3,171 research outputs found
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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
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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
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Mixed experiences and perceptions of psychological treatment for chronic pain in Singapore: Skepticism, ambivalence, satisfaction and potential
There is little research in Southeast Asia focusing on patientsâ experiences of seeking psychological treatment for chronic pain.
Objective: This study aims to understand the experiences of patients seeking psychological treatment for chronic pain in this region.
Setting: Outpatient pain clinic at a tertiary hospital in Singapore.
Subjects: People with experiences of attending psychological treatment for chronic pain, including some who were not receiving this type of treatment.
Study design and methods: Fifteen inductive semi-structured interviews were conducted to explore patientsâ experiences regarding psychological treatment for their chronic pain. Thematic analysis was then applied.
Results: Three main themes were identified: âExpectations and Realities of Health Professionalsâ, âPatientsâ Attitudes and Beliefsâ and âPractical and Social Factors.â From the patientsâ perspectives, an empathetic health professional who was willing to listen contributed to a positive treatment seeking experience. Patients felt that health professionalsâ lack of knowledge about appropriate treatment contributed to their frustration. Patients could not understand how psychological treatment was related to pain treatment and queried why they were âpaying just to talkâ. On the other hand, their experiences were quite positive, and they found psychological treatments helpful when they participated in them.
Conclusion: Education for both patients and health professionals unfamiliar with psychological treatments for pain may improve access to these treatments
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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, parentsâ expressed emotion and psychological well-being on offspringâs 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 adolescentsâ internalising symptoms at 6-month follow-up (Îłdep=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 (ÎłEE=4.35, p=.052). There was no direct effect of severity, duration or type of multiple sclerosis on adolescentsâ 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 adolescentsâ psychological difficulties
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Healthcare Professionalsâ Perceptions of Psychological Treatment for Chronic Pain in Singapore: Challenges, Barriers and the Way Forward
Purpose: There are very few studies on healthcare providersâ 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 professionalsâ experiences of treating people with chronic pain. Interviews were transcribed verbatim and analysed using thematic analysis. Results: Four main themes were identified: âSystem Barriersâ, âCore Beliefs and management of Chronic Painâ, âEngaging Patients in treatmentââ, and âCreating Awareness for Chronic Pain Management.â 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 24â66 (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 âadaptive,â ânegative,â and ânegative somaticâ), 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]: 14.29â20.22 and MD = 13.20, CI: 9.45â16.96 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
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Adjustment modes in the trajectory of progressive multiple sclerosis: a qualitative study and conceptual model
Objective: We examined cognitive and behavioural challenges and adaptations for people with progressive multiple sclerosis (MS) and developed a preliminary conceptual model of changes in adjustment over time.
Design: Using theoretical sampling, 34 semi-structured interviews were conducted with people with MS. Participants were between 41 and 77 years of age. Thirteen were diagnosed with primary progressive MS and 21 with secondary progressive MS. Data were analysed using a grounded theory approach.
Results: Participants described initially bracketing the illness off and carrying on their usual activities but this became problematic as the condition progressed and they employed different adjustment modes to cope with increased disabilities. Some scaled back their activities to live a more comfortable life, others identified new activities or adapted old ones, whereas at times, people disengaged from the adjustment process altogether and resigned to their condition. Relationships with partners, emotional reactions, environment and perception of the environment influenced adjustment, while people were often flexible and shifted among modes.
Conclusions: Adjusting to a progressive condition is a fluid process. Future interventions can be tailored to address modifiable factors at different stages of the condition and may involve addressing emotional reactions concealing/revealing the condition and perceptions of the environment
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 (ÂŁ1610, 95% CI, âÂŁ187 to 3771) and slightly better QALYs (0.0053, 95% CI, â0.059 to 0.103) compared to SL but these differences were not statistically significant. This yielded ÂŁ301,509 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 ÂŁ821 from the same perspective. Using a ÂŁ20,000, 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
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
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
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