The impact of chemotherapy on cognitive performance post-surgery in patients with colorectal cancer: A prospective cohort study.

OBJECTIVES: Subjective reports of cognitive impairment following chemotherapy are frequent in cancer patients. Objective cognitive impairment has been observed in cancer patients regardless of treatment regimen suggesting the relationship between cognitive impairment and chemotherapy is not clear cut. Little research has explored the effects of chemotherapy on cognition following surgery in colorectal cancer (CRC). The present study explored the effects of chemotherapy on cognitive performance in a sample of CRC patients. METHODS: 136 participants were recruited into a prospective cohort study: 78 CRC patients undergoing surgery and adjuvant chemotherapy, 58 CRC patients undergoing surgery only. A battery of neuropsychological tests was administered to participants 4 weeks post-surgery (T1), 12 weeks after first chemotherapy (T2) and 3 months after last chemotherapy (T3) or equivalent time-points. RESULTS: Using the criterion of scoring at least two standard-deviations below the group norm on at least one neuropsychological test, 45%-55% of all CRC patients showed cognitive deficits 10 months after surgery (T3) and 14% on at least 3 tests. However, cognition did not significantly differ between patients who had chemotherapy and those who did not. A time by group interaction effect was found on the composite cognition score using multi-level modelling suggesting a greater improvement in cognition in the surgery only group over time (p < 0.05). CONCLUSIONS: CRC patients display cognitive impairment 10 months after surgery. Chemotherapy did not worsen cognitive impairment but did appear to slow cognitive recovery relative to those undergoing surgery only. The findings demonstrate a clear need for supportive cognitive interventions for all CRC patients following treatment.

Effectiveness of cognitive interventions for adult surgical patients after general anaesthesia to improve cognitive functioning: A systematic review.

AIMS AND OBJECTIVES: To examine the effectiveness of cognitive interventions after general anaesthesia to improve cognitive functioning. BACKGROUND: The number of surgical procedures performed worldwide is large and growing. Postoperative cognitive dysfunction is a common complication associated with poor postoperative outcomes. A variety of cognitive interventions have been developed to maintain or improve cognitive function in one or more cognitive domains. Cognitive interventions have shown to be effective in healthy older populations, those with mild cognitive impairment, and those with heart failure. The impact of cognitive interventions in surgical patients after general anaesthesia is a relatively new focus of research and is therefore less well established. METHODS: Seven bibliographic databases were searched in relation to 'surgery' and 'cognitive interventions'; no date or language limits were imposed. Studies including adult patients who were scheduled for, or who had undergone surgery under general anaesthesia, had a baseline cognitive assessment using a validated measurement, and had engaged with any cognition-based intervention were included. Full-text review for inclusion, quality assessment and data extraction were undertaken independently by two authors. This study is reported in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines. RESULTS: A total of 550 papers were identified for possible inclusion, of which nine met the inclusion criteria and were included in the review. The majority were randomised controlled trials (RCTs) (n = 6 [66.7%]). Four studies used computerised cognitive interventions, while five used traditional cognitive interventions. Most of the studies used multi-domain cognitive training focusing on two or more domains (n = 7 [77.8%]) while two studies used single-domain cognitive training. Memory (n = 7 [77.8%]) and attention (n = 5 [55.6%]) were the cognitive domains most often targeted during the intervention. CONCLUSIONS: The use of cognitive interventions demonstrated some efficacy in improving cognitive function after general anaesthesia, particularly those targeting memory. RELEVANCE FOR CLINICAL PRACTICE: The findings of this review suggest that cognitive interventions show promise at improving cognitive performance in patients with POCD and could be usefully implemented in clinical practice to improve patient outcomes.

A patient-initiated treatment model for blepharospasm and hemifacial spasm: a randomized controlled trial.

BACKGROUND: To test, in a two-arm, single center, superiority, randomized controlled trial, the effectiveness of and costs associated with a patient-initiated treatment model for people with hemifacial spasm (HFS) and blepharospasm (BEB) in comparison to usual care. METHODS: One hundred and thirty patients with HFS or BEB, aged 18 years or over, were recruited from a nurse-led botulinum toxin type A clinic at an eye hospital in the United Kingdom (UK), completed baseline measures and were randomized (1:1). The intervention group determined their own botulinum toxin type A (BoNT/A) treatment schedule during the trial period (9 months) and received an information leaflet with a "hotline" number to book an appointment. Usual care appointments were scheduled by treating clinicians. Data analysts were blind to study group. The primary outcomes were disease severity and functional disability, as measured by the Jankovic Rating Scale and Blepharospasm Disability Index, respectively. Secondary outcomes included quality of life, anxiety and depression, satisfaction with care, confidence in the service, economic costs and employment days lost. RESULTS: Sixty-five patients were randomized to each group. The intervention demonstrated no statistically significant difference to usual care for any of primary outcomes. On secondary outcomes the levels of anxiety differed significantly (F2, 142.39 = 1.65, p = 0.02), with the intervention arm exhibiting a decrease and the control arm an increase (Hedges' g = - 0.26 [99% CI -0.83, 0.32]). No other statistically significant differences were found for secondary outcomes. Overall healthcare costs and costs to the patient were on average £198.95 less (95% CI -£256.76, £654.67; p = 0.10) per participant for those in the intervention compared to usual care, although this finding was not significant. CONCLUSIONS: We did not observe differences between the patient-initiated treatment model and usual care for people with BEB or HFS, on any primary outcome measure, quality of life, or depression. The patient-initiated treatment model may, however, have the potential to save healthcare costs and reduce anxiety. Patients using this new model were also equally as satisfied in the service and confident in their care as those receiving treatment as usual. TRIAL REGISTRATION: Clinicaltrials.gov ID NCT02577224 , 16th October 2015.

Acceptability and Feasibility of a Mindfulness Intervention Delivered via Videoconferencing for People With Parkinson's.

Mindfulness-based group therapy is a rapidly growing psychological approach that can potentially help people adjust to chronic illness and manage unpleasant symptoms. Emerging evidence suggests that mindfulness-based interventions may benefit people with Parkinson's. The objective of the paper is to examine the appropriateness, feasibility, and potential cost-effectiveness of an online mindfulness intervention, designed to reduce anxiety and depression for people with Parkinson's. We conducted a feasibility randomized control trial and qualitative interviews. Anxiety, depression, pain, insomnia, fatigue, impact on daily activities and health-related quality of life were measured at baseline, 4, 8, and 20 weeks. Semi-structured interviews were conducted at the end of the intervention. Participants were randomized to the Skype delivered mindfulness group (n = 30) or wait-list (n = 30). Participants in the mindfulness group were also given a mindfulness manual and a CD with mindfulness meditations. The intervention did not show any significant effects in the primary or secondary outcome measures. However, there was a significant increase in the quality of life measure. The incremental cost-effectiveness ratio was estimated to be £27,107 per Quality-Adjusted Life Year gained. Also, the qualitative study showed that mindfulness is a suitable and acceptable intervention. It appears feasible to run a trial delivering mindfulness through Skype, and people with Parkinson's found the sessions acceptable and helpful.

Which factors impact on quality of life for adults with blepharospasm and hemifacial spasm?

Purpose: Benign essential blepharospasm (BEB) and hemifacial spasm (HFS) are debilitating conditions causing spasms to the eyes and/or face and can significantly impact on quality of life (QoL). Initial research has highlighted potential factors impacting on QoL in BEB, but there remains a wealth of demographic, clinical, and psychosocial factors that may contribute to QoL but have not received attention. Methods: Cross-sectional baseline data were collected before a single-masked randomised controlled trial from 130 adults with BEB and HFS recruited from botulinum toxin clinics at Moorfields Eye Hospital, London. QoL was measured using the 24-item Craniocervical Dystonia Questionnaire (CDQ24), which provides a total score and five subscale scores relating to Stigma, Emotional state, Pain, Activities of daily living (ADL), and Social/family life. Treating clinicians provided clinical data. Hierarchical multiple regressions were performed on this baseline data to identify significant predictors of QoL. Results: ADL and Stigma were the areas most impacted upon whilst patients experienced better adjustment in relation to Pain, Social/family life, and Emotional state. CDQ24 Total scores were explained by the model (80% variance) and were significantly associated with appearance concerns, emotional representations, perceived negative consequences of the condition, mood, and dose of botulinum toxin. Conclusions: Patients with BEB and HFS report a detrimental impact on ADL and perceived stigma in relation to their condition. Predominantly, individual perceptions and mood are associated with QoL in this population, rather than demographic and clinical factors, signifying areas to target in the design of future healthcare services or interventions.

Is there a relationship between objectively measured cognitive changes in patients with solid tumours undergoing chemotherapy treatment and their health-related quality of life outcomes? A systematic review.

BACKGROUND: This systematic review examines whether there is a relationship between objective measures of chemotherapy-related cognitive impairment in patients with solid cancer tumours and health-related quality of life (HRQoL). METHODS: Multiple online databases were searched (including Ovid MEDLINE, EMBASE, PsycINFO, PsycARTICLES, CINAHL, PubMed, and Web of Science) to identify articles published between 1980 and 2016 examining the extent of chemotherapy-related cognitive deficit and its relationship with HRQoL in cancer patients. Of 2769 potentially relevant articles, 17 studies met the inclusion criteria for the current review. RESULTS: Evidence for the presence of cognitive impairment in patients treated with chemotherapy was found in 15 of the 17 studies. Of the 15 studies finding some sort of cognitive impairment, 12 were in female breast cancer patients, 2 in bowel cancer, and 1 each in ovarian and lung cancer. Three of the 15 studies found a significant relationship between various objectively measured cognitively impaired domains and specific HRQoL outcomes. There was, however, only limited testing of the relationships between quantifiable cognitive dysfunction and HRQoL domains. CONCLUSIONS: This review suggests that in patients with solid tumours, where there is a relationship between chemotherapy treatment and cognitive impairment, the type and level of cognitive decline does not consistently appear to affect such patients' HRQoL. This could be partly explained by variations in study design, measures used, definitions of cognitive impairment, varying measurement time frames, small sample sizes, and differences in disease severity and type of treatment regimes.

Cognitive dysfunction in adult CHD with different structural complexity.

OBJECTIVE: We carried out a cross-sectional study to assess cognitive function in a sample of adult CHD patients, within the Functioning in Adult Congenital Heart Disease study London. The association between cognitive functioning and disease complexity was examined. METHODS: A total of 310 patients participated in this study. Patients were classified into four structural complexity groups - tetralogy of Fallot, transposition of the great arteries, single ventricle, and simple conditions. Each patient underwent neuropsychological assessment to evaluate cognitive function, including memory and executive function, and completed questionnaires to assess depression and anxiety. RESULTS: Among all, 41% of the sample showed impaired performance (>1.5 SD below the normative mean) on at least three tests of cognitive function compared with established normative data. This was higher than the 8% that was expected in a normal population. The sample exhibited significant deficits in divided attention, motor function, and executive functioning. There was a significant group difference in divided attention (F=5.01, p=0.002) and the mean total composite score (F=5.19, p=0.002) between different structural complexity groups, with the simple group displaying better cognitive function. CONCLUSION: The results indicate that many adult CHD patients display impaired cognitive function relative to a healthy population, which differs in relation to disease complexity. These findings may have implications for clinical decision making in this group of patients during childhood. Possible mechanisms underlying these deficits and how they may be reduced or prevented are discussed; however, further work is needed to draw conclusive judgements.

The effects of cognitive reserve and lifestyle on cognition and dementia in Parkinson's disease--a longitudinal cohort study.

OBJECTIVE: Cognitive reserve theory seeks to explain the observed mismatch between the degree of brain pathology and clinical manifestations. Early-life education, midlife social and occupational activities and later-life cognitive and social interactions are associated with a more favourable cognitive trajectory in older people. Previous studies of Parkinson's disease (PD) have suggested a possible role for the effects of cognitive reserve, but further research into different proxies for cognitive reserve and longitudinal studies is required. This study examined the effects of cognitive lifestyle on cross-sectional and longitudinal measures of cognition and dementia severity in people with PD. METHODS: Baseline assessments of cognition, and of clinical, social and demographic information, were completed by 525 participants with PD. Cognitive assessments were completed by 323 participants at 4-year follow-up. Cognition was assessed using the measures of global cognition dementia severity. Cross-sectional and longitudinal serial analyses of covariance for cognition and binomial regression for dementia were performed. RESULTS: Higher educational level, socio-economic status and recent social engagement were associated with better cross-sectional global cognition. In those with normal cognition at baseline, higher educational level was associated with better global cognition after 4 years. Increasing age and low levels of a measure of recent social engagement were associated with an increased risk of dementia. CONCLUSIONS: Higher cognitive reserve has a beneficial effect on performance on cognitive tests and a limited effect on cognitive decline and dementia risk in PD.

An exploration of worry content and catastrophic thinking in middle-aged and older-aged adults with and without Parkinson's disease.

OBJECTIVE: Worry is a common and distressing problem in Parkinson's disease (PD). However, little is known about the nature and content of worry in PD and how it might differ to non-PD populations. The study aimed to explore the content and nature of worry in middle-aged and older-aged adults with and without PD. METHOD: Four groups of participants, 20 PD patients (10 high worry and 10 low worry) and 19 middle-aged and older-aged adults (10 high worry and nine low worry), completed the catastrophising interview (CI) for three worry topics. Worriers were classified (high/low) on the basis of Penn State Worry Questionnaire scores. Data were analysed using framework analysis. RESULTS: High worriers showed a greater diversity of worry topics than low worriers. Health worries differentiated high and low worriers in the non-PD sample but were common across all PD participants. The CI revealed that the root concern of worry was often different to that initially described. In particular, PD high worriers were more likely to express underlying concerns about negative self-perception and death/severe incapacity. CONCLUSION: The CI was able to identify the root cause of worry, demonstrating the value of this technique in the exploration and treatment of worry and psychological distress. Exploring worry content may help to distinguish patients with problematic worry, with worries about self-perception and death/severe incapacity characteristic of high worriers. Therapeutic interventions designed to alleviate problematic worry and distress in PD need to take account of the realities of living with PD and the potentially realistic nature of worries that may appear catastrophic in a healthy population.

Nonmotor versus motor symptoms: how much do they matter to health status in Parkinson's disease?

Evidence suggests that both motor and nonmotor symptoms contribute to health status in Parkinson's disease. Less clear is how much change in health status can be expected if these clinical variables change. In addition, anxiety, separate from depression, has rarely been examined as a predictor of health status. We used hierarchical multiple regression analysis and standardized beta coefficients in a prevalent cohort of 462 patients with Parkinson's disease to explore the relative impact on health status (measured using the Parkinson's Disease Questionnaire) of 5 well-recognized symptom domains in Parkinson's disease: motor signs, depression, anxiety, cognition, and other nonmotor symptoms. In the health status scores, 19.6% of variance was explained by age, number of comorbidities, disease duration, and levodopa equivalent dose. Younger age predicted worse health status. A full regression model containing baseline variables and all 5 symptom domains explained 56% of the variance in health status. The standardized beta coefficient for depression was 2.1, 1.6, and 1.3 times that of motor signs, anxiety, and other nonmotor symptoms, respectively. Our findings provide a ranking order of clinical variables for their relative impact on health status in Parkinson's disease and show that depression has more than twice the impact of motor signs on health status. Anxiety and other nonmotor symptoms are also important separate determinants of poor health status in Parkinson's disease. Our results will help to guide the development of individual care and service planning for patients with Parkinson's disease.

Parkinson's disease motor subtypes and mood.

Parkinson's disease is heterogeneous, both in terms of motor symptoms and mood. Identifying associations between phenotypic variants of motor and mood subtypes may provide clues to understand mechanisms underlying mood disorder and symptoms in Parkinson's disease. A total of 513 patients were assessed using the Hospital Anxiety and Depression Scale, and separately classified into anxious, depressed, and anxious-depressed mood classes based on latent class analysis of a semistructured interview. Motor subtypes assessed related to age-of-onset, rate of progression, presence of motor fluctuations, lateralization of motor symptoms, tremor dominance, and the presence of postural instability and gait symptoms and falls. The directions of observed associations tended to support previous findings with the exception of lateralization of symptoms, for which there were no consistent or significant results. Regression models examining a range of motor subtypes together indicated increased risk of anxiety in patients with younger age-of-onset and motor fluctuations. In contrast, depression was most strongly related to axial motor symptoms. Different risk factors were observed for depressed patients with and without anxiety, suggesting heterogeneity within Parkinson's disease depression. Such association data may suggest possible underlying common risk factors for motor subtype and mood. Combined with convergent evidence from other sources, possible mechanisms may include cholinergic system damage and white matter changes contributing to non-anxious depression in Parkinson's disease, while situational factors related to threat and unpredictability may contribute to the exacerbation and maintenance of anxiety in susceptible individuals.

Why don't older adults with subjective memory complaints seek help?

BACKGROUND: Subjective memory complaints (SMCs) are common among older adults, often causing significant distress and showing strong relationships to future cognitive decline. However, low rates of help-seeking for memory complaints are well documented. Little is known about the reasons behind the decision to seek or not to seek help with memory problems. The common-sense model of illness perception proposes that the beliefs people hold about their health underlie help-seeking behaviour. The present study investigated factors underlying the decision to seek help in people with SMCs within the framework of the common-sense model of illness perception. METHODS: Cognition, illness perceptions, coping styles, depression and anxiety were assessed in 98 adults with SMCs, aged 50 years and above, including 60 attending a memory clinic and 38 non-help-seekers. RESULTS: Objective cognitive performance did not differ between participants who had sought help and those who had not. Logistic regression revealed that illness perceptions including social comparison and causal attributions predict help-seeking behaviour. More general coping style did not predict help-seeking. Furthermore, participants who had sought help were more likely to have had a close relative with dementia. CONCLUSIONS: The results suggest that beliefs about memory, rather than objective cognitive impairment, are associated with the decision to seek help for SMCs. The findings suggest that providing education regarding memory problems, in particular challenging causal attributions, may help to encourage help-seeking in people with SMCs and improve care in the early stages of dementia.

Cognition, coping, and outcome in Parkinson's disease.

BACKGROUND: Cognitive impairment and depression are common and disabling non-motor symptoms of Parkinson's disease (PD). Previous studies have shown associations between them but the nature of the relationship remains unclear. In chronic illness, problem- or task-oriented coping strategies are associated with better outcome but often require higher level cognitive functioning. The present study investigated, in a sample of patients with PD, the relationships between cognitive function, choice of coping strategies, and a broad index of outcome including depression, anxiety, and health-related quality of life (QoL). It was hypothesized that the coping strategy used could mediate the association between cognition and outcome. METHODS: 347 participants completed the Coping Inventory for Stressful Situations, the Hospital Anxiety and Depression Scale, the Parkinson's Disease Questionnaire-8, the Unified Parkinson's Disease Rating Scale, and the Addenbrooke's Cognitive Examination-Revised. Structural Equation Modeling was used to test the hypothesized model of cognition, coping, and outcome based on a direct association between cognition and outcome and an indirect association mediated by coping. RESULTS: Overall, poorer cognition predicted less use of task-oriented coping, which predicted worse outcome (a latent variable comprised of higher depression and anxiety and lower QoL). The analyses suggested a small indirect effect of cognition on outcome mediated by coping. CONCLUSIONS: The findings suggest that patients who fail to employ task-oriented coping strategies may be at greater risk of depression, anxiety, and poor health-related QoL. Even mild to moderate cognitive impairment may contribute to reduced use of task-oriented coping. Suitably adapted cognitive-behavioral approaches may be useful to enable the use of adaptive coping strategies in such patients.

Predictors of cognitive dysfunction after cardiac surgery: a systematic review.

AIMS: Postoperative cognitive dysfunction (POCD) is often experienced by cardiac surgery patients; however, it is not known if some groups of patients experience this more frequently or severely than others.The aim of this systematic review was to identify preoperative and postoperative predictors of cognitive dysfunction in adults following cardiac surgery. METHODS AND RESULTS: Eight bibliographic databases were searched (January 2005 to March 2021) in relation to cardiac surgery and cognition. Studies including adult patients who had undergone open cardiac surgery and using a validated measurement of cognitive function were included. Full-text review for inclusion, quality assessment, and data extraction were undertaken independently by two authors. A total of 2870 papers were identified, of which 36 papers met the inclusion criteria and were included in the review. The majority were prospective observational studies [n = 28 (75.7%)]. In total, 61 independent predictors (45 preoperative and 16 postoperative) were identified as significant in at least one study; advancing age and education level appear important. Age has emerged as the most common predictor of cognitive outcome. CONCLUSION: Although a number of predictors of POCD have been identified, they have inconsistently been reported as significantly affecting cognitive outcome. Consistent with previous research, our findings indicate that older patients and those with lower educational levels should be prioritized when developing and trialling interventions to improve cognitive function. These findings are less than surprising if we consider the methodological shortcomings of included studies. It is evident that further high-quality research exploring predictors of POCD is required. REGISTRATION: This review was registered on Prospero, CRD42020167037.

Depression and anxiety related subtypes in Parkinson's disease.

BACKGROUND: Depression and anxiety are common in Parkinson's disease (PD) and although clinically important remain poorly understood and managed. To date, research has tended to treat depression and anxiety as distinct phenomena. There is growing evidence for heterogeneity in PD in the motor and cognitive domains, with implications for pathophysiology and outcome. Similar heterogeneity may exist in the domain of depression and anxiety. OBJECTIVE: To identify the main anxiety and depression related subtype(s) in PD and their associated demographic and clinical features. METHODS: A sample of 513 patients with PD received a detailed assessment of depression and anxiety related symptomatology. Latent Class Analysis (LCA) was used to identify putative depression and anxiety related subtypes. Results LCA identified four classes, two interpretable as 'anxiety related': one anxiety alone (22.0%) and the other anxiety coexisting with prominent depressive symptoms (8.6%). A third subtype (9%) showed a prominent depressive profile only without significant anxiety. The final class (60.4%) showed a low probability of prominent affective symptoms. The validity of the four classes was supported by distinct patterns of association with important demographic and clinical variables. CONCLUSION: Depression in PD may manifest in two clinical phenotypes, one 'anxious-depressed' and the other 'depressed'. However, a further large proportion of patients can have relatively isolated anxiety. Further study of these putative phenotypes may identify important differences in pathophysiology and other aetiologically important factors and focus research on developing more targeted and effective treatment.

Perceptions of memory problems are more important in predicting distress in older adults with subjective memory complaints than coping strategies.

BACKGROUND: There is a high prevalence of subjective memory complaints (SMCs) amongst older adults, many of whom experience significant distress. It remains unclear why some older adults with SMCs experience more distress than others. The Common Sense Model of Illness Perceptions has been used to explain patients' differential response to illness based on the beliefs they hold about their illness and subsequent selection of coping strategies. The present study aimed to examine the role of perceptions and coping styles in predicting anxiety and depression in older adults with SMCs. METHODS: 98 participants with SMCs completed the Illness Perception Questionnaire for Memory Problems (IPQ-M), Ways of Coping Questionnaire (WCQ), Geriatric Depression Scale (GDS) and Beck Anxiety Inventory (BAI). Multiple regression analysis was used to determine the contribution of illness perceptions and coping to the explanation of variance in depression and anxiety. RESULTS: Perceptions of SMCs were found to predict both depression and anxiety while coping strategies did not. Perceptions of serious consequences of SMCs and causal attributions predicted greater depression, while attribution of memory problems to lack of blood to the brain was the only predictor of increased anxiety. CONCLUSIONS: Illness perceptions predicted depression and anxiety in older adults with SMCs. Contrary to the Common-Sense Model coping style was not found to be an important determinant of psychological distress. The findings provide a basis for developing interventions to reduce psychological distress in older adults with subjective memory complaints. Targeting causal attributions and perceived consequences of SMCs may help to improve well-being.

Perceptions of subjective memory complaint in older adults: the Illness Perception Questionnaire-Memory (IPQ-M).

BACKGROUND: Subjective Memory Complaints (SMCs) are common among middle-aged and older adults and are often a source of distress and worry. However, rates of help-seeking are low. Investigating perceptions of SMCs may help us better to understand psychological reactions to SMCs and help-seeking behavior. The present study had two aims: (i) to investigate whether the dimensions drawn from the Common Sense Model of Illness Perception (Leventhal et al., 1984) provide a valid model of perceptions held by patients with SMCs; and (ii) to develop a questionnaire to measure these perceptions. METHODS: Qualitative interviews to explore perceptions of SMCs were conducted with 32 participants recruited from a memory clinic and community groups. Information from these interviews was utilized to adapt the Illness Perception Questionnaire-Revised (IPQ-R) for use with patients with SMCs. Ninety-eight such patients then completed the adapted questionnaire along with measures of cognition, depression and subjective memory function. RESULTS: The dimensions of illness perception measured by the IPQ-R were present in participant accounts of SMCs with the exception of Timeline Cyclical. The adapted measure (IPQ-M) showed good validity and reliability. CONCLUSIONS: The development of the IPQ-M provides opportunities for further investigation of illness perceptions and their relationship to psychological distress and help-seeking behavior in SMCs. Furthermore, investigation of these relationships may provide a basis from which to develop interventions to improve well-being and help-seeking in older adults with SMCs.

Prioritising target non-pharmacological interventions for research in Parkinson's disease: achieving consensus from key stakeholders.

BACKGROUND: In 2014 Parkinson's UK conducted a research prioritisation exercise with stakeholders highlighting important clinical research questions. The exercise highlighted the need for effective interventions to be developed and tested to tackle a range of non-motor symptoms including: sleep quality, stress and anxiety, mild cognitive impairment, dementia and urinary problems. The present work set out to build on this exercise by prioritising types of non-pharmacological interventions to be tested to treat the identified non-motor symptoms. METHODS: A Patient and Public Involvement exercise was used to reach consensus on intervention priorities for the treatment of non-motor symptoms. A Delphi structure was used to support the feedback collected. A first-round prioritisation survey was conducted followed by a panel discussion. Nineteen panellists completed the first-round survey (9 people with Parkinson's and 10 professionals working in Parkinson's) and 16 participated in the panel discussion (8 people with Parkinson's and 8 professionals working in Parkinson's). A second-round prioritization survey was conducted after the panel discussion with 13 people with Parkinson's. RESULTS: Physical activity, third wave cognitive therapies and cognitive training were rated as priority interventions for the treatment of a range of non-motor symptoms. There was broad agreement on intervention priorities between health care professionals and people with Parkinson's. A consensus was reached that research should focus on therapies which could be used to treat several different non-motor symptoms. In the context of increasing digitisation, the need for human interaction as an intervention component was highlighted. CONCLUSION: Bringing together Parkinson's professionals and people with Parkinson's resulted in a final treatment priority list which should be both feasible to carry out in routine clinical practice and acceptable to both professionals and people with Parkinson's. The workshop further specified research priorities in Parkinson's disease based on the current evidence base, stakeholder preferences, and feasibility. Research should focus on developing and testing non-pharmacological treatments which could be effective across a range of symptoms but specifically focusing on tailored physical activity interventions, cognitive therapies and cognitive training.

Barriers to reporting non-motor symptoms to health-care providers in people with Parkinson's.

BACKGROUND: Non-motor symptoms (NMS) are common in Parkinson's disease (PD) and cause significant distress. A high rate of non-declaration of NMS by patients to healthcare providers (HCP) means that many NMS remain untreated. Current understanding of the factors preventing disclosure of NMS to HCPs is limited. The present study aimed to i) further assess the prevalence of NMS and associated distress, ii) establish current rates of NMS reporting across a range of sources, and iii) explore overall and any symptom specific barriers to help-seeking for NMS. METHODS: 358 PD patients completed a cross-sectional survey of NMS severity, reporting and barriers to help-seeking. A series of Generalised Estimating Equations were used to determine whether barriers were symptom specific. RESULTS: A mean of 10.5 NMS were reported by each patient. Rates of non-reporting of NMS ranged from 15 to 72% of those experiencing distressing symptoms. The most commonly reported barriers to help-seeking were acceptance of symptoms; lack of awareness that a symptom was associated with PD, and belief that no effective treatments were available. Symptom specific barriers were found for sexual dysfunction (embarrassment), unexplained pain and urinary problems (belief about lack of treatment availability). CONCLUSION: A diverse range of barriers prevent PD patients reporting NMS to HCPs and these barriers differ between NMS. The study provides the foundations for developing interventions to increase reporting by targeting individual NMS. Increasing rates of help-seeking for NMS by patients to their Parkinson's healthcare providers will increase appropriate clinical care which may improve quality of life and well-being.

Identifying barriers to help-seeking for non-motor symptoms in people with Parkinson's disease.

Non-motor symptoms of Parkinson's disease have a significant impact on quality of life. Despite this, many non-motor symptoms remain unreported by patients and consequently untreated. This study explored barriers to help-seeking using two theoretical frameworks, the Common Sense Model of illness perception and Theoretical Domains Framework. A total of 20 participants completed semi-structured interviews to explore symptom beliefs and help-seeking behaviour. Uncertainty about the relationship of non-motor symptoms to Parkinson's disease and lack of clarity around treatments were common. Embarrassment and communication difficulties were common for potentially sensitive symptoms such as sexual dysfunction. Symptom perceptions and beliefs about help-seeking acted as barriers to reporting non-motor symptoms.