Use of coping strategies in multiple sclerosis:Association with demographic and disease-related characteristics

Background: Coping positively and negatively influences psychosocial and other outcomes in multiple sclerosis (MS), but there is conflicting evidence about the use of different coping strategies and their associations with demographic and disease characteristics. Our aims were to examine which coping strategies are used by a large sample of people with MS, then to identify any associations between demographic and disease related factors with use of individual coping strategies. Methods: Participants in the Trajectories of Outcomes in Neurological Conditions (TONiC) study completed the Coping Orientations to Problems Experienced (COPE60) questionnaire. Relationships between demographic and clinical characteristics and coping strategies were examined by multiple ordinal logistic regression to assess the effect of each potential predictor after adjustment for other possible covariates. Results: From 722 patients, the most commonly used strategy was Acceptance, followed by Active Coping, Planning and Positive Reinterpretation and Growth. All but two strategies showed significant associations with demographic and clinical characteristics. The most marked effects were found for Restraint, with people in employment 2.1 times as likely to utilise this strategy compared to those unemployed, and Seeking of Emotional Social Support and Focus on and Venting of Emotions, which were utilised twice as much by women compared to men. Behavioural and Mental Disengagement were highly associated with greater disability and not being in employment. Conclusion: Clinicians should be aware of several disease and demographic characteristics that are associated with use of potentially maladaptive coping strategies

Use of coping strategies in MND/ALS:association with demographic and disease-related characteristics

Objective Understanding the use of coping strategies and which factors are associated with strategy utilization might help clinical staff anticipate which coping strategies individuals are more likely to utilize. In this study, we assess coping strategy use in the motor neuron disease (MND, also known as amyotrophic lateral sclerosis [ALS]) population and examine associations of demographic and disease variables with individual coping strategies. Participants and Methods A total of 233 participants with MND/ALS were recruited into the ongoing Trajectories of Outcomes in Neurological Conditions study from MND clinics across the United Kingdom. Participants completed a questionnaire pack collecting data on demographics and a range of patient‐reported measures including the Coping Orientations to Problems Experienced scale. Associations between demographic and clinical characteristics and coping strategies were examined by simple and multiple ordinal logistic regression. Results The most commonly used strategy was Acceptance, followed by Active Coping, Planning and Positive Re‐interpretation and Growth. The least used strategies were Substance Use, Turning to Religion and Denial. Ten out of the fifteen strategies showed statistically significant associations with demographic and clinical characteristics. Most markedly, females were found to utilize many strategies more than males, namely Restraint, Seeking Instrumental Social Support, Seeking Emotional Social Support, Focus on and Venting of Emotions, Behavioural Disengagement and Mental Disengagement. Conclusion Clinical staff should be aware that coping strategy use is associated with several demographic and disease characteristics. Targeted advice on coping may improve coping capacity and facilitate psychosocial adjustment

Development and validation of Spasticity Index-Amyotrophic Lateral Sclerosis.

OBJECTIVES: Spasticity is a common and disabling feature of amyotrophic lateral sclerosis (ALS). There are currently no validated ALS-specific measures of spasticity. The aim of this study was to develop and use a self-report outcome measure for spasticity in ALS. METHODS: Following semi-structured interviews with 11 ALS patients, a draft scale was administered across ALS clinics in the UK. Internal validity of the scale was examined using the Rasch model. The numerical rating scale (NRS) for spasticity and Leeds Spasticity scale (LSS) were co-administered. The final scale was used in a path model of spasticity and quality of life. RESULTS: A total of 465 patients (mean age 64.7 years (SD 10), 59% male) with ALS participated. Spasticity was reported by 80% of subjects. A pool of 71 items representing main themes of physical symptoms, negative impact and modifying factors was subject to an iterative process of item reduction by Rasch analysis resulting in a 20-item scale-the Spasticity Index for ALS (SI-ALS)-which was unidimensional and free from differential item functioning. Moderate correlations were found with LSS and NRS-spasticity. Incorporating the latent estimate of spasticity into a path model, greater spasticity reduced quality of life and motor function; higher motor function was associated with better quality of life. CONCLUSIONS: The SI-ALS is a disease-specific self-report scale, which provides a robust interval-level measure of spasticity in ALS. Spasticity has a substantial impact on quality of life in ALS

Do pain, anxiety and depression influence quality of life for people with amyotrophic lateral sclerosis/motor neuron disease?:A national study reconciling previous conflicting literature

INTRODUCTION: The importance of elucidating the relationships between pain, mood and quality of life (QoL) amongst people with amyotrophic lateral sclerosis/motor neuron disease is evident to clinicians, yet the literature is limited and inconsistent. We explored the relationships between pain, depression, anxiety and QoL to reconcile the previous contrasting findings and inform future research and clinical practice. METHODS: Patient-reported outcomes were obtained as part of the Trajectories of Outcomes in Neurological Conditions study. Mood and QoL scales underwent Rasch analysis. Correlation coefficients examined the strength of association between variables of interest. A bivariate regression model was developed to examine the effects of pain, depression and anxiety on joint psychological and physical QoL domains. RESULTS: Of 636 people with ALS, 69% reported pain, of these most had mild pain. Seven percent (7%) of participants exceeded published cutoffs for probable depression and 14% had probable anxiety. Pain, depression and anxiety all influence quality of life; depression has a significant effect on both physical and psychological domains of QoL, whereas pain affects physical QoL and anxiety psychological QoL. CONCLUSIONS: These results show the importance of expressing quality of life in a conceptually appropriate way, as failing to take account of the multidimensional nature of QoL can result in important nuances being overlooked. Clinicians must be aware that pain, depression and anxiety all worsen QoL across their ranges, and not just when pain is severe or when anxiety or depression reach case level

Measuring coping in people with amyotrophic lateral sclerosis using the Coping Index-ALS: A patient derived, Rasch compliant scale

OBJECTIVE: The progressively disabling and terminal nature of ALS/MND imposes major coping demands on patients. We wished to improve the psychometric properties of our previously published MND-Coping Scale, so that parametric analyses were valid, and to make it simpler for patients to complete and clinicians to score. METHODS: After a new qualitative analysis of 26 patients with ALS/MND, the draft Coping Index-ALS (CI-ALS) was administered to 465 additional patients, alongside COPE-60, General Perceived Self Efficacy scale, and WHOQOL-BREF. Validity of the CI-ALS was assessed using the Rasch model. External validity was checked against comparator measures. RESULTS: Thirteen centres contributed 465 patients, mean age 64.9 years (SD 10.8), mean disease duration 28.4 months (SD 37.5). The CI-ALS-Self and CI-ALS-Others both satisfied Rasch model expectations and showed invariance across age, gender, marital status and type of onset. Expected correlations were observed with comparator scales. A nomogram is available to convert the raw scores to interval level measures suitable for parametric analysis. CONCLUSIONS: Coping abilities in ALS/MND can now be measured using a simple 21 item self-report measure, offering two subscales with a focus of 'coping by self ' and 'coping with others'. This allows clinicians to identify individuals with poor coping and facilitates research on interventions that may improve coping skills.The article is available via Open Access. Click on the 'Additional link' above to access the full-text.Published version, accepted version (12 month embargo

Dyspnea (breathlessness) in amyotrophic lateral sclerosis/motor neuron disease: prevalence, progression, severity, and correlates.

Objective: Dyspnea, or breathlessness, is an important symptom in amyotrophic lateral sclerosis/motor neuron disease (ALS/MND). We examined the measurement properties of the Dyspnea-12. Methods: Rasch analysis enabled conversion of raw Dyspnea-12 scores to interval level metric equivalents. Converted data were used to perform trajectory modeling; those following different trajectories were compared for demographic, clinical, symptom, and functioning characteristics. Logistic regression examined differences between distinct trajectories. Results: In 1022 people, at baseline, mean metric Dyspnea-12 was 7.6 (SD 9.3). 49.8% had dyspnea, severe in 12.6%. Trajectory analysis over 28 months revealed three breathlessness trajectories: group 1 reported none at baseline/follow-up (42.7%); group 2 significantly increased over time (9.4%); group 3 had a much higher level at baseline which rose over follow-up (47.9%). Group 3 had worse outcomes on all symptoms, functioning and quality of life; compared to group 1, their odds of: respiratory onset sixfold greater; King's stage ≥3 2.9 greater; increased odds of being bothered by choking, head drop, fasciculations, and muscle cramps; fatigue and anxiety also elevated (p Conclusion: Dyspnea is a cardinal symptom in ALS/MND and can be quickly measured using the Dyspnea-12. Raw scores can easily be converted to interval level measurement, for valid change scores and trajectory modeling. Dyspnea trajectories reveal different patterns, showing that clinical services must provide monitoring which is customized to individual patient need. Almost half of this large population had worsening dyspnea, confirming the importance of respiratory monitoring and interventions being integrated into routine ALS care