randomized controlled pilot study

RationaleA subanesthetic dose of ketamine, a non-competitive N-methyl-D-aspartate glutamate receptor (NMDAR) antagonist, elicits dissociation in individuals with posttraumatic stress disorder (PTSD), who also often suffer from chronic dissociative symptoms in daily life. These debilitating symptoms have not only been linked to worse PTSD trajectories, but also to increased resting-state functional connectivity (RSFC) between medial prefrontal cortex (mPFC) and amygdala, supporting the conceptualization of dissociation as emotion overmodulation. Yet, as studies were observational, causal evidence is lacking.ObjectivesThe present randomized controlled pilot study examines the effect of ketamine, a dissociative drug, on RSFC between mPFC subregions and amygdala in individuals with PTSD.MethodsTwenty-six individuals with PTSD received either ketamine (0.5mg/kg; n = 12) or the control drug midazolam (0.045mg/kg; n = 14) during functional magnetic resonance imaging (fMRI). RSFC between amygdala and mPFC subregions, i.e., ventromedial PFC (vmPFC), dorsomedial PFC (dmPFC) and anterior-medial PFC (amPFC), was assessed at baseline and during intravenous drug infusion.ResultsContrary to pre-registered predictions, ketamine did not promote a greater increase in RSFC between amygdala and mPFC subregions from baseline to infusion compared to midazolam. Instead, ketamine elicited a stronger transient decrease in vmPFC-amygdala RSFC compared to midazolam.ConclusionsA dissociative drug did not increase fronto-limbic RSFC in individuals with PTSD. These preliminary experimental findings contrast with prior correlative findings and call for further exploration and, potentially, a more differentiated view on the neurobiological underpinning of dissociative phenomena in PTSD.

Refocusing of Attention on Positive Events Using Monitoring-Based Feedback and Microinterventions for Patients With Chronic Musculoskeletal Pain in the PerPAIN Randomized Controlled Trial: Protocol for a Microrandomized Trial.

Chronic musculoskeletal pain (CMSP) affects between 13% and 47% of the population, with a global growth rate of 20.3% within the last 15 years, suggesting that there is a high need for effective treatments. Pain diaries have long been a common tool in nonpharmacological pain treatment for monitoring and providing feedback on patients' symptoms in daily life. More recently, positive refocusing techniques have come to be used, promoting pain-free episodes and positive outcomes rather than focusing on managing the pain. This study aims to evaluate the feasibility (ie, acceptability, intervention adherence, and fidelity) and initial signals of efficacy of the PerPAIN app, an ecological momentary intervention for patients with CMSP. The app comprises digitalized monitoring using the experience sampling method (ESM) and feedback. In addition, the patients receive 3 microinterventions targeted at refocusing of attention on positive events. In a microrandomized trial, we will recruit 35 patients with CMSP who will be offered the app for 12 weeks. Participants will be prompted to fill out 4 ESM monitoring questionnaires a day assessing information on their current context and the proximal outcome variables: absence of pain, positive mood, and subjective activity. Participants will be randomized daily and weekly to receive no feedback, verbal feedback, or visual feedback on proximal outcomes assessed by the ESM. In addition, the app will encourage participants to complete 3 microinterventions based on positive psychology and cognitive behavioral therapy techniques. These microinterventions are prompts to report joyful moments and everyday successes or to plan pleasant activities. After familiarizing themselves with each microintervention individually, participants will be randomized daily to receive 1 of the 3 exercises or none. We will assess whether the 2 feedback types and the 3 microinterventions increase proximal outcomes at the following time point. The microrandomized trial is part of the PerPAIN randomized controlled trial (German Clinical Trials Register DRKS00022792) investigating a personalized treatment approach to enhance treatment outcomes in CMSP. Approval was granted by the Ethics Committee II of the University of Heidelberg on August 4, 2020. Recruitment for the microrandomized trial began in May 2021 and is ongoing at the time of submission. By October 10, 2022, a total of 24 participants had been enrolled in the microrandomized trial. This trial will provide evidence on the feasibility of the PerPAIN app and the initial signals of efficacy of the different intervention components. In the next step, the intervention would need to be further refined and investigated in a definitive trial. This ecological momentary intervention presents a potential method for offering low-level accessible treatment to a wide range of people, which could have substantial implications for public health by reducing disease burden of chronic pain in the population. DERR1-10.2196/43376.

Association of Self-Reported Autonomic Symptoms With Sensor-Based Physiological Measures.

Autonomic regulation of organ and tissues may give rise to disruptions of typical functions. The Body Perception Questionnaire Short Form (BPQ-SF) includes items that were developed to assess autonomic symptoms in daily life. This pair of studies aimed to establish previously unexplored psychometric properties of the BPQ-SF autonomic symptoms scale, develop normative values for clinical and research use, and assess the convergence of self-reports with sensor-based measures. Study 1 reports exploratory and confirmatory factor analysis on BPQ-SF autonomic symptom items from a large US population-based online study ( n = 2048). In study 2, BPQ-SF scores were examined for associations with heart period, respiratory sinus arrhythmia, and skin conductance during seated leg lifts in a community sample ( n = 62). Study 1 results supported a two-factor supradiaphragmatic and subdiaphragmatic autonomic symptom solution (confirmatory factor analysis: root mean squared error of approximation = 0.040, Comparative Fit Index = 0.99, Tucker-Lewis Index = 0.99), although a one-factor solution also fit the data well (root mean squared error of approximation = 0.080, Comparative Fit Index = 0.99, Tucker-Lewis Index = 0.99). In study 2, heart period responses to leg lifts and rests were demonstrated at all autonomic symptom levels. However, low autonomic symptoms were associated with optimal autonomic nervous system patterns of activation and recovery to baseline levels. Moderate symptoms were associated with prolonged sympathetic activation. The highest symptom levels were associated with impaired autonomic nervous system coordination across activation and recovery. Results support the utility of self-reports of autonomic symptoms in research and clinical applications, with higher symptoms likely indicating autonomic impairment.

Computer use: a protective factor for cognition in aging and HIV disease?

Modifiable lifestyle factors such as engagement with technology may be beneficial to cognition in older adults, but we know little about these relationships in older persons with chronic medical conditions. The current study examined the association between computer use frequency and cognition in younger and older adults with and without HIV disease. Participants included 110 older persons with HIV (pwHIV; age ≥ 50years), 84 younger pwHIV (age ≤ 40years), 76 older HIV-, and 66 younger HIV- adults who completed a comprehensive medical, psychiatric, and cognitive research assessment. Demographically adjusted scores were derived from a well-validated clinical battery of performance-based neuropsychological tests. Participants also completed self-reported measures of cognitive symptoms in daily life and the Brief Computer Use and Anxiety Questionnaire (BCUAQ). Older age was associated with less frequent computer use among persons with and without HIV disease. More frequent computer use was strongly and independently related to better cognitive performance, particularly in higher order domains (e.g., episodic memory and executive functions) and among the older seronegative adults. A small, univariable correlation between more frequent computer use and fewer cognitive symptoms in daily life was observed in the full sample, but that relationship was better explained by computer-related anxiety and HIV/age study group. These findings add to the existing literature that suggests regular engagement with digital technologies may have a beneficial impact on cognitive functioning, consistent with the technological reserve hypothesis.

Social interpretation inflexibility moderates emotional reactions to social situations in children and adolescents.

Interpretation biases and inflexibility (i.e., difficulties revising interpretations) have been linked to increased internalizing symptoms. Although adolescence is a developmental period characterized by novel social situations and increased vulnerability to internalizing disorders, no studies have examined interpretation inflexibility in adolescents. Additionally, no studies (on adolescents or adults) have examined interpretation flexibility as a protective factor against adverse outcomes of interpersonal events. Using a novel task and a 28-day diary we examined relations among interpretation bias and inflexibility, internalizing symptoms, and negative interpersonal events in a sample of children and adolescents (N = 159, ages 9-18). At baseline, negative interpretation bias was positively correlated with social anxiety symptoms, and positive interpretation bias negatively correlated with social anxiety and depressive symptoms. Inflexible positive interpretations were correlated with higher social anxiety and depressive symptoms, while inflexible negative interpretations were correlated with higher social anxiety. Finally, interpretation inflexibility moderated daily associations between negative interpersonal events and depressive symptoms in daily life, such that higher inflexibility was associated with stronger associations between interpersonal events and subsequent depressive symptoms, potentially increasing depressive symptom instability. These results suggest that interpretation biases and inflexibility may act as both risk and protective factors for adolescent anxiety and depression.

Psychosocial adjustment and its influencing factors among head and neck cancer survivors after radiotherapy: A cross-sectional study.

Psychosocial adjustment is an important issue in patients' long-term survival. Understanding psychosocial adjustment and its influencing factors in head and neck cancer survivors after radiotherapy is essential to help them return to society and lead a normal life. The purpose of this study was to describe the level of psychosocial adjustment and explore its influencing factors in head and neck cancer patients. Between May 2019 and May 2022, 253 head and neck cancer survivors at a tertiary hospital in northeast China were enrolled in a cross-sectional study. The research instruments comprised the Demographic and Clinical Characteristics Questionnaire, the Self-report Psychosocial Adjustment to Illness Scale (PAIS-SR), the General Self-efficacy Scale (GSES), the Social Support Rating Scale (SSRS) and the M.D. Anderson Symptom Survey-head and neck Questionnaire (MDASI-H&N). The mean PAIS-SR score was 42.31±16.70 (moderate). The multiple regression model revealed that 73.2% of the variance in psychosocial adjustment was explained by marital status (β = -0.114, P=0.005), return to work or not (β = -0.275, P<0.01), self-efficacy (β = -0.327, P<0.01), subjective support (β = -0.106, P=0.043), utilization of support (β = -0.172, P<0.01), and trouble with symptoms in daily life (β = 0.138, P=0.021). The psychosocial adjustment of head and neck cancer survivors after radiotherapy is an issue that needs to be addressed, and medical staff should develop effective, individualized interventions to improve their psychosocial adjustment by increasing their social support, improving their self-efficacy and strengthening symptom management according to their actual situation.

Deep brain stimulation for Parkinson's disease: A case for patient empowerment

Deep brain stimulation for Parkinson's disease: A case for patient empowerment

Mothering a Child with ADHD in the Ultra-Orthodox Community.

Mothers of children with ADHD are at risk for negative health outcomes. The socio-cultural environment and everyday experiences in life roles may influence psychological health and quality of life. The ultra-orthodox Jewish (UOJ) community is an insular community who is underrepresented in the research, and as such there are no studies exploring the experience of mothering a child in this community. Thus, this study aims to explore the lived experience of mothering a child with ADHD in the UOJ community. The study used a descriptive qualitative phenomenological approach. Ten UOJ mothers of children with ADHD underwent semi-structured in-depth interviews to explore their lived experiences of mothering a child with ADHD. Thematic analysis was carried out on the transcripts. Four main themes, along with several subthemes, emerged from the qualitative analysis: child ADHD manifestations, maternal role, social factors, and self-care. Unique characteristics of the UOJ culture were apparent throughout the themes. UOJ children with ADHD display similar manifestations of symptoms in daily life to those in the general population and maternal burden is similarly present. However, unique perceptions of their maternal role, social factors, and legitimacy for self-care shed light into the impact of this culture on their lived experience. Findings may help promote culturally sensitive health care and interventions for this understudied population.

Patient reported outcomes for phosphomannomutase 2 congenital disorder of glycosylation (PMM2-CDG): listening to what matters for the patients and health professionals

BackgroundCongenital disorders of glycosylation (CDG) are a growing group of rare genetic disorders. The most common CDG is phosphomannomutase 2 (PMM2)-CDG which often has a severe clinical presentation and life-limiting consequences. There are no approved therapies for this condition. Also, there are no validated disease-specific quality of life (QoL) scales to assess the heterogeneous clinical burden of PMM2-CDG which presents a challenge for the assessment of the disease severity and the impact of a certain treatment on the course of the disease.Aim and methodsThis study aimed to identify the most impactful clinical signs and symptoms of PMM2-CDG, and specific patient and observer reported outcome measures (PROMs and ObsROMs, respectively) that can adequately measure such impact on patients’ QoL. The most burdensome signs and symptoms were identified through input from the CDG community using a survey targeting PMM2-CDG families and experts, followed by family interviews to understand the real burden of these symptoms in daily life. The list of signs and symptoms was then verified and refined by patient representatives and medical experts in the field. Finally, a literature search for PROMs and ObsROMs used in other rare or common diseases with similar signs and symptoms to those of PMM2-CDG was performed.ResultsTwenty-four signs/symptoms were identified as the most impactful throughout PMM2-CDG patients’ lifetime. We found 239 articles that included tools to measure those community-selected PMM2-CDG symptoms. Among them, we identified 80 QoL scales that address those signs and symptoms and, subsequently, their psychometric quality was analysed. These scales could be applied directly to the PMM2-CDG population or adapted to create the first PMM2-CDG-specific QoL questionnaire.ConclusionIdentifying the impactful clinical manifestations of PMM2-CDG, along with the collection of PROMs/ObsROMs assessing QoL using a creative and community-centric methodology are the first step towards the development of a new, tailored, and specific PMM2-CDG QoL questionnaire. These findings can be used to fill a gap in PMM2-CDG clinical development. Importantly, this methodology is transferable to other CDG and rare diseases with multiple signs and symptoms.