Quality of life of adults with intellectual disabilities who live with families in Taiwan

Background Little research has been conducted about the quality of life (QOL) of people with intellectual disabilities (ID) in Taiwan, particularly their subjective QOL. This study examined the personal perceptions of these individuals as measured on internationally recognized core QOL domains and indicators. Methods A census interview survey was conducted in Hsin‐Chu City in Taiwan; 233 adults aged over 16 years with mild ID and living with their families participated in the study. Data were collected using the Cross‐Cultural QOL Indicators (CCQOLI) together with socio‐demographic data that included ‘activities of daily living’ and ‘instrumental activities of daily living’ (IADL). The CCQOLI were based on the three most commonly reported indicators of each of the eight QOL domains: emotional well‐being, interpersonal relations, material well‐being, personal development, physical well‐being, self‐determination, social inclusion and rights. Each indicator has two sets of questions related to the indicator's ‘importance’ and ‘use’. These are answered by the respondent using a 4‐point Likert scale. Results The importance and use of the QOL indicators were evaluated positively by the respondents. The adults' individual characteristics, namely IADL and educational level, were significant predictors for the ‘importance’ while the adults' perceptions of ‘use’ for overall QOL were significantly affected by his/her socio‐economic data, that is, residence location and father's educational level. Conclusions The present study addressed the issue of self‐reported QOL in people with ID in Taiwanese society, becoming a possible benchmark for similar measurements carried out by disability movements there. These results contribute to current advocacy efforts towards creating a supportive environment for people with ID.     

Core pathology of eating disorders as measured by the Eating Disorder Examination Questionnaire (EDE‐Q): the predictive role of a nested general (g) and primary factors

The present study examined several factor models of the Eating Disorder Examination Questionnaire (EDE‐Q), and in particular, whether a nested general factor (‘g’) was present, hence supporting a common pathology factor. A total of 1094 women were randomly selected by Statistics Norway and mailed a questionnaire packet. The sample was randomly split, using the first half for exploratory analyses and the second for confirmatory validation purposes. A four‐factor solution received the best support, but the structure deviated from the original model of Fairburn. The internal consistency was high for the first three factors (.93, .82 and .86) and satisfactory for the fourth (.78). The additional specification of a general (g) factor improved model fit significantly, implying that the EDE‐Q scores are indicators of both a general core and four primary symptom patterns. Furthermore, the g was more strongly related to predictors like age and body mass index (BMI) than the four primary factors in a full structural equation model. The validity of interpreting the global EDE‐Q score as indicative of g was supported. A brief Shape and Weight Concern subscale of 11 items was strongly related to the g‐factor, and may provide an abbreviated measure of overall eating disorder pathology. Copyright © 2013 John Wiley & Sons, Ltd.     

Differences in quality of life domains and psychopathologic and psychosocial factors in psychiatric patients

BACKGROUND: Although treatment of severe mental disorders should strive to optimize quality of life (QOL) for the individual patient, little is known about variations in QOL domains and related psychopathologic and psychosocial factors in patients suffering from schizophrenia, schizoaffective disorder, and/or mood disorders. We hypothesized that QOL in severe mental disorder patients would have a more substantial relationship with psychosocial factors than with illness-associated factors. METHOD: A case-control, cross-sectional design was used to examine QOL of 210 inpatients who met DSM-IV criteria for a severe mental disorder and who were consecutively admitted to closed, open, and rehabilitation wards. Following psychiatric examination, 210 inpatients were assessed using standardized self-report measures of QOL, insight, medication side effects, psychological distress, self-esteem, self-efficacy, coping, expressed emotion, and social support. QOL ratings for patients and a matched control group (175 nonpatients) were compared. Regression and factor analyses were used to compare multidimensional variables between patients with schizophrenia and schizoaffective and mood disorders. RESULTS: In all QOL domains, patients were less satisfied than nonpatient controls. Patients with schizophrenia reported less satisfaction with social relationships and medication when compared with patients with schizoaffective and/or mood disorders. Regression analysis established differential clusters of predictors for each group of patients and for various domains of QOL. On the basis of the results of factor analysis, we propose a distress protection model to enhance life satisfaction for severe mental disorder patients. CONCLUSION: Psychosocial factors rather than psychopathologic symptoms affect subjective QOL of hospitalized patients with severe mental disorders. The findings enable better understanding of the combining effects of psychopathology and psychosocial factors on subjective life satisfaction and highlight targets for more effective intervention and rehabilitation.     

Predictors of quality of life in major psychoses: a naturalistic follow-up study

BACKGROUND: Improved quality of life (QOL) of patients suffering from major psychoses has become an important treatment goal. We sought to determine predictors of perceived QOL and to explore the changes that occur regarding QOL among individuals with schizophrenia as compared to patients with schizoaffective/mood disorders. METHOD: In a naturalistic longitudinal design, 148 inpatients with schizophrenia and 51 inpatients with schizoaffective/mood disorders (DSM-IV) were tracked for 16 months (SD = 4.6 months). Subjects were assessed at 2 timepoints for psychopathology, stress process-related factors, and perceived QOL, as measured by the Quality of Life Enjoyment and Satisfaction Questionnaire. Predictors of fluctuations in QOL index scores during the follow-up period were identified using multiple regression techniques. RESULTS: We found that poor QOL is not a more severe problem for schizophrenia patients than for schizoaffective/mood disorder patients. Improved QOL of schizophrenia patients is associated with reduced paranoid and distress (obsessiveness, somatization) symptoms and increased self-efficacy and self-esteem ratings. Individual changes in QOL index scores among patients with schizoaffective/mood disorders are associated with changes in depression, sensitivity, expressed emotion, and task-oriented coping scores. CONCLUSION: Predictors of changes in satisfaction with life quality over time among schizophrenia patients are distinct from those associated with schizoaffective/mood disorders. Changes in stress process-related factors, rather than psychopathology, predict change in perceived QOL and should be considered when evaluating QOL outcomes.     

视神经脊髓炎患者生活质量调查

目的观察视神经脊髓炎(neuromyelitis optica,NMO)患者扩展残疾状况量表(expanded disability status scale,EDSS)评分、病程、年龄、性别及水通道蛋白4(AQP4)-IgG与生活质量的关系,初步探讨影响NMO患者生活质量的因素。方法对40例NMO患者进行EDSS评分,填写国外广泛使用于NMO患者的中文版简化36医疗结局研究量表(MOSSF-36,简称SF-36量表),分别对NMO患者的EDSS评分、病程、年龄、AQP4-IgG与SF-36量表评分的相关性进行分析。结果 NMO患者EDSS评分与生活质量中生理健康呈中度负相关(r=-0.572,P=0.0001),与心理健康无相关性(r=-0.284,P=0.075)。其中EDSS评分与SF-36量表8个维度中的生理机能(r=-0.484,P=0.002)、生理职能(r=-0.532,P=0.0004)、躯体疼痛(r=-0.386,P=0.014)、一般健康状况(r=-0.420,P=0.007)、精力(r=-0.378,P=0.016)和社会功能(r=-0.373,P=0.018)均呈负相关,与"健康变化"这一项呈低度正相关(r=0.347,P=0.028),而与"情感职能"和"精神健康"两项无相关性(均P0.05)。年龄仅与生理健康(r=-0.390,P=0.013)和其中生理功能(r=-0.498,P=0.001)这一维度呈负相关,病程、性别、AQP4-IgG与生活质量均无相关性(均P0.05),EDSS评分与年龄呈低度正相关(r=0.384,P=0.015)。结论 EDSS评分可作为NMO患者生活质量尤其是生理健康的一个预测因子,临床可常规评定NMO患者EDSS得分,从而指导临床医生关注患者生活质量并进行必要干预。     

Quality of life of adolescents with cerebral palsy: perspectives of adolescents and parents

Quality of life (QOL) has emerged over the past 20 years as an outcome for measuring the effectiveness of health‐improvement interventions. The Cerebral Palsy Quality of Life Questionnaire for Children (CPQOL‐Child) is well regarded and now integrated into research internationally. We describe the results of qualitative research, using grounded research in which we aimed to identify domains of QOL for adolescents with cerebral palsy (CP) from adolescent and parent perspectives to guide the development of an adolescent version. Seventeen adolescents (nine males, eight females) aged 13 to 18 years (mean=15.53 SD=1.74), with varying levels of impairment (Gross Motor Function Classification System levels I n=5, II n=2, III n=6, IV n=4, and V n=6) and their parents (n=23) participated in semi‐structured interviews. Questions included: ‘What do you think is important to your (child’s) QOL?’ and ‘How does CP impact on your (child’s) life?’ Fifteen themes were identified, including domains related to health issues in adolescence, participation, education, specific CP‐related issues (pain and discomfort, communication), family issues, practical issues (financial resources), and changes associated with adolescence (sexuality, independence). The composition of these QOL domains reflects the developmental concerns of adolescents with CP, adding to the views of children, and strongly supports adolescent participation in the development of self‐reported well‐being and QOL measures. Many of the domains are consistent with child reports of QOL and thus it appears feasible and valid to develop a measure that will be transferable across childhood and adolescence.     

Measuring racing thoughts in healthy individuals: The Racing and Crowded Thoughts Questionnaire (RCTQ)

Racing thoughts refer to an acceleration and overproduction of thoughts, which have been associated with manic and mixed episodes. Phenomenology distinguishes ‘crowded’ from ‘racing’ thoughts, associated with mixed depression and mania, respectively. Recent data suggest racing thoughts might also be present in healthy individuals with sub-affective traits and symptoms. We investigated this assumption, with a 34-item self-rating scale, the Racing and Crowded Thoughts Questionnaire (RCTQ), and evaluated its reliability, factor structure, and concurrent validity. 197 healthy individuals completed the RCTQ, the Temperament Evaluation of Memphis, Pisa, Paris, and San Diego – autoquestionnaire (TEMPS-A), the Beck Depression Inventory (BDI), the Altman Self-Rating Mania scale (ASRM), and the Ruminative Response Scale (RRS). Exploratory factor analysis yielded a three-factor solution, labeled ‘thought overactivation’, ‘burden of thought overactivation’, and ‘thought overexcitability’. Internal consistency of each of the three subscales of the RCTQ was excellent. The TEMPS-A cyclothymia score was associated with the three factors, suggesting good concurrent validity. The ‘thought activation’ subscale was selectively associated with current elated mood and included items conveying both the notion of increased amount and velocity of thoughts, whereas the ‘burden of thought overactivation’ subscale was associated with current low mood. The ‘thought overexcitability’ subscale included items conveying the notion of distractibility, and was associated with both elated and low mood. Rumination was not a significant predictor of RCTQ subscores. These results suggest that the RCTQ has good psychometric properties. Racing and crowded thoughts, as measured by the RCTQ, are a multi-faceted phenomenon, distinct from rumination, and particularly associated with mood instability even in its milder forms.     

Subjective quality of life of Nigerian schizophrenia patients: sociodemographic and clinical correlates

Objective: Subjective quality of life (QOL) is dependent upon culture and its evaluation based on one’s particular belief system. This study aimed to examine the subjective QOL of Nigerian out‐patients with schizophrenia and its correlates. Method: Out‐patients with Schizophrenia (n = 99) completed the WHOQOL‐BREF as a measure of their subjective QOL. Sociodemographic, illness related and medication related details were also obtained. Results: Overall, 21 patients (21.2%) were categorised as having ‘good’ and 36 (36.4%) as having ‘poor’ subjective QOL. ‘Poor’ subjective QOL correlated with anxiety/depression symptoms (OR 4.88, 95% CI 2.93–11.48), comorbid medical problems (OR 4.75, 95% CI 1.43–16.33), unemployment (OR 3.75, 95% CI 1.25–11.72) and poor social support (OR 4.60, 95% CI 1.49–14.28). Conclusion: Efforts to improve the QOL of patients with schizophrenia in this environment should encompass the identified variables. Larger, longitudinal and multi‐centred studies are needed to adequately identify factors predicting QOL in this environment.     

Factorial validity of the Chedoke-McMaster Attitudes towards Children with Handicaps Scale (CATCH)

The Chedoke-McMaster Attitudes towards Children with Handicaps Scale (CATCH) has been developed to measure the attitudes of children toward peers with disabilities. The present study aims to evaluate the factorial validity of the CATCH in a sample of 2396 students in 7th grade, including 179 students with disabilities and 2217 typically developing students. Each classroom included at least one student with a disability. The structure of the scale, as proposed by the developers, was tested and its stability was evaluated across gender, disability status, awareness of the disability status of classmates and having a classmate with a disability as a friend. Confirmatory factor analysis did not support the originally proposed subscale structure. Instead of the three proposed subscales, a single subscale including seven items was found. Strict factorial invariance was obtained across gender, disability status, awareness of the disability status of classmates and being friends with a classmate with a disability. Implications of these findings will be discussed.     

Development of the Psychiatric Nurse Job Stressor Scale (PNJSS)

Aims: The aim of the present study was to develop a tool, the Psychiatric Nurse Job Stressor Scale (PNJSS), for measuring the stress of psychiatric nurses, and to evaluate the reliability and validity of the PNJSS. Methods: A total of 302 psychiatric nurses completed all the questions in an early version of the PNJSS, which was composed of 63 items and is based on past literature of psychiatric nurses' stress. Results: A total of 22 items from four factors, ‘Psychiatric Nursing Ability’, ‘Attitude of Patients’, ‘Attitude Toward Nursing’ and ‘Communication’, were extracted in exploratory factor analysis. With regard to scale reliability, the item–scale correlation coefficient was r = 0.265–0.570 (P < 0.01), the Cronbach alpha coefficient was 0.675–0.869, and the test–retest correlation coefficient was r = 0.439–0.771 (P < 0.01). With regard to scale validity, the convergent validity of the ‘job stressor’ scale was r = 0.172–0.420 (P < 0.01), and the predictive validity of the ‘job reaction’ scale was r = 0.201–0.453 (P < 0.01). The compatibility of the factor model to the data was 1.750 (χ²/d.f., 343.189/196, P < 0.01), the goodness of fit index was 0.910, the adjusted goodness of fit index was 0.883, the comparative fit index was 0.924, and the root mean square error of approximation was 0.050. Conclusions: The PNJSS has sufficient reliability and validity as a four‐factor structure containing 22 items, and is valid as a tool for evaluating psychiatric nurse job stressors.     

Predictors of health-related and global quality of life among young adults with difficult-to-treat epilepsy and mild intellectual disability

ObjectiveThis study evaluated predictors of health-related quality of life (HRQOL) and global quality of life (QOL) among young adults with difficult-to-treat epilepsy and mild intellectual disability.MethodsOne hundred and forty-two persons with epilepsy and cognitive problems were routinely screened on HRQOL, global QOL, and psychological distress four weeks after admission to a time-limited residential rehabilitation unit. The PESOS scales (PE = PErformance, SO = SOciodemographic aspects, S = Subjective evaluation/estimation) on epilepsy-specific problems were administered as measures of HRQOL; a questionnaire on life satisfaction and an item on overall QOL were used as measures of global QOL. Psychological distress was captured with the Symptom Checklist 90-R. Further data were gained from medical files. Quality-of- life predictors were identified using univariate methods and stepwise regression analyses.ResultsPsychological distress was the only predictor of all HRQOL and global QOL parameters. Seizure frequency was a predictor of most HRQOL variables. Other epilepsy variables affected only some HRQOL variables but were not associated with global QOL. Health-related quality of life did not seem to be strongly impaired. Only low correlations were found between HRQOL and global QOL.ConclusionThe notion of psychological distress as the most influential predictor of all QOL measures is in line with most findings on QOL in epilepsy. Former observations of weak associations between HRQOL and global QOL among patients with epilepsy and mild intellectual disability are supported. Thus, interventions to reduce psychological distress, besides epilepsy treatment, seem to be of great importance to improve QOL.     

The latent variable structure of the Compulsive Behaviour Checklist in people with Prader–Willi syndrome

The presence and severity of compulsive behaviours may be evaluated via the Compulsive Behaviour Checklist (CBC) and this instrument has been successfully employed in people with intellectual disability. However, the applicability of the overall CBC scoring system, which entails tallying the number of behavioural categories represented (i.e. five) as well as the number of individual behaviours endorsed (i.e 25), is not known in the population with Prader–Willi syndrome (PWS). The present investigation examined the latent variable structure of the CBC in people with PWS in order to identify possible population-specific scoring and interpretation considerations. The 25 behaviour-specific items of the CBC were analysed for 75 people with PWS (44 females and 31 males) aged between 4 and 41 years (mean ± SD = 11.4 ± 9.4) via factor analysis with principal component extraction and equamax rotation. The most suitable solution was determined on the basis of multiple empirical criteria: (1) the scree test; (2) eigenvalues > 1.00; (3) salient loadings > 0.30; (4) the clarity of item assignment to a single latent dimension; (5) the internal consistency of the latent dimension(s) (coefficient α≥ 0.70); and (6) item-total correlations between 0.20 and 0.79. In addition, solutions were examined with respect to psychological theory and previous research. A ‘general factor’ (i.e. single latent dimension) solution which adhered to all a priori criteria was indicated. Twenty-four out of 25 items achieved salient loadings ranging from 0.46 to 0.80 on the general factor. The single item which failed to achieve salience, ‘deviant grooming-skin picking’, exhibited both substantial unique variance (0.997) and moderate reliability (r= 0.59, P < 0.001). The internal consistency of the general factor was strong (α= 0.93) and all salient items were suitably correlated with the unit-weighted total score (r_item-total= 0.41?0.77). The traditional CBC scoring system, which includes tallying the number of categories represented, would not be relevant in this PWS sample. In addition, the recommended tallying of the number of individual behaviours endorsed does not reflect the empirically indicated notion of compulsive behaviour in this special population. These findings indicate that the 24 salient items should be scored as a unit-weighted composite and that the score on the substantially unique item (skin picking) should be considered a separate measure when evaluating compulsive behaviours via the CBC in people with PWS.     

Neurocognition and long-term prediction of quality of life in outpatients with severe and persistent mental illness

The present study examined the predictive validity of neuropsychological measures to quality of life (QOL) indicators in 30 outpatients with severe and persistent mental illness (SPMI), an average of 15 years post-testing. Outcome measures included subscale scores on the Brief Quality of Life Inventory (BQOLI). Results of several stepwise multiple regressions revealed that memory was predictive of income, satisfaction with daily activities, and general health. Executive functioning was predictive of contact with family and financial support. Motor skills were predictive of satisfaction with family contact, and working memory was predictive of victimization and satisfaction with social contacts. Discussion focused on neurocognition as a predictor of QOL, clinical implications, and the potential for improving QOL through cognitive interventions.     

Quality of life is favorable for most patients with multiple sclerosis: a population-based cohort study

BACKGROUND: Quality of life (QOL) is becoming an increasingly important factor in measurement of disease impact as well as an outcome measure in clinical trials. OBJECTIVES: To study the QOL of patients with multiple sclerosis (MS) in a population-based prevalence cohort and compare it with the general US population. DESIGN: Population-based prevalence cohort. SETTING: Olmsted County, Minn, population. PARTICIPANTS: All patients with definite MS (N = 201) alive and residing in Olmsted County on December 1, 2000. INTERVENTION: None. MAIN OUTCOME MEASURES: The expanded disability status scale (EDSS) and the Multiple Sclerosis Quality of Life Health Survey (MSQOL-54), which consisted of Short Form 36 (SF-36) with an additional 18 items pertinent to MS. RESULTS: The MSQOL-54 form was completed by 185 patients. Patients with MS had worse scores than the general US population with respect to physical functioning, vitality, and general health dimensions of the SF-36 QOL measure. Many QOL domains (pain, role emotional, mental health, and social functioning) were, however, similar for the 2000 MS cohort compared with the general US population. Duration of MS and EDSS score correlated significantly with physical functioning (P<.001). The QOL correlation with EDSS score was less than expected. No significant difference in the scores for the 8 QOL dimensions were found for patients with quick vs slow progression (quick progression defined as <5 years from onset to EDSS score of 3). The majority of patients with MS (77%) were mostly satisfied or delighted with their QOL. CONCLUSION: Though MS can cause significant disability, most patients with MS in the Olmsted County prevalence cohort continue to report a good QOL.     

Depression and anxiety disorders associated with headache frequency. The Nord‐Trøndelag Health Study

The aim of this large cross‐sectional population‐based study was to examine the association between migraine, non‐migrainous headache and headache frequency with depression, and anxiety disorders. From 1995 to 1997, all 92 566 inhabitants aged 20 years and above in Nord‐Trøndelag County in Norway were invited to participate in the Nord‐Trøndelag Health Study (‘Helseundersøkelsen i Nord‐Trøndelag’ = HUNT‐2). A total of 64 560 participated, whereof 51 383 subjects (80%) completed a headache questionnaire that was included. Of these 51 383 individuals, 47 257 (92%) completed the depression subscale items and 43 478 (85%), the anxiety subscale items of the Hospital Anxiety and Depression Scale (HADS). Associations were assessed in multivariate analyses, estimating prevalence odds ratios (OR) with 95% confidence intervals (CI). Depression and anxiety disorders as measured by HADS, were significantly associated with migraine (OR = 2.7, 95% CI 2.3–3.2; OR = 3.2, 95% CI 2.8–3.6) and non‐migrainous headache (OR = 2.2, 95% CI 2.0–2.5; OR = 2.7, 95% CI 2.4–3.0) when compared with headache‐free individuals. The association was stronger for anxiety disorders than for depression. The ORs for depression and anxiety disorders amongst both migraine and non‐migrainous sufferers increased with increasing headache frequency. Depression and anxiety disorders are associated with both migraine and non‐migrainous headache, and this association seems more dependent on headache frequency than diagnostic category.     

情感气质自评问卷青少年中文版的修订及信效度检验☆

目的根据情感气质自评问卷中文版,修订更适合青少年群体的情感气质自评问卷青少年中文版,并检验其信度及效度。方法基于之前修订的情感气质自评问卷中文版每个条目的因子负荷,并考虑青少年期的心理发展特点、各个因子条目数量以及内容适应性等因素,最后形成60条目的情感气质自评问卷青少年中文版,对822名11~17岁青少年进行问卷调查,评估该问卷内部一致性信度、结构效度,并比较各因子的性别差异。结果抑郁气质、环性气质、情感旺盛气质、易激惹气质以及焦虑气质因子条目的 Cranbach’sα系数分别为0.67、0.78、0.76、0.77及0.83。探索性因子分析显示焦虑气质、易激惹气质、情感旺盛气质因子可有效区分,而抑郁气质与环性气质的条目则混合在一起。女性在抑郁气质[(3.521±2.221)vs.(3.144±2.295)]、环性气质[(4.484±2.922)vs.(3.917±2.823)]、焦虑气质[(5.236±3.719)vs.(4.366±3.658)]因子的得分高于男性(P0.05),而男性情感旺盛气质因子得分则高于女性[(5.407±2.842)vs.(4.852±2.963),P0.01]。抑郁气质与环性气质因子得分呈正相关(r=0.625,P0.001),焦虑气质与易激惹气质因子得分呈正相关(r=0.628,P0.001)。结论情感气质自评问卷青少年中文版具有一定的内部一致性信度及结构效度,适用于中国青少年群体情感气质的测量。     

Subjective and objective quality of life in schizophrenia

OBJECTIVE: Quality of life (QOL) is considered an important outcome in the treatment of schizophrenia, but the determinants of QOL are poorly understood in this population. Furthermore, previous studies have relied on combined measures of subjective QOL (usually defined as life satisfaction) and objective QOL (usually defined as participation in activities and relationships). We examined separately the clinical, functional, and cognitive predictors of subjective and objective QOL in outpatients with schizophrenia. We hypothesized that better subjective QOL would be associated with less severe negative and depressive symptoms, better objective QOL, and greater everyday functioning capacity, and that better objective QOL would be associated with less severe negative and depressive symptoms, better cognitive performance, and greater functional capacity. METHOD: Participants included 88 outpatients with schizophrenia or schizoaffective disorder who completed a comprehensive series of assessments, including measures of positive, negative, and depressive symptoms; performance-based functional skills; a neuropsychological battery; and an interview measure of subjective and objective QOL. RESULTS: In the context of multiple predictor variables, more severe depressive symptoms and better neuropsychological functioning were independent predictors of worse subjective QOL. More severe negative symptoms predicted worse objective QOL. Functional capacity variables were not associated with subjective or objective QOL. CONCLUSION: Treatments to improve QOL in schizophrenia should focus on negative symptoms and depressive symptoms.     

Applying clinical staging to young people who present for mental health care

Aim: The study aims to apply clinical staging to young people who present for mental health care; to describe the demographic features, patterns of psychological symptoms, disability correlates and clinical stages of those young people; and to report longitudinal estimates of progression from less to more severe stages. Methods: The study uses cross‐sectional and longitudinal assessments of young people managed in specialized youth clinics. On the basis of clinical records, subjects were assigned to a specific clinical ‘stage’ (i.e. ‘help‐seeking’, ‘attenuated syndrome’, ‘discrete disorder’ or ‘persistent or recurrent illness’). Results: Young people (n = 209, mean age = 19.9 years (range = 12–30 years), 48% female) were selected from a broader cohort of n = 1483 subjects. Ten percent were assigned to the earliest ‘help‐seeking’ stage, 54% to the ‘attenuated syndrome’ stage, 25% to the ‘discrete disorder’ stage and 11% to the later ‘persistent or recurrent illness’ stage. The interrater reliability of independent ratings at baseline was acceptable (κ = 0.71). Subjects assigned to the ‘attenuated syndrome’ stage reported symptom and disability scores that were similar to those assigned to later stages. Longitudinally (median = 48 weeks), transition to later clinical stages were 11% of the ‘help‐seeking’, 19% of the ‘attenuated syndrome’ and 33% of the ‘discrete disorder’ groups. Conclusion: Among young people presenting for mental health care, most are clinically staged as having ‘attenuated syndromes’. Despite access to specialized treatment, a significant number progress to more severe or persistent disorders.     

Disease severity affects quality of life of hereditary spastic paraplegia patients

Background and purpose: Hereditary spastic paraplegia (HSP) causes progressive gait disturbance because of degeneration of the corticospinal tract. To assess its impact on Health‐Related Quality of Life (HRQoL), we analyzed the correlation of HRQoL with disease severity and clinical symptoms in HSP. Methods: HRQoL was assessed by the Short‐Form 36 (SF‐36) Mental and Physical Component summary scores (MCS and PCS) in 143 German patients with HSP. Disease severity was assessed by the Spastic Paraplegia Rating Scale (SPRS) and landmarks of walking ability. Patients with ‘pure’ or ‘complicated’ HSP were compared. Results: Higher SPRS scores indicating higher disease severity correlated significantly with lower PCS (r = ?0.63; P < 0.0005) and MCS (r = ?0.38; P < 0.0005) scores. MCS and PCS were reduced in patients with ‘complicated’ forms compared to ‘pure’ HSP and with decreasing walking ability. Conclusion: HRQoL is substantially impaired in patients with HSP and decreases with disease severity and the presence of ‘complicating’ symptoms. Patients are most affected by the physical restraints of their disease, but mental health is impaired as well. HRQoL is a valid parameter in HSP that should be considered in upcoming therapeutical trials.