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

Multiple challenges for people after transitioning to secondary progressive multiple sclerosis: a qualitative study

Objectives Transitioning to secondary progressive multiple sclerosis (SPMS) is demanding for both patients and healthcare professionals. The particular challenges and the ways patients cope are poorly understood. The present study examines what challenges people face when diagnosed with SPMS by exploring experiences of people who have transitioned recently (up to 5 years). Design Semistructured qualitative interviews at two time points a year apart. Interviews were analysed using inductive thematic analysis. Setting UK. Participants We interviewed 21 people at baseline and 17 participated in the follow-up interviews. Results The majority of participants reported expecting to transition to SPMS, and the diagnosis did not make much difference to them. Participants described increasing emotional and physical challenges after transitioning to SPMS and between the first and second interviews. Planning, using distractions and maintaining social roles helped participants cope with the increased challenges. The same coping strategies were used between the two interviews. Participants felt there was not much left to do regarding the management of their symptoms. A key theme was the sense of abandonment from healthcare services after transitioning to SPMS. Conclusions After transitioning to SPMS, people are faced with multiple challenges. Participants described a lack of directions for symptoms management and lack of support from the healthcare system. An integrated multidisciplinary healthcare approach is crucial at the progressive stage of the disease to alleviate feelings of helplessness and promote symptom management

Parents' expressed emotion and mood, rather than their physical disability are associated with adolescent adjustment. A longitudinal study of families with a parent with multiple sclerosis

Objective. This study investigated the impact of the severity of parental multiple sclerosis, parents’ expressed emotion and psychological well-being on offspring’s psychological difficulties. Design: A longitudinal study including baseline and 6-month follow-up data collected from parents and children. Subjects: Adolescents (n=75), their parents with multiple sclerosis (n=56) and the partner without multiple sclerosis (n=40) Main measures: Parents completed the Hospital Anxiety and Depression Scale and the Five Minutes Speech Sample, a standardised interview of expressed emotion towards their child. Parents with multiple sclerosis also completed the Expanded Disability Status Scale, a measure of illness severity. Adolescents completed the Strength and Difficulties Questionnaire, a self-report measure of psychological difficulties. Results: Higher depression scores of the parents with multiple sclerosis at baseline correlated with increased adolescents’ internalising symptoms at 6-month follow-up (γdep=0.31, p=.004). Higher expressed emotion scores of parents with multiple sclerosis at baseline were associated with increased adolescent externalising symptoms at 6-month follow-up (γEE=4.35, p=.052). There was no direct effect of severity, duration or type of multiple sclerosis on adolescents’ adjustment at baseline or follow-up. Conclusions: Emotional distress and expressed emotion in parents with multiple sclerosis, rather than the severity and type of multiple sclerosis had an impact on adolescents’ psychological difficulties

Healthcare Professionals’ Perceptions of Psychological Treatment for Chronic Pain in Singapore: Challenges, Barriers and the Way Forward

Purpose: There are very few studies on healthcare providers’ experiences of delivering treatment for chronic pain in a Southeast Asian setting. The aims of this study are to understand the experiences of professionals delivering treatment for people with chronic pain in Singapore and identify possible barriers to psychological treatment for this condition within the broader experiences of these professionals. Method: Healthcare professionals with at least one year experience treating chronic pain were recruited and purposefully sampled. Fifteen inductive semi-structured interviews were conducted to explore healthcare professionals’ experiences of treating people with chronic pain. Interviews were transcribed verbatim and analysed using thematic analysis. Results: Four main themes were identified: ‘System Barriers’, ‘Core Beliefs and management of Chronic Pain’, ‘Engaging Patients in treatment’’, and ‘Creating Awareness for Chronic Pain Management.’ Professionals trained in a multidisciplinary approach to pain management were seen as rare. Professionals who could refer patients for psychological treatment do not refer due to costs, and their perception that patients may lack understanding of such a treatment. Conclusion: Reducing barriers in the access to psychological treatment in settings like Singapore will require a multifaceted approach

Distinct Illness Representation Profiles Are Associated with Anxiety in Women Testing Positive for Human Papillomavirus

Background: Testing positive for human papillomavirus (HPV) at cervical cancer screening has been associated with heightened anxiety. To date, the cognitive determinants of heightened anxiety remain unclear, making it difficult to design effective interventions. Purpose: This study investigated latent illness representation profiles in women testing positive for HPV with no abnormal cells (normal cytology) and explored associations between these profiles and anxiety. Methods: Women aged 24–66 (n = 646) who had tested HPV-positive with normal cytology at routine HPV primary screening in England completed a cross-sectional survey shortly after receiving their result. Results: Latent profile analysis identified three distinct profiles of illness representations (termed “adaptive,” “negative,” and “negative somatic”), which differed significantly in their patterns of illness perceptions. Hierarchal linear regression revealed that these latent illness representation profiles accounted for 21.8% of the variance in anxiety, after adjusting for demographic and clinical characteristics. When compared with adaptive representations (Profile 1), women with negative representations (Profile 2) and negative somatic representations (Profile 3) had significantly higher anxiety, with clinically meaningful between-group differences (mean difference [MD] = 17.26, confidence interval [CI]: 14.29–20.22 and MD = 13.20, CI: 9.45–16.96 on the S-STAI-6, respectively). Conclusion: The latent illness representation profiles identified in this study provide support for the role of negative beliefs contributing to anxiety in women testing HPV-positive with normal cytology. Characteristics specific to subgroups of highly anxious women (Profiles 2 and 3) could be used by policymakers to target information in routine patient communications (e.g., test result letters) to reduce unnecessary burden. Future research should adopt longitudinal designs to understand the trajectory of illness representations from HPV diagnosis through to clearance versus persistence

Cost-effectiveness of nurse-delivered cognitive behavioural therapy (CBT) compared to supportive listening (SL) for adjustment to multiple sclerosis

Background: Cognitive Behavioural Therapy (CBT) reduces distress in multiple sclerosis, and helps manage adjustment, but cost-effectiveness evidence is lacking. Methods: An economic evaluation was conducted within a multi-centre trial. 94 patients were randomised to either eight sessions of nurse-led CBT or supportive listening (SL). Costs were calculated from the health, social and indirect care perspectives, and combined with additional quality-adjusted life years (QALY) or improvement on the GHQ-12 score, to explore cost-effectiveness at 12 months. Results: CBT had higher mean health costs (£1610, 95% CI, −£187 to 3771) and slightly better QALYs (0.0053, 95% CI, −0.059 to 0.103) compared to SL but these differences were not statistically significant. This yielded £301,509 per QALY improvement, indicating that CBT is not cost-effective according to established UK NHS thresholds. The extra cost per patient improvement on the GHQ-12 scale was £821 from the same perspective. Using a £20,000, threshold, CBT in this format has a 9% probability of being cost effective. Although subgroup analysis of patients with clinical levels of distress at baseline showed an improvement in the position of CBT compared to SL, CBT was still not cost-effective. Conclusion: Nurse delivered CBT is more effective in reducing distress among MS patients compared to SL, but is highly unlikely to be cost-effective using a preference-based measure of health (EQ-5D). Results from a diseasespecif ic measure (GHQ-12) produced comparatively lower Incremental Cost-Effectiveness Ratios, but there is currently no acceptable willingness-to-pay threshold for this measure to guide decision-making

Fatigue interventions in long term, physical health conditions: A scoping review of systematic reviews.

OBJECTIVE: Fatigue is prominent across many long term physical health conditions. This scoping review aimed to map the fatigue intervention literature, to ascertain if certain interventions may be effective across conditions, and if novel interventions tested in specific long term conditions may be promising for other conditions. METHODS: Scoping review methodological frameworks were used. Electronic bibliographic databases were searched (inception to November 2016) for systematic reviews of fatigue interventions in long term conditions. Inclusion criteria were: long term physical health condition; review focus on fatigue management; objective and systematic review process; primary review outcome is fatigue. Articles focussing on surgical interventions or treatments thought to trigger fatigue were excluded. A narrative synthesis was performed. RESULTS: Of 115 full texts screened, 52 reviews were included. Interventions were categorised as pharmacological and non-pharmacological (exercise, psychological/behavioural and complementary medicine). Pharmacological interventions did not consistently demonstrate benefit, except for anti-TNFs and methylphenidate which may be effective at reducing fatigue. Non-pharmacological interventions such as graded exercise and fatigue-specific psychological interventions may be effective, but heterogeneous intervention components limit conclusions. 'Complementary medicine' interventions (e.g. Chinese herbal medicines) showed promise, but the possibility of publication bias must be considered. CONCLUSIONS: Further research is necessary to inform clinical practice. The reported effectiveness of some interventions across inflammatory health conditions, such as anti-TNFs, aerobic exercise, and psychologically based approaches such as CBT, highlights a potential transdiagnostic avenue for fatigue management. More novel strategies that may be worth exploring include expressive writing and mindfulness, although the mechanisms for these in relation to fatigue are unclear. More work is needed to identify transdiagnostic mechanisms of fatigue and to design interventions based on these

Defining routine fatigue care in Multiple Sclerosis in the United Kingdom: What treatments are offered and who gets them?

Background Fatigue is common and disabling in Multiple Sclerosis (MS). A recent meta-analytic systematic review reported 113 trials of exercise and behavioural interventions for fatigue, yet patients consistently describe fatigue being under-treated. The extent of the research-to-practice gap is yet to be documented. Objective To describe what fatigue treatments people with MS (pwMS) in the United Kingdom (UK) have been offered. Methods A cross-sectional survey of pwMS on the UK MS Register (UKMSR). Data on fatigue treatments offered were collected using an online questionnaire developed with patient input and summarised using descriptive statistics. Sociodemographic, MS-related, and psychological factors associated with treatment offered were evaluated using a logistic regression model. Results 4,367 respondents completed the survey, 90.3% reported experiencing fatigue. Of these, 30.8% reported having been offered at least one type of pharmacological/non-pharmacological treatment for fatigue. Pharmacological treatments were more commonly offered (22.4%) compared to non-pharmacological treatments (12.6%; 2.9% exercise and 5.9% behavioural therapy). In the logistic regression model, older age, working, shorter time since MS diagnosis, and lower fatigue were associated with lower odds of having been offered treatment for fatigue. Conclusion This study accentuates the extent of the unmet need for fatigue treatment in MS in the UK. </jats:sec

Patients' treatment beliefs in low back pain: development and validation of a questionnaire in primary care

Choosing the most appropriate treatment for individual patients with low back pain (LBP) can be challenging, and clinical guidelines recommend taking into account patients' preferences. However, no tools exist to assess or compare patients' views about LBP treatments. We report the development and validation of the LBP Treatment Beliefs Questionnaire (LBP-TBQ) for use across different treatments in clinical practice and research. Using qualitative data we developed a pool of items assessing perceived credibility, effectiveness, concerns about and individual 'fit' of specific treatments. These items were included in a survey completed by 429 primary care patients with LBP, of whom 115 completed it again 1 to 2 weeks later. We performed psychometric analyses using non-parametric item response theory and classical test theory. The four subscales of the resulting 16-item LBP-TBQ showed good homogeneity (H=.46-.76), internal consistency (α =.73-.94), and stability (r=.63-.83), confirmed most convergent and discriminant validity hypotheses, and had acceptable structural validity for four guideline-recommended treatments: pain medication, exercise, manual therapy and acupuncture. Participants with stronger positive treatment beliefs were more likely to rank that treatment as their first choice, indicating good criterion validity (t values=3.11-9.80, all p<.01, except pain medication effectiveness beliefs, t(339)=1.35; p=.18). A short 4-item version also displayed good homogeneity (H=.43-.66), internal consistency (α=.70-.86), and stability (r=.82-.85), and was significantly related to treatment choice (t values=4.33-9.25, all p<.01). The LBP-TBQ can be used to assess treatment beliefs in primary care patients with LBP and to investigate the effects of treatment beliefs on treatment uptake and adherence.This is an open access article distributed under the terms of the Creative Commons Attribution-Noncommercial No Derivatives 3.0 License, which permits downloading and sharing the work provided it is properly cited. The work cannot be changed in any way or used commercially

Distress improves after mindfulness training for progressive MS: a pilot randomised trial

Background. Mindfulness-based interventions have been shown to effectively reduce anxiety, depression and pain in patients with chronic physical illnesses. Objectives. We assessed the potential effectiveness and cost-effectiveness of a specially adapted Skype distant-delivered mindfulness intervention, designed to reduce distress for people affected by primary and secondary progressive MS. Methods. Forty participants were randomly assigned to the 8-week intervention (n=19) or a waiting-list control group (n=21). Participants completed standardised questionnaires to measure mood, impact of MS and symptom severity, quality of life and service costs at baseline, post-intervention and 3-month follow-up. Results. Distress scores were lower in the intervention group compared with the control group at post-intervention and follow-up (p<0.05), effect size -.64 post-intervention and -.94 at follow-up. Mean scores for pain, fatigue, anxiety, depression, impact of MS were reduced for the mindfulness group compared with control group at post-therapy and follow-up; effect sizes ranging from -.27 to -.99 post-intervention and -.29 to -1.12 at follow-up. There were no differences in quality-adjusted life years, but an 87.4% probability that the intervention saves on service costs and improves outcome. Conclusions: A mindfulness intervention delivered through Skype video conferences appears accessible, feasible and potentially effective and cost-effective for people with progressive MS