Huntington's Disease: Prevalence and Psychological Indicators of Pain.

BACKGROUND: Huntington's disease (HD) is a genetic neurodegenerative condition that involves impairments in movement, cognition, and mood. Research is lacking in HD with regard to the prevalence of pain and the relationships between psychological factors and pain. The aim of this research was to investigate the prevalence of pain and identify the psychological factors associated with pain severity in people with HD. METHODS: This data-mining study used data from 1474 people who participated in the European Huntington's Disease Network (EHDN) REGISTRY study. Pain severity was measured using the Medical Outcome Study 36-item short-form health survey. Separate ordinal regression analyses were conducted with participant-rated and interviewer-rated psychological measures (the Hospital Anxiety and Depression Scale-Snaith Irritability Scale and the Unified Huntington's Disease Rating Scale). The psychological factors considered were anxiety, depression, irritability, aggression, low self-esteem, and apathy. RESULTS: The prevalence of pain in the total sample was 41% (stage I, 42%; stage II, 44%; stage III, 39%; stages IV and V, 50%). After controlling for confounding variables, pain severity was significantly associated with participant-rated anxiety and depression. Interviewer-rated anxiety, depression, and irritability also were significantly associated with severity of pain after controlling for confounding variables. CONCLUSIONS: This research confirmed that pain is indeed an issue for people with HD, particularly during the later stages of the disease. Caregivers and health professionals should consider the possibility that people with HD might be experiencing pain, particularly if they are showing signs of anxiety, depression, or irritability.

The struggling student: a thematic analysis from the self-regulated learning perspective.

CONTEXT: Students who engage in self-regulated learning (SRL) are more likely to achieve academic success compared with students who have deficits in SRL and tend to struggle with academic performance. Understanding how poor SRL affects the response to failure at assessment will inform the development of better remediation. METHODS: Semi-structured interviews were conducted with 55 students who had failed the final re-sit assessment at two medical schools in the UK to explore their use of SRL processes. A thematic analysis approach was used to identify the factors, from an SRL perspective, that prevented students from appropriately and adaptively overcoming failure, and confined them to a cycle of recurrent failure. RESULTS: Struggling students did not utilise key SRL processes, which caused them to make inappropriate choices of learning strategies for written and clinical formats of assessment, and to use maladaptive strategies for coping with failure. Their normalisation of the experience and external attribution of failure represented barriers to their taking up of formal support and seeking informal help from peers. CONCLUSIONS: This study identified that struggling students had problems with SRL, which caused them to enter a cycle of failure as a result of their limited attempts to access formal and informal support. Implications for how medical schools can create a culture that supports the seeking of help and the development of SRL, and improves remediation for struggling students, are discussed.

Patients' experiences of an initial consultation in oncology: knowing and not knowing.

OBJECTIVES: The aim of this paper was to explore how patients experience an initial oncology consultation. This study was part of a larger mixed methods research project designed to address the issue of improving communication and enhancing patient satisfaction with oncology consultations. DESIGN: Interpretive phenomenological analysis was used to interpret the participants' meanings of their experiences in their initial consultation. It is an idiographic approach that focuses in depth on a small set of cases in order to explore how individuals make sense of a similar experience. This retains the complexity and diversity of experiences. METHODS: In the larger study, semi-structured interviews were carried out with 36 patients as soon as possible after a consultation in oncology to explore their experiences. Five cases were selected for this study on the basis of homogeneity; they had all undergone some prior investigations of their illness, and this was their first consultation in oncology; they all provided rich accounts relating to how they had experienced the consultation. RESULTS: Patients' experiences of being given their diagnosis differed both between participants and within the same participant. Various defences seemed to be used in order to protect them from fully engaging with the knowledge they were given. Their accounts of what they wished to know in the consultation could be affected by a desire to protect themselves and/or family members from distress and by the practical need to know that may vary over time. CONCLUSION: The complexity of patients' needs and preferences regarding information means that the doctor's role in communicating that information in a patient-centred way is difficult. The findings are discussed in relation to open awareness theory as to how the emotional context of the consultation process affects information needs. Doctors need strategies to elicit information from patients about their needs from the consultation. This needs to be done at the start of consultations and throughout investigations and treatment, as needs may change over time. Statement of contribution What is already known on this subject? Patients' desire to know information is sometimes tempered with by a desire to avoid distress to themselves. Patients do not always understand or make accurate sense of what they have been told. Receiving a diagnosis of cancer is distressing for patients. What does this study add? Doctors need strategies to elicit information from patients about their needs for each consultation. This needs to be done consistently throughout the patient journey as needs may change over time. Patients control what they do or do not do with information but do not openly share this with the doctor. Our interpretations of the interviews stray beyond the conscious accounts of the consultations and draw on (unconscious) absences that may also be of significance in making sense of overall experience. The complexity of patients' needs and preferences regarding information means that the doctors' role is very difficult. Patients have a right to know but not a duty to know their diagnosis and prognosis.

Management of smokers motivated to quit: a qualitative study of smokers and GPs.

BACKGROUND: The National Institute for Health and Clinical Excellence (NICE) guidelines state that GPs should manage smokers motivated to quit by offering referral to Stop Smoking Services (SSS) and that nicotine addiction treatment (NAT) should be offered only to those who decline referral. OBJECTIVE: To explore how smokers motivated to quit are managed in the GP consultation, specifically how treatment and referral are negotiated from the perspectives of both parties. METHODS: Twenty patients, identified in a consultation with their GP as motivated to quit smoking, and 10 participating GPs were interviewed. Interviews were recorded, transcribed, coded and analysed using the framework approach. RESULTS: Three strategies (treatment and follow-up by the GP, referral to SSS without treatment and immediate treatment with referral for follow-up) were evidenced in patient and GP accounts. Most patients were satisfied with their management and how this was negotiated, but some expressed surprise or dissatisfaction with lack of immediate treatment and questioned the need for referral to SSS. GPs welcomed the availability of SSS but some felt it important that they themselves also continued to support a quit attempt. Several saw advantages in offering NAT at the time the patient was motivated to stop. CONCLUSIONS: Smokers appear less convinced than GPs about the value of referral to SSS, although these differences may be resolved through negotiation. An alternative strategy to that proposed by NICE, which may be more acceptable to some smokers, is immediate treatment with subsequent support from SSS.

Appraising qualitative research for inclusion in systematic reviews: a quantitative and qualitative comparison of three methods.

OBJECTIVE: Qualitative research is increasingly valued as part of the evidence for policy and practice, but how it should be appraised is contested. Various appraisal methods, including checklists and other structured approaches, have been proposed but rarely evaluated. We aimed to compare three methods for appraising qualitative research papers that were candidates for inclusion in a systematic review of evidence on support for breast-feeding. METHOD: A sample of 12 research papers on support for breast-feeding was appraised by six qualitative reviewers using three appraisal methods: unprompted judgement, based on expert opinion; a UK Cabinet Office quality framework; and CASP, a Critical Appraisal Skills Programme tool. Papers were assigned, following appraisals, to 1 of 5 categories, which were dichotomized to indicate whether or not papers should be included in a systematic review. Patterns of agreement in categorization of papers were assessed quantitatively using kappa statistics, and qualitatively using cross-case analysis. RESULTS: Agreement in categorizing papers across the three methods was slight (kappa =0.13; 95% CI 0.06-0.24). Structured approaches did not appear to yield higher agreement than that by unprompted judgement. Qualitative analysis revealed reviewers' dilemmas in deciding between the potential impact of findings and the quality of the research execution or reporting practice. Structured instruments appeared to make reviewers more explicit about the reasons for their judgements. CONCLUSIONS: Structured approaches may not produce greater consistency of judgements about whether to include qualitative papers in a systematic review. Future research should address how appraisals of qualitative research should be incorporated in systematic reviews.

Smoking behaviour change among fathers of new infants.

Protecting infants from exposure to parental tobacco smoke is key to positive health outcomes in childhood and later life. While mothers' smoking has been well researched, fathers' smoking has received little attention. This paper reports data from a cross-sectional survey of 286 smoking fathers in the English Midlands, interviewed when their infants were 8-14 weeks old. It examines whether fathers attempt and successfully achieve two smoking behaviours positively associated with infant health: quitting and not smoking in the home. The birth of a new baby was not associated with attempting or successfully quitting smoking for the majority of fathers. Less than 20% had tried to quit and only 4% had successfully quit smoking since the birth of their baby. Half of the participants reported that they had not changed their cigarette consumption since their baby's birth. Not smoking in the home appeared to be a more achievable behaviour for many fathers; 78.0% had attempted and 60% had successfully achieved not smoking in home. Independent predictors of attempting to quit were fathers' own cigarette consumption and level of knowledge about infant exposure to tobacco smoke. Attempting to abstain from smoking in the home and being successful in the attempt were both independently associated with partner's smoking status, number of financially dependent children and father's social class. Findings suggest that promoting reductions in cigarette consumption and improving knowledge levels among fathers about passive smoking in infants may encourage more quit attempts. Not smoking in the home is a more achievable behaviour and is linked to fathers' caring and economic circumstances and their partner's smoking status. Influences on fathers' smoking behaviour appear to be multi-factorial. Understanding father's smoking and developing health promotion strategies to protect infants from passive smoking is likely to depend on research which can bridge the caring and economic spheres of their lives.

Effect of strategies to reduce exposure of infants to environmental tobacco smoke in the home: cross sectional survey.

OBJECTIVE: To examine parents' reported knowledge and use of harm reduction strategies to protect their infants from exposure to tobacco smoke in the home, and the relation between reported use of strategies and urinary cotinine to creatinine ratios in the infants. DESIGN: Cross sectional survey. SETTINGS: Coventry and Birmingham. MAIN OUTCOME MEASURES: Parents' reported knowledge and use of harm reduction strategies and urinary cotinine to creatinine ratios in their infants. PARTICIPANTS: 314 smoking households with infants. RESULTS: 86% of parents (264/307) believed that environmental tobacco smoke is harmful, 90% (281/314) believed that infants can be protected from it in the home, and 10% (32/314) were either unaware of measures or reported using none. 65% of parents (205/314) reported using two or more measures, but only 18% (58/314) reported not allowing smoking in the home. No difference was found in mean log e transformed urinary cotinine to creatinine ratio in infants from households that used no measures compared with households that used less strict measures. Mean log cotinine to creatinine ratios were significantly different in households banning smoking in the home compared with those using less strict or no measures. Banning smoking in the home was independently associated with a significant reduction in urinary cotinine to creatinine ratio by a factor of 2.6 (1.6 to 4.2) after adjustment for average household cigarette consumption, tenure, and overcrowding. CONCLUSIONS: Less than a fifth of parents in smoking households ban smoking in the home. Banning smoking was associated with a small but significant reduction in urinary cotinine to creatinine ratio in infants, whereas less strict measures compared with no measures had no effect on the infants' exposure to environmental tobacco smoke.