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1.
Neuroimage ; 292: 120604, 2024 Apr 15.
Article in English | MEDLINE | ID: mdl-38604537

ABSTRACT

Despite its widespread use, resting-state functional magnetic resonance imaging (rsfMRI) has been criticized for low test-retest reliability. To improve reliability, researchers have recommended using extended scanning durations, increased sample size, and advanced brain connectivity techniques. However, longer scanning runs and larger sample sizes may come with practical challenges and burdens, especially in rare populations. Here we tested if an advanced brain connectivity technique, dynamic causal modeling (DCM), can improve reliability of fMRI effective connectivity (EC) metrics to acceptable levels without extremely long run durations or extremely large samples. Specifically, we employed DCM for EC analysis on rsfMRI data from the Human Connectome Project. To avoid bias, we assessed four distinct DCMs and gradually increased sample sizes in a randomized manner across ten permutations. We employed pseudo true positive and pseudo false positive rates to assess the efficacy of shorter run durations (3.6, 7.2, 10.8, 14.4 min) in replicating the outcomes of the longest scanning duration (28.8 min) when the sample size was fixed at the largest (n = 160 subjects). Similarly, we assessed the efficacy of smaller sample sizes (n = 10, 20, …, 150 subjects) in replicating the outcomes of the largest sample (n = 160 subjects) when the scanning duration was fixed at the longest (28.8 min). Our results revealed that the pseudo false positive rate was below 0.05 for all the analyses. After the scanning duration reached 10.8 min, which yielded a pseudo true positive rate of 92%, further extensions in run time showed no improvements in pseudo true positive rate. Expanding the sample size led to enhanced pseudo true positive rate outcomes, with a plateau at n = 70 subjects for the targeted top one-half of the largest ECs in the reference sample, regardless of whether the longest run duration (28.8 min) or the viable run duration (10.8 min) was employed. Encouragingly, smaller sample sizes exhibited pseudo true positive rates of approximately 80% for n = 20, and 90% for n = 40 subjects. These data suggest that advanced DCM analysis may be a viable option to attain reliable metrics of EC when larger sample sizes or run times are not feasible.


Subject(s)
Brain , Connectome , Magnetic Resonance Imaging , Humans , Magnetic Resonance Imaging/methods , Magnetic Resonance Imaging/standards , Sample Size , Connectome/methods , Connectome/standards , Reproducibility of Results , Brain/diagnostic imaging , Brain/physiology , Adult , Female , Male , Rest/physiology , Time Factors
3.
Neurooncol Pract ; 11(1): 26-35, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38222049

ABSTRACT

Background: Post-traumatic growth (PTG) has been extensively explored within general oncology, yet little is known about the experience of PTG in neuro-oncology. This study aimed to determine the representation of patients with primary brain tumors (PBT) in the PTG literature. Methods: PsycINFO, PubMed, and CINAHL were systematically searched from inception to December 2022. Search terms were related to personal growth and positive reactions to cancer. Articles were first screened by titles and abstracts, then full texts were reviewed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses method. Results: A total of 382 articles met the inclusion criteria. Of those, 13 included patients with PBT. Over 100 000 cancer patients were represented, with 0.79% having a PBT. Most research focused on low-grade gliomas. PTG negatively correlated with post-traumatic stress symptoms and avoidant coping. In the sole longitudinal study, patients with PBT demonstrated improved PTG after 1 year. Three quasi-experimental studies investigated the effect of mindfulness-based interventions with mixed-cancer samples and demonstrated improvement in PTG. Conclusions: The inclusion rate of patients with PBT in the PTG literature was significantly lower than the population prevalence rate (1.3% of cancer diagnoses). Relatively few studies focused exclusively on how patients with PBT experience PTG (k = 5), and those that did only included low-grade glioma. The experience of PTG in those with high-grade glioma remains unknown. Patients with PBT are scarcely included in research on PTG interventions. Few studies examined the relationship between PTG and medical, cognitive, or psychological characteristics. Our understanding of the PTG experience in neuro-oncology remains extremely limited.

4.
Mult Scler Relat Disord ; 81: 105365, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38101225

ABSTRACT

BACKGROUND: Comorbidities are common in multiple sclerosis (MS); little is known in neuromyelitis optica spectrum disorders (NMOSD) or outside high-income regions. OBJECTIVE: Compare comorbidities in MS/NMOSD patients, Zambia. METHODS: Comorbidities were compared for MS/NMOSD patients from Zambia's University Teaching Hospital using logistic regression. RESULTS: Thirty-three were included (MS/NMOSD:17/16); 22 (67 %) females, mean age=35.6-years. Fifteen (46 %) had any comorbidity [MS/NMOSD:11/4], 14 physical (MS/NMOSD:10/4) and 6 psychiatric comorbidity (MS/NMOSD:5/1). Odds of any/any physical comorbidity was higher in MS versus NMOSD (age-adjusted odds ratio[aOR]=6.9;95 %CI:1.4-34.7,p=0.020/aOR=5.6;95 %:1.1-28.0,p=0.037). CONCLUSIONS: Physical comorbidity affected >2-in-5 MS/NMOSD patients and psychiatric disorders ∼1-in-5. Odds of any/any physical comorbidity were >five-fold higher in MS versus NMOSD.


Subject(s)
Multiple Sclerosis , Neuromyelitis Optica , Female , Humans , Adult , Male , Multiple Sclerosis/epidemiology , Neuromyelitis Optica/epidemiology , Zambia/epidemiology , Developing Countries , Comorbidity
6.
Appl Neuropsychol Adult ; 30(5): 483-491, 2023.
Article in English | MEDLINE | ID: mdl-34428386

ABSTRACT

OBJECTIVE: The present study investigated demographic differences in performance validity test (PVT) failure in a Veteran sample. METHOD: Data were extracted from clinical neuropsychological evaluations. Only veterans who identified as men, as either European American/White (EA) or African American/Black (AA) were included (n = 1261). We investigated whether performance on two frequently used PVTs, the Test of Memory Malingering (TOMM), and the Medical Symptom Validity Test (MSVT), differed by age, education, and race using separate logistic regressions. RESULTS: Veterans with younger age, less education, and Veterans Affairs (VA) service-connected disability were significantly more likely to fail both PVTs. Race was not a significant predictor of MSVT failure, but AA patients were significantly more likely than EA patients to fail the TOMM. For all significant demographic predictors in the models, effects were small. In a subsample of patients who were given both PVTs (n = 461), the effects of race on performance remained. CONCLUSIONS: Performance on the TOMM and MSVT differed by age and level of education. Performance on the TOMM differed between EA and AA patients, whereas performance on the MSVT did not. These results suggest that demographic factors may play a small but measurable role in performance on specific PVTs.


Subject(s)
Malingering , Memory and Learning Tests , Male , Humans , Neuropsychological Tests , Malingering/diagnosis , Malingering/psychology , Educational Status , Demography , Reproducibility of Results
7.
Complement Ther Clin Pract ; 50: 101689, 2023 Feb.
Article in English | MEDLINE | ID: mdl-36375326

ABSTRACT

BACKGROUND AND PURPOSE: To better understand the effects of an intervention, Mindfulness for Healthcare Professional (MIHP), and how it may improve healthcare professional student (HCP) functioning, a constructivist grounded theory exploration was conducted. MATERIALS AND METHODS: Ten participants with the lowest or highest changes on quantitative measures of burnout and perceived stress at the end of MIHP were interviewed at a long-term follow-up. A theoretical framework was developed from the resultant themes to describe the mechanisms by which MIHP had effects on work-relevant functioning. RESULTS: Three overarching themes emerged as mechanisms of change both from their presence in those participants reporting an improvement in stress and their missingness from those participants who reported no change: developing a mindfulness practice, integrating practice into daily life, and enhanced awareness. These mechanisms led to optimized work-relevant functioning: 1) emotional competencies, including nonjudgement, emotion regulation, and burnout prevention; and 2) patient-centered care, including improved listening, patience, and efficiency at work. CONCLUSION: The resultant framework is discussed in the context of previous literature on MIHP and mindfulness theory more broadly. Implications for future disseminations of MIHP encourage the use of group interventions with emphasis on developing at-home practice and informal mindfulness integrated into daily work.


Subject(s)
Burnout, Professional , Mindfulness , Humans , Grounded Theory , Students , Emotions , Burnout, Professional/prevention & control , Delivery of Health Care
8.
Palliat Support Care ; 21(5): 812-819, 2023 Oct.
Article in English | MEDLINE | ID: mdl-35975283

ABSTRACT

OBJECTIVE: Caregivers of patients with primary brain tumor (PBT) describe feeling preoccupied with the inevitability of their loved one's death. However, there are currently no validated instruments to assess death anxiety in caregivers. This study sought to examine (1) the psychometric properties of the Death and Dying Distress Scale (DADDS), adapted for caregivers (DADDS-CG), and (2) the prevalence and correlates of death anxiety in caregivers of patients with PBT. METHODS: Caregivers (N = 67) of patients with PBT completed the DADDS-CG, Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder (GAD-7), Fear of Cancer Recurrence (FCR-7), and God Locus of Health Control (GLHC). Caregivers' sociodemographic information and patients' medical characteristics were also collected. Preliminary examination of the psychometric properties of the DADDS-CG was conducted using exploratory factor analysis, Cronbach's alpha, and correlations. The prevalence and risk factors of death anxiety were assessed using frequencies, pair-wise comparisons, and correlations. RESULTS: Factor analysis of the DADDS-CG revealed a two-factor structure consistent with the original DADDS. The DADDS-CG demonstrated excellent internal consistency, convergent validity with the PHQ-9, GAD-7, and FCR-7, and discriminant validity with the GLHC. Over two-thirds of caregivers reported moderate-to-severe symptoms of death anxiety. Death anxiety was highest in women and caregivers of patients with high-grade PBT. SIGNIFICANCE OF RESULTS: The DADDS-CG demonstrates sound psychometric properties in caregivers of patients with PBT, who report high levels of death anxiety. Further research is needed to support the measure's value in clinical care and research - both in this population and other caregivers - in order to address this unmet, psychosocial need.


Subject(s)
Brain Neoplasms , Caregivers , Humans , Female , Acedapsone , Anxiety Disorders/diagnosis , Psychometrics , Anxiety/etiology , Anxiety/diagnosis , Brain Neoplasms/complications , Reproducibility of Results , Surveys and Questionnaires
9.
Neurooncol Pract ; 9(6): 509-519, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36388416

ABSTRACT

Background: Fear of cancer recurrence (FCR) is a psychological consequence of cancer diagnosis that impacts quality of life in neuro-oncology. However, the instruments used to assess FCR have not been tested for validity in patients with brain tumors. The present study explored the psychometric properties of a brief FCR scale in patients with primary brain tumor (PBT) and their caregivers. Methods: Adult patients with PBT (n = 165) and their caregivers (n = 117) completed the FCR-7-item scale (FCR7) and measures of psychological functioning. Exploratory factor analyses (EFA) were conducted for both patient and caregiver FCR7. Convergent validity, prevalence, the difference between FCR in patients and caregivers, and relationships with relevant medical and demographic variables were explored. Results: EFAs revealed a single factor with one item demonstrating poor loading for both patients and caregivers. Removal of the item measuring hypervigilance symptoms (checking for physical signs of tumor) greatly improved the single factor metrics. The amended scale (FCR6-Brain) demonstrated good convergent validity. Caregiver FCR was significantly higher than patient. Clinical guidance to identify clinically significant FCR was introduced. Age, gender, and time since diagnosis were related to FCR, with higher FCR in younger women more recently diagnosed. Conclusions: The FCR6-Brain is the first validated instrument to assess FCR in this population and should be used to identify individuals at risk for FCR and guide development of future psychotherapeutic interventions. This study highlights the distinct characteristics of FCR in neuro-oncology. Symptoms of hypervigilance in PBT patients need further investigation.

10.
Integr Med Rep ; 1(1): 177-185, 2022 Sep 01.
Article in English | MEDLINE | ID: mdl-36212225

ABSTRACT

Objectives: To evaluate long-term outcomes after an 8-week mindfulness intervention, Mindfulness for Interdisciplinary Health Care Professionals (MIHP), and investigate relationships between outcomes overtime. Design/Methods: In this single-arm study, 35 participants received MIHP and completed measures of burnout, perceived stress, activity impairment, and dispositional mindfulness at baseline, post-MIHP, and a 3-month follow-up. Changes over time were evaluated using repeated-measures analysis of variance (ANOVA) and reliable change indices (RCIs). Then, correlations between dispositional mindfulness and distress/impairment outcomes were evaluated. Results: At follow-up, aspects of burnout and several mindfulness skills demonstrated maintained improvements. RCIs showed that a higher percentage of participants improved on all outcomes at each time period than declined-all outcomes showed little to no deterioration. However, most participants did not reliably change, and this was more pronounced at the follow-up. Changes in two mindfulness skills (acting with awareness and nonjudging of inner experience) were consistently negatively correlated with distress and impairment outcomes. Conclusions: Acquired mindfulness skills during MIHP were maintained at the follow-up. RCI analyses demonstrated that MIHP may protect against worsening stress and burnout during training. Two mindfulness skills, acting with awareness and nonjudging of inner experience, showed potential mechanistic effects on work-relevant outcomes. Booster sessions to encourage maintained mindfulness practices and skills should be investigated in future trials. This study was registered on clinicaltrials.gov (#NCT03403335) on January 11, 2018.

11.
Support Care Cancer ; 30(10): 8041-8049, 2022 Oct.
Article in English | MEDLINE | ID: mdl-35771290

ABSTRACT

BACKGROUND: The Mini-Mental Status Examination (MMSE) is routinely used in neuro-oncology clinics to rule out cognitive impairment. However, the MMSE is known to have poor sensitivity to mild cognitive impairment, raising concern regarding its continued use. More comprehensive cognitive screeners are available, such as the Repeatable Battery for the Assessment of Neuropsychological Status (RBANS), and may be better able to assess for cognitive dysfunction. METHODS: This retrospective cross-sectional study compared the relative rates of impairment using the MMSE-2 and RBANS in a sample of neuro-oncology patients (N = 81). A preliminary analysis of the sensitivity and specificity of the MMSE-2 to the level of cognitive impairment identified on the RBANS was conducted; in addition, we examined whether an adjustment of the MMSE-2 cut-off score improved consensus with a positive screening on the RBANS. RESULTS: The MMSE-2 failed to identify over half of the patients with cognitive dysfunction that were identified on the RBANS. Further analysis showed limited sensitivity of the MMSE-2 to the level of impairment detected on the RBANS, and an adjustment of the cut-off score did not improve the sensitivity or specificity of the MMSE-2. CONCLUSIONS: These results provide caution for neuro-oncology clinics using the MMSE. If providers continue to rely on the MMSE to screen for cognitive impairment alone, they may fail to identify individuals with mild cognitive impairments.


Subject(s)
Cognitive Dysfunction , Cognitive Dysfunction/diagnosis , Cognitive Dysfunction/etiology , Cognitive Dysfunction/psychology , Cross-Sectional Studies , Humans , Neuropsychological Tests , Retrospective Studies , Sensitivity and Specificity
12.
Eur J Pain ; 26(8): 1746-1758, 2022 09.
Article in English | MEDLINE | ID: mdl-35762280

ABSTRACT

BACKGROUND: For paediatric chronic pain patients, intensive interdisciplinary pain treatment (IIPT) is a well-established treatment. The treatment's short-term effectiveness can be improved by an additive psychosocial aftercare (PAC). However, neither the program's long-term effectiveness nor the patients in particular need have been investigated yet. METHODS: This study aimed at determining the long-term effects of PAC and detecting predictors of treatment outcome within a multicentre randomized controlled trial measured at five time points up to 12 months after discharge. At inpatient admission to IIPT, patients (N = 419, 14.3 years of age, 72.3% female) were randomly assigned to intervention or control group. After IIPT discharge, the intervention group received PAC, whereas the control group received treatment as usual (TAU). Patient-reported outcomes included pain and emotional characteristics. Clinicians assessed potential psychosocial risk factors and their prognosis of treatment outcome. Statistical analyses included mixed-models and univariable logistic regressions. RESULTS: Data at the 12-month follow-up (n = 288) showed a significant benefit of PAC compared with TAU; the majority (59.0%) of patients in the PAC-group reported no chronic pain compared to 29.2% of TAU-patients (p < 0.001). Patients with a single parent specifically benefited from PAC compared to TAU. Clinicians were able to make a reliable prognosis of treatment outcome, but did not successfully predict which patients would benefit the most from PAC. CONCLUSIONS: Study results suggest that PAC is highly effective irrespective of patient characteristics, but particularly for patients with single parents. Its broad implementation could help to improve the long-term outcomes of youth with severely disabling chronic pain. SIGNIFICANCE: A psychosocial aftercare following paediatric IIPT leads to significantly better pain and emotional outcomes compared to treatment as usual up to 12 months after discharge, especially for patients with single parents.


Subject(s)
Aftercare , Chronic Pain , Adolescent , Aged , Child , Chronic Pain/therapy , Emotions , Female , Humans , Male , Patient Reported Outcome Measures , Treatment Outcome
13.
J Neurooncol ; 157(3): 447-456, 2022 May.
Article in English | MEDLINE | ID: mdl-35437687

ABSTRACT

BACKGROUND: Managing Cancer and Living Meaningfully (CALM) is an evidence-based, brief, semi-structured psychotherapy designed to help patients with advanced cancer cope with the practical and profound challenges of their illness. However, no study to date has investigated its feasibility, acceptability, and preliminary effectiveness in adults with malignant glioma, despite the well-documented incidence of psychological distress in this vulnerable and underserved population. METHODS: Fourteen patients with glioma and elevated symptoms of depression and/or death anxiety enrolled in the trial: 83% glioblastoma, 75% female, Mage = 56 years (SD = 15.1; range = 27-81). Feasibility was assessed based on established metrics. Acceptability was measured by post-session surveys and post-intervention interviews. Preliminary intervention effects were explored using paired t-tests, comparing psychological distress at baseline and post-intervention. RESULTS: Of the 14 enrolled patients, 12 were evaluable. Nine completed the study (75% retention rate). Three patients withdrew due to substantial disease progression which affected their ability to participate. Participants reported high perceived benefit, and all recommended the program to others. Baseline to post-intervention assessments indicated reductions in death anxiety, generalized anxiety, and depression, and increases in spirituality. Quality of life and fear of cancer recurrence remained stable throughout the study period. CONCLUSIONS: CALM appears feasible for use with adults with malignant glioma. Enrollment and retention rates were high and comparable to psychotherapy trials for patients with advanced cancer. High perceived benefit and reductions in symptoms of death anxiety, generalized anxiety, and depression were reported by participants. These findings are extremely encouraging and support further study of CALM in neuro-oncology. TRIAL REGISTRATION NUMBER: NCT04646213 registered on 11/27/2020.


Subject(s)
Glioma , Psychotherapy, Brief , Adult , Anxiety/etiology , Anxiety/therapy , Depression/etiology , Depression/therapy , Feasibility Studies , Female , Glioma/therapy , Humans , Male , Middle Aged , Neoplasm Recurrence, Local , Quality of Life
14.
Children (Basel) ; 9(3)2022 Mar 13.
Article in English | MEDLINE | ID: mdl-35327779

ABSTRACT

A newly developed specialized psychosocial aftercare program (PAC) for pediatric patients with chronic pain following an intensive interdisciplinary pain treatment (IIPT) was found to be significantly more effective than IIPT alone. This qualitative study aimed to gain further insight into the mechanisms and prerequisites for the effectiveness of this specialized aftercare program. We conducted structured telephone interviews with patients, parents, and health care professionals conducting PAC. A total of 16 interviews were conducted-seven interviews with parents, six interviews with patients, and three interviews with health care professionals-and transcribed verbatim. Data were analyzed using reflexive thematic analysis. Four major themes consisting of 20 subcategories were identified, namely (1) frame conditions, (2) person factors, (3) stabilization and (4) catalyst. The foundations of treatment success are frame conditions, such as flexibility or constancy, and person factors, such as respect or expertise. Based on these foundations, stabilization is achieved through security, mediation, orientation and support. Altogether, these components of PAC reveal their potential as catalysts for further improvement even after discharge from IIPT. Overall, patients and their families emphasized widespread personal relevance and acceptance of the PAC program. The findings of this study may be employed in the development of other aftercare programs or interventions involving families in the context of psychotherapeutic and psychosocial health care.

15.
Brain Inj ; 35(14): 1665-1673, 2021 12 06.
Article in English | MEDLINE | ID: mdl-34874214

ABSTRACT

OBJECTIVE: We assessed agreement between patient- and informant-report on the Behavior Rating Inventory of Executive Function - Adult (BRIEF-A) in patients with primary brain tumors (PBT) and differences on BRIEF-A in neurocognitive (intact v. impaired), psychological (asymptomatic v. distressed), and functional (independent v. dependent) categories using both patient- and informant-report. METHOD: PBT patients (n = 102) completed neuropsychological evaluations including the BRIEF-A, clinical interview, neurocognitive tests, and mood questionnaires. Correlations between the BRIEF-A and Informant (n = 39) were conducted. Differences in patient and informant BRIEF-A indices were investigated across five classifications: neurocognitive functioning, psychological functioning, medication management, appointment management, and finance management. RESULTS: Patient and informant BRIEF were correlated. There was no difference on BRIEF-A or Informant indices for intact v. impaired neurocognitive status. Higher BRIEF-A and Informant indices were observed among psychologically distressed v. asymptomatic patients. Results showed higher BRIEF indices among those requiring assistance with medication, appointments, and finances. CONCLUSIONS: Patients and informants agreed in their reports of executive function (EF). These reports, while not different in neurocognitive classification, were different in psychological functioning and in those needing assistance with instrumental activities of daily living (IADL). Patient- and informant-reported EF may provide important data regarding psychological and IADL functioning in this population.


Subject(s)
Brain Neoplasms , Cognitive Dysfunction , Activities of Daily Living/psychology , Adult , Brain Neoplasms/complications , Executive Function , Humans , Neuropsychological Tests
16.
J Clin Exp Neuropsychol ; 43(7): 753-765, 2021 09.
Article in English | MEDLINE | ID: mdl-34962226

ABSTRACT

INTRODUCTION: Evidence-based practice in neuropsychology involves the use of validated tests, cutoff scores, and interpretive algorithms to identify clinically significant cognitive deficits. Recently, actuarial neuropsychological criteria (ANP) for identifying mild cognitive impairment were developed, demonstrating improved criterion validity and temporal stability compared to conventional criteria (CNP). However, benefits of the ANP criteria have not been investigated in non-research, clinical settings with varied etiologies, severities, and comorbidities. This study compared the utility of CNP and ANP criteria using data from a memory disorders clinic. METHOD: Data from 500 non-demented older adults evaluated in a Veterans Affairs Medical Center memory disorders clinic were retrospectively analyzed. We applied CNP and ANP criteria to the Repeatable Battery for the Assessment of Neuropsychological Status, compared outcomes to consensus clinical diagnoses, and conducted cluster analyses of scores from each group. RESULTS: The majority (72%) of patients met both the CNP and ANP criteria and both approaches were susceptible to confounding factors such as invalid test data and mood disturbance. However, the CNP approach mislabeled impairment in more patients with non-cognitive disorders and intact cognition. Comparatively, the ANP approach misdiagnosed patients with depression at a third of the rate and those with no diagnosis at nearly half the rate of CNP. Cluster analyses revealed groups with: 1) minimal impairment, 2) amnestic impairment, and 3) multi-domain impairment. The ANP approach yielded subgroups with more distinct neuropsychological profiles. CONCLUSIONS: We replicated previous findings that the CNP approach is over-inclusive, particularly for those determined to have no cognitive disorder by a consensus team. The ANP approach yielded fewer false positives and better diagnostic specificity than the CNP. Despite clear benefits of the ANP vs. CNP, there was substantial overlap in their performance in this heterogeneous sample. These findings highlight the critical role of clinical interpretation when wielding these empirically-derived tools.


Subject(s)
Cognition Disorders , Cognitive Dysfunction , Aged , Cognition , Cognition Disorders/diagnosis , Cognition Disorders/etiology , Cognitive Dysfunction/diagnosis , Humans , Neuropsychological Tests , Retrospective Studies
17.
JAMA Netw Open ; 4(9): e2127024, 2021 09 01.
Article in English | MEDLINE | ID: mdl-34570203

ABSTRACT

Importance: Severe chronic pediatric pain causes individual suffering and significantly affects social functioning and psychological well-being. For children with high pain severity, intensive interdisciplinary pain treatment (IIPT) is a well-established treatment. However, across specialized centers, it is not sufficient for all patients. Objective: To evaluate the effectiveness of a psychosocial aftercare (PAC) program for pediatric patients with severe chronic pain followed up for 6 months after discharge from IIPT. Design, Setting, and Participants: This multicenter randomized clinical trial with 4 assessment points (pre-IIPT, immediately post-IIPT, 3 months, and 6 months) was conducted at 3 pediatric specialized tertiary care pain centers in Germany between September 11, 2018, and March 31, 2020. Included patients were aged 8 to 17 with a severe chronic pain condition who had been admitted for IIPT. Data were analyzed from June 8 to September 4, 2020. Interventions: Patients and their families were randomly assigned to 1 of 2 study groups at inpatient IIPT admission. Both groups received standardized 3- to 4-week IIPT. After IIPT discharge, the intervention group received PAC and the control group received usual care. PAC involved ongoing contact with a social worker for as long as the family requested the support, up to a maximum of 6 months. Main Outcomes and Measures: The primary outcome measure was pain at 6 months, measured using the Chronic Pain Grading (CPG), an instrument based on an algorithm indicating severity of the chronic pain disorder. Secondary outcomes included other pain-related and emotional parameters. Results: A total of 419 patients were randomized (mean [SD] age, 14.3 [2.1] years; 303 [72.3%] girls; 116 [27.7%] boys), with 218 assigned to usual care and 201 assigned to PAC. At baseline in both groups, the median (IQR) CPG was 3 (2-4). Superiority of PAC compared with usual care was demonstrated at 6 months (median [IQR] CPG: usual care, 2 [2-3]; PAC, 1 [1-2]; r = 0.30; 95% CI, 0.17-0.41). Additionally, PAC significantly improved emotional parameters (eg, significant time × group interaction: b = -8.84; P < .001). Conclusions and relevance: This randomized clinical trial found that PAC improved pain-related and emotional parameters during the intervention 6 months after discharge from IIPT. Future research is needed to investigate the intervention's long-term effects. Trial Registration: German Clinical Trials Register ID: DRKS00015230.


Subject(s)
Aftercare/methods , Aftercare/statistics & numerical data , Chronic Pain/psychology , Chronic Pain/therapy , Adolescent , Anxiety/psychology , Child , Depression/psychology , Female , Germany , Humans , Male , Pain Measurement , Patient Satisfaction/statistics & numerical data , Treatment Outcome
18.
Biomedicines ; 9(9)2021 Sep 21.
Article in English | MEDLINE | ID: mdl-34572460

ABSTRACT

Autoimmune polyendocrine syndrome type 1 (APS-1) is a rare but severe monogenetic autoimmune endocrine disease caused by failure of the Autoimmune Regulator (AIRE). AIRE regulates the negative selection of T cells in the thymus, and the main pathogenic mechanisms are believed to be T cell-mediated, but little is known about the role of B cells. Here, we give an overview of the role of B cells in thymic and peripheral tolerance in APS-1 patients and different AIRE-deficient mouse models. We also look closely into which autoantibodies have been described for this disorder, and their implications. Based on what is known about B cell therapy in other autoimmune disorders, we outline the potential of B cell therapies in APS-1 and highlight the unresolved research questions to be answered.

19.
J Neurooncol ; 155(1): 25-34, 2021 Oct.
Article in English | MEDLINE | ID: mdl-34491526

ABSTRACT

BACKGROUND: CogMed Working Memory Training (CWMT) is a computer-based program shown to improve working memory (WM) among those with cognitive impairments. No study to date has investigated its feasibility, acceptability, and satisfaction in adult patients with glioma, despite the well-documented incidence of WM impairment in this population. METHODS: Twenty patients with glioma and objective and/or perceived WM deficits enrolled in the study: 52% high-grade, 60% female, Mage = 47 (range = 21-72 years). Adverse events were monitored to determine safety. Feasibility and acceptability were assessed based on established metrics. Satisfaction was explored by exit-interviews. Neurocognitive tests and psychological symptoms were analyzed at baseline and post-CWMT to estimate effect sizes. RESULTS: Of 20 enrolled patients, 16 completed the intervention (80% retention rate). Reasons for withdrawal included time burden (n = 2); tumor-related fatigue (n = 1) or loss to follow-up (n = 1). No adverse events were determined to be study-related. Adherence was 69% with reasons for nonadherence similar to those for study withdrawal. The perceived degree of benefit was only moderate. Baseline to post-CWMT assessments showed medium to large effects on neurocognitive tasks. Psychological symptoms remained stable throughout the study period. CONCLUSIONS: CWMT was found to be safe and acceptable in adult patients with glioma. Enrollment, retention rates, and treatment adherence were all adequate and comparable to studies recruiting similar populations. Only moderate perceived benefit was reported despite demonstrated improvements in objectively-assessed WM. This may indicate that the time commitment and intervention intensity (5 weeks of 50-min training sessions on 5 days/week) outweighed the perceived benefits of the program. (Trial Registration Number: NCT03323450 registered on 10/27/2017).


Subject(s)
Cognitive Dysfunction , Glioma , Adult , Aged , Female , Glioma/complications , Glioma/therapy , Humans , Learning , Male , Memory Disorders/etiology , Memory, Short-Term , Middle Aged , Young Adult
20.
Neurooncol Pract ; 8(4): 485-496, 2021 Aug.
Article in English | MEDLINE | ID: mdl-34267923

ABSTRACT

BACKGROUND: The COVID-19 pandemic induced rapid adoption of telemedicine services for neuro-oncology patients at an increased risk of infection. Neuropsychological assessment is important to neuro-oncology care yet challenging to complete outside of a structured testing environment. Teleneuropsychology (TNP) has been explored in limited populations and proven feasible and reliable. Conducting TNP visits directly to patients' home (DTH) had minimal prior study. METHODS: We used two voluntary surveys to examine acceptance (patients) and feasibility (providers) of DTH-TNP at two regionally diverse medical institutions providing neuropsychological services to neuro-oncology patients from April to September 2020. RESULTS: A total of 119 patients were scheduled during the study period, 79 of whom completed neuropsychological testing via DTH-TNP. Neuropsychology providers completed surveys on 68 of these encounters (86%). In 98% of cases, neuropsychologists were able to achieve or partially achieve the individually defined goals of their assessment. Common problems reported included patient dysregulation (16%) and slow/unreliable internet (15%). Of the 52 patients who responded, 98% were satisfied with the DTH-TNP experience, and 92% would recommend the virtual visit to others. All respondents felt understood by the examiner (100%) and the majority denied technical difficulties (90%), communication challenges (94%), or privacy concerns (98%). Patients reported reduced risk of infection and saved travel time as favorable aspects of DTH-TNP. CONCLUSIONS: These preliminary results suggest neuro-oncology patients find DTH-TNP acceptable and neuropsychologists find it a feasible practice, while also recognizing its limitations. Results suggest that further study of DTH-TNP (eg, reliability, validity) for neuro-oncology patients is warranted.

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