Quality of Life and Well-Being for Children and Youth With Special Health Care Needs and their Families: A Vision for the Future.

OBJECTIVES: To fulfill the promise of a life of dignity, autonomy, and independence for children and youth with special health care needs (CYSHCN) and their families, greater value must be assigned to meaningful outcomes, such as quality of life and well-being. METHODS: Despite decades of research, programs, and measurements addressing quality of life and well-being for CYSHCN and their families, there still is no consensus on how to measure, implement, or achieve them. RESULTS: As the US health care system strives to reach the health care goals of safe, efficient, effective, equitable, timely, and patient-centered care, youth and families must be equal partners at all levels of the health care system-from clinical decision making to designing and implementing programs and policies. CONCLUSIONS: The health care system must systematically measure the priorities of CYSHCN and their families. It also must incorporate data on quality of life and well-being when developing services, supports, and systems that help CYSHCN and their families to flourish rather than hindering them.

The Staff Views About Assessing Voices Questionnaire: Piloting a Novel Socratic Method of Evaluating and Training Multidisciplinary Staff's Cognitive Assessment of Patients' Distressing Voices.

Cognitive features of auditory hallucinations (voices) have important clinical significance and their assessment is vital for cognitive behavior therapy to be more widely deployed by multidisciplinary staff. Using a new Socratic instrument-The Staff Views About Assessing Voices Questionnaire (SVAVQ)-we surveyed a community inpatient rehabilitation multidisciplinary workforce's (N = 50) assessment and attitude toward asking cognitive questions about patients' voices. We found that there were many clinically important gaps in what staff asked about in relation to cognitive features of voices. We identified a range of beliefs the staff hold that may prevent assessment of voice cognitive features. However, after attending the Socratic SVAVQ interview, 84% of staff said they planned to ask patients more questions about cognitive features of patients' voices. Research could now test if other psychosis services neglect the assessment of important cognitive features of patients' voices and if staff Socratic questioning improves their cognitive assessments.

Neighbourhood and consumer food environment is associated with dietary intake among Supplemental Nutrition Assistance Program (SNAP) participants in Fayette County, Kentucky.

OBJECTIVE: The aim of the study was to determine the association between dietary outcomes and the neighbourhood food environment (street network distance from home to stores) and consumer food environment (Nutrition Environment Measurement Survey-Stores (NEMS-S) audit). DESIGN: The neighbourhood food environment was captured by creating 0?5-mile and 1-mile network distance (street distance) around each participant's home and the nearest food venue (convenience store, grocery store, supermarket, farmers' market and produce stand). The consumer food environment was captured by conducting NEMS-S in all grocery stores/supermarkets within 0?5 and 1 mile of participants' homes. SETTING: Fayette County, KY, USA. SUBJECTS: Supplemental Nutrition Assessment Program (SNAP) participants, n 147. RESULTS: SNAP participants who lived within 0?5 mile of at least one farmers' market/produce stand had higher odds of consuming one serving or more of vegetables (OR56?92; 95% CI 4?09, 11?69), five servings or more of grains (OR51?76; 95% CI 1?01, 3?05) and one serving or more of milk (OR53?79; 95% CI 2?14, 6?71) on a daily basis. SNAP participants who lived within 0?5 mile of stores receiving a high score on the NEMS-S audit reported higher odds of consuming at least one serving of vegetables daily (OR53?07; 95% CI 1?78, 5?31). CONCLUSIONS: Taken together, both the neighbourhood food environment and the consumer food environment are associated with a healthy dietary intake among SNAP participants.

Role of multidetector computed tomography in the diagnosis and management of patients attending the rapid access chest pain clinic, The Scottish computed tomography of the heart (SCOT-HEART) trial: study protocol for randomized controlled trial.

BACKGROUND: Rapid access chest pain clinics have facilitated the early diagnosis and treatment of patients with coronary heart disease and angina. Despite this important service provision, coronary heart disease continues to be under-diagnosed and many patients are left untreated and at risk. Recent advances in imaging technology have now led to the widespread use of noninvasive computed tomography, which can be used to measure coronary artery calcium scores and perform coronary angiography in one examination. However, this technology has not been robustly evaluated in its application to the clinic. METHODS/DESIGN: The SCOT-HEART study is an open parallel group prospective multicentre randomized controlled trial of 4,138 patients attending the rapid access chest pain clinic for evaluation of suspected cardiac chest pain. Following clinical consultation, participants will be approached and randomized 1:1 to receive standard care or standard care plus ≥64-multidetector computed tomography coronary angiography and coronary calcium score. Randomization will be conducted using a web-based system to ensure allocation concealment and will incorporate minimization. The primary endpoint of the study will be the proportion of patients diagnosed with angina pectoris secondary to coronary heart disease at 6 weeks. Secondary endpoints will include the assessment of subsequent symptoms, diagnosis, investigation and treatment. In addition, long-term health outcomes, safety endpoints, such as radiation dose, and health economic endpoints will be assessed. Assuming a clinic rate of 27.0% for the diagnosis of angina pectoris due to coronary heart disease, we will need to recruit 2,069 patients per group to detect an absolute increase of 4.0% in the rate of diagnosis at 80% power and a two-sided P value of 0.05. The SCOT-HEART study is currently recruiting participants and expects to report in 2014. DISCUSSION: This is the first study to look at the implementation of computed tomography in the patient care pathway that is outcome focused. This study will have major implications for the management of patients with cardiovascular disease. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01149590.

Do adolescents with eating disorder not otherwise specified or full-syndrome bulimia nervosa differ in clinical severity, comorbidity, risk factors, treatment outcome or cost?

OBJECTIVE: We wanted to know whether adolescents with eating disorder not otherwise specified (EDNOS) differ from those with bulimia nervosa (BN) in clinical features, comorbidity, risk factors, treatment outcome or cost. METHOD: Adolescents with EDNOS (n = 24) or BN (n = 61) took part in a trial of family therapy versus guided self-care. At baseline, eating disorder symptoms, risk factors, and costs were assessed by interview. Patients were reinterviewed at 6 and 12 months. RESULTS: Compared with EDNOS, BN patients binged, vomited and purged significantly more, and were more preoccupied with food. Those with EDNOS had more depression and had more current and childhood obsessive-compulsive disorder. 66.6% of EDNOS versus 27.8% of BN patients were abstinent from bingeing and vomiting at 1 year. Diagnosis did not moderate treatment outcome. Costs did not differ between groups. CONCLUSION: EDNOS in adolescents is not trivial. It has milder eating disorder symptoms but more comorbidity than BN.

A randomized controlled trial of family therapy and cognitive behavior therapy guided self-care for adolescents with bulimia nervosa and related disorders.

OBJECTIVE: To date no trial has focused on the treatment of adolescents with bulimia nervosa. The aim of this study was to compare the efficacy and cost-effectiveness of family therapy and cognitive behavior therapy (CBT) guided self-care in adolescents with bulimia nervosa or eating disorder not otherwise specified. METHOD: Eighty-five adolescents with bulimia nervosa or eating disorder not otherwise specified were recruited from eating disorder services in the United Kingdom. Participants were randomly assigned to family therapy for bulimia nervosa or individual CBT guided self-care supported by a health professional. The primary outcome measures were abstinence from binge-eating and vomiting, as assessed by interview at end of treatment (6 months) and again at 12 months. Secondary outcome measures included other bulimic symptoms and cost of care. RESULTS: Of the 85 study participants, 41 were assigned to family therapy and 44 to CBT guided self-care. At 6 months, bingeing had undergone a significantly greater reduction in the guided self-care group than in the family therapy group; however, this difference disappeared at 12 months. There were no other differences between groups in behavioral or attitudinal eating disorder symptoms. The direct cost of treatment was lower for guided self-care than for family therapy. The two treatments did not differ in other cost categories. CONCLUSIONS: Compared with family therapy, CBT guided self-care has the slight advantage of offering a more rapid reduction of bingeing, lower cost, and greater acceptability for adolescents with bulimia or eating disorder not otherwise specified.

Predictors of mental health problems and negative caregiving experiences in carers of adolescents with bulimia nervosa.

OBJECTIVE: This exploratory study focuses on the mental health (MH) and caregiving experience of carers of adolescents with Bulimia Nervosa (BN)/Eating Disorder not otherwise specified (EDNOS), aiming to determine: levels of MH problems in carers and if a negative experience of caregiving predicts carer MH status and which factors predict a negative experience of caregiving. METHOD: Hundred and twelve carers and 68 adolescents with BN/EDNOS completed self-report measures (General Health Questionnaire, Experience of Caregiving Inventory, Level of Expressed Emotion, Self-report Family Inventory, Inventory of Interpersonal Problems). RESULTS: Over half of the carers reported some MH problems and a minority (5.4%) were experiencing considerable difficulties. A negative experience of caregiving predicted carer MH status. Higher weekly contact hours and patient ratings of expressed emotion (EE) predicted a negative experience of caregiving. CONCLUSIONS: Interventions focusing on reducing EE and contact hours could prove beneficial for both patient and caregiver outcomes.

A qualitative study of the experience of caring for a person with bulimia nervosa. Part 2: Carers' needs and experiences of services and other support.

OBJECTIVE: Family carers of people with mental disorders have specific needs to safeguard their own mental health. The needs of carers of individuals with eating disorders have received little attention. A focus group with carers of people with anorexia nervosa identified a number of specific needs (Haigh & Treasure [2003]. European Eating Disorders Review, 11(2), 125-141). However, there has been no published research into the needs of carers of individuals with bulimia nervosa (BN). METHOD: Twenty carers of individuals with BN were interviewed using a semistructured interview schedule. Interviews were transcribed and the texts were analyzed using a content analysis approach to identify themes. RESULTS: Carers expressed the need for more information, practical advice, guidance, and the need to talk to others about their experiences. DISCUSSION: Further research is recommended to explore how the needs expressed by carers may best be translated into services that effectively meet the requirements of both patients and carers and reduce the risk to carers' mental health.