Rasch‐Transformed Total Neuropathy Score clinical version (RT‐TNSc©) in patients with chemotherapy‐induced peripheral neuropathy

Composite scales such as the Total Neuropathy Score clinical version (TNSc^©) have been widely used to measure neurological impairment in a standardized manner but they have been criticized due to their ordinal setting having no fixed unit. This study aims to improve impairment assessment in patients with chemotherapy‐induced peripheral neuropathy (CIPN) by subjecting TNSc^© records to Rasch analyses. In particular, we wanted to investigate the influence of factors affecting the use of the TNSc^© in clinical practice. TNSc^© has 7 domains (sensory, motor, autonomic, pin‐prick, vibration, strength, and deep tendon reflexes [DTR]) each being scored 0–4. Data obtained in 281 patients with stable CIPN were subjected to Rasch analyses to determine the fit to the model. The TNSc^© did not meet Rasch model's expectations primarily because of misfit statistics in autonomic and DTR domains. Removing these two, acceptable model fit and uni‐dimensionality were obtained. However, disordered thresholds (vibration and strength) and item bias (mainly cultural) were still seen, but these findings were kept to balance the assessment range of the Rasch‐Transformed TNSc^© (RT‐TNSc^©). Acceptable reliability findings were also obtained. A 5‐domains RT‐TNSc^© may be a more proper assessment tool in patients with CIPN. Future studies are needed to examine its responsive properties.     

Rasch‐built Overall Disability Scale for Multifocal motor neuropathy (MMN‐RODS©)

Clinical trials in multifocal motor neuropathy (MMN) have often used ordinal‐based measures that may not accurately capture changes. We aimed to construct a disability interval outcome measure specifically for MMN using the Rasch model and to examine its clinimetric properties. A total of 146 preliminary activity and participation items were assessed twice (reliability studies) in 96 clinically stable MMN patients. These patients also assessed the ordinal‐based overall disability sum score (construct, sample‐dependent validity). The final Rasch‐built overall disability scale for MMN (MMN‐RODS^©) was serially applied in 26 patients with newly diagnosed or relapsing MMN, treated with intravenous immunoglobulin (IVIg) (1‐year follow‐up; responsiveness study). The magnitude of change for each patient was calculated using the minimum clinically important difference technique related to the individually obtained standard errors. A total of 121 items not fulfilling Rasch requirements were removed. The final 25‐item MMN‐RODS^© fulfilled all Rasch model's expectations and showed acceptable reliability and validity including good discriminatory capacity. Most serially examined patients improved, but its magnitude was low, reflecting poor responsiveness. The constructed MMN‐RODS^© is a disease‐specific, interval measure to detect activity limitations in patients with MMN and overcomes the shortcomings of ordinal scales. However, future clinimetric studies are needed to improve the MMN‐RODS^©'s responsiveness by longer observations and/or more rigorous treatment regimens.     

The Val30Met familial amyloid polyneuropathy specific Rasch‐built overall disability scale (FAP‐RODS©)

Familial amyloid polyneuropathy (FAP) is a chronic debilitating multi‐organic disorder, mainly assessed using ordinal‐based impairment measures. To date, no outcome measure at the activity and participation level has been constructed in FAP. The current study aimed to design an interval activity/participation scale for FAP through Rasch methodology. A preliminary FAP Rasch‐built overall disability scale (pre‐FAP‐RODS) containing 146 activity/participation items was assessed twice (interval: 2–4 week; test‐retest reliability) in 248 patients with Val30Met FAP examined in Porto, Portugal, of which 65.7% have received liver transplantation. An ordinal‐based 24‐item FAP‐symptoms inventory questionnaire (FAP‐SIQ) was also assessed (validity purposes). The pre‐FAP‐RODS and FAP‐SIQ data were subjected to Rasch analyses. The pre‐FAP‐RODS did not meet model's expectations. On the basis of requirements such as misfit statistics, differential item functioning, and local dependency, items were systematically removed until a final 34‐item FAP‐RODS^© was constructed fulfilling all Rasch requirements. Acceptable reliability/validity scores were demonstrated. In conclusion, the 34‐item FAP‐RODS^© is a disease‐specific interval measure suitable for detecting activity and participation restrictions in patients with FAP. The use of the FAP‐RODS^© is recommended for future international clinical trials in patients with Val30Met FAP determining its responsiveness and its cross‐cultural validation. Its expansion to other forms of FAP should also be focus of future clinical studies.     

Quality of life and impulsivity in bipolar disorder

Victor SE, Johnson SL, Gotlib IH. Quality of life and impulsivity in bipolar disorder.
Bipolar Disord 2011: 13: 303–309. © 2011 The Authors.
Journal compilation © 2011 John Wiley & Sons A/S. Objectives: Bipolar disorder (BD) is a chronic psychiatric illness that impairs quality of life (QoL) in numerous life domains even when mood symptoms are not present and is characterized by elevated impulsivity. Many of the comorbid conditions that are associated with diminished QoL in BD also involve impulsivity. The objective of this project was to investigate whether impulsivity might mediate the effects of these comorbid conditions on poor QoL. Methods: A total of 76 participants diagnosed with bipolar I disorder by the Structured Clinical Interview for DSM‐IV Axis I disorders completed the Quality of Life in Bipolar Disorder (QoL‐BD) scale, the Barratt Impulsivity Scale (BIS‐11), and the Positive Urgency Measure (PUM). Participants were also assessed for comorbid DSM‐IV diagnoses of anxiety, substance use, and impulse control disorders. Results: Several subscales of the BIS‐11 as well as the PUM total score were significantly negatively correlated with overall QoL. PUM total score remained a significant predictor of QoL after controlling for comorbid anxiety, substance use, and impulse control disorders. After controlling for impulsivity, comorbid disorders were no longer significantly related to overall QoL. Conclusions: The data support the hypothesis that impulsivity, specifically positive urgency, is highly correlated with QoL in BD. Impulsivity was found to mediate the relation between QoL and several comorbidities in BD. Interventions targeting impulsivity might help to improve QoL in BD.     

Norfolk QOL‐DN: validation of a patient reported outcome measure in transthyretin familial amyloid polyneuropathy

The Norfolk Quality of Life‐Diabetic Neuropathy (QOL‐DN) questionnaire is an instrument to assess QOL in diabetic polyneuropathy. The objective of this observational, cross‐sectional study in 61 patients with V30M transthyretin familial amyloid polyneuropathy (TTR‐FAP) and 16 healthy volunteers was to validate the Norfolk QOL‐DN for assessment of QOL in TTR‐FAP. Comparisons were conducted to identify the best items to discriminate disease stages and assess which individual Norfolk domains (symptoms, large fiber, small fiber, autonomic, and activities of daily living) would be most affected by disease stage. Analysis of individual items revealed a significant pattern of discrimination among disease stages (p < 0.001). Total QOL scores increased (indicating worsening) with duration of symptoms, with a steeper increase observed earlier in the course of disease. Significant correlations were observed between each Norfolk domain and other measures of neurological function. Limitations include cross‐sectional study design, low patient numbers in this rare disease, and the ordinal‐based character of the metric used; future areas to explore include item response theory approaches such as Rasch analysis. These results suggest the Norfolk QOL‐DN is a reliable indicator of the impact of disease severity on QOL in patients with TTR‐FAP.     

The relationship between clinical outcomes and quality of life in first‐episode mania: a longitudinal analysis

Objectives: Despite growing attention to the relationship between bipolar disorder (BD) and quality of life (QoL), there remains a lack of information about QoL in the early stages of BD, and about the course of QoL in people with BD over time. Here, we report on QoL and symptomatic outcomes over a 1.5‐year period in a Canadian sample of first‐episode mania patients. Methods: Patients (n = 63) with DSM‐IV‐TR BD type I recovering from a recent episode of mania were recruited from a university‐based hospital setting in Vancouver, BC, Canada and assessed at six monthly intervals for 18 months. In addition to symptomatic and cognitive assessments, two self‐report QoL scales [the Quality of Life Enjoyment and Satisfaction Questionnaire (Q‐LES‐Q) and the Medical Outcomes Study Short Form 36 (SF‐36)] were administered. Results: Baseline QoL scores were high, with mean Q‐LES‐Q scores at 70% of the maximum possible score; QoL continued to show a trend towards improvement over time. Multiple hierarchical regressions were used to explore predictors of QoL over time, finding that: (i) length of illness and severity of depressive symptoms at baseline predicted Q‐LES‐Q scores at both baseline and six months; (ii) the number of previous depressive episodes and severity of depression at baseline and 12 months all predicted QoL at 12 months; and (iii) only severity of depressive symptoms at 12 months predicted QoL at 18 months. Conclusions: Our observation that QoL in patients who have recently experienced an episode of mania can be relatively preserved offers hope, both for healthcare providers and for those newly diagnosed. Further, that severity of depressive symptoms even in the early stages of the disease was the consistent predictor of QoL suggests that depressive symptoms need to be aggressively treated to improve QoL.     

Health‐related quality‐of‐life scales in Parkinson's disease: Critique and recommendations

Health‐related quality of life is an important patient‐reported outcome used in intervention trials and for monitoring the consequences of health status on physical, mental, and social domains. Parkinson's disease is a complex disorder that strongly affects patients' quality of life. Several health‐related quality of life tools have been used in Parkinson's disease. A Movement Disorder Society Task Force was commissioned to rate the psychometric quality of available health‐related quality of life scales as applied to Parkinson's disease. Following the methodology adopted by previous work of the Movement Disorder Society Task Force, a review of generic and specific health‐related quality of life scales applied in studies on Parkinson's disease was completed. Considering the scales from 3 perspectives—use in Parkinson's disease, use by multiple research groups, and clinimetric properties—a final classification as “recommended,” “suggested,” or “listed” was applied to each reviewed instrument. Four generic scales (EuroQoL, Nottingham Health Profile, 36‐Item Short‐Form Health Survey, and Sickness Impact Profile) and 5 specific scales (39‐Item Parkinson's Disease Questionnaire, Parkinson's Disease Questionnaire Short Form, Parkinson's Disease Quality of Life Questionnaire, Parkinson's Impact Scale, and Scales for Outcomes in Parkinson's Disease–Psychosocial) reached the level of “recommended.” The 39‐item Parkinson's Disease Questionnaire is the most thoroughly tested and applied questionnaire. Three other generic measures (Quality of Life Questionnaire 15D, Schedule for the Evaluation of Individual Quality of Life‐Direct Weighting, and World Health Organization Quality of Life Assessment Short Version) and the specific Parkinson's Disease Quality of Life Scale are “suggested.” With a little additional effort in completing the stipulated requirements, they could reach the “recommended” level. At present there is a wide variety of health‐related quality of life measures for application in the Parkinson's disease setting, and the task force does not recommend the development of a new scale. Selection of the most appropriate instrument for a particular objective requires consideration of the characteristics of each scale and the goals of the assessment. © 2011 Movement Disorder Society     

Quality of Life in relation to neuropsychiatric symptoms in Alzheimer's disease: 5‐year prospective ALSOVA cohort study

Objective

To examine the association between neuropsychiatric symptoms (NPS) with self‐ and caregiver‐rated Quality of Life (QoL) for patients with Alzheimer's disease (AD) during a 5‐year follow‐up.

Methods

The ALSOVA 5‐year follow‐up study included, at baseline, 236 patients with either very mild (Clinical Dementia Rating Scale (CDR) 0.5), or mild (CDR 1) AD, together with their caregivers from three Finnish hospital districts. QoL was evaluated using patient self‐reported, and caregiver‐rated, QoL in AD (QoL‐AD) scores. NPS were assessed using the Neuropsychiatric Inventory (NPI), and AD severity was evaluated using the CDR, with cognition tested by the mini‐mental state examination. The performance of daily activities was assessed using the Alzheimer's Disease Cooperative Study–Activities of Daily Living Inventory.

Results

Over the 5‐year follow‐up period, patient self‐reported QoL‐AD scores did not change significantly (p = 0.245), despite increases in their NPS. However, caregiver‐rated patient QoL‐AD scores declined significantly (p ≤ 0.001), as total NPI scores increased during follow‐up. No NPS at baseline, and only apathy at follow‐up, correlated significantly (p = 0.007) with patient self‐rated QoL‐AD scores. Caregiver‐rated patient QoL‐AD scores correlated significantly with most NPS, especially (p ≤ 0.001) apathy, agitation, anxiety, irritability, depression, and delusions at baseline, and delusions, hallucinations, apathy, appetite disturbances, and anxiety during follow‐up.

Conclusions

Patient rated QoL‐AD scores are an unreliable tool with which to evaluate the success of therapy for NPS. Instead, caregiver‐rated scores for patients correlated well with NPI scores, and health care professionals in the clinic should preferentially use these. Copyright © 2017 John Wiley & Sons, Ltd.     

Depression and quality of life in monogenic compared to idiopathic,early‐onset Parkinson's disease

Quality of life (QoL) is decreased in PD and is linked with depression and anxiety. However, little is known about QoL in monogenic PD. Subjects with mutations in PD genes were recruited from ongoing family and genetic studies (manifesting carriers, n = 23; nonmanifesting carriers, n = 19). For comparison purposes, we included patients with idiopathic PD (IPD; n = 128; early onset, n = 38; late onset, n = 90), healthy controls (n = 127), and data on depressive symptoms of 144 patients with major depression (treated controls). Depression affected 31% of early‐onset PD cases, 21% of late‐onset cases, and 44% of manifesting carriers of mutations in PD genes, but was rare in the nonmanifesting carriers (7%) and healthy controls (5%). Subjects with Parkinson‐associated depression reported fewer feelings of guilt or self‐doubt than treated controls, but the occurrence of suicidal ideation was associated with severity of depression only. Social phobia (P = 0.018) and agoraphobia (P = 0.059) were more common in manifesting carriers than in any other group. QoL was decreased in the Parkinson groups, particularly in the early‐onset cases (P < 0.001), and QoL correlated with depression in all analyses. In our study, monogenic and IPD cases were comparable in QoL and depression characteristics. The QoL and, possibly, overall prognosis of all PD patients can be improved by appropriate attention and treatment for depression, sleep impairments, and anxiety, even if the treatment of the motor problems cannot be further optimized. © 2012 Movement Disorder Society     

Development of the QoL.BD: a disorder-specific scale to assess quality of life in bipolar disorder

Michalak EE, Murray G, CREST.BD. Development of the QoL.BD: a disorder‐specific scale to assess quality of life in bipolar disorder.
Bipolar Disord 2010: 12: 727–740. © 2010 The Authors.
Journal compilation © 2010 John Wiley & Sons A/S. Background: There is wide recognition that symptom ratings alone are inadequate to measure outcomes in bipolar disorder (BD), and quality of life (QoL) has been proposed as an important separable construct. Although a literature on QoL in BD exists, there is no disorder‐specific measure of QoL in BD. In 2004, we embarked upon a four‐year mixed‐method program of research to develop such a measure that could function as an outcome tool in clinical trials of pharmacological or psychosocial treatment interventions, longitudinal monitoring, or routine clinical care. Methods: The project was informed by standard protocols for the development of disorder‐specific QoL measures. Two phases of scale development were pursued across four empirical studies. Item generation involved a qualitative investigation of individuals with BD, family members, and field experts (Study 1), as well as a literature review. Item reduction analyses were conducted using an intensive small‐N design with affected individuals (Study 2), a large field sample (Study 3), and a final small‐N item reduction study, again involving individuals with the disorder and field experts (Study 4). Results: Initial field testing of the Quality of Life in Bipolar Disorder (QoL.BD) scale supports use of the instrument as a feasible, reliable and valid disorder‐specific QoL measure for BD. Internal reliability of the QoL.BD is impressive, test‐retest reliability is appropriate, and the direction and magnitude of correlations with external measures are as expected. As a new instrument, the QoL.BD must be compared against existing options for measuring QoL in this population. Significantly, data suggest that the greater specificity of the QoL.BD relative to the Quality of Life Enjoyment and Satisfaction Questionnaire renders the new instrument more sensitive to clinical change in BD. Conclusions: Quality of life scales can provide important information additional to that provided by traditional assessments of outcome in BD. Our intensive, mixed‐method development of the QoL.BD has produced a useful additional measure of well‐being for this complex and often disabling condition.     

Improving assessment in small fiber neuropathy

Interval measures at the impairment level addressing symptoms and at the activity/participation level addressing daily and social restrictions have not been developed for small fiber neuropathy (SFN). We developed an SFN‐specific Rasch‐built overall disability scale (SFN‐RODS©), an activity/participation scale at the interval level. A preliminary SFN‐RODS containing 146 activity/participation items was assessed twice (reliability studies) in 238 patients with SFN. The ordinal‐based 13‐item SFN‐symptoms inventory questionnaire (SFN‐SIQ©) and pain‐visual‐analogue‐scale were also assessed (validity studies). The pre‐SFN‐RODS and SFN‐SIQ data were subjected to the Rasch analyses. The pre‐SFN‐RODS did not meet Rasch model expectations. Based on requirements, such as misfit statistics, differential item functioning, and local dependency, items were systematically removed and model fit improved. Finally, a 32‐item SFN‐RODS© scale was constructed that fulfilled all Rasch requirements, demonstrating acceptable reliability and validity scores. The 13‐item SFN‐SIQ© was successfully transformed to an interval Rasch‐built measure fulfilling model's requirements. In conclusion, the 32‐item SFN‐RODS© is a disease‐specific interval measure suitable for detecting activity limitations and participation restrictions in patients with SFN. The 13‐item SFN‐SIQ© was transformed through Rasch to an interval measure. The use of these scales is recommended in future clinical interventional trials involving patients with SFN.     

Correlations between psychopathology and self‐reported quality of life among adolescents in youth correctional facilities in Lagos,Nigeria: A short report

Background

The relationship between psychopathology and quality of life (QoL) and well‐being among young incarcerated offenders has hardly been explored.

Aims

Our aim was to test the hypothesis that higher self‐rated psychopathology would be associated with lower QoL among adolescents resident within youth correctional facilities in Lagos.

Methods

Psychopathology was assessed using the Strength and Difficulty Questionnaire (SDQ), while QoL was measured by using the Paediatric Quality of Life .

Results

One hundred and sixty‐five adolescents completed the study, mostly boys (n = 124; 75%) with a mean age of 14.3 ± 2.1 years. Nearly, a fifth (30, 18%) of respondents had abnormal total SDQ scores (≥17), suggestive of definite psychiatric disorder, while another 44 (27%) had highly probable psychopathology (total SDQ scores 15–16). There was strong negative correlation (r = ?0.51, p < 0.001) between total SDQ scores and overall self‐reported QoL among respondents.

Conclusions and implications for practice

Although we were unable to infer direction of relationship between psychopathology and QoL among these adolescents, it is plausible to suppose that treatment of mental health problems could have a positive impact on rehabilitation and reintegration. Given the rate of likely psychopathology, mental health screening within young offender institutions should be routine, and followed, as necessary with full assessment and resultant treatment. Copyright © 2017 John Wiley & Sons, Ltd.     

Definition of a Geriatric Depression Scale cutoff based upon quality of life: a population‐based study

Objectives

The cutoff scores for the Geriatric Depression Scale (GDS) commonly adopted in clinical and research settings are based upon other neuropsychological tests. However, any intervention for depression should aim at improving subjective quality of life (QoL). We searched for a GDS cutoff level that might identify a decrease in perceived QoL using a scale that also allows formal cost‐effectiveness calculations.

Methods

Quality of life was assessed by the Health Utilities Index, Mark 3 in all 344 residents of Tuscania (Italy) aged 75 years and above. Mood was assessed by both the 30‐item GDS and the derived 15‐item GDS. The association of GDS with low QoL was analyzed by multivariable logistic regression. Receiver operating characteristic curve analysis was adopted to estimate the overall predictive value and the best GDS cutoff for poor QoL.

Results

The 30‐item GDS score was associated with increased probability of a worse QoL (odds ratio (OR) = 1.07, 95% confidence (CI) = 1.02–1.12, p = 0.003); also, it was a fair predictor of worse QoL (area under the curve (AUC) = 0.72; 95% CI = 0.67–0.76). The best GDS score cutoff for identifying a poor QoL was above 9/30. Results were similar (OR = 1.07, 95% CI = 1.02–1.12, p = 0.003, and AUC = 0.72, 95% CI = 0.67–0.76) for the short GDS form for a cutoff above 5/15.

Conclusions

Among older subjects, depressive symptoms are associated with reduced QoL; GDS scores above 9/30 or 5/15 best predict poor perceived health‐related QoL. These cutoff scores could therefore identify subjects in whom treatment is more likely to improve QoL and to yield a favorable cost‐effectiveness ratio. Copyright © 2017 John Wiley & Sons, Ltd.     

Quality of life of male outpatients with personality disorders or psychotic disorders: a comparison

Background Quality of life (QoL) has become increasingly important as an outcome measure in community‐based psychiatry. QoL refers to an individual's sense of well‐being and satisfaction with his current life conditions. It is measured both through objective social indicators and life domain‐specific subjective indicators. People with a personality disorder (PD) or a major mental disorder (MMD) tend to show poor social adjustment, but their relative subjective QoL is not known. Aim To compare the QoL of male outpatients in treatment for PD or MMD overall and by means of specific social and subjective indicators. Methods A sample of 135 men under treatment for PD in Dutch forensic outpatient facilities were compared with 79 men with MMD using the extended Dutch version of the Lancashire Quality of Life Profile (LQoLP). Results Almost all of the objective indicators of QoL were significantly poorer among men with MMD than those with PD, but the groups did not differ on domain‐specific subjective ratings of QoL. Indeed, global subjective QoL was lower in the PD than in the MMD patient group. PD outpatients seemed to have a more complex concept of QoL than the MMD outpatients for whom almost half of the variance in subjective QoL rating was related to their everyday activities and their objective sense of safety. Conclusions and implications for practice Further study of QoL among PD patients would be warranted to test the extent to which subjective dissatisfaction is intrinsic to PD and to explore the possibility of improving it with targeted treatments. Copyright © 2008 John Wiley & Sons, Ltd.     

Long-term exposure to duodenal levodopa/carbidopa infusion therapy improves quality of life in relation especially to mobility, activities of daily living, and emotional well-being

Santos‐García D, Sanjurjo LF, Macías M, Llaneza M, Carpintero P, de la Fuente‐Fernández R. Long‐term exposure to duodenal levodopa/carbidopa infusion therapy improves quality of life in relation especially to mobility, activities of daily living, and emotional well‐being.
Acta Neurol Scand: 2012: 125: 187–191.
© 2011 John Wiley & Sons A/S. Background – Continuous duodenal levodopa infusion (DLI) is an effective therapy that improves quality of life (QoL) in advanced Parkinson′s disease (PD). However, in which aspects improve the patients their QoL has been poorly documented. Methods – We evaluated 39‐item Parkinson′s disease Quality of Life Questionnaire Summary Index score (PDQ‐39SI) changes analyzing its different domains in nine patients with advanced PD treated with DLI. Results – All the patients (64.7 ± 11.1 years, 55.5% men) improved PDQ‐39SI 6 months after beginning with DLI (29.7 ± 8.6, P = 0.008) and after median duration infusion of 25.3 ± 8.8 months (34.8 ± 11.2, P = 0.008) compared with baseline (55.6 ± 11.5). All domains except social support improved significantly at 6 months. Mobility (P = 0.012), activities of daily living (P = 0.015), and emotional well‐being (P = 0.008) improved significantly at the end of the follow‐up. Conclusions– DLI improves QoL in patients with advanced PD after short‐ and long‐term exposure. Whereas all domains except social support improve after 6 months under DLI, only mobility, activities of daily living and emotional well‐being improve significantly after long‐term exposure to DLI.     

The impact of sleep and mood disorders on quality of life in Parkinson’s disease patients

Sleep disturbances are common and often severe in patients with Parkinson’s disease (PD) and their symptoms can be present at any time of day. The purpose of our study was to examine how excessive daytime sleepiness or poor nocturnal sleep quality and mood disorders influence the quality of life (QoL) in PD patients. Ninety-three PD patients from eastern Slovakia were recruited (49.5% males, mean age 68.0 ± 9.5 years, mean disease duration 6.1 ± 5.9 years). Sleep disturbances were measured using the Epworth Sleepiness Scale (ESS) and the Pittsburgh Sleep Quality Index (PSQI); QoL with the Parkinson’s Disease Quality of Life Questionnaire (PDQ-39); depression and anxiety with the Hospital Anxiety and Depression Scale (HADS) and disease severity with the Unified Parkinson’s Disease Rating Scale (UPDRS). χ ² test, bivariate correlations and multiple linear regressions were performed. PSQI and ESS had significant correlations with worse QoL (p < 0.01, p < 0.05, respectively). HADS-D (p < 0.01), HADS-A (p < 0.01), UPDRS (p < 0.01) and disease duration (p < 0.05) were also significantly related to worse QoL. In the linear regression analysis, however, only PSQI (p < 0.01), anxiety (p < 0.001) and UPDRS (p < 0.001) remained significant. The model with PSQI explained 74% of the variance, and the model with ESS explained 63% of the variance in PDQ-39 when analyses were performed separately. In an overall model, however, only PSQI remained significant, accounting for 82% of the variance in PDQ-39. Nighttime poor sleep and anxiety are important contributors leading to a worse QoL. As these are treatable conditions, they should be recognized by clinicians and managed properly.     

Health‐related quality of life in early Parkinson's disease: The impact of nonmotor symptoms

Nonmotor symptoms (NMS) are common in patients with established Parkinson's disease (PD) and have a major impact upon quality of life. We investigated the significance of NMS in relation to health‐related quality of life (HRQoL) in patients with newly diagnosed PD. Patients and healthy controls were recruited as part of the Incidence of Cognitive Impairment in Cohorts with Longitudinal Evaluation in Parkinson's Disease Study. Prevalence of NMS was determined with the Non‐Motor Symptom Questionnaire. HRQoL was recorded with the 39‐item Parkinson's Disease Quality of Life Questionnaire (PDQ‐39). Further assessments included measures of motor disability, depression, sleep, and cognition. One hundred and fifty‐eight patients with newly diagnosed PD and 99 controls participated in this cross‐sectional study. Patients reported greater numbers of NMS than controls (mean 8.3 ± 4.3 versus 2.8 ± 2.5 symptoms; P < 0.001). Patients reported lowest HRQoL in the domains assessing bodily discomfort, mobility, and activities of daily living. Motor and nonmotor symptoms impacted negatively upon HRQoL scores. Patients with the postural instability and gait difficulty motor subtype reported worse HRQoL, compared with those with tremor‐dominant disease. Depression (P < 0.001), incomplete bowel emptying (P < 0.001), anxiety (P < 0.001), impaired concentration (P < 0.001), memory complaints (P < 0.001), and insomnia (P = 0.001) had the greatest negative impact upon HRQoL. NMS are common in patients with early PD and represent a significant cause of poorer health‐related quality of life. Cognitive, neuropsychiatric, and sleep disturbances are particularly associated with reduced well‐being. Screening and management of these symptoms should be prioritized at the time of diagnosis. © 2013 International Parkinson and Movement Disorder Society     

European neuroborreliosis: quality of life 30 months after treatment

Eikeland R, Mygland Å, Herlofson K, Ljøstad U. European neuroborreliosis: quality of life 30 months after treatment.
Acta Neurol Scand: 2011: 124: 349–354.
© 2011 John Wiley & Sons A/S. Objectives – The prognosis after Lyme neuroborreliosis (LNB) is debated. The aim of this study was to assess health‐related Quality of Life (QoL) and neurological symptoms 30 months after treatment in European patients with LNB. Materials and methods – In a prospective case–control designed study, we investigated 50 well‐characterized patients with LNB who had participated in a treatment trial for LNB 30 months earlier and 50 matched control persons with the health QoL questionnaire Short‐Form 36 (SF‐36), the Fatigue Severity Scale (FSS), the Montgomery and Åsberg Depression Rating Scale (MADRS), the Starkstein Apathy Scale (SAS), and the Mini Mental State (MMS). Clinical and demographic data were collected by semi‐structured interviews and clinical neurological examination. Results – Lyme neuroborreliosis‐treated patients scored lower than control persons in the SF‐36 domains physical component summary (PCS) (44 vs 51 P < 0.001) and mental component summary (MCS) (49 vs 54 P = 0.010). They also scored lower than control persons in all the SF‐36 subscales, except for bodily pain, and on FSS (3.5 vs 2.1 P < 0.001), but not on MMS (28 vs 29 P = 0.106). There was a difference in MADRS (3.1 vs 0. 8 P = 0.003) and SAS (13 vs 11 P = 0.016), but the scores were low in both groups. Fatigue was the most frequently reported symptom among LNB‐treated patients (50%). Patients who reported complete recovery (56%) after LNB had similar QoL scores as the controls. Conclusion – European persons treated for LNB have poorer health‐related QoL and have more fatigue than persons without LNB.     

Deconstructing acrophobia: physiological and psychological precursors to developing a fear of heights

Background: Acrophobia is one of the most prevalent phobias, affecting as many as 1 in 20 individuals. Of course, heights often evoke fear in the general population too, and this suggests that acrophobia might actually represent the hypersensitive manifestation of an everyday, rational fear. In this study, we assessed the role of sensory and cognitive variables in Acrophobia. Methods: Forty‐five participants (Mean age 25.07 years, 71% female) were assessed using a booklet with self‐reports as well as several behavioral measures. The data analysis consisted in multivariate linear regression using fear of heights as the outcome variable. Results: The regression analyses found that visual field dependence (measured with the rod and frame test), postural control (measured with the Sharpened Romberg Test), space and motion discomfort (measured with the Situational Characteristics Questionnaire), and bodily symptoms (measured with the Bodily Sensation Questionnaire) all serve as strong predictors for fear of heights (Adjusted r²=.697, P<.0001). Trait anxiety (measured with the State Trait Anxiety Inventory Form Y‐2) was not related with fear of heights, suggesting that this higher order vulnerability factor is not necessary for explaining this particular specific phobia in a large number of individuals. Conclusion: The findings reveal that fear of heights is an expression of a largely sensory phenomena, which can produce strong feelings of discomfort and fear in the otherwise calm individuals. We propose a theory that embraces all these factors and provides new insight into the aetiology and treatment of this prevalent and debilitating fear. Depression and Anxiety, 2010. © 2010 Wiley‐Liss, Inc.     

International clinimetric evaluation of the MG‐QOL15, resulting in slight revision and subsequent validation of the MG‐QOL15r

Introduction: The MG‐QOL15 is a validated, health‐related quality of life (HRQOL) measure for myasthenia gravis (MG). Widespread use of the scale gave us the opportunity to further analyze its clinimetric properties. Methods: We first performed Rasch analysis on >1,300 15‐item Myasthenia Gravis Quality of Life scale (MG‐QOL15) completed surveys. Results were discussed during a conference call with specialists and biostatisticians. We decided to revise 3 items and prospectively evaluate the revised scale (MG‐QOL15r) using either 3, 4, or 5 responses. Rasch analysis was then performed on >1,300 MG‐QOL15r scales. Results: The MGQOL15r performed slightly better than the MG‐QOL15. The 3‐response option MG‐QOL15r demonstrated better clinimetric properties than the 4‐ or 5‐option scales. Relative distributions of item and person location estimates showed good coverage of disease severity. Conclusions: The MG‐QOL15r is now the preferred HRQOL instrument for MG because of improved clinimetrics and ease of use. This revision does not negate previous studies or interpretations of results using the MG‐QOL15. Muscle Nerve 54 : 1015–1022, 2016