A retrospective analysis of the ethnicity of individuals referred to a tertiary neuropsychology service in the United Kingdom.

Objective: Ethnic minorities comprise approximately 18% of the UK population and are at high risk of developing neurological conditions. Despite this, there is little information regarding their access to neuropsychology services. This study evaluated whether ethnic minorities were proportionally represented in a tertiary neuropsychology department in the UK in accordance with census data for the region. We also aimed to highlight which ethnic groups were over- and underrepresented. Method: Anonymised demographic data of 3429 outpatient and 3304 inpatient referrals to an adult UK neuropsychology department was collected. These data were compared to the 2021 UK census data for the region. Results: Ethnicities in both the outpatient referrals (χ2(15) = 24066.55, p < .001) and inpatient referrals (χ2(15) = 35940924.75, p < .001) are significantly different from the Census. All ethnic minorities were underrepresented in adult neuropsychology referral data for both outpatient settings (-0.06% to -4.66%) and inpatient settings (-0.01% to -4.99%). Pakistani individuals were the most underrepresented across all settings, followed by individuals from an African background. Conversely, individuals of White British ethnicity were overrepresented in both outpatient settings (+10.73%) and inpatient settings (+15.68%). Conclusions: The UK ethnic minorities were not referred to a neuropsychology service relative to regional population prevalence. This contradicts their increased susceptibility for risk of neurological conditions but may also indicate the inaccessibility of neuroscience services for ethnic minorities. Replicating this study across different regions and gathering data on prevalence rates for different neurological conditions across ethnicity is recommended. Additionally, improving accessibility of neuropsychology services for British ethnic minorities should be prioritised.

Developing behavioural activation for people with acquired brain injury: a qualitative interpretive description study of barriers and facilitators to activity engagement.

BACKGROUND: Acquired brain injuries (ABI) from stroke, head injury, or resected brain tumours are associated with poor emotional wellbeing and heightened risk of mood disorder. Common sequalae of ABI, such as poor attention and memory, can create barriers to the efficacy of cognitively demanding mood interventions, such as Cognitive Behavioural Therapy (CBT). Behavioural Activation (BA), where individuals plan and engage in reinforcing activities, is a promising alternative due to lower cognitive demands. However, BA was initially developed in clinical populations without ABI where the primary barriers to activity engagement were low mood and anxious avoidance. Additionally, BA can incorporate a range of techniques (e.g., mood monitoring, activity scheduling, targeting avoidance, contingency management) and psychoeducational topics (e.g., mindfulness, managing uncertainty; social/communication skills). Exploring barriers and facilitators to adopting specific BA components in ABI is an important aim. METHODS: Semi-structured interviews were conducted with purposively selected ABI survivors (N = 16) with both low and high depressive symptoms, and family members (N = 7). Questions focused on routine and enjoyable activities, and feedback on 10 different BA techniques and associated psychoeducational topics. Transcripts were analysed using an interpretive description framework. Analysis was informed by field notes, reflexivity diaries, and peer debriefing. RESULTS: The final constructed framework, Creating Sustainable Engagement, comprises a two-tier hierarchy. Higher-level themes concerned core perspectives of BA, regardless of BA component discussed. This included identifying optimal time windows for different BA components (Right Tool at the Right Time), that BA components should, at least initially, not be burdensome or fatiguing (Perceived Effort), that emotional readiness to confront activity-mood relationships should be addressed (Emotional Impact), and that planned BA activities be consistent with individual values (Relation to Values). Lower-level themes concerned specific BA components: Of these, activity scheduling, procedures targeting avoidance, managing uncertainty and social/communication skills were generally well-received, while mood monitoring, contingency management, and mindfulness had mixed feedback. CONCLUSIONS: BA is a widely scalable intervention that can be adapted for ABI. This study provides a novel framework on implementing a range of BA components in ABI and adds to the limited evidence on which components may be particularly suitable.

Neuropsychology assessment and outcomes in adult mucopolysaccharidosis - A systematic review as the first step to service development in a large tertiary Lysosomal Storage Disorders centre.

A systematic review of Randomised Controlled Trials in adult mucopolysaccharidoses (MPSs) was conducted to inform neuropsychology service development at a large tertiary Lysosomal Storage Diseases centre. Studies including psychological endpoints for cognition, mood, and quality of life were reviewed. Forty-eight studies met the inclusion criteria for full text review. Of the 48 studies, 44% (21/48) included adult participants, while psychological endpoints were used in 52% (25/48) for cognition, 11% (5/48) for mood, and 69% (33/48) for quality of life. Five studies included both adult participants and relevant psychological endpoints. Risk of bias ratings were 'high' for two studies, while two studies received a rating of 'some concerns', and the last study a 'low' risk of bias rating. The evidence base for psychological outcomes in adult MPS disorders is limited and insufficient for guiding neuropsychology service development. Data on the psychosocial effects of MPS across the lifespan will be crucial for planning service development and supporting the neuropsychological needs of adult patients and their families.

Psychological treatments for depression and anxiety in dementia and mild cognitive impairment.

BACKGROUND: Experiencing anxiety and depression is very common in people living with dementia and mild cognitive impairment (MCI). There is uncertainty about the best treatment approach. Drug treatments may be ineffective and associated with adverse effects. Guidelines recommend psychological treatments. In this updated systematic review, we investigated the effectiveness of different psychological treatment approaches. OBJECTIVES: Primary objective To assess the clinical effectiveness of psychological interventions in reducing depression and anxiety in people with dementia or MCI. Secondary objectives To determine whether psychological interventions improve individuals' quality of life, cognition, activities of daily living (ADL), and reduce behavioural and psychological symptoms of dementia, and whether they improve caregiver quality of life or reduce caregiver burden. SEARCH METHODS: We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's register, MEDLINE, Embase, four other databases, and three trials registers on 18 February 2021. SELECTION CRITERIA: We included randomised controlled trials (RCTs) that compared a psychological intervention for depression or anxiety with treatment as usual (TAU) or another control intervention in people with dementia or MCI. DATA COLLECTION AND ANALYSIS: A minimum of two authors worked independently to select trials, extract data, and assess studies for risk of bias. We classified the included psychological interventions as cognitive behavioural therapies (cognitive behavioural therapy (CBT), behavioural activation (BA), problem-solving therapy (PST)); 'third-wave' therapies (such as mindfulness-based cognitive therapy (MBCT)); supportive and counselling therapies; and interpersonal therapies. We compared each class of intervention with control. We expressed treatment effects as standardised mean differences or risk ratios. Where possible, we pooled data using a fixed-effects model. We used GRADE methods to assess the certainty of the evidence behind each result. MAIN RESULTS: We included 29 studies with 2599 participants. They were all published between 1997 and 2020. There were 15 trials of cognitive behavioural therapies (4 CBT, 8 BA, 3 PST), 11 trials of supportive and counselling therapies, three trials of MBCT, and one of interpersonal therapy. The comparison groups received either usual care, attention-control education, or enhanced usual care incorporating an active control condition that was not a specific psychological treatment. There were 24 trials of people with a diagnosis of dementia, and five trials of people with MCI. Most studies were conducted in community settings. We considered none of the studies to be at low risk of bias in all domains.  Cognitive behavioural therapies (CBT, BA, PST) Cognitive behavioural therapies are probably slightly better than treatment as usual or active control conditions for reducing depressive symptoms (standardised mean difference (SMD) -0.23, 95% CI -0.37 to -0.10; 13 trials, 893 participants; moderate-certainty evidence). They may also increase rates of depression remission at the end of treatment (risk ratio (RR) 1.84, 95% CI 1.18 to 2.88; 2 studies, with one study contributing 2 independent comparisons, 146 participants; low-certainty evidence). We were very uncertain about the effect of cognitive behavioural therapies on anxiety at the end of treatment (SMD -0.03, 95% CI -0.36 to 0.30; 3 trials, 143 participants; very low-certainty evidence). Cognitive behavioural therapies probably improve patient quality of life (SMD 0.31, 95% CI 0.13 to 0.50; 7 trials, 459 participants; moderate-certainty evidence) and activities of daily living at end of treatment compared to treatment as usual or active control (SMD -0.25, 95% CI -0.40 to -0.09; 7 trials, 680 participants; moderate-certainty evidence). Supportive and counselling interventions Meta-analysis showed that supportive and counselling interventions may have little or no effect on depressive symptoms in people with dementia compared to usual care at end of treatment (SMD -0.05, 95% CI -0.18 to 0.07; 9 trials, 994 participants; low-certainty evidence). We were very uncertain about the effects of these treatments on anxiety, which was assessed only in one small pilot study. Other interventions There were very few data and very low-certainty evidence on MBCT and interpersonal therapy, so we were unable to draw any conclusions about the effectiveness of these interventions. AUTHORS' CONCLUSIONS: CBT-based treatments added to usual care probably slightly reduce symptoms of depression for people with dementia and MCI and may increase rates of remission of depression. There may be important effect modifiers (degree of baseline depression, cognitive diagnosis, or content of the intervention). CBT-based treatments probably also have a small positive effect on quality of life and activities of daily living. Supportive and counselling interventions may not improve symptoms of depression in people with dementia. Effects of both types of treatment on anxiety symptoms are very uncertain. We are also uncertain about the effects of other types of psychological treatments, and about persistence of effects over time. To inform clinical guidelines, future studies should assess detailed components of these interventions and their implementation in different patient populations and in different settings.

Improving the Quality of Neuropsychological Assessment Practice: The Development of a Self-Assessment Audit Tool.

OBJECTIVE: Strict competency frameworks exist for training in, and provision of, clinical neuropsychological assessment practice. However, as in all disciplines, daily clinical practice may drift from the gold standard practice without routine monitoring and audit. A simple-to-use, but thorough and evidence-based audit tool has been developed to facilitate the tracking, maintenance, and discussion of best practice over time. METHOD: A literature search and liaison with experienced neuropsychology colleagues did not unearth any pre-existing audit standards. Therefore, 39 new standards were generated, which were guided by best practice literature and clinical neuropsychology colleague discussions, to form the proposed self-assessment audit tool. Due to the diverse nature of services, both core and supplementary standards are proposed to enable the audit to be tailored to suit individual services' needs. RESULTS: During its development, the tool has so far been trialed in two U.K. National Health Service clinical services in different localities, on three occasions, with a total patient population of N = 78 in order to refine the standards and to generate practice recommendations. CONCLUSIONS: This audit tool is presented for services to self-assess their neuropsychological assessment practice. The authors plan to take this work forward with the British Psychological Society's Division of Neuropsychology as a policy document for self-assessment and peer review. Other potential developments include contributing to clinical neuropsychology training tools and refining audit standards for use more widely, such as in pediatric services, or internationally with diverse populations.

Living with Polyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) syndrome: a case study of healthcare experiences and quality of life.

AIM: Polyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) Syndrome is a rare condition with an estimated prevalence rate of 0.3 per 100,000 people. Patient perspectives on healthcare experiences and quality of life have not yet been studied in depth. This novel study aimed to explore one person's lived experience of Polyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) Syndrome, taking into consideration healthcare experiences in relation to diagnosis and treatment. METHOD: A mixed-method design was used; one participant completed a semi-structured interview and three self-report measures: Hospital Anxiety and Depression Scale; World Health Organisation Quality of Life Scale (brief); Brief Illness Perception Questionnaire. RESULTS: Three qualitative themes appeared to influence the participant's healthcare experiences and quality of life: (1) Diagnosis and treatment, (2) identity and adjustment, and (3) recovery. Diagnosis and treatment summarised the patient's journey to receiving her diagnosis and the difficulties with treatment for this condition. Identity and adjustment included pre and post-diagnosis identity, frustrations and coping strategies. Recovery included experiences of progression and decline and service provision. CONCLUSION: All Multidisciplinary Team (MDT) interventions for Polyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) Syndrome should be person-centred and focus on identity and personal strengths. Further research and service development should be completed to increase awareness and understanding of Polyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) Syndrome, promote patient wellbeing, reduce psychological distress, and facilitate engagement in neurorehabilitation.Implications for rehabilitationPolyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) Syndrome is a rare condition and incorrect diagnoses and treatment have a significant impact on patients' physical and psychological wellbeing.Patients and families require support through person-centred care and good communication and continuity of care between multiple services.Multi-disciplinary interventions which focus on identity and strengths were beneficial for the participant in this case study.Further research and education are needed to increase knowledge on patient experiences of Polyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) Syndrome and continue to improve service provision.

Everyday memory measures in multiple sclerosis: a systematic review.

Everyday memory is one of the most affected cognitive functions in multiple sclerosis (MS). Assessing everyday memory problems is crucial for monitoring the impact of memory deficits on individuals' day-to-day lives and evaluating the effectiveness of interventions that aim to improve cognitive functions. The aim of this systematic review was to identify the research literature on everyday memory measures used with people with MS, describe the types of measures used, and summarise their psychometric properties. Empirical studies of cognitive function in MS using standardised everyday memory measures were included. Online databases (MEDLINE, PsycINFO, PsycARTICLES, Embase) and Google Scholar were searched. Forty-four studies met the inclusion criteria. A total of 12 measures were identified, with varied uses and administration methods. The majority of papers did not report any psychometric properties for MS populations. The few papers that did, reported that the measures have good reliability and appear to have good face, concurrent, and ecological validity, but these need to be evaluated further. This review presents researchers and clinicians with an overview of the various everyday memory measures used in studies with people with MS, to help them choose the appropriate measure for their evaluations.

Development of a patient-centred conceptual framework of health-related quality of life in neuromyelitis optica: a qualitative study.

BACKGROUND: Neuromyelitis optica (NMO) is an auto-immune disease that can cause severe visual and mobility impairments. Research on health-related quality of life (HRQoL) in NMO is scarce, limiting knowledge on factors influencing HRQoL and support needs. AIM: This study provides the first qualitative exploration of HRQoL in NMO, conducted to provide a conceptual framework for the development of an NMO patient-reported outcome measure. METHOD: Fifteen people with NMO (aged 18-74; 11 women, 4 men) participated in semi-structured interviews; data were analysed using constant comparative analysis. RESULTS: HRQoL in NMO is a multifaceted concept incorporating highly subjective perceptions of normality and meaning. Four major themes were identified: impact of physical symptoms on daily living, utilizing support to achieve independence, expectations for life and meaningful roles in life and purpose. DISCUSSION: Themes highlighted the importance of perceived normality, and its relationship to attaining life goals comparable to peers, as underpinning evaluations of HRQoL. Many people with severe disability reported a high HRQoL, suggesting the inappropriateness of assuming a negative HRQoL on the basis of an individual's neurological impairment. CONCLUSIONS: These findings further the conceptual understanding of HRQoL in NMO, informing patient-care approaches and the development of an NMO-specific patient-reported outcome measure.

Meeting the mental health needs of people with multiple sclerosis: a qualitative study of patients and professionals.

PURPOSE: To explore perspectives and experiences of people with multiple sclerosis (MS) and health care professionals of mental health support for MS in the UK. METHOD: 24 people with MS, 13 practice nurses, 12 general practitioners (GPs) and 9 MS specialist nurses were recruited through community groups and primary care practices across North West England. Semi-structured interviews were conducted, and data analyzed thematically using constant comparative analysis within and across the data sets. The theoretical framework of candidacy was used to interrogate data. RESULTS: Four themes were identified: candidates for care, management choices, defining roles, and permeability and responsiveness. DISCUSSION: Candidacy for care, and symptom management, depended on the framing of symptoms through a social or medical model of depression. Normalizing symptoms could prevent help-seeking by patients. Reported referral behavior varied by professional group, based on perceived remit, competency and training needs. GPs were perceived by patients and other professionals as central for management of mental health needs in MS, but may not perceive this role themselves, suggesting a need for increased knowledge, training, and improved access to specialist care. Implications for Rehabilitation Anxiety and depression are common in people with MS. Management of mental health needs in people with MS relies on complex decisions made by both people with MS and health care professionals. General practitioners may play a key role in the ongoing management of mental health needs of people with MS.

If they are OK, we are OK: the experience of partners living with neuromyelitis optica.

AIM: Neuromyelitis optica (NMO) is a rare neuro-inflammatory condition characterized by acute relapses causing severe visual or physical disability. The impact on family members and their experiences have not been studied. The study aims were to explore the lived experience of partners of people with NMO and to investigate potential carer burden in this population. METHOD: A mixed-method design was used; 11 partners of people with NMO completed semi-structured interviews; 54 partners completed Zarit Burden Interview and Hospital Anxiety and Depression Scale. RESULTS: Three qualitative themes influenced partners' quality of life (QoL): role/relationship; it's all about them; and the impact of NMO. Life changed dramatically for participants after the first NMO attack, necessitating responsibility for physical, financial, social, and emotional support. As NMO symptoms improved and stabilized, freedom and QoL for spouses also improved, albeit with on-going worries regarding the impact of potential devastating future relapses. Quantitative findings showed mild/moderate carer burden (46%), mild/moderate anxiety (59%), and mild/moderate depression (24%). No partner indicated severe carer burden, anxiety, or depression. CONCLUSION: Participants regarded themselves as partners rather than carers whom require assessment and support for their emotional and health well-being. Health-care professionals need to acknowledge the important role partners play in the dynamics of the family unit, through greater discussion and inclusion. Implications for Rehabilitation NMO has a strong impact on couples, resulting in both physical caregiving needs and anxiety regarding the unpredictability of potential devastating relapses. Partners do not necessarily experience clinically significant "burden", anxiety or depression, and tools which screen for this may not capture the nature of their experiences. Health-care professionals need to acknowledge, consult, and respect the experience of partners during assessment and implementation of action plans. Partners should be individually assessed based upon the physical and emotional dependency created by NMO to improve their health and well-being.

A qualitative study of patient and professional perspectives of healthcare services for multiple sclerosis: implications for service development and policy.

Multiple sclerosis (MS) is a chronic degenerative condition, with heterogeneous symptoms, and an unpredictable prognosis. Previous literature suggests patients' experiences of healthcare are unsatisfactory. Primary care may play a key role in the management of people with MS (PwMS); however, provision of services for PwMS has received little focus in the primary care literature. This study aimed to explore perspectives and experiences of PwMS and healthcare professionals of UK healthcare services for MS. Semi-structured interviews were conducted with 24 PwMS, 13 Practice Nurses, 12 General Practitioners and 9 MS Specialist Nurses in northern England, between October 2012 and April 2014. Participants were purposively selected. Data were analysed thematically using constant comparative analysis. The theoretical framework of candidacy was used to interrogate data, with themes mapping onto the National Institute for Health and Care Excellence (NICE) guideline for MS. How PwMS interpreted symptoms as leading to candidacy for care dictated help-seeking. PwMS required additional support in identifying symptoms due to MS. Participants reported poor experiences of care including poor access to services, poor continuity of care and poor interpersonal interactions with perceptions of limited person-centredness. PwMS and professionals identified that MS-related disability and progression of symptoms required responsive care. Relational continuity enabled PwMS to feel understood, and professionals to holistically appraise symptoms and progression. In conclusion, continuity and patient-centredness of care are central to positive healthcare experiences for PwMS and professionals. Services need to be more accessible to ensure responsive and effective MS management. This study provides unique findings on the role of primary care for PwMS, and the relationship between findings and MS NICE guideline recommendations with implications for service delivery in the community.

Cognitive and psychiatric comorbidities in neuromyelitis optica.

OBJECTIVE: Our primary objective was to examine the neuropsychological and psychopathological profile of patients with neuromyelitis optica (NMO) and compare these to multiple sclerosis (MS) and healthy control (HC) groups. We also examined for relationships between cognitive and psychiatric variables and clinical factors including accumulated neurological disability and disease duration. METHODS: A neuropsychological test battery was administered along with a structured psychiatric interview and quantitative measures of mood symptoms. RESULTS: 42 NMO, 42 MS and 42 HC participants were assessed. Cognitive impairments were observed in 67% of NMO patients. The prevalence and profile of cognitive impairments and lifetime prevalence of depression was similar between NMO and MS groups. However, significantly higher rates of recurrent depression and suicidality were observed in NMO patients. Correlational analyses revealed higher levels of anxiety symptoms were associated with shorter disease duration in NMO, while higher depression symptom levels were associated with higher neurological disability and poorer cognition. CONCLUSIONS: Our results demonstrate substantial cognitive and psychiatric comorbidities in NMO patients. Similar rates of lifetime and current depression between NMO and MS appear to mask greater underlying psychiatric burden in NMO and further understandings of the course of neurobehavioural comorbidities is required to better comprehend the additional morbidity in NMO. Our data support a role for cognitive and psychiatric assessments in the comprehensive care of NMO patients.

Bladder and bowel dysfunction affect quality of life. A cross sectional study of 60 patients with aquaporin-4 antibody positive Neuromyelitis Optica spectrum disorder.

BACKGROUND: Transverse myelitis (TM) associated with Neuromyelitis Optica (NMO) can be severe and is well known to reduce mobility early in the disease. However the burden of bladder and bowel dysfunction is unknown and overlooked. We studied the frequency of bladder and bowel dysfunction and their impact on quality of life. METHODS: A cross-sectional study of 60 patients who had AQP4-IgG positive NMO associated TM was performed using the Bladder Control Scale, Lower Urinary Tract Quality of Life, Bowel Control Scale and Neurogenic Bowel Score, Short-Form-36 Health Survey and EDSS. The relationships between the variables were analysed with multiple linear regression. RESULTS: Fifty women and 10 men participated. 78% (47/60) patients reported bladder symptoms and a similar number reported bowel problems. 87% (52/60) patients reported either bladder or bowel dysfunction. 65% (39/60) developed residual symptoms after the first episode of myelitis and the remaining by the second episode. Both bladder and bowel dysfunction reduced quality of life and required modification of lifestyle in 83% (39/47) and 70% (33/47) respectively. CONCLUSION: Bladder and bowel dysfunction is very common in NMO associated myelitis developing early in the disease and significantly affects quality of life.

Experiences of UK health-care services for people with Multiple Sclerosis: a systematic narrative review.

BACKGROUND: Multiple Sclerosis (MS) is a chronic, degenerative condition with an estimated UK prevalence of 100 000. Contact with health-care services is frequent and long-term; however, little research has investigated the experiences of health care for MS in the UK. OBJECTIVE: The aim of this systematic narrative review was to critically review qualitative studies reporting patients' experiences of health-care services in the UK. SEARCH STRATEGY: EMBASE, CINAHL, Medline, psychINFO and MS Society databases were searched with no date restrictions using search terms denoting 'Multiple Sclerosis', 'health-care services', 'patient', 'experience' and 'qualitative research'. Snowballing and hand searching of journals were used. INCLUSION CRITERIA: Studies were included if they used qualitative methods of data collection and analysis to investigate adult patient's experiences of health-care services for MS in the UK. DATA EXTRACTION AND SYNTHESIS: Data were extracted independently and analysed jointly by two reviewers. Studies were appraised for the quality of evidence described using the Critical Appraisal Skills Programme's qualitative tool. Due to the breadth of areas covered, the data were too heterogeneous for a synthesis and are presented as a narrative review. MAIN RESULTS AND DISCUSSION: Five studies were included. Studies primarily investigated diagnosis or palliative care. Themes of importance were the emotional experience of health care, continuity of care and access to services, and support from health-care professionals. Studies were mainly poor quality and focussed on a homogenous sample. CONCLUSIONS: This study provides the first review of the UK evidence base of experiences of health care for MS. Future research should investigate experiences of care after diagnosis in a more varied sample of participants.

PICO, PICOS and SPIDER: a comparison study of specificity and sensitivity in three search tools for qualitative systematic reviews.

BACKGROUND: Qualitative systematic reviews are increasing in popularity in evidence based health care. Difficulties have been reported in conducting literature searches of qualitative research using the PICO search tool. An alternative search tool, entitled SPIDER, was recently developed for more effective searching of qualitative research, but remained untested beyond its development team. METHODS: In this article we tested the 'SPIDER' search tool in a systematic narrative review of qualitative literature investigating the health care experiences of people with Multiple Sclerosis. Identical search terms were combined into the PICO or SPIDER search tool and compared across Ovid MEDLINE, Ovid EMBASE and EBSCO CINAHL Plus databases. In addition, we added to this method by comparing initial SPIDER and PICO tools to a modified version of PICO with added qualitative search terms (PICOS). RESULTS: Results showed a greater number of hits from the PICO searches, in comparison to the SPIDER searches, with greater sensitivity. SPIDER searches showed greatest specificity for every database. The modified PICO demonstrated equal or higher sensitivity than SPIDER searches, and equal or lower specificity than SPIDER searches. The modified PICO demonstrated lower sensitivity and greater specificity than PICO searches. CONCLUSIONS: The recommendations for practice are therefore to use the PICO tool for a fully comprehensive search but the PICOS tool where time and resources are limited. Based on these limited findings the SPIDER tool would not be recommended due to the risk of not identifying relevant papers, but has potential due to its greater specificity.

Life on hold: the experience of living with neuromyelitis optica.

PURPOSE: Neuromyelitis optica (NMO) is a rare autoimmune condition characterised by acute relapses of optic neuritis and extensive transverse myelitis. The aim of this qualitative study was to develop an improved understanding of the experiences of people living with NMO. METHOD: Fifteen participants completed a semi-structured interview and data were interpreted using a constant comparative method. Participants were recruited from the Northern UK NMO Service. RESULTS: Five major themes were identified: diagnosis and treatment, symptoms, adjustment, identity and support. CONCLUSION: Results suggest NMO is a difficult condition to live with due to the unpredictability of relapses and accrued disability of visual or spinal symptoms occurring with each relapse. Poor vision, reduced mobility, bladder dysfunction and pain affected participants' independence and experience of living with NMO. Participants reported that during relapse and recovery they would "put their life on hold". They identified the importance of periods of stability to enable them to adjust to their condition and therefore aim for "normality" of life that they believed was comparable to their peers. Implications for Rehabilitation Disability due to NMO has a major impact on an individual's life, abilities and identity. Timely treatment of relapse is essential to reduce or prevent disability. Health care professionals need to coordinate care locally and nationally. Multi-disciplinary work is vital to promote adjustment, coping strategies and support for people living with NMO.