Background: Neurodegenerative diseases, like multiple sclerosis, dementia and motor neurone disease, represent one of the major public health threats of our time. There is a clear persistent need for novel, affordable, and patient-acceptable biomarkers of these diseases, to assist with diagnosis, prognosis and impact of interventions. And these biomarkers need to be sensitive, specific and precise. The retina is an attractive site for exploring this potential, as it is easily accessible to non-invasive imaging. Remarkable technology revolutions in retinal imaging are enabling us to see the retina in microscopic level detail, and measure neuronal and vascular integrity. Aims and objectives: I therefore propose that retinal imaging could provide reliable and accurate markers of these neurological diseases. In this project, I aimed to explore the clinical utility of retinal imaging derived measures of retinal neuronal and vessel size and morphology, and determine their candidacy for being reliable biomarkers in these diseases. I also aimed to detail the methods of retinal imaging acquisition, and processing, and the principles underlying all these stages, in relation to understanding of retinal structure and function. This provides an essential foundation to the application of retinal imaging analysis, highlighting both the strengths and potential weaknesses of retinal biomarkers and how they are interpreted. Methods: After performing detailed systematic reviews and meta-analyses of the existing work on retinal biomarkers of neurodegenerative disease, I carried out a prospective, controlled, cross-sectional study of retinal image analysis, in patients with MS, dementia, and ALS. This involved developing new software for vessel analysis, to add value and maximise the data available from patient imaging episodes. Results: From the systematic reviews, I identified key unanswered questions relating to the detailed analysis and utility of neuroretinal markers, and diseases with no studies yet performed of retinal biomarkers, such as non-AD dementias. I recruited and imaged 961 participants over a two-year period, and found clear patterns of significance in the phenotyping of MS, dementia and ALS. Detailed analysis has provided new insights into how the retina may yield important disease information for the individual patient, and also generate new hypotheses with relation to the disease pathophysiology itself. Conclusions: Overall, the results show that retinal imaging derived biomarkers have an important and specific role in the phenotyping of neurodegenerative diseases, and support the hypothesis that the eye is an important window to neurological brain disease.

In 2009, the Government of Canada announced a four year national population health study on neurological conditions. The aim of the study was divided into four focus areas: incidence and prevalence of neurological conditions (scope of problem); risk factors for developing neurological conditions; health services, including gaps in services; and the impacts of neurological conditions. The Native Women’s Association of Canada (NWAC), with Dr. Carrie Bourassa, First Nations University of Canada, as the principal investigator, submitted a proposal to look at three out of the four focus areas, risk factors, health services / health gaps, and impacts, among Indigenous women. Out of the 13 research projects that were funded, this was the only project that focused specifically on Indigenous people, gathering much needed baseline information on how Indigenous people think about neurological conditions, how it impacts their lives, their families, and communities, and what they see as needed to support neurological health and wellbeing. Individual interviews and research circles were conducted with people who live with a neurological condition and caregivers of people with a neurological condition. Key informant interviews were also conducted with traditional knowledge keepers, health care professionals and practitioners. The open ended questions encouraged participants to share as much or as little information as they wanted to. The stories shared contained a wealth of information, far exceeding the study’s focus areas. Unfortunately, due to external deadlines and budgetary constraints, the research team only had time to focus the research report on the three key areas outlined in the proposal–risk factors, health gaps, and impacts. A lot of the information shared was not fully explored. In this dissertation, a secondary analysis of the data is conducted to explore role of culture, as well as cultural understandings of neurological conditions, and interactions with the health care system. The theoretical framework will utilize Indigenous ways of knowing and Critical Medical Anthropology as part of a "two-eyed seeing" approach. Mi'kmaw Elder Albert Marshall suggested the phrase "two eyed seeing" as a guiding principle for health research, where one eye looks at the issue through the strengths of Indigenous knowledges and ways of knowing, while the other eye looks at the issue from the strengths of Western knowledges and ways of knowing. By using both eyes together to fully analyse the material, the strengths of both Indigenous and Western knowledges are brought together. Through using these different frameworks to explore the narratives, the research fills a gap in the literature regarding how Indigenous cultural understandings of neurological conditions can influence how Indigenous people access care.

This cross-sectional study examined differences in family needs (informational, social, financial, health, and household support), caregiver mental health (depression, satisfaction with life, vitality, social functioning, and emotional role limitations), and caregiver burden (personal life, guilt, and psychological) among caregivers of individuals with traumatic brain injury, spinal cord injury, multiple sclerosis, and dementia from cities in Colombia and Mexico (N = 343). The study also examined the connections among family needs, caregiver mental health, and caregiver burden in the combined sample of caregivers of individuals with neurological conditions. Many significant differences were identified among groups, and implications are discussed. Family needs, caregiver mental health, and burden were all robustly associated with each other, with financial and social support needs, depression, and burden-personal life and guilt emerging as particularly important. Clinicians should focus on helping caregivers meet financial and social support needs in order to positively influence caregiver burden and mental health.

The objective of this study was to contribute evidence regarding the use of the SF6D and HUI3 in persons with neurological conditions. The data of 776 individuals from the LINC Study was analyzed. The mean utility score of the HUI3 was 0.47 (95% CI 0.45, 0.49) and SF6D was 0.62 (95% CI 0.62, 0.63). Even though the SF6D and HUI3 were sensitive to a variety of HRQoL domains relevant to persons with neurological conditions, they showed only marginal agreement (ICC of 0.41) with a mean utility difference of 0.15 (95% CI 0.13, 0.17). Discordance varied systematically with HRQoL status and was consistent regardless of the participant or impairment characteristics present. Despite sharing a common purpose, the substantial and clinically important differences found between the SF6D and HUI3 cast doubt on whether the utility estimates produced by these instruments are directly comparable or universally valid.

Bakgrund: År 2020 efterlyste Statens beredning för medicinsk och social utvärdering, (SBU), en uppdaterad litteraturöversikt gällande effekten av kontrakturprofylax. Kroniska neurologiska tillstånd som föranlett nedsättning av aktiv rörlighet utgör populationen där kontrakturprofylax är en del av den fysioterapeutiska interventionen och då oftast i form av passivt rörelseuttag.  Syftet: Denna systematiska översikt syftar till att undersöka effekten av kontrakturprofylax som förebyggande och behandlande åtgärd för vuxna individer med kroniska neurologiska tillstånd som föranlett nedsättning av aktiv rörlighet. Syftet utöver det var att sammanställa resultatets vetenskapliga kvalitet och tillförlitlighet. Metod: En systematisk översikt över RCT-studier producerade mellan 2013 och 2023, där interventionen syftar till att förebygga eller behandla kontrakturer. Artiklarnas kvalitet granskades med PEDro skalan och det sammanvägda resultatets tillförlitlighet granskades med den studentanpassade versionen av GRADE. Kvaliteten var genomgående hög medan det sammanvägda resultatet har en låg sammanvägd tillförlitlighet. Resultat: Sju artiklar med ett totalt deltagarantal på 367 granskades. Kvaliteten varierade bedömt utifrån PEDro mellan 7 och 10 poäng, samtliga studier inkluderades i den sammanvägda bedömningen av tillförlitlighet. Sammanvägt hade studierna låg tillförlitlighet, detta på grund av bristande samstämmighet och överförbarhet, precisionen ansågs acceptabel.  Slutsatser: Det går inte att dra slutsatser gällande enskild effekt av kontrakturprofylax i form av passiv rörelseträning. Samtidigt framkommer inte något underlag för att kontrakturprofylax skulle negativt påverka andra interventioner. Det behövs mer forskning inom området och mätning av ledrörlighet och definition av kontrakturprofylax bör även standardiseras för ett mer överförbart och samstämmigt resultat. Denna studie kan således inte konkludera om en fysioterapeut bör använda kontrakturprofylax, vare sig som förebyggande eller behandlande åtgärd. / Background: In 2020, the State's preparation for medical and social evaluation, (SBU), called for an updated literature review regarding the effect of contracture prophylaxis. Chronic neurological conditions that have caused a reduction in active mobility make up the population where contracture prophylaxis is part of the physiotherapeutic intervention and then usually in the form of passive range of motion. Aim: The aim of this systematic review was to investigate the effect of contracture prophylaxis as a preventive and treatment measure for adults with chronic neurological conditions that have caused impairment of active mobility. The purpose, in addition to that, was to compile the scientific quality and reliability of the results. Method: A systematic review of RCT-studies produced between 2013 and 2023, where the intervention aims to prevent or treat contractures. The quality of the articles was reviewed with the PEDro scale, and the reliability of the combined results was reviewed with the student-adapted version of GRADE. The quality was considered high, while the summarized result had a low reliability. Results: Seven articles with a total number of participants of 367 were reviewed. The quality varied as assessed based on PEDro between 7 and 10 points, all studies were included in the combined assessment of reliability. Summarized, the studies had low reliability, this due to a lack of consistency and transferability, the precision was considered acceptable. Conclusions: It is not possible to draw conclusions regarding the individual effect of contracture prophylaxis in the form of passive movement training. At the same time, there is no evidence that contracture prophylaxis would negatively affect other interventions. More research is needed in the field and measurement of joint mobility and definition of contracture prophylaxis should also be standardized for a more transferable and consistent result. This study cannot therefore conclude whether a physiotherapist should use contracture prophylaxis, either as preventive care or as treatment.

Acquired brain injury (ABI) and long-term neurological conditions (such as multiple sclerosis, Parkinson’s disease), are major causes of disability in the UK, and can lead to significant physical, cognitive, neuro-behavioural, psychological and social difficulties for sufferers. Individuals affected by an ABI or neurological conditions commonly report difficulties around emotional adjustment, reduced attention, mental control, and self-efficacy and their health-related quality of life also often appears to be much reduced. Whilst conventional neuro-rehabilitation has tended to address physical and cognitive impairments and deficits rather than psychological sequelae, recently a growing trend for more holistic approaches appears to have emerged (e.g., Wilson et al., 2000, 2013). Amongst these approaches, mindfulness-based interventions (collectively known as MBIs) have sought to address this gap in terms of therapeutic intervention. There is a growing body of research evidence pointing to the utility of MBIs in the rehabilitation and support of these populations in improving perceived quality of life and increasing self-management of these conditions. However, the research still remains limited and debate persists in terms of the conceptual and theoretical framework of mindfulness. The present study sought to evaluate the effectiveness of an adapted, short-form MBI group programme for a mixed population of patients (n = 22) currently offered in a local neuro-rehabilitation service. A specific pre-post control group design was adopted in order to investigate whether the intervention produced improvements in mindfulness skills, and whether these would in turn lead to improvements in measures associated with self-efficacy and perceived quality of life. Results indicated participants completing the MBI group programme showed significantly higher mean scores across measures of mindfulness. The results also indicated that these improvements were predictive of improvements across self-efficacy and quality of life measures, with large effect sizes observed. The findings would appear to support the research hypothesis that a suitably modified MBI is beneficial for a mixed ABI population. Findings, study limitations, clinical relevance and implications, as well as methodological and theoretical considerations and directions for future research are discussed in light of the main research questions.

Objectives: The World Health Organisation has predicted that by 2020, brain injury will be one of the leading causes of disability in the world (Hyder et al, 2007). Psychological difficulties are common in this population, with up to 60% of individuals experiencing mental health difficulties (Acquired Bain injury Outreach Service, 2012). Therefore, with the rapid rise in referrals, services are under increasing pressure to provide innovative ways of offering effective and cost-efficient care. This research aimed to evaluate a novel transdiagnostic Acceptance and Commitment Therapy group approach for supporting individuals adjusting to life following the diagnosis of a neurological condition. Methods: A mixed-methods waiting-list control design was used and carried out across two sites of Hertfordshire Neurological Outpatients Service. The outcomes of the group were assessed using four outcome measures evaluating acceptance, self-identified difficulties, low mood and anxiety, as well as a semi-structured interview to identify mediators of change. Results: Ten participants from the intervention group completed, equating to a 76.9% completion rate. The results indicated that those in the intervention group made significant improvements across all measures of acceptance, self-identified difficulties and psychological distress. Those in the waiting list groups did not experience any change in these domains. The qualitative feedback from participants was also highly positive. Participants reported the usefulness of the ACT strategies, in addition to valuing being in a group with others with a range of difficulties. Participants reported greater awareness and acceptance, as well as increased activity and improved mood. Conclusions: The ACT group is a potentially effective and cost-efficient method of supporting individuals with adjustment following diagnosis of a neurological condition. Despite these promising findings it is important to acknowledge the limitations, such as the small sample size and research design. Further research would be beneficial in order to evaluate the intervention using more rigorous methods.