Psychometric Properties of the Spinal Cord Injury-Quality of Life (SCI-QOL) Resilience Short Form in a Sample With Spinal Cord Injury.

OBJECTIVE: To explore the psychometric properties (eg, data distribution characteristics, convergent or discriminant validity, internal consistency reliability) of the Spinal Cord Injury-Quality of Life measurement system (SCI-QOL) Resilience 8-item short form (SF) in comparison to the criterion standard resilience measure, Connor Davidson Resilience Scale (CD-RISC) in a sample of individuals with spinal cord injury (SCI). DESIGN: Descriptive statistics were calculated to examine variable data distribution characteristics. Correlation analyses were conducted for convergent and discriminant validity. Reliability statistics were calculated for resilience and other validity measures. SETTING: General community. PARTICIPANTS: Individuals with SCI (N=202; 51.5% male, 48% female). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Patient-Reported Outcomes Measurement Information System measures (depression, anxiety, ability to participate in social roles and activities, pain intensity, fatigue, sleep disturbance), SCI-QOL short forms (SF) (resilience, positive affect and well-being, mobility), CD-RISC, National Institutes of Health Toolbox for Assessment of Neurological and Behavioral Function - perceived stress (NIH Toolbox-perceived stress), and the Satisfaction with Life Scale were administered. RESULTS: The mean and SD for the SCI-QOL Resilience SF (mean=48.60; SD=8.20) approximated the normative mean (mean=50, SD=10). The SCI-QOL Resilience SF scores were essentially normally distributed though somewhat kurtotic, with skew=-0.17 and excess kurtosis=1.4; internal consistency reliability was good (Cronbach's alpha=0.89). Convergent validity was supported by significant moderate correlations in expected directions between the SCI-QOL Resilience SF and measures of CD-RISC resilience, depressive symptoms, anxiety, social participation, positive affect and well-being, stress, and satisfaction with life. Discriminant validity was supported by small non-significant correlations between the SCI-QOL Resilience SF and age, sex, injury level, time since injury, pain intensity, mobility, sleep disturbance, and fatigue. CONCLUSION: The SCI-QOL Resilience SF demonstrated good convergent and discriminant validity. Our study showed that the SCI-QOL Resilience SF is a psychometrically valid tool that can reliably estimate levels of resilience in the SCI population.

Examination of Risk Factors Associated With Falls and Injurious Falls in People With Multiple Sclerosis: An Updated Nationwide Study.

OBJECTIVE: To provide an update on risk factors associated with falls and injurious falls among people with multiple sclerosis (PwMS) in the United States. DESIGN: Nationwide cross-sectional web-based survey. SETTING: Community setting. PARTICIPANTS: Adult PwMS (n=965). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participants completed self-report surveys of demographics, clinical data, concerns about falling, occurrence of falls, factors associated with falls, and injurious falls in the past 6 months. Participants also completed Patient-Reported Outcomes Measurement Information System (PROMIS) measures of depression, pain interference, and physical function, and the Fatigue Severity Scale. RESULTS: The most common self-reported factors associated with falls included personal factors such as poor balance (75%), muscle weakness (54%), and/or fatigue (35%), environmental factors such as general surface conditions (37%) and/or distraction (15%), and activities-related factors such as urgency to complete a task (35%) and/or multitasking (27%). Logistic regression analyses indicated that higher fatigue severity (OR=1.19, P<.01) and higher pain interference (OR=1.02, P<.01) were associated with higher odds of experiencing at least 1 fall. Any level of concern, even minimal concern about falling was also significantly associated with a higher odd of experiencing at least 1 fall (ORs range 2.78 - 3.95, all P<.01). Fair to very high concerns about falling compared with no concern about falling (ORs range=5.17 - 10.26, all P<.05) was significantly associated with higher odds of sustaining an injurious fall. CONCLUSIONS: Findings suggest falls prevention approaches in PwMS should be multifactorial and include personal, environmental, and activities-related factors. Particular attention on fatigue, pain, and concern about falling may be needed to reduce incidence of falls and injurious falls in this population.

Sleep-disordered breathing and neurocognitive function in multiple sclerosis: Differential associations across cognitive domains.

BACKGROUND: Sleep disorders are common in people with multiple sclerosis (PwMS) and could contribute to cognitive dysfunction. However, effects of pathological sleep on cognitive domains are insufficiently characterized. OBJECTIVE: To evaluate associations between cognitive performance and polysomnographic (PSG)-based sleep disturbances in PwMS. METHODS: PwMS with known/suspected untreated obstructive sleep apnea (OSA, N = 131) underwent PSG and cognitive tests: Symbol Digit Modalities Test (SDMT), Paced Auditory Serial Addition Test (PASAT), California Verbal Learning Test-II (CVLT-II), Brief Visuospatial Memory Test-Revised (BVMT-R Total and Delayed), Judgment of Line Orientation (JLO), Controlled Oral Word Association Test (COWAT), Trail Making Test, Go/No-Go, and Nine-Hole Peg Test (NHPT). RESULTS: Apnea severity measures were associated with worse processing speed, attention, and working memory (SDMT); immediate and delayed visual memory (BVMT-R Total and Delayed); attention, psychomotor speed, and cognitive flexibility (Trails); and manual dexterity and visuomotor coordination (NHPT) (ps ⩽ 0.011). Sleep macrostructure measures showed stronger associations with verbal memory and response inhibition (CVLT-II Total Recognition Discriminability Index), and immediate visual memory (BVMT-R Total) (ps ⩽ 0.011). CONCLUSIONS: Pathological sleep, including hypoxia, sleep fragmentation, and disturbances in sleep/wake states, are differentially associated with worse cognitive performance in PwMS. These findings could inform future personalized approaches to cognitive impairment in PwMS with sleep disorders. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT02544373 (https://clinicaltrials.gov/ct2/show/NCT02544373).

Coping as a Moderator of Associations Between Symptoms and Functional and Affective Outcomes in the Daily Lives of Individuals With Multiple Sclerosis.

BACKGROUND: Pain and fatigue are highly prevalent in multiple sclerosis (MS) and are associated with adverse physical, social, and psychological outcomes. There is a critical need to identify modifiable factors that can reduce the impact of these symptoms on daily life. PURPOSE: This study examined the moderating role of dispositional coping in the relationships between daily fluctuations (i.e., deviations from a person's usual level) in pain and fatigue and same-day functional/affective outcomes. METHODS: Adults with MS (N = 102) completed a self-report measure of dispositional coping (Brief COPE), followed by 7 days of ecological momentary assessment of pain and fatigue and end-of-day diaries assessing same-day pain interference, fatigue impact, social participation, upper extremity and lower extremity functioning, depressive symptoms, and positive affect and well-being (PAWB). Multilevel models tested interactions between daily symptom fluctuations and dispositional coping (avoidant/approach) in predicting same-day outcomes. RESULTS: Higher approach coping mitigated the same-day association between pain and pain interference, whereas higher avoidant coping augmented this association. Daily PAWB benefits were seen for those who reported high approach coping and low avoidant coping; effects were only observed on days of low pain (for approach coping) and low fatigue (for avoidant coping). Avoidant coping was associated with worse fatigue impact, social participation, lower extremity functioning, and depressive symptoms. CONCLUSIONS: When faced with pain and fatigue, avoidant coping is associated with increased, and approach coping with decreased, functional/affective difficulties in the daily lives of individuals with MS. Altering coping strategy use may reduce the impact of pain and fatigue.

People with multiple sclerosis (MS) commonly experience fluctuations in pain and fatigue severity. These fluctuations correspond with changes in physical, social, and psychological functioning. It is thus important to identify ways of reducing the impact of MS symptom exacerbations on daily functioning, such as by modifying individuals' use of coping strategies. We tested whether the relationships between fluctuations in pain/fatigue severity and same-day functioning in MS differ based on coping tendencies. Individuals with MS completed a questionnaire about how they generally cope with stress. They also provided ratings of their pain and fatigue severity 5 times daily for 7 days using a wrist-worn electronic diary, and they completed end-of-day questionnaires about their same-day functioning and emotional health. The results showed that coping tendencies influence the relationships between fluctuations in symptom severity and same-day pain interference and positive emotions/moods and well-being. Specifically, avoidant coping, like disengagement and denial, was related to worse outcomes, whereas approach coping, like problem-solving and seeking social support, was associated with better outcomes. These findings suggest that reducing frequency of avoidant coping and fostering use of approach coping strategies related to pain and fatigue might reduce the impact of these symptoms on functioning and quality of life in MS.

Feasibility, reliability, and validity of ambulatory cognitive tests in fibromyalgia and matched controls.

OBJECTIVE: This observational study examined the feasibility, reliability, and validity of repeated ambulatory cognitive tests in fibromyalgia (FM). METHOD: Adults with FM (n = 50) and matched controls (n = 50) completed lab-based neuropsychological tests (NIH Toolbox) followed by eight days of smartphone-based ambulatory testing of processing speed (symbol search) and working memory (dot memory) five times daily. Feasibility was assessed based on response rates. Reliability was evaluated using overall average between-person reliabilities for the full assessment period and by determining the number of assessment days necessary to attain reliabilities of >.80 and >.90. To assess convergent validity, correlations were calculated between ambulatory test scores and NIH Toolbox scores. Test performance was contrasted between the FM and non-FM groups to examine known-groups validity. RESULTS: Average rates of response to the ambulatory cognitive tests were 89.5% in FM and 90.0% in non-FM. Overall average between-person reliabilities were ≥.96. In FM, between-person reliability exceeded .90 after two days for symbol search and three days for dot memory. Symbol search scores correlated with NIH Toolbox processing speed scores in both groups, though there were no significant group differences in symbol search performance. Dot memory scores correlated with NIH Toolbox working memory scores in both groups. FM participants exhibited worse dot memory performance than did non-FM participants. CONCLUSIONS: Repeated ambulatory tests of processing speed and working memory demonstrate feasibility and reliability in FM, though evidence for construct validity is mixed. The findings demonstrate promise for future research and clinical applications of this approach to assessing cognition in FM.

Temporal associations between use of psychoactive substances and somatic symptoms in the daily lives of people with fibromyalgia.

OBJECTIVE: Consumption of psychoactive substances-alcohol, nicotine, caffeine, opioids, and cannabis-is common among people with fibromyalgia. Associations between the use of substances and somatic symptoms could reflect efforts to cope with symptoms, aggravation or alleviation of symptoms after the use of substances, or a combination of these. To date, no study has provided insight into temporal associations between the consumption of psychoactive substances and fluctuations in somatic symptoms. We explored whether changes in ratings of pain and fatigue (mental and physical) predicted the later use of psychoactive substances or vice versa (substance use predicting later change in symptoms). DESIGN: Micro-longitudinal design. SETTING/SUBJECTS: Fifty adults (88% female, 86% White, mean age of 44.9 years) with fibromyalgia. METHODS: Participants completed ecological momentary assessments of substance use, pain intensity, and physical/mental fatigue 5 times per day for 8 days. RESULTS: Results of multilevel models indicated that momentary increases in fatigue showed a consistent association with greater odds of later use of psychoactive substances, whereas momentary increases in pain were related to lower odds of later cannabis and nicotine use and higher odds of later alcohol use. Only nicotine use predicted later mental fatigue. CONCLUSION: Findings highlight the importance of individualized interventions for symptom management or problems related to the use of psychoactive substances. We observed that although somatic symptoms predicted later use of substances, use of substances did not show appreciable effects with regard to alleviating somatic symptoms in people with fibromyalgia.

An Interventional Response Phenotyping Study in Chronic Low Back Pain: Protocol for a Mechanistic Randomized Controlled Trial.

Evidence-based treatments for chronic low back pain (cLBP) typically work well in only a fraction of patients, and at present there is little guidance regarding what treatment should be used in which patients. Our central hypothesis is that an interventional response phenotyping study can identify individuals with different underlying mechanisms for their pain who thus respond differentially to evidence-based treatments for cLBP. Thus, we will conduct a randomized controlled Sequential, Multiple Assessment, Randomized Trial (SMART) design study in cLBP with the following three aims. Aim 1: Perform an interventional response phenotyping study in a cohort of cLBP patients (n = 400), who will receive a sequence of interventions known to be effective in cLBP. For 4 weeks, all cLBP participants will receive a web-based pain self-management program as part of a run-in period, then individuals who report no or minimal improvement will be randomized to: a) mindfulness-based stress reduction, b) physical therapy and exercise, c) acupressure self-management, and d) duloxetine. After 8 weeks, individuals who remain symptomatic will be re-randomized to a different treatment for an additional 8 weeks. Using those data, we will identify the subsets of participants that respond to each treatment. In Aim 2, we will show that currently available, clinically derived measures, can predict differential responsiveness to the treatments. In Aim 3, a subset of participants will receive deeper phenotyping (n = 160), to identify new experimental measures that predict differential responsiveness to the treatments, as well as to infer mechanisms of action. Deep phenotyping will include functional neuroimaging, quantitative sensory testing, measures of inflammation, and measures of autonomic tone.

Prevalence, co-occurrence, and trajectories of pain, fatigue, depression, and anxiety in the year following multiple sclerosis diagnosis.

BACKGROUND: Pain, fatigue, depression, and anxiety are common in multiple sclerosis, but little is known about the presence, co-occurrence, and trajectories of these symptoms in the year after multiple sclerosis (MS) diagnosis. OBJECTIVES: To determine, during the postdiagnosis year: (1) rates of pain, fatigue, depression, and anxiety; (2) rates of symptom co-occurrence; and (3) stability/change in symptom severity. METHODS: Newly diagnosed adults with MS/clinically isolated syndrome (N = 230) completed self-report measures of pain, fatigue, depression, and anxiety at 1, 2, 3, 6, 9, and 12 months after MS diagnosis. Clinical significance was defined based on standardized cutoffs. Descriptive statistics and Sankey diagrams characterized rates and trajectories. RESULTS: Participants endorsed clinically significant symptoms at some point in the postdiagnosis year at rates of 50.9% for pain, 62.6% for fatigue, 47.4% for depression, and 38.7% for anxiety. A majority of patients exhibited co-occurring symptoms-21.3% with two, 19.1% with three, and 17.4% with four. The proportions of patients with clinically significant symptoms were generally stable over time; however, rates of symptom development/recovery revealed fluctuations at the individual level. CONCLUSIONS: Pain, fatigue, depression, and anxiety are prevalent in newly diagnosed MS. Prompt screening and evidence-based interventions are necessary if quality of life is to be optimized.

Implications of median sensory study to the thumb and deltoid/biceps motor unit recruitment on identifying C6 root avulsion in upper neonatal brachial plexus palsy.

INTRODUCTION/AIMS: Anatomic representation suggests that a median sensory nerve conduction study recording the thumb (median D1 NCS) may effectively assess upper neonatal brachial plexus palsy (NBPP). We sought to determine the feasibility of technique, establish reference data, and assess its ability to: (a) identify focal upper plexus lesions; and (b) identify C6 root avulsion. In a secondary analysis, we explored the association between absence/presence of motor unit action potentials (MUAPs) during needle electromyography (EMG) of the deltoid and biceps brachii muscles and C6 avulsion status. METHODS: A retrospective chart review was performed of surgical patients with severe upper NBPP who ultimately underwent surgical reconstruction (between 2017 and 2020). Median D1 sensory nerve action potential (SNAP) amplitude ranges were determined in affected and contralateral limbs and analyzed by C6 root avulsion status. Also, presence/absence of MUAPs during EMG of the deltoid and biceps brachii was compared between C6 avulsion patients and controls. RESULTS: Thirty-eight patients were included in our analysis. A median D1 NCS study was readily performed, showing a contralateral limb mean amplitude of 27.42 µV (range, 3.8-54.7 µV). Most patients had a low ipsilateral median D1 SNAP amplitude, regardless of C6 avulsion status. Detectable MUAPs in either deltoid or biceps brachii on EMG were atypical in C6 root avulsion. DISCUSSION: The median D1 NCS identifies upper NBPP, but does not distinguish C6 avulsions from post-ganglionic lesions, likely due to the frequent co-occurrence of post-ganglionic axonal disruption. The presence of MUAPs on deltoid/biceps brachii EMG suggests C6 avulsion is unlikely.

Psychometric properties of the spinal cord injury-quality of life (SCI-QOL) Resilience item bank in a sample with spinal cord injury and chronic pain.

PURPOSE: To describe the psychometric properties (e.g., data distribution characteristics, convergent/discriminant validity, internal consistency reliability, and test administration characteristics) of the spinal cord injury quality of life measurement system (SCI-QOL) Resilience item bank delivered as a computer adaptive test (CAT) in a sample of individuals with chronic pain and spinal cord injury (SCI). METHODS: Descriptive statistics were calculated to investigate variable data distribution characteristics. Correlation analyses were conducted for convergent and discriminant validity. Item response theory-derived reliability was calculated for the SCI-QOL Resilience CAT. RESULT: One hundred thirty-three adults with SCI (N = 133; 73.5% male, 26.5% female) were enrolled. Sample mean T score on the SCI-QOL Resilience measure was 48.40, SD = 8.60 (min = 29.4; max = 70.0). The CAT administered between 4 (most common, 41.4% of cases) and 12 (9% of cases) items with the Mean#items = 5.73, SD = 2.45. The SCI-QOL Resilience CAT scores were normally distributed, with very low ceiling (0%) and floor (3%) effects. The SCI-QOL Resilience CAT had a reliability of 0.89, and the mean length of time for respondents to complete the SCI-QOL Resilience CAT was 44.34 s. SCI-QOL Resilience CAT validity was supported by significant moderate correlations with pain acceptance, depressive symptoms, pain catastrophizing, positive affect and well-being, and pain interference (convergent validity) and small non-significant correlations with age, sex, injury level, pain intensity, mobility level, and years since injury (discriminant validity). CONCLUSION: The SCI-QOL Resilience CAT demonstrated good convergent and discriminant validity. The CAT administration characteristics were impressive: With few items (low response burden), the scale achieved good reliability.

How Do Fluctuations in Pain, Fatigue, Anxiety, Depressed Mood, and Perceived Cognitive Function Relate to Same-Day Social Participation in Individuals With Spinal Cord Injury?

OBJECTIVE: This study aimed to examine same-day associations of pain, fatigue, depressed mood, anxiety, and perceived cognitive function with social participation in the daily lives of adults with spinal cord injury (SCI). DESIGN: Observational study used a combination of baseline surveys and 7 end-of-day (EOD) diaries. SETTING: General community. PARTICIPANTS: Individuals with SCI (N=168; mean age, 49.8y; 63% male, 37% female). MAIN OUTCOME MEASURES: Patient-Reported Outcomes Measurement Information System short form measures (Ability to Participate in Social Roles and Activities, Pain Intensity, Depression, Anxiety, Cognitive Function Abilities) were adapted for daily administrations as EOD diaries. RESULT: Results of multivariable model showed that daily increases in fatigue (B=-0.10; P=.004) and depressive symptoms (B=-0.25; P=<.001) and decreases in perceived cognitive function (B=0.11; P=<.001) were significantly related to worse same-day social participation. Daily fluctuations in anxiety and pain were unrelated to same-day social participation. CONCLUSIONS: This is the first study that shows within-person associations of common SCI symptoms with social participation in the daily lives of adults with SCI. Results from the current study may help to develop more effective individualized treatments of symptoms and symptom effect aimed at improving social participation.

Daily Variation in Sleep Quality is Associated With Health-Related Quality of Life in People With Spinal Cord Injury.

OBJECTIVE: Although sleep difficulties are common after spinal cord injury (SCI), little is known about how day-to-day fluctuations in sleep quality affects health-related quality of life (HRQOL) among these individuals. We examined the effect of sleep quality on same-day HRQOL using ecological momentary assessment methods over a 7-day period. DESIGN: Repeated-measures study involving 7 days of home monitoring; participants completed HRQOL measures each night and ecological momentary assessment ratings 3 times throughout the day; multilevel models were used to analyze data. SETTING: Two academic medical centers. PARTICIPANTS: A total of 170 individuals with SCI (N=170). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Daily sleep quality was rated on a scale of 0 (worst) to 10 (best) each morning. Participants completed end-of-day diaries each night that included several HRQOL measures (Sleep Disturbance, Sleep-related Impairment, Fatigue, Cognitive Abilities, Pain Intensity, Pain Interference, Ability to Participate in Social Roles and Activities, Depression, Anxiety) and ecological momentary assessment ratings of HRQOL (pain, fatigue, subjective thinking) 3 times throughout each day. RESULTS: Multilevel models indicated that fluctuations in sleep quality (as determined by end-of-day ratings) were significantly related to next-day ratings of HRQOL; sleep quality was related to other reports of sleep (Sleep Disturbance; Sleep-related Impairment; Fatigue) but not to other aspects of HRQOL. For ecological momentary assessment ratings, nights of poor sleep were related to worse pain, fatigue, and thinking. Generally, sleep quality showed consistent associations with fatigue and thinking across the day, but the association between sleep quality and these ecological momentary assessment ratings weakened over the course of the day. CONCLUSIONS: Findings highlight the important association between sleep and HRQOL for people with SCI. Future work targeting sleep quality improvement may have positive downstream effects for improving HRQOL in people with SCI.

Early Treatment Improvements in Depression Are Associated With Overall Improvements in Fatigue Impact and Pain Interference in Adults With Multiple Sclerosis.

BACKGROUND: Depression, fatigue, and pain commonly co-occur in multiple sclerosis (MS) and are positively associated with one another. However, it is unclear whether treatment-related improvement in one of these symptoms is associated with improvements in the other two symptoms. PURPOSE: This study examined whether early improvements in depressive symptoms, fatigue impact, and pain interference during a multisymptom intervention in persons with MS were associated with overall improvements in the other two symptoms. METHODS: Secondary analysis of a randomized controlled trial in which both treatments improved depressive symptoms, fatigue, and pain interference. Adults with MS experiencing chronic pain, chronic fatigue, and/or moderate depressive symptoms (N = 154, 86% women) participated in an 8-week, telephone-delivered intervention: self-management (n = 69) or education (n = 85); intervention groups were combined for the current study. Outcome measures were depressive symptoms (PHQ-9), fatigue impact (Modified Fatigue Impact Scale), and pain interference (Brief Pain Inventory). Path analysis examined associations between pre-to-mid intervention improvement in one symptom (i.e., depression, fatigue, pain interference) and pre-to-post (overall) improvement in the other two symptoms. RESULTS: Early reduction in depressive symptoms was associated with an overall reduction in pain interference and fatigue impact (p's < .01). Early reduction in fatigue impact was associated with an overall reduction in depressive symptom severity (p = .04) but not pain interference. Early reduction in pain interference was not associated with reductions in fatigue impact or depressive symptoms. CONCLUSIONS: These findings suggest the potential importance of reducing depressive symptoms to overall improvement in fatigue and pain interference in persons with MS. CLINICAL TRIAL REGISTRATIONS: NCT00944190.

Calling Out MS Fatigue: Feasibility and Preliminary Effects of a Pilot Randomized Telephone-Delivered Exercise Intervention for Multiple Sclerosis Fatigue.

BACKGROUND AND PURPOSE: Fatigue is a common and debilitating symptom of multiple sclerosis (MS). Exercise therapy is effective in reducing MS-related fatigue; however, its feasibility, acceptability, and effectiveness when delivered over the telephone remain unknown. This randomized study aimed to determine the feasibility and acceptability of a telephone-delivered exercise intervention for MS-related fatigue. In addition, pre-/postchange in fatigue and secondary outcomes were compared with an otherwise identical in-person delivered exercise intervention. METHODS: Twenty participants with MS and clinically significant fatigue were randomized to 8 sessions of either telephone (n = 10) or in-person (n = 10) delivered exercise therapy. Primary outcome measures concerned feasibility (number of sessions attended), acceptability (Client Satisfaction Questionnaire), and fatigue (Fatigue Severity Scale and two 11-point numeric rating scales: fatigue intensity and interference). Data on a range of secondary outcome measures were also collected. RESULTS: There was no difference in average session attendance by group (telephone group: 7.6 ± 1.3 sessions; in-person 7.8 ± 0.42). Acceptability and reductions in fatigue were observed regardless of group, and improvements in a range of secondary outcomes were comparable. DISCUSSION AND CONCLUSIONS: A telephone-delivered exercise intervention that targets MS-related fatigue is both feasible and acceptable. Primary and secondary outcome measures signaled that telephone-delivered exercise may be an effective mode of delivery that overcomes barriers to care in persons with MS and warrants testing in larger efficacy trials.Video Abstract available for more insights from the authors (see Video, Supplemental Digital Content 1, http://links.lww.com/JNPT/A293).

Measuring Pain in TBI: Development of the TBI-QOL Pain Interference Item Bank and Short Form.

OBJECTIVE: To develop a pain interference item bank, computer adaptive test (CAT), and short form for use by individuals with traumatic brain injury (TBI). DESIGN: Cross-sectional survey study. SETTING: Five TBI Model Systems rehabilitation hospitals. PARTICIPANTS: Individuals with TBI (N=590). INTERVENTIONS: Not applicable. OUTCOME MEASURES: Traumatic Brain Injury-Quality of Life (TBI-QOL) Pain Interference item bank. RESULTS: Confirmatory factor analysis provided evidence of a single underlying trait (χ2 [740]=3254.030; P<.001; Comparative Fix Index=0.988; Tucker-Lewis Index=0.980; Root Mean Square Error of Approximation=0.076) and a graded response model (GRM) supported item fit of 40 Pain Interference items. Items did not exhibit differential item functioning or local item dependence. GRM calibration data were used to inform the selection of a 10-item static short form and to program a TBI-QOL Pain Interference CAT. Comparative analyses indicated excellent comparability and reliability across test administration formats. CONCLUSION: The 40-item TBI-QOL Pain Interference item bank demonstrated strong psychometric properties. End users can administer this measure as either a 10-item short form or CAT.

The Physical and Psychological Experience of Rowing the North Atlantic Solo and Unassisted.

INTRODUCTION: The present study followed an individual's successful, record-setting, solo, unsupported row across the North Atlantic Ocean to gain an understanding of the physical and psychological experience of this extreme endurance feat. METHODS: The participant was a 37-y-old male endurance athlete. Over the course of his nearly 39-d row, he provided daily ratings of effort, physical symptoms, and psychological experiences via a self-report questionnaire. Quantitative data were analyzed using simulation modelling analysis to examine within-day and cross-lagged correlations between perceived exertion and all other variables. Qualitative data were examined via thematic content analysis. RESULTS: Results showed that, on average, the participant experienced low levels of pain intensity, pain interference, fatigue interference, sleepiness, loneliness, boredom, anxiety, and frustration, in contrast to moderate scores for fatigue, restfulness, positive emotions, calmness, and confidence. There were statistically significant correlations between higher levels of perceived exertion and higher same-day levels of pain interference, fatigue, and fatigue interference, as well as lower same-day levels of calmness, loneliness, and boredom. Qualitative responses revealed 3 primary stressor types (internal physical, internal psychological, and external stressors) and 5 coping responses (acceptance/mindfulness, active response/problem solving, adjusting expectations/goal setting, distraction, and resignation). CONCLUSIONS: Study findings indicate that the extreme athlete experienced physical and emotional challenges, but he demonstrated positive adjustment via the frequent experience of positive emotions and proficient use of a broad set of coping strategies matched to the daily stressor being addressed.

Pain Is Inevitable But Suffering Is Optional: Relationship of Pain Coping Strategies to Performance in Multistage Ultramarathon Runners.

INTRODUCTION: Ultramarathon runners commonly endure musculoskeletal pain during endurance events. However, the effect of pain coping skills on performance has not been examined. METHODS: A prospective observational study during three 250 km (155 mi), 6 stage ultramarathons was conducted. Finish line surveys were completed after each of the four 40 km (25 mi) and one 80 km (50 mi) stages of racing. Variables gathered included pain intensity, pain coping strategy use, pain interference, finishing position (quintile), and successful race completion. RESULTS: A total of 204 participants (age 41.4±10.3 y; 73% male) reported average pain intensity of 3.9 (±2.0 SD) and worst pain intensity of 5.3 (±2.3) on a 0 to 10 scale. They used greater adaptive pain coping strategies (3.0±1.3) relative to maladaptive strategies (1.3±1.1). Worst pain and pain interference increased over each stage of the race for all runners (P<0.001), with worst pain being significantly different by finishing status (P=0.02). Although all runners endured increased pain and interference, the nonfinishers (28 [14%]) had significantly greater differences in changes in pain intensity (P<0.01) and pain interference (P<0.001). Maladaptive pain coping strategies were more common in nonfinishers; with each 1-point increase (0-6 scale), there was a 3 times increase in odds of not finishing the race. CONCLUSIONS: Although increased pain intensity and pain interference was found in all multistage ultramarathon runners, successful event completion was significantly associated with less maladaptive pain coping. Training in coping with pain may be a beneficial part of ultramarathon preparation.

Daily Temporal Associations Between Physical Activity and Symptoms in Multiple Sclerosis.

Background: Symptom severity is negatively associated with physical activity in multiple sclerosis (MS). However, it is unclear how physical activity and symptoms correlate on a day-to-day basis in persons with MS. Purpose: To determine the temporal within-person associations of pain, fatigue, depressed mood, and perceived cognitive function with physical activity in MS. Methods: Ambulatory adults with MS (N = 107) completed 7 days of home monitoring. Continuous physical activity data (assessed via wrist-worn accelerometer) and concurrent ecological momentary assessment (5X/day) of pain, fatigue, depressed mood, and perceived cognitive function were collected. Data were analyzed using multilevel mixed modeling. Results: Fatigue and depressed mood demonstrated bidirectional associations with physical activity, whereas pain and cognitive function did not. Higher than usual fatigue (B = -5.83, p = .001) and depressed mood (B = -4.12, p = .03) were followed by decreased physical activity. In contrast, higher than usual physical activity was associated with subsequent decline in fatigue (B = -0.001, p = .02) and depressed mood (B = -0.0007, p = .02); however, the association between physical activity and fatigue varied across the day. Conclusions: Physical activity is dynamically related to fatigue and mood on a moment-to-moment basis in MS. Efforts to increase physical activity in MS must incorporate a focus on how symptoms affect and are affected by activity.

Development of a person-centered conceptual model of perceived fatigability.

PURPOSE: Perceived fatigability, reflective of changes in fatigue intensity in the context of activity, has emerged as a potentially important clinical outcome and quality of life indicator. Unfortunately, the nature of perceived fatigability is not well characterized. The aim of this study is to define the characteristics of fatigability through the development of a conceptual model informed by input from key stakeholders who experience fatigability, including the general population, individuals with multiple sclerosis (MS), and individuals with fibromyalgia (FM). METHODS: Thirteen focus groups were conducted with 101 participants; five groups with n = 44 individuals representing the general population, four groups with n = 26 individuals with MS, and four groups with n = 31 individuals with FM. Focus group data were qualitatively analyzed to identify major themes in the participants' characterizations of perceived fatigability. RESULTS: Seven major themes were identified: general fatigability, physical fatigability, mental fatigability, emotional fatigability, moderators of fatigability, proactive and reactive behaviors, and temporal aspects of fatigability. Relative to those in the general sample, FM or MS groups more often described experiencing fatigue as a result of cognitive activity, use of proactive behaviors to manage fatigability, and sensory stimulation as exacerbating fatigability. CONCLUSIONS: Fatigability is the complex and dynamic process of the development of physical, mental, and/or emotional fatigue. Trait- and state-like biological, psychological, social, and environmental moderators contribute to tremendous variability in fatigability (both between and within-person variability). Future research to further characterize fatigability across populations, test treatments for fatigability, and develop new measures of this construct are greatly needed.

Group Differences Among Caregivers of Civilians and Service Members or Veterans With Traumatic Brain Injury.

OBJECTIVE: To examine group differences among caregivers of service members or veterans (SMVs) and civilians with traumatic brain injury (TBI). DESIGN: An observational research study examining the group differences between caregivers of SMVs and civilians with TBI. The data presented was collected as part of a larger study that calibrated and validated the Traumatic Brain Injury-Care Quality of Life (TBI-CareQOL) item banks. SETTING: Participants in this multicenter study completed an online survey via a study-specific website. Surveys were completed at the study site, at home, or via phone interview. Civilian caregivers were recruited from 4 rehabilitation hospitals and caregivers of SMVs were recruited through community outreach and collaboration with the Hearts of Valor. PARTICIPANTS: Participants (N=473) consisted of 344 caregivers of civilians with TBI and 129 caregivers of SMVs with TBI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Zarit Burden Interview Scale, TBI-CareQOL, and Mayo Portland Adaptability Inventory, 4th revision (MPAI-4). RESULTS: Of the independent variables included in the logistic regression model that classified military-affiliated vs civilian caregivers, 5 were statistically significant: age, spousal status, time since injury, MPAI-4 Adjustment, and TBI-CareQOL Feeling Trapped. CONCLUSIONS: The results indicate that caregivers of SMVs were more likely to report worse emotional and social adjustment among the individuals with TBI and caregivers of SMVs were more likely to report greater levels of feeling trapped by their caregiving duties.