Research campaigns in the UK National Health Service: patient recruitment and questions of valuation

The National Institute for Health Research (NIHR) aims to improve national ‘health and wealth' by providing infrastructural support to enable clinical research in National Health Service settings in England and Wales. Cognisant of the consequences of studies' failure to achieve required numbers of participants, it also actively campaigns to promote patient awareness of research, and willingness to participate in trials. In this paper, we analyse recent NIHR campaigns and policies designed to encourage patients to participate in clinical research to interrogate how they are implicated in the national bioeconomy. In doing so we expand the notion of ‘clinical labour' to include the work of patient recruitment and highlight an emergent obligation on patients to contribute to research processes. Whereas once patient knowledge and experience may have been devalued, here we draw on the concept of ‘assetisation' (Birch 2012) to explore the emergent relationship between healthcare system and patient as research participant. We consider how patients' contribution goes beyond the provision of standardised objects of valuation so that patients themselves may be perceived as assets to, not only recipients of, the national healthcare system.     

Dyspareunia Related to GSM: Association of Total Vaginal Thickness via Transabdominal Ultrasound

IntroductionIt has previously been suggested in the literature that ultrasound measurement of total vaginal wall thickness (TVT) differs significantly between pre- and postmenopausal women, indicating that it may be a useful and noninvasive objective assessment to correlate the degree of vaginal atrophy to patient-reported symptoms.AimThe purpose of this cross-sectional pilot study was to determine whether TVT in postmenopausal women, as measured with transabdominal ultrasound, is associated with patient-reported dyspareunia and symptoms related to genitourinary symptomatology.MethodsPostmenopausal women presenting for pelvic ultrasound had TVT and total mucosal thickness (TMT) measured via transabdominal ultrasound. A questionnaire also was administered assessing menopausal status, relevant medical history, and self-report of dyspareunia and other symptoms related to the genitourinary syndrome of menopause (GSM). This questionnaire was derived from the Vulvovaginal Symptom Questionnaire, which has been validated in the literature.Main Outcome MeasureThe main outcome measures included the average TVT and TMT for postmenopausal women reporting any symptom of GSM and average TVT and TMT of women reporting no symptoms of GSM.ResultsData from 44 postmenopausal women showed no significant association between transabdominal ultrasound-measured TVT or TMT and patient report of dyspareunia or other genitourinary symptoms. Data were stratified by individual GSM symptoms, sexual symptoms as an aggregate, and individual sexual symptoms. Neither of these subgroups showed a statistically significant difference in TVT or TMT between symptomatic and asymptomatic women.Clinical ImplicationsAlthough no statistically significant data were derived from this study, we propose that future studies investigating the longitudinal relationship between TVT and GSM symptomatology may show an association between total vaginal thickness measurement change over time as determined by ultrasound with the presence of patient-reported dyspareunia and other GSM symptoms.Strengths & LimitationsThis study is limited by its small sample size as well as the patient population, which was restricted to postmenopausal women with a clinical indication for ultrasound. A major strength of this investigation is that it is the first study to look at the relationship between sexual pain and other GSM symptoms and TVT using transabdominal ultrasound, which is a readily available, non-invasive tool in most clinical settings.ConclusionBased on the results of this small pilot study, transabdominal pelvic ultrasound cannot be used at this time to objectively quantify the presence of sexual pain or other GSM symptoms; however, future studies should continue to investigate the longitudinal relationship between these 2 variables.Balica AC, Cooper AM, McKevitt MK, et al. Dyspareunia Related to GSM: Association of Total Vaginal Thickness via Transabdominal Ultrasound. J Sex Med 2019; 16:2038–2042.     

Preventing stroke: a narrative review of community interventions for improving hypertension control in black adults

Incidence rates for stroke and hypertension are higher in black ethnic groups of African descent in the USA and UK than in white groups, suggesting a need for targeted intervention. We conduct a narrative review of published research evidence on community interventions to manage hypertension among black ethnic groups, and explore the concept of cultural sensitivity in these interventions. Data sources comprised computer-aided searches of published studies over the years 1981 to March 2006, on community strategies for improving hypertension control targeting black groups, and further references from these articles. Twenty-seven relevant studies were identified. Health education was associated with improvements in knowledge about hypertension, while education combined with individualised support for patients to self-manage hypertension, including goal setting and monitoring to enhance patient self-management of hypertension, and family support in managing hypertension were associated with reductions in blood pressure levels and improvements in blood pressure control. Collaboration with black communities, using local or minority ethnic staff, conducting preliminary research with target groups to investigate perceptions and canvass ideas for the intervention design were common methods assumed to achieve cultural sensitivity. Studies, however, provided insufficient robust evidence of the effectiveness of these strategies in terms of quantifiable outcomes, although this criterion is contested, with social justice arguments being offered instead. Implicit assumptions about homogeneity and shared interests within the 'community', and representation of 'community' views have implications for the effectiveness of interventions. These findings highlight areas for the future development of interventions to reduce hypertension rates in black groups, and factors that need to be robustly investigated and explicitly addressed in intervention design.     

The elderly on dialysis: some considerations in compliance

Compliance with scheduled treatments, dietary and fluid restrictions, and multiple medications is an important component in the care and well-being of end-stage renal disease (ESRD) patients. Given the rigorus and complex demands of dialysis, it is important to examine the issue of compliance, focusing on a large and ever-increasing segment of our patient population, the elderly. The ESRD literature reflects efforts to define and measure levels of compliance, identify factors that influence and predict compliance, and develop intervention strategies to improve adherence to treatment regimens. While limited attention has been focused specifically on the elderly, there are studies suggesting that age may be a factor associated with improved adherence and that social support may be a significant contributor to compliance in this patient group. In an effort to examine the current status and needs of the dialysis elderly, research is in progress at Chromalloy American Kidney Center, Washington University, which replicates a study of 5 years ago. Eighty-four patients age 60 and over, on dialysis for a minimum of 6 months, were identified. Sociodemographic, treatment, compliance, and functional capacity data were collected; additional mental and psychological testing was completed on patients willing and able to participate. Preliminary data suggest the current elderly population is larger and significantly older than that of 5 years ago. Other sociodemographic data indicate the population is increasingly female, black, and more socioeconomically disadvantaged. In regard to compliance, the vast majority of elderly demonstrate good compliance as measured by serum potassium, fair to good compliance with phosphorus, and fair to poor compliance with fluid restrictions.(ABSTRACT TRUNCATED AT 250 WORDS)     

Developing a novel peer support intervention to promote resilience after stroke

Stroke can lead to physical, mental and social long‐term consequences, with the incidence of stroke increasing with age. However, there is a lack of evidence of how to improve long‐term outcomes for people with stroke. Resilience, the ability to ‘bounce back’, flourish or thrive in the face of adversity improves mental health and quality of life in older adults. However, the role of resilience in adjustment after stroke has been little investigated. The purpose of this study is to report on the development and preliminary evaluation of a novel intervention to promote resilience after stroke. We applied the first two phases of the revised UK Medical Research Council (UKMRC) framework for the development and evaluation of complex interventions: intervention development (phase 1) and feasibility testing (phase 2). Methods involved reviewing existing evidence and theory, interviews with 22 older stroke survivors and 5 carers, and focus groups and interviews with 38 professionals to investigate their understandings of resilience and its role in adjustment after stroke. We used stakeholder consultation to co‐design the intervention and returned to the literature to develop its theoretical foundations. We developed a 6‐week group‐based peer support intervention to promote resilience after stroke. Theoretical mechanisms of peer support targeted were social learning, meaning‐making, helping others and social comparison. Preliminary evaluation with 11 older stroke survivors in a local community setting found that it was feasible to deliver the intervention, and acceptable to stroke survivors, peer facilitators, and professionals in stroke care and research. This study demonstrates the application of the revised UKMRC framework to systematically develop an empirically and theoretically robust intervention to promote resilience after stroke. A future randomised feasibility study is needed to determine whether a full trial is feasible with a larger sample and wider age range of people with stroke.     

Clinical determinants of long-term quality of life after stroke

OBJECTIVES: To determine factors that independently predict health-related quality of life (HRQOL) 1 and 3 years after stroke. METHODS: Subjects numbering 397, from a population-based register of first-ever strokes were assessed for HRQOL using the Short Form 36 (SF36) 1 year after stroke. Physical (PHSS) and mental health (MHSS) summary scores were derived from the eight domains of HRQOL in the SF36. Multivariate stepwise regression analyses were conducted to determine independent predictors of these scores; beta coefficients with 95% CI were obtained.beta coefficient is the difference between average value of the variable (e.g. male) and average value under consideration (e.g. female). Demographic and stroke risk factors, neurological impairments and cognitive impairment (MMSE <24) were included in the models. Similar analyses were undertaken on 150 subjects 3 years post-stroke. RESULTS: A year after stroke, independent predictors of the worst PHSS were of females (beta coefficient -3.3: 95% CI -5.7 to -0.8), manual workers (-3.2: -5.9 to -0.4), diabetes (-4.2: -7.7 to -0.8), right hemispheric lesions (-4.9: -8.7 to -1.2), urinary incontinence (-7.8: -11.6 to -4.1) and cognitive impairment (-2.7: -5.5 to -0.1); the worst MHSS were associated with being Asian (-11.8: -20.6 to -3.0), ischaemic heart disease (-2.7: -5.4 to -0.03), cognitive impairment (-3.04: -5.8 to -0.3). Subjects aged 65-75 years (5.4: 2.5 to -8.4) had better MHSS than those <65 years. Three years post-stroke, independent predictors of worse PHSS were hypertension (-8.7: -13.5 to -3.9), urinary incontinence (-8.1: -15 to -1.1) and cognitive impairment (-8.3: -13.2 to -3.5). CONCLUSIONS: Determinants of HRQOL vary both over time after stroke and whether physical or psychosocial aspects of HRQOL are being considered. This study provides valuable information on factors predicting long-term HRQOL, which can be taken into consideration in audits of clinical practice or in future interventional studies aiming to improve HRQOL after stroke.