What stops children with a chronic illness accessing health care: A mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

Background: Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is relatively common and disabling with a mean time out of school of more than one academic year. NICE guidelines recommend referral to specialist services immediately if severely affected, within 3 months if moderately affected and within 6 months if mildly affected. However, the median time-to-assessment by a specialist service in the UK is 18 months. This study used a mixed-methods approach to examine factors associated with time taken to access specialist services. Methods. Time-to-assessment was analysed as a continuous "survival-time" variable in Cox regression models using data from self-completed assessment forms for children attending a regional specialist CFS/ME service between January 2006 and December 2009. Semi-structured interviews about barriers experienced in accessing healthcare for their child were conducted with nine parents of children aged < 17 years (8 individual and one parent couple). Interviews were digitally recorded and analysed using "thematic analysis". Results: 405 children were assessed between 2006 and 2009 and information on school attendance was available on 388. Only 1/125 with severe CFS/ME and 49/263 (19%) with mild to moderate CFS/ME were seen within NICE recommended timeframe. Increased fatigue was associated with shorter time to assessment (HR = 1.15; 95% CI 1.03, 1.29 per unit increase in Chalder fatigue score; P = 0.01). Time-to-assessment was not associated with disability, mood, age or gender. Parents described difficulties accessing specialist services because of their own as well as their GP's and Paediatrician's lack of knowledge. They experienced negative attitudes and beliefs towards the child's condition when they consulted GPs, Paediatricians and Child Psychiatrists. Parents struggled to communicate an invisible illness that their child and not themselves were experiencing. Conclusions: GPs, Child Psychiatrists and Paediatricians need more knowledge about CFS/ME and the appropriate referral pathways to ensure timeliness in referral to specialist services. © 2011 Webb et al; licensee BioMed Central Ltd

Correction: What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

Correction to: BMC Health Services Research (2011) 11:308. https://doi.org/10.1186/1472-6963-11-308.Following a report of a publications review jointly commissioned by the Health Research Authority and the University of Bristol, the authors would like to correct the following element of the ethics statement provided in the original article [1]:Ethical permission for the qualitative part of the study was granted by the North Somerset and South Bristol Research Ethics Committee (REC Reference number 09/H0106/81). The study was also approved by the Research and Development department of the RNHRD. The North Somerset & South Bristol Research Ethics Committee decided that the collection and analysis of these data for service evaluation did not require ethical review by an NHS research ethics committee or approval from the NHS R&D Office (REC reference number 07/Q2006/48).The original article [1] has been corrected.ReferencesWebb et al. What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). BMC Health Serv Res. 2011;11:308. https://doi.org/10.1186/1472-6963-11-308

Immediate effects of a brief mindfulness-based body scan on patients with chronic pain

Mindfulness-based stress reduction (MBSR) has benefits for those with chronic pain. MBSR typically entails an intensive 8-week intervention. The effects of very brief mindfulness interventions are unknown. Among those with chronic pain, the immediate effects of a 10 min mindfulness-based body scan were compared with a control intervention. Fifty-five adult outpatients were randomly assigned to either: (1) mindfulness-based body scan (n = 27) or (2) a reading about natural history (control group, n = 28), provided via a 10 min audio-recording. Interventions were delivered twice across 24 h; once in the clinic and once in participants' 'normal' environment. Immediately before and after listening to the recording, participants rated pain severity, pain related distress, perceived ability for daily activities, perceived likelihood of pain interfering with social relations, and mindfulness. In the clinic, there was a significant reduction in ratings for pain related distress and for pain interfering with social relations for the body scan group compared with the control group (p = 0.005; p = 0.036, respectively). In the normal environment none of the ratings were significantly different between the groups. These data suggest that, in a clinic setting, a brief body scan has immediate benefits for those experiencing chronic pain. These benefits need to be confirmed in the field

Associations between health and sexual lifestyles in Britain: findings from the third National Survey of Sexual Attitudes and Lifestyles (Natsal-3).

BACKGROUND: Physical and mental health could greatly affect sexual activity and fulfilment, but the nature of associations at a population level is poorly understood. We used data from the third National Survey of Sexual Attitudes and Lifestyles (Natsal-3) to explore associations between health and sexual lifestyles in Britain (England, Scotland, and Wales). METHODS: Men and women aged 16-74 years who were resident in households in Britain were interviewed between Sept 6, 2010, and Aug 31, 2012. Participants completed the survey in their own homes through computer-assisted face-to-face interviews and self-interview. We analysed data for self-reported health status, chronic conditions, and sexual lifestyles, weighted to account for unequal selection probabilities and non-response to correct for differences in sex, age group, and region according to 2011 Census figures. FINDINGS: Interviews were done with 15,162 participants (6293 men, 8869 women). The proportion reporting recent sexual activity (one or more occasion of vaginal, oral, or anal sex with a partner of the opposite sex, or oral or anal sex or genital contact with a partner of the same sex in the past 4 weeks) decreased with age after the age of 45 years in men and after the age of 35 years in women, while the proportion in poorer health categories increased with age. Recent sexual activity was less common in participants reporting bad or very bad health than in those reporting very good health (men: 35·7% [95% CI 28·6-43·5] vs 74·8% [72·7-76·7]; women: 34·0% [28·6-39·9] vs 67·4% [65·4-69·3]), and this association remained after adjusting for age and relationship status (men: adjusted odds ratio [AOR] 0·29 [95% CI 0·19-0·44]; women: 0·43 [0·31-0·61]). Sexual satisfaction generally decreased with age, and was significantly lower in those reporting bad or very bad health than in those reporting very good health (men: 45·4% [38·4-52·7] vs 69·5% [67·3-71·6], AOR 0·51 [0·36-0·72]; women: 48·6% [42·9-54·3] vs 65·6% [63·6-67·4], AOR 0·69 [0·53-0·91]). In both sexes, reduced sexual activity and reduced satisfaction were associated with limiting disability and depressive symptoms, and reduced sexual activity was associated with chronic airways disease and difficulty walking up the stairs because of a health problem. 16·6% (95% CI 15·4-17·7) of men and 17·2% (16·3-18·2) of women reported that their health had affected their sex life in the past year, increasing to about 60% in those reporting bad or very bad health. 23·5% (20·3-26·9) of men and 18·4% (16·0-20·9) of women who reported that their health affected their sex life reported that they had sought clinical help (>80% from general practitioners; <10% from specialist services). INTERPRETATION: Poor health is independently associated with decreased sexual activity and satisfaction at all ages in Britain. Many people in poor health report an effect on their sex life, but few seek clinical help. Sexual lifestyle advice should be a component of holistic health care for patients with chronic ill health. FUNDING: Grants from the UK Medical Research Council and the Wellcome Trust, with support from the Economic and Social Research Council and Department of Health

Sequential Stem Cell-Kidney Transplantation in Schimke Immuno-osseous Dysplasia

Lifelong immunosuppression is required for allograft survival after kidney transplantation but may not ultimately prevent allograft loss resulting from chronic rejection. We developed an approach that attempts to abrogate immune rejection and the need for post-transplantation immunosuppression in three patients with Schimke immuno-osseous dysplasia who had both T-cell immunodeficiency and renal failure. Each patient received sequential transplants of αβ T-cell-depleted and CD19 B-cell-depleted haploidentical hematopoietic stem cells and a kidney from the same donor. Full donor hematopoietic chimerism and functional ex vivo T-cell tolerance was achieved, and the patients continued to have normal renal function without immunosuppression at 22 to 34 months after kidney transplantation

Developmental care pathway for hospitalised infants with CHD: On behalf of the Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative

Infants and children born with CHD are at significant risk for neurodevelopmental delays and abnormalities. Individualised developmental care is widely recognised as best practice to support early neurodevelopment for medically fragile infants born premature or requiring surgical intervention after birth. However, wide variability in clinical practice is consistently demonstrated in units caring for infants with CHD. The Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative, formed a working group of experts to create an evidence-based developmental care pathway to guide clinical practice in hospital settings caring for infants with CHD. The clinical pathway, Developmental Care Pathway for Hospitalized Infants with Congenital Heart Disease, includes recommendations for standardised developmental assessment, parent mental health screening, and the implementation of a daily developmental care bundle, which incorporates individualised assessments and interventions tailored to meet the needs of this unique infant population and their families. Hospitals caring for infants with CHD are encouraged to adopt this developmental care pathway and track metrics and outcomes using a quality improvement framework