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  1. Article ; Online: The role of dopamine replacement on the behavioural phenotype of Parkinson's disease.

    Alobaidi, Hajar / Pall, Hardev

    Behavioural neurology

    2012  Volume 26, Issue 4, Page(s) 225–235

    Abstract: Objectives: The pharmacotherapy of Parkinson's disease (PD) is often challenging as clinicians have to find a favourable balance between the efficacy on motor symptoms and side effect profiles of different dopaminergic medications. We aimed to assess ... ...

    Abstract Objectives: The pharmacotherapy of Parkinson's disease (PD) is often challenging as clinicians have to find a favourable balance between the efficacy on motor symptoms and side effect profiles of different dopaminergic medications. We aimed to assess the available evidence on the role of dopamine agonist monotherapy as an alternative to Levodopa in the treatment of motor symptoms of PD, along with the role of dopamine antagonists in the treatment of PD-related psychosis.
    Methods: We performed a systematic literature review using the databases MEDLINE, EMBASE, PsycINFO and the Cochrane Library Central register of controlled trials. Two searches were performed, 'Search 1' extracting trials on dopamine agonists, and 'Search 2' on atypical antipsychotics. Eligible studies were Double-blind Randomised Controlled Trials (RCTs) using the Unified Parkinson's Disease Rating Scale (UPDRS) and the Brief Psychiatric Rating Scale (BPRS) as outcome measures for Search 1 and 2, respectively.
    Results: 16 relevant RCTs were extracted from the search results. Overall, dopamine agonists were shown to significantly improve UPDRS scores, with a mean percentage improvement of 14.4% compared to -1.9% in the control arm (P value < 0.05). However, their side effect profile illustrated they were associated with twice the incidence of psychotic symptoms in comparison to the controls. The results on the efficacy of atypical antipsychotics for the treatment of PD-related psychosis were not significant.
    Conclusions: This evidence-based review confirmed that dopamine agonists can be an effective and safe treatment as monotherapy in PD, however psychotic symptoms remain a significant side effect. Atypical antipsychotics may not be relied upon for the correction of these symptoms due to inconsistent results about their efficacy.
    MeSH term(s) Antipsychotic Agents/therapeutic use ; Dopamine/metabolism ; Dopamine Agonists/adverse effects ; Dopamine Agonists/therapeutic use ; Humans ; Parkinson Disease/complications ; Parkinson Disease/diagnosis ; Parkinson Disease/drug therapy ; Psychotic Disorders/complications ; Psychotic Disorders/drug therapy
    Chemical Substances Antipsychotic Agents ; Dopamine Agonists ; Dopamine (VTD58H1Z2X)
    Language English
    Publishing date 2012-06-19
    Publishing country Netherlands
    Document type Journal Article ; Review ; Systematic Review
    ZDB-ID 1001896-7
    ISSN 1875-8584 ; 0953-4180
    ISSN (online) 1875-8584
    ISSN 0953-4180
    DOI 10.3233/BEN-2012-120265
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  2. Article: Apathy in patients with Parkinson's disease following deep brain stimulation of the subthalamic nucleus.

    Hindle Fisher, Isabel / Pall, Hardev S / Mitchell, Rosalind D / Kausar, Jamilla / Cavanna, Andrea E

    CNS spectrums

    2016  Volume 21, Issue 3, Page(s) 258–264

    Abstract: Objective: Apathy has been reported as a possible adverse effect of deep brain stimulation of the subthalamic nucleus (STN-DBS). We investigated the prevalence and severity of apathy in 22 patients with Parkinson's disease (PD) who underwent STN-DBS, as ...

    Abstract Objective: Apathy has been reported as a possible adverse effect of deep brain stimulation of the subthalamic nucleus (STN-DBS). We investigated the prevalence and severity of apathy in 22 patients with Parkinson's disease (PD) who underwent STN-DBS, as well as the effects of apathy on quality of life (QOL).
    Methods: All patients were assessed with the Lille Apathy Rating Scale (LARS), the Apathy Scale (AS), and the Parkinson's Disease Questionnaire and were compared to a control group of 38 patients on pharmacotherapy alone.
    Results: There were no significant differences in the prevalence or severity of apathy between patients who had undergone STN-DBS and those on pharmacotherapy alone. Significant correlations were observed between poorer QOL and degree of apathy, as measured by the LARS (p<0.001) and the AS (p=0.021). PD-related disability also correlated with both apathy ratings (p<0.001 and p=0.017, respectively).
    Conclusion: Our findings suggest that STN-DBS is not necessarily associated with apathy in the PD population; however, more severe apathy appears to be associated with a higher level of disability due to PD and worse QOL, but no other clinico-demographic characteristics.
    MeSH term(s) Aged ; Antiparkinson Agents/therapeutic use ; Apathy ; Case-Control Studies ; Deep Brain Stimulation ; Female ; Humans ; Male ; Middle Aged ; Parkinson Disease/psychology ; Parkinson Disease/therapy ; Prevalence ; Quality of Life/psychology ; Risk Factors ; Severity of Illness Index ; Subthalamic Nucleus
    Chemical Substances Antiparkinson Agents
    Language English
    Publishing date 2016-06
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2008418-3
    ISSN 2165-6509 ; 1092-8529
    ISSN (online) 2165-6509
    ISSN 1092-8529
    DOI 10.1017/S1092852916000171
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  3. Article: N

    Kozielewicz, Paweł / Alomar, Hatun / Yusof, Syaratul / Grafton, Gillian / Cooper, Alison J / Curnow, S John / Ironside, James W / Pall, Hardev / Barnes, Nicholas M

    FEBS open bio

    2017  Volume 7, Issue 12, Page(s) 1982–1993

    Abstract: A number of members of the G protein-coupled receptor class of cell surface receptors are 'orphans' with no known endogenous ligand. One of these orphan receptors is GPR61; there are little data about its expression in human cells and tissues. In this ... ...

    Abstract A number of members of the G protein-coupled receptor class of cell surface receptors are 'orphans' with no known endogenous ligand. One of these orphan receptors is GPR61; there are little data about its expression in human cells and tissues. In this study, we investigated the post-translational modification of GPR61 by
    Language English
    Publishing date 2017-11-20
    Publishing country England
    Document type Journal Article
    ZDB-ID 2651702-4
    ISSN 2211-5463
    ISSN 2211-5463
    DOI 10.1002/2211-5463.12339
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  4. Article ; Online: Deep brain stimulation improves survival in severe Parkinson's disease.

    Ngoga, Desire / Mitchell, Rosalind / Kausar, Jamilla / Hodson, James / Harries, Anwen / Pall, Hardev

    Journal of neurology, neurosurgery, and psychiatry

    2014  Volume 85, Issue 1, Page(s) 17–22

    Abstract: Objectives: Levodopa and other dopaminergic treatments have not had the expected effect on survival in Parkinson's disease (PD). Bilateral subthalamic nucleus deep brain stimulation (STN-DBS) has been shown to improve motor function, motor fluctuations, ...

    Abstract Objectives: Levodopa and other dopaminergic treatments have not had the expected effect on survival in Parkinson's disease (PD). Bilateral subthalamic nucleus deep brain stimulation (STN-DBS) has been shown to improve motor function, motor fluctuations, health-related quality of life, and to reduce medication usage and drug-induced dyskinesia in patients with severe PD refractory to medical therapy. Little however, has been described on the impact of STN-DBS on the survival of these patients. We aim in this study to examine the impact of STN-DBS on the survival of patients with severe PD.
    Methods: Patients who were eligible for STN-DBS were given the choice of undergoing surgery or continuing on medical treatment. Those who exercised patient choice and preferred to continue with medical treatment formed a control population. All eligible patients seen in a 10-year period are included in this study. Our primary outcome measure is a difference in mortality between the two groups with a secondary measure of admission rates to residential (nursing home) care.
    Results: 106 patients underwent STN-DBS, and 41 patients exercised patient choice and declined the procedure. The two groups were matched for age, gender, ethnicity, duration of disease, rates of pre-existing depression and Levodopa equivalent doses of anti-Parkinson's medications taken. Patients undergoing STN-DBS had significantly longer survival and were significantly less likely to be admitted to a residential care home than those managed purely medically. The statistical significance of these findings persisted after adjusting for potential confounding factors (survival: p=0.002, HR 0.29 (0.13 to 0.64) (residential care home admission: OR: 0.1 (95% CI 0.0 to 0.3; p<0.001).
    Interpretation: We show for the first time that there is a survival advantage of DBS surgery in advanced PD. The effect of potential bias factors is examined. The survival advantage may arise for several postulated reasons, ranging from improvement in axial functions, such as swallowing, to some as yet unrecognised benefit of reduction in dopaminergic medication. These findings are of great interest to both patients with PD and the health professionals considering the treatment options for patients with severe PD.
    MeSH term(s) Aged ; Antiparkinson Agents/therapeutic use ; Cause of Death ; Deep Brain Stimulation/methods ; Depression/etiology ; Depression/psychology ; Female ; Humans ; Kaplan-Meier Estimate ; Levodopa/therapeutic use ; Logistic Models ; Male ; Middle Aged ; Neuropsychological Tests ; Parkinson Disease/mortality ; Parkinson Disease/psychology ; Parkinson Disease/therapy ; Psychiatric Status Rating Scales ; Regression Analysis ; Subthalamic Nucleus/physiology ; Survival ; Survival Analysis ; Treatment Outcome
    Chemical Substances Antiparkinson Agents ; Levodopa (46627O600J)
    Language English
    Publishing date 2014-01
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 3087-9
    ISSN 1468-330X ; 0022-3050
    ISSN (online) 1468-330X
    ISSN 0022-3050
    DOI 10.1136/jnnp-2012-304715
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  5. Article: N‐glycosylation and expression in human tissues of the orphan GPR61 receptor

    Kozielewicz, Paweł / Alomar, Hatun / Yusof, Syaratul / Grafton, Gillian / Cooper, Alison J. / Curnow, S. John / Ironside, James W. / Pall, Hardev / Barnes, Nicholas M.

    FEBS Open Bio. 2017 Dec., v. 7, no. 12

    2017  

    Abstract: A number of members of the G protein‐coupled receptor class of cell surface receptors are ‘orphans’ with no known endogenous ligand. One of these orphan receptors is GPR61; there are little data about its expression in human cells and tissues. In this ... ...

    Abstract A number of members of the G protein‐coupled receptor class of cell surface receptors are ‘orphans’ with no known endogenous ligand. One of these orphan receptors is GPR61; there are little data about its expression in human cells and tissues. In this study, we investigated the post‐translational modification of GPR61 by N‐glycosylation at an identified consensus N‐glycosylation site (N12) and the impact of this modification upon the subcellular expression of the protein. The N‐glycosylation inhibitor tunicamycin reduced the apparent molecular weight of immunoreactivity associated with myc‐tagged GPR61 by 1–2 kDa, which was comparable to the evident molecular weight of the myc‐tagged N12S GPR61 mutant with disrupted consensus N‐glycosylation site. Analysis of GPR61 expression demonstrated that tunicamycin treatment reduced considerably heterologous expression of GPR61 in the cell membrane despite the N12S GPR61 mutant being readily expressed at the cell surface. These results demonstrate that GPR61 is subject to N‐glycosylation but suggest this is not a prerequisite for cell surface expression, although N‐glycosylation of other proteins may be important for cell membrane expression of GPR61. Expression of GPR61 protein was demonstrated at the cellular level in human hippocampus and human peripheral blood mononuclear cells. In the latter, there was a significantly higher expression of GPR61 in the Th17 cell subset in comparison with resting CD4+ cells, which may point toward a potential role for the GPR61 receptor in autoimmune diseases. This is the first report that GPR61 protein is subject to post‐translational modification and is expressed in immune cell subsets and the hippocampus. These findings will help guide studies to investigate the function of GPR61.
    Keywords G-protein coupled receptors ; cell membranes ; glycosylation ; heterologous gene expression ; hippocampus ; humans ; immune response ; ligands ; molecular weight ; mutants ; tunicamycin
    Language English
    Dates of publication 2017-12
    Size p. 1982-1993.
    Publishing place John Wiley & Sons, Ltd
    Document type Article
    Note JOURNAL ARTICLE
    ZDB-ID 2651702-4
    ISSN 2211-5463
    ISSN 2211-5463
    DOI 10.1002/2211-5463.12339
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  6. Article ; Online: The effect of dopaminergic therapy on intraoperative microelectrode recordings for subthalamic deep brain stimulation under GA: can we operate on patients 'on medications'?

    Asha, Mohammed J / Kausar, Jamilla / Krovvidi, Hari / Shirley, Colin / White, Anwen / Chelvarajah, Ramesh / Hodson, James A / Pall, Hardev / Mitchell, Rosalind D

    Acta neurochirurgica

    2016  Volume 158, Issue 2, Page(s) 387–393

    Abstract: Objectives: Microelectrode recording (MER) plays an important role in target refinement in deep brain stimulation (DBS) of the subthalamic nucleus (STN) for Parkinson's disease (PD). Traditionally, patients were operated on in the 'off-medication' state ...

    Abstract Objectives: Microelectrode recording (MER) plays an important role in target refinement in deep brain stimulation (DBS) of the subthalamic nucleus (STN) for Parkinson's disease (PD). Traditionally, patients were operated on in the 'off-medication' state to allow intraoperative assessment of the patient response to direct STN stimulation. The development of intraoperative microelectrode recording (MER) has facilitated the introduction of general anaesthesia (GA). However, the routine withdrawal of dopaminergic medications has remained as standard practice. This retrospective review examines the effect of continuing these medications on intraoperative MER for subthalamic DBS insertion under GA and discusses the clinical implication of this approach.
    Methods: Retrospective review of PD patients who had bilateral STN DBS insertion was conducted. A cohort of seven patients (14 STN microelectrodes) between 2012 and 2013, who inadvertently underwent the procedure while 'on medication', was identified. This 'on-medication' group was compared to all other patients who underwent the same procedure between 2012 and 2013 and had their medications withdrawn preoperatively, the 'off-medication' group, n = 26 (52 STN DBS). The primary endpoint was defined as the number of microelectrode tracks required to obtain adequate STN recordings. A second endpoint was the length of MERs that was finally used to guide the DBS lead insertion. The Reduction of the levo-dopa equivalent daily dose (LEDD) was also examined as a surrogate marker for clinical outcome 12 months postoperatively for both groups. For the on-medication group further analysis of the clinical outcome was done relying on the change in the motor examination at 12 months following STN DBS using the following parameters (Hoehn and Yahr scale, the number of waking hours spent in the OFF state as well as the duration of dyskinesia during the ON periods).
    Results: The on-medication group was statistically comparable in all baseline characteristics to the off-medication group, including age at operation 57 ± 9.9 years vs. 61.5 ± 9.2 years, p = 0.34 (mean ± SD); duration of disease (11.6 ± 5 years vs. 11.3 ± 4 years, p = 0.68); gender F:M ratio (1:6 vs. 9:17, p = 0.40). Both groups had similar PD medication regimes preoperatively expressed as levodopa equivalent daily dose (LEDD) 916 mg (558-1850) vs. 744 mg (525-3591), respectively, p = 0.77. In the on-medication group, all seven patients (14 STN electrodes) had satisfactory STN recording from a single brain track versus 15 out of 26 patients (57.7 %) in the off-medication group, p = 0.06. The length of MER was 4.5 mm (3.0-5.5) in the on-medication group compared to 3.5 mm (3.0-4.5) in the off-medication group, p = 0.16. The percentage of reduction in LEDD postoperatively for the on-medication group was comparable to that in the off-medication group, 62 % versus 58 %, respectively, p > 0.05. All patients in the on-medication group had clinically significant improvement in their PD motor symptoms as assessed by the Hoehn and Yahr scale; the number of hours (of the waking day) spent in the OFF state dropped from 6.9 (±2.3) h to 0.9 (±1.6) h; the duration of dyskinesia during the ON state dropped from 64 % (±13 %) of the ON period to only 7 % (±12 %) at 12 months following STN DBS insertion.
    Conclusion: STN DBS insertion under GA can be performed without the need to withdraw dompaminergic treatment preoperatively. In this review the inadvertent continuation of medications did not affect the physiological localisation of the STN or the clinical effectiveness of the procedure. The continuation of dopamine therapy is likely to improve the perioperative experience for PD patients, avoid dopamine-withdrawal complications and improve recovery. A prospective study is needed to verify the results of this review.
    MeSH term(s) Aged ; Anesthesia, General ; Antiparkinson Agents/pharmacology ; Contraindications ; Deep Brain Stimulation ; Female ; Humans ; Levodopa/pharmacology ; Male ; Middle Aged ; Subthalamic Nucleus/drug effects
    Chemical Substances Antiparkinson Agents ; Levodopa (46627O600J)
    Language English
    Publishing date 2016-02
    Publishing country Austria
    Document type Journal Article
    ZDB-ID 80010-7
    ISSN 0942-0940 ; 0001-6268
    ISSN (online) 0942-0940
    ISSN 0001-6268
    DOI 10.1007/s00701-015-2631-1
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  7. Article ; Online: Subthalamic nucleus microelectrode recordings (MER) can be reliably detected despite general anaesthesia and dopaminergic treatment.

    Asha, Mohammed / Kausar, Jamilla / Krovvidi, Hari / Shirely, Colin / White, Anwen / Chelvarajah, Ramesh / Pall, Hardev / Mitchell, Rosalind

    Acta neurochirurgica

    2016  Volume 158, Issue 5, Page(s) 1015–1016

    MeSH term(s) Anesthesia, General ; Deep Brain Stimulation ; Humans ; Microelectrodes ; Parkinson Disease/surgery ; Subthalamic Nucleus
    Language English
    Publishing date 2016-03-04
    Publishing country Austria
    Document type Letter ; Comment
    ZDB-ID 80010-7
    ISSN 0942-0940 ; 0001-6268
    ISSN (online) 0942-0940
    ISSN 0001-6268
    DOI 10.1007/s00701-016-2758-8
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  8. Article ; Online: Theory of mind deficits in Parkinson's disease: a product of executive dysfunction?

    Eddy, Clare M / Beck, Sarah R / Mitchell, Ian J / Praamstra, Peter / Pall, Hardev S

    Neuropsychology

    2013  Volume 27, Issue 1, Page(s) 37–47

    Abstract: Objective: Patients with Parkinson's disease (PD) can perform poorly on tasks involving theory of mind (ToM): the ability to reason about mental states. We investigated whether patients' ToM deficits were independent of executive dysfunction.: Method!# ...

    Abstract Objective: Patients with Parkinson's disease (PD) can perform poorly on tasks involving theory of mind (ToM): the ability to reason about mental states. We investigated whether patients' ToM deficits were independent of executive dysfunction.
    Method: Experiment 1 aimed to establish that ToM deficits were present, and 2 following experiments manipulated the working memory (WM) demands of the ToM task.
    Results: In Experiment 1, 15 patients with PD performed significantly more poorly than controls on a false belief vignette task but not on a faux pas task. Errors were related to poor verbal fluency. In Experiment 2, 24 patients with PD made fewer errors on shorter false belief vignettes than the original FBT, and errors on the latter were related to WM impairment. In Experiment 3, the FBT was presented as a comic strip visible throughout questioning, reducing WM demands. Patients (n = 24) made memory errors but no false belief errors on the comic strip. They exhibited no verbal fluency or WM impairments, but did exhibit deficits on a black-and-white Stroop task. False belief errors were not correlated with executive performance.
    Conclusions: PD patients made very few ToM errors that were independent of errors on memory questions, so in this sample, ToM deficits per se appear unlikely. However, patients still made errors on ToM tasks when associated incidental WM demands were considerably reduced, highlighting the need for future investigations of ToM in PD to account for the role of more general cognitive restrictions exhibited by even some medicated, early stage patients.
    MeSH term(s) Aged ; Cognition Disorders/diagnosis ; Cognition Disorders/etiology ; Cognition Disorders/psychology ; Executive Function/physiology ; Female ; Humans ; Male ; Memory, Short-Term/physiology ; Mental Disorders/etiology ; Middle Aged ; Neuropsychological Tests ; Parkinson Disease/complications ; Statistics as Topic ; Theory of Mind
    Language English
    Publishing date 2013-01
    Publishing country United States
    Document type Journal Article
    ZDB-ID 1042412-x
    ISSN 1931-1559 ; 0894-4105
    ISSN (online) 1931-1559
    ISSN 0894-4105
    DOI 10.1037/a0031302
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  9. Article ; Online: Subthalamic deep brain stimulation under general anesthesia and neurophysiological guidance while on dopaminergic medication: comparative cohort study.

    Asha, Mohammed Jamil / Fisher, Benjamin / Kausar, Jamilla / Garratt, Hayley / Krovvidi, Hari / Shirley, Colin / White, Anwen / Chelvarajah, Ramesh / Ughratdar, Ismail / Hodson, James A / Pall, Hardev / Mitchell, Rosalind D

    Acta neurochirurgica

    2018  Volume 160, Issue 4, Page(s) 823–829

    Abstract: Objectives: The authors have previously reported on the technical feasibility of subthalamic nucleus deep brain stimulation (STN DBS) under general anesthesia (GA) with microelectrode recording (MER) guidance in Parkinsonian patients who continued ... ...

    Abstract Objectives: The authors have previously reported on the technical feasibility of subthalamic nucleus deep brain stimulation (STN DBS) under general anesthesia (GA) with microelectrode recording (MER) guidance in Parkinsonian patients who continued dopaminergic therapy until surgery. This paper presents the results of a prospective cohort analysis to verify the outcome of the initial study, and report on wider aspects of clinical outcome and postoperative recovery.
    Methods: All patients in the study group continued dopaminergic therapy until GA was administered. Baseline characteristics, intraoperative neurophysiological markers, and perioperative complications were recorded. Long-term outcome was assessed using selective aspects of the unified Parkinson's disease rating scale motor score. Immediate postoperative recovery from GA was assessed using the "time needed for extubation" and "total time of recovery." Data for the "study group" was collected prospectively. Examined variables were compared between the "study group" and "historical control group" who stopped dopaminergic therapy preoperatively.
    Results: The study group, n = 30 (May 2014-Jan 2016), were slightly younger than the "control group," 60 (51-64) vs. 64 (56-69) years respectively, p = 0.043. Both groups were comparable for the recorded intraoperative neurophysiological parameters; "number of MER tracks": 60% of the "study group" had single track vs. 58% in the "control" group, p = 1.0. Length of STN MER detected was 9 vs. 7 mm (median) respectively, p = 0.037. A trend towards better recovery from GA in the study group was noted, with shorter "total recovery time": 60 (50-84) vs. 89 (62-120) min, p = 0.09. Long-term improvement in motor scores and reduction in L-dopa daily equivalent dose were equally comparable between both groups. No cases of dopamine withdrawal or problems with immediate postop dyskinesia were recorded in the "on medications group." The observed rate of dopamine-withdrawal side effects in the "off-medications" group was 15%.
    Conclusions: The continuation of dopaminergic treatment for patients with PD does not affect the feasibility/outcome of the STN DBS surgery. This strategy appears to reduce the risk of dopamine-withdrawal adverse effects and may improve the recovery in the immediate postoperative period, which would help enhance patients' perioperative experience.
    MeSH term(s) Aged ; Anesthesia, General/adverse effects ; Anesthesia, General/methods ; Cohort Studies ; Deep Brain Stimulation/adverse effects ; Deep Brain Stimulation/methods ; Dopamine Agents/therapeutic use ; Female ; Humans ; Levodopa/therapeutic use ; Male ; Microelectrodes ; Middle Aged ; Parkinson Disease/therapy ; Postoperative Complications/epidemiology ; Prospective Studies ; Subthalamic Nucleus/physiopathology
    Chemical Substances Dopamine Agents ; Levodopa (46627O600J)
    Language English
    Publishing date 2018-02-02
    Publishing country Austria
    Document type Comparative Study ; Journal Article
    ZDB-ID 80010-7
    ISSN 0942-0940 ; 0001-6268
    ISSN (online) 0942-0940
    ISSN 0001-6268
    DOI 10.1007/s00701-018-3473-4
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  10. Article ; Online: Health-related quality of life and supportive care in patients with rare long-term neurological conditions.

    Calvert, Melanie / Pall, Hardev / Hoppitt, Thomas / Eaton, Benjamin / Savill, Edward / Sackley, Catherine

    Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

    2012  Volume 22, Issue 6, Page(s) 1231–1238

    Abstract: Purpose: Rare long-term neurological conditions (rLTNCs) may have significant impact on patients' health-related quality of life (HRQL); however, evidence is sparse. We assessed HRQL and access to supportive care in patients with rLTNCs.: Methods: ... ...

    Abstract Purpose: Rare long-term neurological conditions (rLTNCs) may have significant impact on patients' health-related quality of life (HRQL); however, evidence is sparse. We assessed HRQL and access to supportive care in patients with rLTNCs.
    Methods: Survey of patients with rare rLTNCs (motor neurone disease, Huntington's disease, cerebellar ataxia, progressive supranuclear palsy, multiple system atrophy, Charcot-Marie-Tooth disease and postpolio syndrome) to assess current access to health and social care, and HRQL using the Euroqol EQ-5D.
    Results: A total of 266 participants with rLTNCs completed the survey. The HRQL of patients is substantially reduced compared to the general population. Many patients reported pain, were anxious or depressed and experienced problems with mobility, self-care and usual activities (mean EQ-5D index scores ranged from 0.2 to 0.44). Although some patients have accessed rehabilitative services, results suggest care coordination could be improved.
    Conclusions: Rare long-term neurological conditions have a significant impact on HRQL. Many patients with rLTNCs do not seem to be accessing the level of health and social care services that could improve their HRQL.
    MeSH term(s) Adult ; Aged ; Aged, 80 and over ; Anxiety/psychology ; Cross-Sectional Studies ; Female ; Health Services Accessibility ; Health Status ; Health Surveys ; Humans ; Long-Term Care ; Male ; Middle Aged ; Nervous System Diseases/psychology ; Nervous System Diseases/therapy ; Quality of Life ; Rare Diseases ; Severity of Illness Index ; Sickness Impact Profile ; Social Support ; Social Welfare
    Language English
    Publishing date 2012-09-23
    Publishing country Netherlands
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1161148-0
    ISSN 1573-2649 ; 0962-9343
    ISSN (online) 1573-2649
    ISSN 0962-9343
    DOI 10.1007/s11136-012-0269-5
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