Cost-effectiveness of cognitive behavioural and personalized exercise interventions for reducing fatigue in inflammatory rheumatic diseases.

OBJECTIVES: To estimate the cost-effectiveness of a cognitive behavioural approach (CBA) or a personalized exercise programme (PEP), alongside usual care (UC), in patients with inflammatory rheumatic diseases who report chronic, moderate to severe fatigue. METHODS: A within-trial cost-utility analysis was conducted using individual patient data collected within a multicentre, three-arm randomized controlled trial over a 56-week period. The primary economic analysis was conducted from the UK National Health Service (NHS) perspective. Uncertainty was explored using cost-effectiveness acceptability curves and sensitivity analysis. RESULTS: Complete-case analysis showed that, compared with UC, both PEP and CBA were more expensive [adjusted mean cost difference: PEP £569 (95% CI: £464, £665); CBA £845 (95% CI: £717, £993)] and, in the case of PEP, significantly more effective [adjusted mean quality-adjusted life year (QALY) difference: PEP 0.043 (95% CI: 0.019, 0.068); CBA 0.001 (95% CI: -0.022, 0.022)]. These led to an incremental cost-effectiveness ratio (ICER) of £13 159 for PEP vs UC, and £793 777 for CBA vs UC. Non-parametric bootstrapping showed that, at a threshold value of £20 000 per QALY gained, PEP had a probability of 88% of being cost-effective. In multiple imputation analysis, PEP was associated with significant incremental costs of £428 (95% CI: £324, £511) and a non-significant QALY gain of 0.016 (95% CI: -0.003, 0.035), leading to an ICER of £26 822 vs UC. The estimates from sensitivity analyses were consistent with these results. CONCLUSION: The addition of a PEP alongside UC is likely to provide a cost-effective use of health care resources.

Psychological well-being in persons with dementia: The role of caregiver expressed emotion.

OBJECTIVES: Dementia is a growing health concern. Persons with dementia experience higher levels of anxiety and depression, which correlates with poorer quality of life, disability and hospitalization. This is one of the few studies to use a longitudinal design to assess the impact of expressed emotion (EE) on well-being in dementia over time. METHODS: Sixty-one people with dementia and their main informal caregiver were recruited from memory services. Caregiver EE was coded from a Camberwell Family Interview conducted at time one. Person with dementia's outcome measures (quality of life, depression and anxiety) were collected at time one and at 6-months follow-up. RESULTS: Caregiver high EE was associated with higher levels of depression in people with dementia and greater anxiety at follow-up. Emotional over involvement predicted greater anxiety and critical comments predicted greater depression. Low EE appeared to have a protective effect on well-being in people with dementia. People with dementia with low EE caregivers experienced a small reduction in depression and anxiety over time, whereas those with high-EE caregivers maintained baseline levels of depression and anxiety. CONCLUSIONS: Caregiver high EE is associated with poorer psychological outcomes for people with dementia over time. Psychological therapies, such as cognitive behavioural therapy informed family interventions should be used to reduce high EE within carer and person with dementia relationships.

Patients' Experiences of Deciding Whether or Not to Accept Bone Conduction Hearing Implants: A Qualitative Investigation.

OBJECTIVES: Bone conduction hearing implants (BCHIs) are an effective option to rehabilitate hearing for people who cannot use conventional, air conduction hearing aids. However, the uptake of such devices in the United Kingdom is lower than might be expected, and the reasons for this are not fully understood. The present study used qualitative methods to explore decision-making about whether to accept or reject BCHIs. DESIGN: Semistructured telephone interviews were conducted with 17 BCHI candidates who had recently accepted or rejected BCHIs. RESULTS: A thematic analysis identified four overarching themes: participants wanted to look and feel normal; potential risks were weighed against rewards; participants felt that there was a "right time" to have a BCHI; and information from clinicians and BCHI users was treated differently. Participants' perceptions of normality were influential in the final decision, and the BHCI was seen either as a barrier or facilitator of this. Participants consistently weighed up potential advantages and disadvantages of BCHIs, with potential for hearing improvement typically used as a benchmark against which other factors were measured. Some participants who rejected BCHIs felt that they could reconsider having a BCHI when they felt the time was right for them. Participants highly valued advice from clinicians, but felt that their expertise lacked validity as clinicians typically did not have experience of using BCHIs themselves. CONCLUSIONS: The decision to accept or reject a BCHI was highly individual. Each participant considered a range of factors; the influence of each factor depended on the individual's perceptions and experiences. This work highlights the importance of clinical staff being able to explore the individual priorities and concerns of each patient to ensure that patients feel happy and confident with the decision that they make.

Investigating expressed emotion in individuals at-risk of developing psychosis and their families over 12 months.

High levels of expressed emotion (EE) are present in families of individuals with an at-risk mental state (ARMS) of psychosis and can negatively impact on service users' functioning and symptoms, as well as relatives' psychological wellbeing. OBJECTIVES: This is the first longitudinal study to assess EE from the family/carers' perspective, as well as the service users' perceptions of the family/carers' EE. We explored the effects of EE on transition risk and outcomes of depression, worry, and anxiety. METHODS: Questionnaires were completed by 70 ARMS individuals and 70 family/carers at three time points: baseline, 6 and 12 months. All participants completed measures of anxiety, depression, and worry, plus a version of the Family Questionnaire to assess EE. RESULTS: EE scores reduced over time for both service users and family/carers. High EE perceived by service users at 6 months was associated with higher transition to psychosis at 12 months. High-EE levels at baseline were associated with higher levels of service user depression and family/carer anxiety at 12 months. Higher family/carer total EE scores were associated with less contact with the service user and higher levels of worry. CONCLUSIONS: Novel implications suggest that interventions to reduce high EE in families of people with ARMS would benefit service users by protecting them from higher levels of depression and transition to psychosis. Reducing high-EE attitudes would also benefit the family/carers by reducing levels of anxiety and worry. Family interventions focussing on multiple perceptions of the home environment could help to direct services and prevent negative psychological outcomes for all family members.

Development of a measure for patients preparing to start dialysis and their partners: The Starting Dialysis Questionnaire (SDQ).

BACKGROUND: The transition onto dialysis is a stressful time that affects both patients and their partners. Research suggests that psychological and interpersonal characteristics within the couple are related to how well they adapt to dialysis. The aim of this multi-phase, mixed methods study was to develop a measure, the Starting Dialysis Questionnaire (SDQ), that is applicable to both patients and their partners and assesses their own thoughts and feelings about these constructs. METHODS: Data from semi-structured interviews with patients and their partners (n = 22 couples) were analysed using theoretical thematic analysis to identify and define constructs related to quality of life (QOL). Next, items addressing these constructs were derived from the interviews. Then, cognitive interviews were conducted with patients with chronic kidney disease and their partners (n = 5 couples) to assess the face validity and comprehensibility of the items. Lastly, preliminary psychometric properties were evaluated in a sample of patients preparing to start dialysis and their partners (n = 83 couples). RESULTS: Three themes related to QOL were identified, namely dialysis expectations, accepting dialysis and dyadic relationship characteristics. The cognitive interviews refined the SDQ and established its face validity. Psychometric assessments indicated that overall the items performed well and did not show significant floor or ceiling effects. Good internal consistency was found within the three domains, and items correlated within the domains. CONCLUSIONS: The SDQ is a measure (34 items) that assesses key psychological and interpersonal factors in patients and their partners as they start dialysis. It shows good preliminary psychometric properties; however, a large-scale field trial is needed to establish its validity. Once validated, it could offer a clinically useful tool to assist clinicians in preparing patients and partners for dialysis.

Quality of life improved for patients after starting dialysis but is impaired, initially, for their partners: a multi-centre, longitudinal study.

BACKGROUND: Quality of life (QOL) is important to patients with end stage renal disease and their partners. Despite the first 12 weeks being a critical time in the treatment pathway, limited research exists which examines how the transition onto dialysis impacts QOL. In this study we measured QOL in patients and their partners at pre-dialysis and over the first 12 weeks on dialysis to investigate QOL during this crucial period. METHODS: Patients and their partners, recruited from 10 renal units in England, completed questionnaires at pre-dialysis (n = 166 participants, 83 couples), 6 weeks (n = 90 participants, 45 couples) and 12 weeks (n = 78, 39 couples) after starting dialysis. On each occasion participants completed a QOL questionnaire (WHOQOL-BREF). Multilevel modelling accommodated the nested structure of couples with repeated measures within participants. Three-level random intercept models estimated changes in WHOQOL general QOL and its four domains (Physical, Psychological, Social and Environment). Two-level random intercept models assessed the relationship between baseline clinical and socio-demographic variables with changes in general QOL. RESULTS: Patients reported positive changes in general QOL from pre-dialysis to 6 weeks (ß = 0.42, p < 0.001, 95% CI 0.19, 0.65) and from pre-dialysis to 12 weeks (ß = 0.47, p < 0.001, 95% CI 0.24, 0.71). Partners' general QOL decreased significantly from pre-dialysis to 6 weeks (ß = - 0.24, p = 0.04, 95% CI -0.47, - 0.01) but returned to its original level at 12 weeks. Patients reported improvements in the physical domain between pre-dialysis and 12 weeks (ß = 6.56, p < 0.004, 95% CI 2.10, 11.03). No other domains changed significantly in patients or partners. Only in patients were there significant associations between moderator variables and general QOL. High comorbidity risk level and diabetes were associated with poorer QOL at pre-dialysis whereas being female and having an arteriovenous fistula were linked with improvements in general QOL. CONCLUSIONS: Patients reported significant improvements in their general and physical QOL after starting dialysis. Partners' general QOL worsened after patients started dialysis but improved by 12 weeks. Both patients and partners may benefit from additional educational and counselling services in the lead up to, and immediately after starting dialysis, which could facilitate the transition onto dialysis and improve QOL in both. STUDY REGISTRATION: This study was adopted on the NIHR Clinical Research Network (UK). The details of this study are registered on the Research Registry website (www.researchregistry.com). The identifier for this study is researchregistry2574.

Correction to: Quality of life improved for patients after starting dialysis but is impaired, initially, for their partners: a multi-centre, longitudinal study.

An amendment to this paper has been published and can be accessed via the original article.

Online support group users' perceptions and experiences of bone-anchored hearing aids (BAHAs): a qualitative study.

Objective: Better understanding of the decision-making process for bone-anchored hearing aid (BAHA) candidates has been identified by clinicians as a research priority. This study aimed to understand experiences and perceptions of BAHA candidates and users who use online support groups.Design: One thousand posts retrieved from a public UK-based online support group were thematically analysed.Study sample: Messages were posted by 270 BAHA users and candidates.Results: Individuals used the online group to obtain information about BAHAs and support for decision-making regarding accepting BAHA surgery and wearing a percutaneous device. BAHA users evaluated the efficacy of the system, perceiving it to be highly effective in improving their hearing. The BAHA influenced individuals' self-image and impacted their social lives. Fears of surgery and post-implantation infections were regarded as challenges to be faced when choosing to accept implantation.Conclusions: BAHA candidates found the online support group useful in helping them to decide whether or not to proceed with surgery, and the personal experiences of BAHA users were predominantly positive. However, it is not clear to what extent such positive experiences are representative of BAHA users more generally, and candidates need to be aware of this when using these groups to support decision-making.

Impact of Dialysis on the Dyadic Relationship Between Male Patients and Their Female Partners.

The objective of this study was to explore the impact of three early phases of renal dialysis, namely pre-dialysis, starting dialysis, and establishing dialysis, on dyadic relationships. Twenty UK-based dyads (20 male patients and their female partners) participated in semi-structured interviews and discussed the effects of dialysis on themselves and their relationship. Dyadic thematic analysis, facilitated by dyadic-level charting, integrated participants' experiences and enabled identification of patterns across dyads. We found that dialysis had positive and negative influences on identity, social relationships, and mental health, forming the themes: Prioritizing the Patient, Carrying the Burden, and Changing Identities. The final theme, Managing the Relationship, described how dyads prevented dialysis from negatively impacting their relationship. Dyadic-level charting provided a systematic examination of individual and dyadic experiences. These findings indicate that access to informational and support services for dyads as they prepare to start dialysis may minimize negative effects on their relationship.

Attachment and social support in romantic dyads: A systematic review.

OBJECTIVE: Taking a dyadic perspective, this systematic review examined the relationship between attachment constructs and differences in support behavior in romantic couples. METHOD: Four databases were searched including PsychINFO, Embase, OVOID MEDLINE, and AMED. Out of 2,401 unique references, 43 met the study inclusion criteria. RESULTS: The review findings offer validation for an attachment-based model of support processes in couples. Maladaptive support behaviors were more likely to occur when one or both members of a romantic dyad had an insecure attachment. Individuals with an avoidant or anxious attachment were more likely to provide poor quality support, and when receiving support, to interpret it in a negative manner. CONCLUSION: We recommend therapeutic interventions to help individuals with insecure attachments to follow more adaptive ways of support seeking, so social relationships are more able to offer a buffering effect against the development of mental health problems.

Testing the psychometric properties of the illness perceptions questionnaire for OCD (IPQ-O).

BACKGROUND: Previous research has shown that our perceptions about illness are important determinants of how we respond and adjust to health threats. To examine whether illness perceptions affect illness responses in OCD (e.g. help-seeking), this study aimed to develop and test the psychometric properties of a new OCD-specific tool to assess illness perceptions, the illness perceptions questionnaire for OCD (IPQ-O). METHODS: A cross-sectional questionnaire-based design was used. Following adaptation of the IPQ-R based on qualitative interviews with people with OCD, adults (age ≥ 16) with OCD completed the IPQ-O (online or postal), alongside measures of depression, anxiety, OCD severity, attitudes to seeking mental health services and behaviours (e.g. treatment seeking intentions). A sub-sample re-completed the IPQ-O after two-weeks to obtain test-retest reliability. Factor analysis was used to derive the IPQ-O factor structure; internal consistency of subscales was calculated. Convergent validity was explored. RESULTS: Three hundred forty-eight people with OCD completed the IPQ-O. After factor analysis, seven main sub-scales and four cause sub-scales were identified, explaining 45.5 and 41.6% of the variance after extraction and rotation respectively. Three sub-scales from the original IPQ-R were validated; other dimensions differed from original IPQ-R sub-scales. The new 'spectrum' sub-scale measures the strength of the view that OCD is a trait that presents to varying extents within the general population. The IPQ-O demonstrated internal consistency, test re-test reliability (Kendall's tau = .51-.75) and convergent validity. Illness perceptions were associated with important aspects of adjustment (depression, anxiety) and condition management (receipt of treatment, plans to seek help). In particular, emerging data showed that those who had not received medication for OCD endorsed stronger spectrum beliefs. Though longitudinal study is needed to verify the direction of this association, this raises the question of whether spectrum beliefs deter people with OCD from using pharmacological treatments. CONCLUSIONS: The IPQ-O provides a valuable tool for subsequent testing of whether illness perceptions drive outcomes as proposed by the CSM. If perceptions are found to drive adjustment and behaviour, therapists could elicit and subsequently challenge perceptions that have negative effects on adjustment and coping, as part of psychological therapy.

Discussing factors associated with quality of life in cancer follow-up appointments: a preliminary test of a pragmatic model for clinical practice.

OBJECTIVE:: The aim of this study is to perform a preliminary test of a practical, evidence-based model to enable discussions around quality of life-related concerns during cancer follow-up appointments. DESIGN:: Cross-sectional study measuring quality of life, illness perceptions, emotional distress, fatigue, and subjective cognitive complaints. SETTING:: Cancer outpatient follow-up clinics in four National Health Services in the United Kingdom. PARTICIPANTS:: Working-age post-treatment cancer patients, treated with curative intent. INTERVENTIONS:: Not applicable. MAIN MEASURES:: European Organisation for the Research and Treatment of Cancer - Quality of Life Questionnaire - Core 30, Illness Perceptions Questionnaire - Revised, Hospital Anxiety and Depression Scale, Chalder Fatigue Scale, and Cognitive Failures Questionnaire. RESULTS:: Fifty-seven cancer patients, with a mean age of 36 years and on average 2.75 years post treatment, returned the completed questionnaires. Anxiety partially mediated the association between subjective cognitive complaints and illness identity (60%) and timeline (25%). Cognitive complaints mediated the relationships between quality of life and anxiety (45%), depression (30%), and fatigue (62%). Depression mediated the relationships between quality of life and illness identity (48%) and timeline (40%). CONCLUSION:: Our study provides a preliminary test of an evidence-based model to help elicit quality of life-related concerns during cancer follow-up appointments. Illness perceptions are associated with quality of life through the mediation of other cancer-relevant factors. Discussing the type, origin, and expected duration of symptoms may elicit other concerns, such as emotional distress, fatigue, or cognitive complaints, which explained a significant amount of the relationship between illness perceptions and quality of life.

Collaborative, individualised lifestyle interventions are acceptable to people with first episode psychosis; a qualitative study.

BACKGROUND: The adverse impact of unhealthy lifestyle choices and the prescription of antipsychotic medications contribute to weight gain, poor cardiovascular health and reduced life expectancy for people with psychosis. The present study aimed to explore the acceptability and perceived outcomes of a lifestyle intervention designed to prevent or reduce weight gain in people with first-episode psychosis. METHODS: This was a qualitative study using a data-driven approach. People recovering from first-episode psychosis recruited from UK early intervention services and taking part in the active arm of a randomised controlled trial of a lifestyle intervention (the InterACT trial), were interviewed using a semi-structured interview schedule. Interviews were transcribed verbatim and analysed using Framework Analysis. RESULTS: Participants valued the collaborative and individualised approach taken by the intervention deliverers, and formed high quality relationships with them. Aspects of the intervention that were positively appraised included goal setting, social opportunities, and progress monitoring. Benefits of the intervention, including increased levels of exercise; improved diet and physical health; increased psychological wellbeing (e.g. confidence, self-esteem); and improved social relationships, were identified by participants, independent of actual weight loss. CONCLUSIONS: Future interventions should ensure that workers have the skills to form high quality relationships with users, and to individualise the intervention according to users' needs and preferences. Future trials that test healthy living interventions should consider supplementing physical outcome measures with wider psychosocial outcome assessments, in particular social relationship quality, psychological wellbeing, self-esteem and self-efficacy. TRIAL REGISTRATION: Current Controlled Trials: ISRCTN22581937 . Date of registration: 27 October 2010 (retrospectively registered).

Separating obsessive-compulsive disorder from the self. A qualitative study of family member perceptions.

BACKGROUND: Obsessive-compulsive disorder (OCD) is a condition which can have major effects on the life of both the sufferer and their family members. Previous research has shown that the impact of illness on family members is related to their conceptualisation of the illness. In the present study we used qualitative methods to explore illness perceptions in family members of people with OCD. METHOD: Fourteen family members of people meeting diagnostic criteria for OCD within the previous year took part in a semi-structured interview. Transcribed interviews were analysed using thematic analysis. RESULTS: OCD was viewed as originating from non-modifiable endogenous factors, particularly personal characteristics. Ambiguity about the boundary between OCD and the person was further heightened by a lack of distinction in family members' interpretations about which behaviours were a problematic symptom of a mental health problem and which were behaviours performed for enjoyment or the purposeful pursuit of a goal. The perceived close relationship between OCD and the person appeared to lead to pessimism regarding the likelihood of recovery. Some individuals viewed OCD as presenting on a continuum such that individuals with sub-clinical symptoms exist on the same spectrum as those with the mental health problem. For some however, labelling of sub-clinical symptoms as OCD by members of the public was a source of frustration for families, who felt that the severity of OCD was unrecognised. CONCLUSIONS: Family members' perceptions of the link between OCD and the person and of a spectrum of OCD presentation within the general population, may represent important dimensions of illness perception, which are not currently represented within existing models or assessment measures of illness perception. The perceptions that individuals hold about a health problem have been shown to be important in determining their coping responses to that condition. Further study using larger samples and quantitative methods are needed to understand whether these novel perceptions are associated with coping responses and outcomes in family members and people with OCD. If linked, clinicians may need to identify and challenge unhelpful family member perceptions as part of psychological therapy for families living with OCD.

Self-blame attributions in relatives of people with recent-onset psychosis: Associations with relatives' distress and behavioural control.

OBJECTIVES: There is evidence that self-blame is an important predictor of distress and depression in relatives of people with long-term psychosis, but there is limited research investigating the nature and correlates of self-blame in relatives of people with recent-onset psychosis. Self-blame motivates a tendency to engage with others and to repair wrongdoings; it might be that such cognitions also impact on relatives' behaviours towards the patient. This study examined the association between self-blame and psychological distress, and tested the prediction that greater self-blame would be associated with more behavioural control attempts to patients in a sample of relatives of people with recent-onset psychosis. METHODS: Statements pertaining to self-blame and behavioural control were extracted and rated from 80 interviews with relatives, who also completed the General Health Questionnaire-28. Content analysis was used to examine the nature of self-blame attributions. Regression analyses were used to explore the links between self-blame attributions and distress, and between self-blame and behavioural control in this recent-onset population. RESULTS: Higher levels of self-blame were associated with more behavioural control attempts, and self-blame predicted relatives' behavioural responses when adjusting for the contribution of control attributions. Self-blame was also linked with distress, but did not emerge as an independent predictor in multivariate analysis. Most relatives who blamed themselves did so for not overseeing their family member's mental health problems properly or for perceiving themselves generally as poor carers. CONCLUSIONS: This study extends findings related to self-blame to a population of relatives of people with recent-onset psychosis and highlights the possible role of blaming cognitions in promoting interpersonal engagement through behavioural control. PRACTITIONER POINTS: Self-blaming beliefs were linked with increased distress in relatives of people with recent-onset psychosis; Increased self-blame was associated with more behavioural control attempts; Most relatives blamed themselves for not overseeing their family member's mental health problems properly, and for perceiving themselves generally as poor carers. The cross-sectional study design limits inferences about causality.

Expressed Emotion in relatives of persons with dementia: a systematic review and meta-analysis.

OBJECTIVES: Expressed Emotion (EE) refers to a number of key aspects of interpersonal relationships which have been shown to relate to outcomes in relatives of people with health conditions. DESIGN: A systematic review and meta-analysis of EE and outcomes in relatives of persons with dementia is reported. Potential research studies were identified via a search of three electronic databases; PsychINFO, MEDLINE and the Web of Science between 1960 and 2015. RESULTS: We reviewed 12 studies investigating correlations between EE and well-being in relatives of patients with dementia. Factors hypothesised to influence EE including attributions, social support, coping strategies and relationship quality were also reviewed. CONCLUSION: High-EE relatives were found to have increased levels of burden (Z = 6.967, P < 0.001) and greater levels of depression (Z = 5.842, P < 0.001). Compared to low-EE relatives, high-EE relatives were more likely to attribute the patient's problems to factors that were personal to and controllable by the patient. Relatives with less social support, inefficient coping strategies and a poor relationship with the patients, were more likely to be classified as high-EE.

Assessing the reliability of the five minute speech sample against the Camberwell family interview in a chronic fatigue syndrome sample.

PURPOSE: The current study aimed to examine the reliability of the Five Minute Speech Sample (FMSS) for assessing relative Expressed Emotion (EE) compared with the Camberwell Family Interview (CFI) in a sample of relatives of adult patients with Chronic Fatigue Syndrome (CFS). METHOD: 21 relatives were recruited and completed both assessments. The CFI was conducted first for all participants, with the FMSS conducted approximately one month later. Trained raters independently coded both EE measures; high levels of rating reliability were established for both measures. Comparisons were conducted for overall EE status, emotional over-involvement (EOI) and criticism. FINDINGS: The distribution of high and low-EE was equivalent across the two measures, with the FMSS correctly classifying EE is 71% of cases (n=15). The correspondence between the FMSS and CFI ratings was found to be non-significant for all categorical variables. However, the number of critical comments made by relatives during the FMSS significantly correlated with the number of critical comments made during the CFI. The poorest correspondence between the measures was observed for the EOI dimension. CONCLUSION: The findings suggest that the FMSS may be a useful screening tool for identifying high-EE, particularly criticism, within a sample of relatives of patients with CFS. However, the two measures should not be assumed equivalent, and the CFI should be used where possible, particularly with respect to understanding EOI.

Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study.

BACKGROUND: Previous research has highlighted that many GPs lack the confidence and knowledge to diagnose and manage people with CFS/ME. Following the development of an online training module for GPs, and an information pack and DVD for patients, this study explored the extent to which these resources can be implemented in routine primary care. METHODS: Semi structured qualitative interviews were completed with patients and GPs across North West England. All interviews were transcribed and analysed using open exploratory thematic coding. Following this thematic analysis, the authors conducted a further theory-driven analysis of the data guided by Normalisation Process Theory. RESULTS: When used in line with advice from the research team, the information resource and training were perceived as beneficial to both patients and GPs in the diagnosis and management of CFS/ME. However, 47 % of patients in this study did not receive the information pack from their GP. When the information pack was used, it was often incomplete, sent in the post, and GPs did not work with patients to discuss the materials. Only13 out of 21 practices completed the training module due to time pressures and the low priority placed on low prevalence, contentious, hard to manage conditions. When the module was completed, many GPs stated that it was not feasible to retain the key messages as they saw so few patients with the condition. Due to the complexity of the condition, GPs also believed that the diagnosis and management of CFS/ME should take place in a specialist care setting. CONCLUSION: While barriers to the implementation of training and resources for CFS/ME remain, there is a need to support CFS/ME patients to access reliable, evidence based information outside primary care. Our findings suggest that future research should develop an online resource for patients to support self-management.

Healthcare decision-making in end stage renal disease-patient preferences and clinical correlates.

BACKGROUND: Medical decision-making is critical to patient survival and well-being. Patients with end stage renal disease (ESRD) are faced with incrementally complex decision-making throughout their treatment journey. The extent to which patients seek involvement in the decision-making process and factors which influence these in ESRD need to be understood. METHODS: 535 ESRD patients were enrolled into the cross-sectional study arm and 30 patients who started dialysis were prospectively evaluated. Patients were enrolled into 3 groups- 'predialysis' (group A), 'in-centre' haemodialysis (HD) (group B) and self-care HD (93 % at home-group C) from across five tertiary UK renal centres. The Autonomy Preference Index (API) has been employed to study patient preferences for information-seeking (IS) and decision-making (DM). Demographic, psychosocial and neuropsychometric assessments are considered for analyses. RESULTS: 458 complete responses were available. API items have high internal consistency in the study population (Cronbach's alpha > 0.70). Overall and across individual study groups, the scores for information-seeking and decision-making are significantly different indicating that although patients had a strong preference to be well informed, they were more neutral in their preference to participate in DM (p < 0.05). In the age, education and study group adjusted multiple linear regression analysis, lower age, female gender, marital status; higher API IS scores and white ethnicity background were significant predictors of preference for decision-making. DM scores were subdivided into tertiles to identify variables associated with high (DM > 70: and low DM (≤30) scores. This shows association of higher DM scores with lower age, lower comorbidity index score, higher executive brain function, belonging in the self-caring cohort and being unemployed. In the prospectively studied cohort of predialysis patients, there was no change in decision-making preference scores after commencement of dialysis. CONCLUSION: ESRD patients prefer to receive information, but this does not always imply active involvement in decision-making. By understanding modifiable and non-modifiable factors which affect patient preferences for involvement in healthcare decision-making, health professionals may acknowledge the need to accommodate individual patient preferences to the extent determined by the individual patient factors.

Externalizing the private experience of pain: a role for co-speech gestures in pain communication?

Despite the importance of effective pain communication, talking about pain represents a major challenge for patients and clinicians because pain is a private and subjective experience. Focusing primarily on acute pain, this article considers the limitations of current methods of obtaining information about the sensory characteristics of pain and suggests that spontaneously produced "co-speech hand gestures" may constitute an important source of information here. Although this is a relatively new area of research, we present recent empirical evidence that reveals that co-speech gestures contain important information about pain that can both add to and clarify speech. Following this, we discuss how these findings might eventually lead to a greater understanding of the sensory characteristics of pain, and to improvements in treatment and support for pain sufferers. We hope that this article will stimulate further research and discussion of this previously overlooked dimension of pain communication.