High Prevalence of Psychological Comorbidities and Functional Neurological Symptoms in Women With Urinary Retention.

PURPOSE: Chronic idiopathic urinary retention (CIUR) in young women is poorly understood and a probable etiology is established only in around 40%, most commonly a primary disorder of external urethral sphincter relaxation, sometimes referred to as Fowler's syndrome. A high prevalence of psychological and functional comorbidities is reported, however these have been poorly characterized. MATERIALS AND METHODS: Women consecutively referred for the assessment and management of CIUR were evaluated cross-sectionally for 13 psychological/behavioral domains using a structured clinical interview: depression, anxiety, post-traumatic stress disorder (PTSD), other psychiatric history, functional neurological disorder, other functional syndromes, childhood and adult trauma, personality disorder, and self-harm (ever/current). RESULTS: A total of 91 women (mean age [SD]: 34 [11] years) were evaluated. Women with Fowler's syndrome (n = 69) were younger (mean age [SD]: 32 [9] vs 40 [13] years) than women without Fowler's syndrome and reported shorter mean duration of urinary symptoms (mean [SD]: 5 [6] vs 10 [9]). A high prevalence of psychiatric and psychological comorbidities was reported (97%) including current depression (77%), current anxiety (78%), and PTSD (32%). A high prevalence of functional neurological disorder (56%) and other functional symptoms (65%) was also reported. Self-harm was reported in (14%) and personality disorder in 16%. Childhood trauma was reported in 35% of women. CONCLUSIONS: Young women with CIUR report a high burden of psychiatric disorders, affective symptoms, trauma, PTSD, self-harm, and functional neurological disorder, particularly in those with Fowler's syndrome. These factors can undermine the engagement with health care professionals and affect management and should therefore be addressed during the urological assessment.

Can we predict and manage persistent storage and voiding LUTS following bladder outflow resistance reduction surgery in men? ICI-RS 2023.

AIMS: Lower urinary tract symptoms (LUTS) persist in up to 50% of patients after bladder outflow resistance reduction surgery (BORRS) in men. Our think tank aims to address the predictive factors for persistent LUTS after BORRS and to propose the recommendations for future research to enable improved better patient counseling and selection by more accurate prediction of treatment outcome. METHODS: A think tank of ICI-RS gathered in 2023, Bristol, UK, to discuss the pre and postsurgical clinical and urodynamic evaluation of men undergoing BORRS and whether it is possible to predict which men will have persistent LUTS after BORRS. RESULTS: Our think tank agrees that due to the multifactorial, and still not fully understood, etiology of male LUTS it is not possible to precisely predict in many men who will have persistent LUTS after BORRS. However, severe storage symptoms (overactive bladder, OAB) in association with low volume and high amplitude detrusor overactivity and low bladder capacity in preoperative urodynamics, increase the likelihood of persistent OAB/storage symptoms after BORRS. Furthermore, patients who are clearly obstructed and have good bladder contractility on preoperative pressure flow studies do better postoperatively compared to their counterparts. However, the benefit of pressure flow studies is decreased in patients who do not acceptably void during the study. Poor voiding after BORRS may occur due to persistent obstruction or detrusor underactivity. CONCLUSION: Future research is needed to increase our understanding of why male LUTS persist after surgery, and to enable better patient selection and more precise patient counseling before BORRS.

Can we increase the value of data from bladder diaries? International Consultation on Incontinence-Research Society 2023.

BACKGROUND: Bladder diaries represent a fundamental component in the assessment of patients presenting with lower urinary tract symptoms. Nevertheless, their importance often remains underappreciated and undervalued within clinical practice. This paper aims to conduct a comprehensive review of the existing literature concerning the utility of bladder diaries, underscore the criticality of their precision, elucidate the factors contributing to noncompliance with bladder diary completion, and investigate potential strategies for enhancing patient compliance. MATERIALS AND METHODS: A review of the English-language scientific literature available in the domains of Medline, Embase, Emcare, Midirs, and Cinahl was conducted. This was supplemented by discussion at the International Consultation on Incontinence Research Society Proposal session to define knowledge and identify gaps in knowledge surrounding the utility of bladder diaries. The existing evidence and outcome of the relevant discussion held in the meeting are presented. RESULTS: Bladder diaries (BD) serve to characterize the nature and severity of storage lower urinary tract symptoms (LUTS) and provide an objective record of an individual's urination patterns. They aid in the refinement and customization of treatment strategies based on the clinical responses documented in the diary, optimizing treatment outcomes. Notably, both BD and urodynamic studies (UDS) play complementary yet distinct roles in LUTS evaluation. BD offers a more comprehensive and accessible approach to assessing specific storage LUTS, particularly due to their affordability and widespread availability, especially in resource-limited settings. Nevertheless, the absence of a standardized BD format across global healthcare systems presents a significant challenge. Despite being recognized as reliable, noninvasive, validated, and cost-effective tools for evaluating patients with LUTS, the implementation and completion of BD have proven to be complex. The introduction of automated bladder diaries heralds an era of precise, real-time data collection, potentially enhancing the patient-clinician relationship. Completion of bladder diaries depends on an array of individual, social, and healthcare-specific factors. Compliance with bladder diary completion could be enhanced with clear instructions, patient education, regular follow-ups and positive re-enforcement. This study has identified four critical areas for future research: Addressing healthcare disparities between affluent and developing nations, enhancing the current functionality and effectiveness of bladder diaries, exploring the feasibility of incorporating bladder diaries into the treatment and education process and improving the quality and functionality of existing bladder diaries. CONCLUSION: Bladder diaries play a pivotal role in the evaluation and management of patients with LUTS, providing a holistic perspective. When their complete potential is harnessed, they have the capacity to revolutionize the paradigm of LUTS management, ushering in a patient-centered era of care.

Could a better understanding of the underlying pathophysiologies lead to more informed treatment choices in patients with lower urinary tract dysfunction due to an acontractile or underactive detrusor? ICI-RS 2023.

INTRODUCTION: The underlying pathophysiology behind a diagnosis of acontractile or underactive detrusor at invasive urodynamics is very heterogeneous. Lack of etiological classification currently limits the possibility of stratifying therapy. METHODS: This subject was discussed at a think-tank on the subject at the International Consultation on Incontinence-Research Society held in Bristol, June 2023. This manuscript is a result of those deliberations and the subsequent discussions of the think-tank. RESULTS: There are challenges in defining abnormalities of detrusor contraction with resultant implications for available evidence. Pathology at any level of the neuromuscular pathway can impair or prevent a detrusor voiding contraction. Attempts have been made to identify clinical markers that might predict an underactive detrusor but strong supporting evidence is lacking. Hence, a holistic approach to phenotyping requires specialized neuro-imaging as well as physiological investigations. Several general measures can help individuals with an abnormal detrusor contraction. The search for a molecule to enhance the detrusor voiding contraction remains elusive but there are promising new candidates. Neuromodulation can help select individuals but data is not well stratified by underlying etiology. Manipulation of central neurotransmitters might offer an alternate therapeutic option. CONCLUSIONS: A better understanding of the underlying pathophysiologies behind an abnormality of the detrusor voiding contraction is needed for improving management. Towards this goal, the think-tank proposes a classification of the underactive detrusor that might help in selecting and reporting more well-defined patient cohorts.

Can we define the optimal postvoid residual volume at which intermittent catheterization should be recommended, and are there other measures that could guide an intermittent catheterization protocol: ICI-RS 2023.

AIMS: The postvoid residual (PVR) volume of urine in the bladder is widely used in clinical practice as a guide to initiate treatment, including clean-intermittent self-catheterization (CISC). It is often believed that an elevated PVR causes complications such as recurrent urinary tract infections (UTI) and renal failure. However, evidence for this is limited and identifying alternative measures to guide treatment decisions may optimize patient care. At the International Consultation on Incontinence Research Society (ICI-RS) meeting in 2023 a Think Tank addressed the question of whether we can define the optimal PVR at which CISC should be recommended, and whether there are other measures that could guide a CISC protocol. METHODS: The Think Tank conducted a literature review and expert consensus meeting focusing on current limitations in defining and measuring PVR, and highlighting other measures that may optimize selection for, and persistence with, CISC. RESULTS: There is no consensus on the threshold value of PVR that is considered "elevated" or "significant." There is a lack of standardization on terminology, and the normal range of PVR in different populations of different ages remains to be well-studied. The measurement of PVR is influenced by several factors, including intraindividual variation, timing and method of measurement. Furthermore, the evidence linking an elevated PVR with complications such as UTI and renal failure is mixed. Other measures, such as bladder voiding efficiency or urodynamic parameters, may be better at predicting such complications, and therefore may be more relevant at guiding a CISC protocol. CONCLUSIONS: There is a lack of high quality evidence to support PVR as a predictor for complications of UTI or renal failure. Threshold values for normal PVR in different populations are unknow, and so threshold values for "elevated" or "significant" PVR cannot be determined. Other factors, such as urodynamic findings, may be better at predicting complications and therefore guiding management decisions, and this remains to be studied. Areas for further research are proposed.

Systematic review exploring the relationship between sexual abuse and lower urinary tract symptoms.

INTRODUCTION AND HYPOTHESIS: Patients presenting with lower urinary tract symptoms (LUTS) may report a history of sexual abuse (SA), and survivors of SA may report LUTS; however, the nature of the relationship is poorly understood. The aim of this review is to systematically evaluate studies that explore LUT dysfunction in survivors of SA. METHODS: A systematic literature search of six databases, Cochrane Database of Systematic Reviews, MEDLINE, EMBASE, CINAHL, AMED, and PsycINFO, was performed. The last search date was June 2021 (PROSPERO CRD42019122080). Studies reporting the prevalence and symptoms of LUTS in patients who have experienced SA were included. The literature was appraised according to the PRISMA statement. The quality of the studies was assessed. RESULTS: Out of 272 papers retrieved, 18 publications met the inclusion criteria: studies exploring LUTS in SA survivors (n=2), SA in patients attending clinics for their LUTs (n=8), and cross-sectional studies (n=8). SA prevalence ranged between 1.3% and 49.6%. A history of SA was associated with psychosocial stressors, depression, and anxiety. LUTS included urinary storage symptoms, voiding difficulties, voluntary holding of urine and urinary tract infections. Most studies were of moderate quality. Assessment of SA and LUTS lacked standardisation. CONCLUSIONS: The review highlights the need for a holistic assessment of patients presenting with LUTS. Although most of the studies were rated as being of 'moderate' quality, the evidence suggests the need to provide a "safe space" in clinic for patients to share sensitive information about trauma. Any such disclosure should be followed up with further assessment.

Should we routinely assess psychological morbidities in idiopathic lower urinary tract dysfunction: ICI-RS 2019?

AIMS: Psychological morbidities play a major role in idiopathic lower urinary tract dysfunction (iLUTD). The aim of the Think Tank (TT) was to discuss the relevance of psychological morbidities in idiopathic LUTD over the life span, including overactive bladder (OAB) or dysfunctional voiding (DV) and methods of assessment. METHODS: The paper is based on a selective review of the literature and in-depth discussions, leading to research recommendations regarding the assessment of psychological morbidities in iLUTD on children and adults held during the TT of the International Consultation on Incontinence Research Society in 2019. RESULTS: Psychological comorbidities affect the health behaviors and treatment outcomes in patients with iLUTD. Both clinically relevant comorbid mental disorders, as well as subclinical psychological symptoms have a major impact and negatively influence incontinence treatment. Research is needed to elucidate mechanisms underlying iLUTD and psychological comorbidities. Clinical studies are needed to determine how perception generation and cognition impacts on the relationship of urinary perceptions, symptoms, and objective urodynamic function. Due to high psychological comorbidity rates, screening with validated, generic questionnaires for emotional and behavioral disorders in children with nocturnal enuresis, daytime urinary incontinence, and fecal incontinence is recommended. Brief screening is recommended for all adults with iLUTD, especially with OAB and DV, who are refractory to treatment. CONCLUSIONS: Due to the high rate and relevance in clinical practice, screening for psychological comorbidities is recommended for all age groups. The research recommendations of this TT may be followed to improve the assessment of psychological morbidities in iLUTD.

Botulinum toxin A for refractory OAB and idiopathic urinary retention: Can phenotyping improve outcome for patients: ICI-RS 2019?

AIMS: Botulinum toxin A (BTX-A) is a well-established treatment for refractory idiopathic overactive bladder (OAB). It has also been used with short-term success in treating idiopathic urinary retention. However, efficacy and complication rates are variable and predicting those likely to benefit most from treatment would enable personalization of therapy and optimization of outcomes. At the International Consultation on Incontinence-Research Society (ICI-RS) meeting in 2019 a Think Tank addressed the question of how we can improve the way we phenotype patients undergoing BTX-A treatment. METHODS: The Think Tank conducted a literature review and expert consensus meeting focussing on how advances in basic science research of the mechanism of action of BTX-A, as well as assessment of psychological comorbidity, can be translated into clinical practice to improve patient selection for therapy. RESULTS: Idiopathic OAB and idiopathic urinary retention are heterogenous conditions encompassing several phenotypes with multiple potential pathophysiological mechanisms. Animal models have demonstrated a central nervous system mechanism of action of intravesically injected BTX-A and this has been confirmed in human functional MRI studies, but whether this tool can be used to predict outcome from treatment remains to be determined. Phenotyping based on psychological comorbidity using validated screening tools should be studied as a way to potentially optimize patient selection for therapy. CONCLUSIONS: Advances in basic science research into the mechanism of action of BTX-A have improved our understanding of the pathophysiology of OAB and may lead to novel ways to phenotype patients. Psychological assessment is another way in which phenotyping may be improved. Areas for further research are proposed.

Psychological comorbidities and functional neurological disorders in women with idiopathic urinary retention: International Consultation on Incontinence Research Society (ICI-RS) 2019.

AIMS: Chronic urinary retention occurring in young women is poorly understood and a cause may not be found in a majority of cases. Different psychological comorbidities and functional neurological symptom disorders (FNDs) have been reported; however, these have been poorly explored. METHODS: At the International Consultation on Incontinence Research Society meeting in 2019, a panel of clinicians generated a proposal to explore the relationship between psychological comorbidities, FNDs, and urinary retention in women with chronic idiopathic urinary retention. RESULTS: Psychological comorbidities such as depression and anxiety, and FNDs such as leg weakness and loss of consciousness, have been reported in women with idiopathic urinary retention. Individuals react differently to physical and emotional stressors, and experimental models have demonstrated a relationship between the stress response and developing urinary retention. Trauma, particularly sexual trauma, may be a shared risk factor for developing psychological comorbidities and urinary retention. Children with voiding postponement often suffer from psychological comorbidities and behavioral disturbances; however, there is no evidence to suggest that this progresses to urinary retention in adulthood. "Psychogenic urinary retention" has been described in the urology and psychiatry literature in the past, and anecdotal cases of successful voiding following psychotherapy have been reported, though the true pathophysiology of this entity is uncertain. CONCLUSION: Psychological and functional disorder comorbidities are reported in women with chronic urinary retention. The nature of the association between urinary retention and functional neurological disorder comorbidities needs to be further explored in terms of a disorder of bladder-brain interaction.

Are psychological comorbidities important in the aetiology of lower urinary tract dysfunction-ICI-RS 2018?

AIMS: To review studies on the comorbid psychological symptoms and disorders in patients with lower urinary tract disorders (LUTD) over the life-span, to analyse how they contribute toward the aetiology of LUTD and to discuss optimal service implementation. MATERIALS AND METHODS: A review of relevant literature was conducted and presented during the ICI-RS meeting in 2018. Open questions and future directions were discussed. RESULTS: On the basis of current research, there is overwhelming evidence in all age groups that psychological comorbidities are more common in patients with LUTD. Vice versa, patients with psychiatric disorders have higher rates of LUTD. The types of LUTDs and psychiatric disorders are heterogeneous. Complex aetiological models best explain specific associations of comorbidity. Irrespective of aetiology, it is advisable to address both urological and psychological issues in patients of all age groups with LUTD. CONCLUSIONS: Psychological symptoms and disorders play a decisive role in the development of LUTD in all age groups and need to be considered in the assessment and treatment of LUTD.

Marriage in epilepsy: The impact of the question in knowledge, attitude, and practice surveys.

BACKGROUND: Knowledge, attitudes, and practice (KAP) questionnaire-based surveys have captured negative attitudes towards marriage involving people with epilepsy (PWE). The attitudes may vary according to the nature of the question posed, whether personal or generic, in addition to many other covariates. METHODS: We carried out meta-proportion and -regression analyses of epilepsy-related KAP surveys published between 1970 and 2016 in the medical literature analysis retrieval system online (MEDLINE) database. RESULTS: The pooled estimate of the proportion of those responding positively to the marriage question was 0.45 (95% confidence interval (95%CI): 0.35 to 0.54; I2res = 99.89%). The pooled proportion of positive responders to a personal question (0.40; 95%CI: 0.35 to 0.46) was significantly lower than those responding positively to a generic question (0.64; 95%CI: 0.57 to 0.70) (P = 0.001). When modeled individually in regression analyses, only the continent of origin of the survey (P = 0.001; tau2: 0.06; I2res: 99.8%; adjusted R2: 11.4%) and subject population type (P = 0.02; tau2: 0.07; I2res: 99.9%; adjusted R2: 4.2%) were associated with the pooled estimate of positive responders to the question on marriage. CONCLUSIONS: Personal questions probing the possibility of marriage of self or family members to someone with epilepsy bring about negative attitudes more often than generic questions inquiring the marriage-worthiness of PWE.

Rasch analysis of the carers quality of life questionnaire for parkinsonism.

OBJECTIVE: To assess the psychometric properties of the Carers Quality of Life Questionnaire for Parkinsonism using a Rasch modeling approach and determine the optimal cut-off score. METHODS: We performed a Rasch analysis of the survey answers of 430 carers of patients with atypical parkinsonism. RESULTS: All of the scale items demonstrated acceptable goodness of fit to the Rasch model. The scale was unidimensional and no notable differential item functioning was detected in the items regarding age and disease type. Rating categories were functioning adequately in all scale items. The scale had high reliability (.95) and construct validity and a high degree of precision, distinguishing between 5 distinct groups of carers with different levels of quality of life. A cut-off score of 62 was found to have the optimal screening accuracy based on Hospital Anxiety and Depression Scale subscores. CONCLUSION: The results suggest that the Carers Quality of Life Questionnaire for Parkinsonism is a useful scale to assess carers' quality of life and allows analyses requiring interval scaling of variables. © 2016 International Parkinson and Movement Disorder Society.

The dilemma of arranged marriages in people with epilepsy. An expert group appraisal.

INTRODUCTION: Matrimony remains a challenging psychosocial problem confronting people with epilepsy (PWE). People with epilepsy are less likely to marry; however, their marital prospects are most seriously compromised in arranged marriages. AIMS: The aim of this study was to document marital prospects and outcomes in PWE going through arranged marriage and to propose optimal practices for counseling PWE contemplating arranged marriage. METHODS: A MEDLINE search and literature review were conducted, followed by a cross-disciplinary meeting of experts to generate consensus. RESULTS: People with epilepsy experience high levels of felt and enacted stigma in arranged marriages, but the repercussions are heavily biased against women. Hiding epilepsy is common during marital negotiations but may be associated with poor medication adherence, reduced physician visits, and poor marital outcome. Although divorce rates are generally insubstantial in PWE, divorce rates appear to be higher in PWE undergoing arranged marriages. In these marriages, hiding epilepsy during marital negotiations is a risk factor for divorce. CONCLUSIONS: In communities in which arranged marriages are common, physicians caring for PWE are best-equipped to counsel them about their marital prospects. Marital plans and aspirations should be discussed with the family of the person with epilepsy in a timely and proactive manner. The benefits of disclosing epilepsy during marital negotiations should be underscored.

Development and validation of a carers quality-of-life questionnaire for parkinsonism (PQoL Carers).

PURPOSE: Atypical parkinsonism (AP) has a considerable impact on the lives not only of patients but also of their carers. The aim of this study was to develop an instrument for assessing the quality of life (QoL) of carers of patients with AP. METHODS: A 40-item pool was generated from in-depth interviews with carers of patients with AP, a thorough review of the existing literature and consultation with movement disorder experts. Item refinement and reduction was performed using the results of pilot testing and a survey in 282 carers of multiple system atrophy (MSA) patients and 226 carers of progressive supranuclear palsy (PSP) patients. A validation study, with responses of 243 carers of MSA and 187 carers of PSP patients, was undertaken to evaluate the psychometric properties of the final 26-item scale. RESULTS: The validation study results suggest that the scale is unidimensional and has high internal consistency (Cronbach's α = 0.96). The correlations of scale scores with patients' health status and QoL measures, such as PDQ-39 summary score and EQ-5D index (Spearman's ρ = 0.56 and -0.31, respectively, P < 0.001), as well as carers' measures, such as Caregiver Burden Inventory (CBI) total and EQ-5D index (Spearman's ρ = 0.85 and -0.39, respectively, P < 0.001), document the convergent and concurrent validity of the scale. ANOVA results support the discriminant validity of the scale, as evidenced by its capacity to differentiate between carers with varying levels of self-reported health. CONCLUSIONS: The 26-item Parkinsonism Carers QoL (PQoL Carer) is a concise instrument with adequate psychometric qualities that can be used for clinical and research purposes.

The beliefs among patients with epilepsy in Saudi Arabia about the causes and treatment of epilepsy and other aspects.

PURPOSE: The current survey sought to identify the religious and cultural beliefs about the causes and treatment of epilepsy in people with epilepsy from Saudi Arabia and a number of other aspects relating to the possibility of cure, coping with the condition, and public awareness. METHODS: Study instruments were developed on the basis of the literature, a focus group of people with epilepsy, and feedback from people in the field with local knowledge. These were then piloted. A survey was then carried out among a total of 110 adults with epilepsy. Participants were asked to complete questionnaires inquiring into their beliefs about the causes and range of treatments used for epilepsy. Each participant was allowed to choose more than one cause and more than one treatment method. The questionnaires were administered face to face by a clinical psychologist (HAA) to improve the quality of the responses. RESULTS: We found that most adults with epilepsy in Saudi Arabia believe that epilepsy is a condition with multifactorial causation and for which more than one treatment method should be applied. A test from God was the most commonly ascribed cause (83% as well as 40% who believed that some cases of the illness were a punishment from God). The belief in the concept of God's will helped many in the cohort to accept their illness as part of their destiny. Ninety-six percent of the patients believed that there were also medical causes (such as an illness, brain insult, inflammation, heredity, contagion), and a similar proportion believed that there were also religious causes. Smaller proportions believed epilepsy could be due to cultural (78%) or psychosocial causes (64%). Thirty-four percent of people believed that there could be sometimes no cause, but only 2% thought that epilepsy never had any identifiable cause. Most patients did not believe that one treatment alone would help. Ninety-three percent of patients believed in medical treatment, 93% in religious treatment, and 64% in traditional treatments, and 7% believed in changing lifestyle (eating balanced food and positive thinking). Seventy-eight percent of the sample believed that their epilepsy was a curable illness. Ninety-six percent believed that faith and practicing religious rituals helped in coping with epilepsy, and 92% believed that family support helped in coping with epilepsy. Nine percent of patients had stopped their medication for religious reasons or because of a sense of shame, and 7% had at one time been forced by their family to stop their medication. Ninety-two percent of the sample reported having enough family support. Ninety-five percent believed that Saudi society needs more awareness to understand epilepsy. CONCLUSION: In Saudi Arabia, religious and cultural beliefs about the causes and treatment of epilepsy exist alongside medical beliefs. The holding of religious beliefs, the practicing of religious rituals, and the presence of family support were found to be of great importance in coping with epilepsy, and their role needs to be fully appreciated in the medical management of the condition.

Why is it difficult to predict language impairment and outcome in patients with aphasia after stroke?

One of the most devastating consequences of stroke is aphasia. Communication problems after stroke can severely impair the patient's quality of life and make even simple everyday tasks challenging. Despite intense research in the field of aphasiology, the type of language impairment has not yet been localized and correlated with brain damage, making it difficult to predict the language outcome for stroke patients with aphasia. Our primary objective is to present the available evidence that highlights the difficulties of predicting language impairment after stroke. The different levels of complexity involved in predicting the lesion site from language impairment and ultimately predicting the long-term outcome in stroke patients with aphasia were explored. Future directions and potential implications for research and clinical practice are highlighted.

The use of the NDDI-E in Arabic to identify symptoms of depression of moderate or greater severity in people with epilepsy.

AIM: The aims of the current study were to translate and to validate the NDDI-E to the Arabic language to be used as a screening instrument to identify moderately severe symptoms of depression in people with epilepsy. METHODS: The English version of the NDDI-E was translated to Arabic and back translated to English by two independent translators. A total of 51 patients, aged 18-56years old, with a diagnosis of epilepsy, completed the Arabic versions of the Beck Depression Inventory (BDI-II) and the NDDI-E. Patients with BDI scores >20 were considered to be suffering from moderately severe depressive symptoms. Cutoff scores, sensitivity, specificity, and positive and negative predictive values of the NDDI-E to identify symptomatic patients on the BDI were calculated. RESULTS: A sensitivity of 93.33% and a specificity of 94.44% were found with NDDI-E total scores >15. The positive predictive value was 87.5%, and the negative predictive value was 97.14%. Spearman's rank correlation between the BDI and the NDDI-E was high (r=.78, p=0.000, N=51). Internal consistency was at 0.926 (Cronbach's alpha). CONCLUSION: The Arabic version of the NDDI-E appears to be a reliable and sensitive instrument in the identification of moderately severe or severe depressive symptoms in people with epilepsy, and it can be used with all Arabic-speaking patients.

From translation to version management: a history and review of methods for the cultural adaptation of the EuroQol five-dimensional questionnaire.

The EuroQol five-dimensional (EQ-5D) questionnaire is used worldwide as a patient-reported outcome (PRO) instrument for the measurement and valuation of health. Several variants of the instrument now exist, including versions with three and five levels of severity and one for respondents aged 8 to 14 years. From the outset, a demand for new language versions of the EQ-5D questionnaire meant that there was a need to implement standardized procedures, which ensured that such versions were produced following international recommendations for the cultural adaptation of patient-reported outcomes. The availability of new variants and formats of the instrument, such as telephone-administered or electronic formats, complicated the task of providing and controlling the quality of cultural adaptations. Although cultural adaptations of the instrument are widely used, the procedures currently used to produce them have not been widely disseminated. The present article therefore describes the evolution of the production of other language versions of the instrument from the earliest days of simultaneous production and translation of the EQ-5D questionnaire to the more recent, broader-based strategy of version management. We describe current adaptation procedures and innovations within those procedures. We also describe how version management is organized within the EuroQol Group, review aspects related to quality control, and provide an overview of the number of currently available language versions for each variant of the EQ-5D questionnaire: three-level, five-level, and youth versions. We conclude by discussing some of the relevant issues related to cultural adaptation for frequently used instruments such as the EQ-5D questionnaire.

Health-related quality of life in Gilles de la Tourette syndrome: a decade of research.

Gilles de la Tourette syndrome (GTS) is a neurodevelopmental condition characterised by multiple motor and phonic tics and associated behavioural problems, carrying a significant burden on patients' lives. Although the term health related-quality of life (HR-QOL) has only been used in recent years, several studies have long addressed the impact of GTS on physical, psychological and social aspects of wellbeing of both children and adults with GTS. We set out to answer the question "Is HR-QOL affected by GTS and, if so, in what domains?" by conducting a systematic literature review of published original studies addressing HR-QOL in both children and adult patients with GTS. This review focuses on the current evidence on the impact of GTS on patients' lives, mainly informed by studies using generic functional impairment and HR-QOL measures from the last decade, and expands on the new opportunities introduced by the recently developed GTS-specific HR-QOL scales (GTS-QOL and GTS-QOL-C&A). Analysis of the first decade of studies specifically addressing HR-QOL in GTS suggests that co-morbid conditions are key factors in determining HR-QOL in young patients, whilst the picture is more complex in adults with GTS. These findings offer some general directions for both current clinical practice and future research.