The Patient Assessment of Chronic Illness Care produces measurements along a single dimension: results from a Mokken analysis.

BACKGROUND: As the worldwide prevalence of chronic illness increases so too does the demand for novel treatments to improve chronic illness care. Quantifying improvement in chronic illness care from the patient perspective relies on the use of validated patient-reported outcome measures. In this analysis we examine the psychometric and scaling properties of the Patient Assessment of Chronic Illness Care (PACIC) questionnaire for use in the United Kingdom by applying scale data to the non-parametric Mokken double monotonicity model. METHODS: Data from 1849 patients with long-term conditions in the UK who completed the 20-item PACIC were analysed using Mokken analysis. A three-stage analysis examined the questionnaire's scalability, monotonicity and item ordering. An automated item selection procedure was used to assess the factor structure of the scale. Analysis was conducted in an 'evaluation' dataset (n = 956) and results were confirmed using an independent 'validation' (n = 890) dataset. RESULTS: Automated item selection procedures suggested that the 20 items represented a single underlying trait representing "patient assessment of chronic illness care": this contrasts with the multiple domains originally proposed. Six items violated invariant item ordering and were removed. The final 13-item scale had no further issues in either the evaluation or validation samples, including excellent scalability (Ho = .50) and reliability (Rho = .88). CONCLUSIONS: Following some modification, the 13-items of the PACIC were successfully fitted to the non-parametric Mokken model. These items have psychometrically robust and produce a single ordinal summary score. This score will be useful for clinicians or researchers to assess the quality of chronic illness care from the patient's perspective.

Stigma and GPs' perceptions of dementia.

OBJECTIVES: General practitioners (GPs) are crucial to improving timely diagnosis, but little is reported about how they perceive dementia, and whether their perceptions display any elements of stigma. The aim of this study was to explore how GPs' perceptions of dementia map onto current conceptualizations of stigma and whether GPs feel that stigma affects timely diagnosis. METHODS: Twenty-three GPs from England were interviewed by telephone. Data were analyzed by means of content analysis. This involved open coding followed by the application of a coding framework derived from the literature to explore how and to what extent their perceptions relate to stigma as well as the unique nature of their perceptions. RESULTS: Three themes emerged from the analysis: (1) 'making sense of dementia', (2) 'relating perceptions of dementia to oneself' and (3) 'considering the consequences of dementia'. GPs' perceptions of dementia mapped onto current conceptualizations of stigma. Perceptions about dementia that were linked to their own existential anxiety and to a perceived similarity between people with dementia and themselves were particularly salient. GPs perceived dementia as a stigma which was gradually being overcome but that stigma still hindered timely diagnosis. They provided examples of structural discrimination within the health service, including lack of time for patients and shortcomings in training that were to the detriment of people with dementia. CONCLUSION: Measures to involve GPs in tackling stigma should include training and opportunities to explore how they perceive dementia, as well as support to address structural discrimination.

CONSANGUINITY, GENETICS AND DEFINITIONS OF KINSHIP IN THE UK PAKISTANI POPULATION.

Consanguineous marriage is a controversial topic in many Western societies, with attention mainly focused on the health of immigrant communities from Asia and Africa. In the UK consanguinity is especially prevalent in the Pakistani community, which now numbers over 1.1 million. Less attention has been paid to the influence of hereditary population stratification within Pakistani communities, in particular biraderi (literally brotherhood) membership, which denotes male lineages that largely govern marriage partner choice and hence the transmission of disease genes. The various roles played by biraderi and their relationship to other socio-occupational and kinship terms, such as caste, quom and zat, are often overlooked in health-based studies. The interchangeable use of these different kinship terms without rigorous definition can create identity uncertainty and hinders inter-study comparisons. Where feasible, standardization of terminology would be both desirable and beneficial, with biraderi the preferred default term to identify specific social and genetic relationships within the Pakistani diaspora.

Family carers' perspectives on post-school transition of young people with intellectual disabilities with special reference to ethnicity.

BACKGROUND: School leavers with intellectual disabilities (ID) often face difficulties in making a smooth transition from school to college, employment or more broadly to adult life. The transition phase is traumatic for the young person with ID and their families as it often results in the loss of friendships, relationships and social networks. METHOD: The aim of this study was to explore the family carers' views and experiences on transition from school to college or to adult life with special reference to ethnicity. Forty-three families (consisting of 16 White British, 24 Pakistani, 2 Bangladeshi and one Black African) were interviewed twice using a semi-structured interview schedule. The carers were interviewed twice, Time 1 (T1) and Time 2 (T2), T2 being a year later to observe any changes during transition. RESULTS: The findings indicate that although transition planning occurred it was relatively later in the young person's school life. Parents were often confused about the process and had limited information about future options for their son or daughter. All family carers regardless of ethnicity, reported lack of information about services and expressed a sense of being excluded. South Asian families experienced more problems related to language, information about services, culture and religion. CONCLUSIONS: The majority of families lacked knowledge and awareness of formal services and the transition process. Socio-economic status, high levels of unemployment and caring for a child with a disability accounted for similar family experiences, regardless of ethnic background. The three key areas relevant for ethnicity are interdependence, religion and assumptions by service providers.

Possible contamination of organ preservation fluid with Bacillus cereus: the United Kingdom response.

We describe here the United Kingdom (UK) response following the recent international recall of an organ preservation fluid owing to potential Bacillus cereus contamination. This fluid is used for the transport of solid organs and pancreatic islet cells for transplant. We detail the response mechanisms, including the initial risk stratification, investigatory approaches, isolate analysis and communications to professional bodies. This report further lays out the potential need for enhanced surveillance in UK transplant patients.

Barriers to advance care planning in chronic obstructive pulmonary disease.

The English End of Life Care Strategy promises that all patients with advanced, life limiting illness will have the opportunity to participate in Advance Care Planning (ACP). For patients with Chronic Obstructive Pulmonary Disease (COPD), the barriers to this being achieved in practice are under-explored. Five focus groups were held with a total of 39 health care professionals involved in the care of patients with COPD. Participants reported that discussions relating to ACP are very rarely initiated with patients with COPD and identified the following barriers: inadequate information provision about the likely course of COPD at diagnosis; lack of consensus regarding who should initiate ACP and in which setting; connotations of comparing COPD with cancer; ACP discussions conflicting with goals of chronic disease management; and a lack of understanding of the meaning of 'end of life' within the context of COPD. The findings from this study indicate that, for patients with COPD, significant service improvement is needed before the objective of the End of Life Care Strategy regarding patient participation in end of life decision-making is to be achieved. Whilst the findings support the Strategy's recommendations regarding an urgent for both professional education and increased public education about end of life issues, they also indicate that these alone will not be enough to effect the level of change required. Consideration also needs to be given to the integration of chronic disease management and end of life care and to developing definitions of end of life care that fit with concepts of 'continuous palliation'.

'A Friend in the Corner': supporting people at home in the last year of life via telephone and video consultation-an evaluation.

OBJECTIVE: To evaluate 'Gold Line', a 24/7, nurse-led telephone and video-consultation support service for patients thought to be in the last year of life in Bradford, Airedale, Wharfedale and Craven. METHOD: Data on the time and nature of all calls between 1 April 2014 and 30 March 2015 were obtained from the patient Electronic Records. Interviews with 13 participants captured patients and carers perspectives. RESULTS: To date, 3291 patients have been referred to the Gold Line. During the study period, 42% of registered patients had a non-cancer diagnosis and 45.2% of service users were not known to Specialist Palliative Care services. The median time on the caseload was 49 days (range 1-504 days). 4533 telephone calls and 573 video consultations were made involving 1813 individuals. 39% of the 5106 contacts were resolved by the Gold Line team without referral to other services. 69% of calls were made outside normal working hours. Interviews with patients and carers reported experiences of support and reassurance from the Gold Line and the importance of practical advice was emphasised. Current data (year to October 2015) show that 98.5% of calls (4500/4568) resulted in patients remaining in their place of residence. CONCLUSIONS: A nurse led, 24/7 telephone and video consultation service can provide valuable support for patients identified to be in the last year of life and for their carers. The line enabled them to feel supported and remain in their place of residence, hence reducing the pressure for avoidable hospital admissions and use of other services. Providing this service may encourage healthcare professionals to identify more patients approaching the last year of life, widening support offered to this group of patients beyond those known to specialist palliative care services.

Characterization of the kinetics of the passive and active transport mechanisms for bile acid absorption in the small intestine and colon of the rat.

Bile acid uptake occurs via passive diffusion in all regions of the intestine and via active absorption in the ileum. Determination of the passive permeability coefficient for ionized monomers ((*)P(-)) demonstrated that permeability decreased by a factor of 3.4, 6.8, and 8.1 for the addition of a hydroxyl, glycine, or taurine group, respectively, to the steroid nucleus. Removal of the negative charge increased permeation by a factor of 4.4; however, permeability coefficients for the protonated monomers showed the same relative decrease with addition of a hydroxyl group. The calculated incremental free energies of solution (deltaDeltaF(W-->1)) associated with these additions equaled + 757 (hydroxyl), + 1178 (glycine), and + 1291 (taurine) cal/mole. Passive permeability coefficients for the transverse colon showed the same relative relationships among the various bile acids. After making appropriate corrections for passive permeability across the ileum, apparent values for the maximal transport velocity ((*)V(max)) and Michaelis constant ((*)K(m)) of the active transport system were measured. (*)V(max) depended upon the number of hydroxyl groups on the steroid nucleus; values for the trihydroxy bile acids were high (1543-1906 pmoles/min per cm) while those for the dihydroxy (114-512 pmoles/min per cm) and monohydroxy (45-57 pmoles/min per cm) acids were lower. In contrast, (*)K(m) values were related to whether the bile acid was conjugated; unconjugated bile acids had values ranging from 0.37 to 0.49 mM, while values for the conjugated bile acids were approximately half as high (0.12-0.23 mM).

Biomarkers of Tuberculosis Severity and Treatment Effect: A Directed Screen of 70 Host Markers in a Randomized Clinical Trial.

More efficacious treatment regimens are needed for tuberculosis, however, drug development is impeded by a lack of reliable biomarkers of disease severity and of treatment effect. We conducted a directed screen of host biomarkers in participants enrolled in a tuberculosis clinical trial to address this need. Serum samples from 319 protocol-correct, culture-confirmed pulmonary tuberculosis patients treated under direct observation as part of an international, phase 2 trial were screened for 70 markers of infection, inflammation, and metabolism. Biomarker assays were specifically developed for this study and quantified using a novel, multiplexed electrochemiluminescence assay. We evaluated the association of biomarkers with baseline characteristics, as well as with detailed microbiologic data, using Bonferroni-adjusted, linear regression models. Across numerous analyses, seven proteins, SAA1, PCT, IL-1ß, IL-6, CRP, PTX-3 and MMP-8, showed recurring strong associations with markers of baseline disease severity, smear grade and cavitation; were strongly modulated by tuberculosis treatment; and had responses that were greater for patients who culture-converted at 8weeks. With treatment, all proteins decreased, except for osteocalcin, MCP-1 and MCP-4, which significantly increased. Several previously reported putative tuberculosis-associated biomarkers (HOMX1, neopterin, and cathelicidin) were not significantly associated with treatment response. In conclusion, across a geographically diverse and large population of tuberculosis patients enrolled in a clinical trial, several previously reported putative biomarkers were not significantly associated with treatment response, however, seven proteins had recurring strong associations with baseline radiographic and microbiologic measures of disease severity, as well as with early treatment response, deserving additional study.

Addressing key issues in the consanguinity-related risk of autosomal recessive disorders in consanguineous communities: lessons from a qualitative study of British Pakistanis.

Currently, there is no consensus regarding services required to help families with consanguineous marriages manage their increased genetic reproductive risk. Genetic services for communities with a preference for consanguineous marriage in the UK remain patchy, often poor. Receiving two disparate explanations of the cause of recessive disorders (cousin marriage and recessive inheritance) leads to confusion among families. Further, the realisation that couples in non-consanguineous relationships have affected children leads to mistrust of professional advice. British Pakistani families at-risk for recessive disorders lack an understanding of recessive disorders and their inheritance. Such an understanding is empowering and can be shared within the extended family to enable informed choice. In a three-site qualitative study of British Pakistanis, we explored family and health professional perspectives on recessively inherited conditions. Our findings suggest, firstly, that family networks hold strong potential for cascading genetic information, making the adoption of a family-centred approach an efficient strategy for this community. However, this is dependent on provision of high-quality and timely information from health care providers. Secondly, families' experience was of ill-coordinated and time-starved services, with few having access to specialist provision from Regional Genetics Services; these perspectives were consistent with health professionals' views of services. Thirdly, we confirm previous findings that genetic information is difficult to communicate and comprehend, further complicated by the need to communicate the relationship between cousin marriage and recessive disorders. A communication tool we developed and piloted is described and offered as a useful resource for communicating complex genetic information.

A study of the reliability of reported premorbid adjustment in schizophrenic patients.

A study was conducted to determine the interrater reliability and the inter-informant reliability of two rating scales commonly used with schizophrenic patients. Both scales were completed by two informants for each of 45 schizophrenics. The Levels of Functioning Scale, which measures current social functioning, gave consistent results both between raters and between informants. The Premorbid Asocial Adjustment Scale, which measures social functioning during childhood and adolescence, produced very high reliability between raters but very poor reliability between informants. This suggests that much of the data collected about premorbid adjustment of schizophrenic patients are not accurate and that attempts to correlate reported premorbid adjustment with biological measures may be invalid. Ways of increasing the reliability and validity of premorbid adjustment measures are discussed.

Correlates of lateral ventricular size in chronic schizophrenia, I: Behavioral and treatment response measures.

The ventricle-brain ratio (VBR) of 28 drug-free male schizophrenic inpatients was significantly higher than that of 21 matched normal control subjects and was not related to severity of positive or negative symptoms. Response to haloperidol in an open 6-week trial using a fixed-dose schedule was not predicted by severity of positive or negative symptoms or by VBR. The nine severely deteriorated patients with chronic "Kraepelinian" schizophrenia had left lateral ventricles 28% larger than their right, whereas the control subjects and other schizophrenic patients did not show ventricular asymmetry.

Positive and negative symptoms and social competence in adolescents at risk for schizophrenia and affective disorder.

The authors compared adolescents at risk for schizophrenia and affective disorder and normal adolescents. The subjects at risk for schizophrenia had significantly poorer social competence, and formal thought disorder was greater in both high-risk groups. There were no group differences in negative symptoms.

Calcium induces cyclic GMP formation in Dictyostelium.

Cyclic GMP is rapidly formed a few seconds after binding of chemotactic signalling molecules to specific receptors on the cell surface of Dictyostelium amoebae. This phenomenon could be mimicked by addition of a pulse of Ca2+ to permeabilised amoebae. The concentration of Ca2+ for half-maximal response was 60 microM. Other ions (K+, Na+, Mg+ or Mn+) had no effect. A pulse of 5 microM IP3 produced a cyclic GMP response of similar magnitude but IP2 elicited no response. The data provide strong support for the hypothesis that cell surface receptor binding induces cyclic GMP formation by liberating Ca2+ from internal stores.

Zinc deficiency in senile purpura.

Fasting plasma zinc concentrations were lower in elderly people with senile purpura than in a control group matched for age. No significant difference was found in the mean serum concentration of albumin, which is the main binder of zinc. No other clinical or laboratory findings differentiated the two groups. As the cause of the low plasma zinc values has not been found it is suggested that further studies of the related factors including input, output, and binding should be made before a therapeutic trial is launched.

Positive and negative symptoms in schizophrenia.

Negative and positive symptoms were determined for 46 drug-free patients who met Research Diagnostic Criteria (RDC) and/or Feighner criteria for schizophrenia. A modified version of the Scale for the Assessment of Negative Symptoms (SANS) was completed for each patient based on items from the Schedule for Affective Disorders and Schizophrenia (SADS) and other scales. Positive symptoms were scored from the SADS as well as from the following four diagnostic systems: RDC, Schneider's first-rank symptoms, the 12-point Flexible system, and Langfeldt's criteria for poor prognosis schizophrenia. For all patients, there was no correlation of negative symptoms and positive symptoms defined by any diagnostic system. Within the paranoid and undifferentiated subtypes, there was a positive correlation of positive and negative symptoms. Patients moving from stable to exacerbated states had an increase in both positive and negative symptoms, and patients with a poor history of treatment response had both more positive and more negative symptoms than responsive patients in a stable state. These results do not support the view that subgroups of patients have predominantly either negative or positive symptoms.

Complications in arthroscopic meniscal surgery.

Arthroscopic meniscal procedures as a whole have an acceptably low complication rate. The rate is no higher than the average for all arthroscopic procedures. In the hands of experienced arthroscopic surgeons the complication rate for meniscal repair is slightly lower than that for arthroscopic partial meniscectomy. Attention to anatomic detail, knee positioning, and proper surgical technique has resulted in a significant decrease in the incidence of major neurovascular injuries. The complication rate for outside-in meniscal repair is no lower than that for inside-out meniscal repair. Further refinements in surgical technique, suture materials, and instrumentation should result in an even lower complication rate. Ongoing studies to determine when the repaired meniscus has achieved clinical stability may allow earlier range of motion and further lessen postoperative stiffness.

Complications in arthroscopic surgery of the knee and shoulder.

Arthroscopy is a valuable technique used by the majority of orthopedic surgeons in practice. Complications in arthroscopy have been compiled on a formal basis since 1983. Several studies on complications are reviewed and summarized. A recent prospective study on complications is reviewed in detail. The most frequent type of complication encountered in arthroscopic surgery is hemarthrosis. The procedure with the highest complication rate is the lateral retinacular release. Technical considerations are discussed which would be useful in lessening the incidence of complications in arthroscopy.

Baseline data on the delivery of clinical preventive services provided by nurse practitioners.

The National Alliance of Nurse Practitioners (NANP) was one of five primary care provider groups that participated in a national government-sponsored survey on clinical preventive services (CPSs). The survey was based on 17 of the Healthy People 2000 national health objectives related to CPSs. This survey was sent to 2000 randomly selected nurse practitioners (NPs) to obtain information concerning the percentage of their patients who "routinely" receive the specified assessment and intervention services. Data from 892 completed and returned survey instruments indicated that NPs already exceed the Healthy People 2000 objective targets in some important clinical preventive assessment and intervention areas. They are close to the targets in a number of other CPS areas. In some areas, however, NP provision of preventive services was reported to be below the Healthy People 2000 targets. This data has far-reaching implications for NP practice, basic and continuing education, and curriculum reform.