The assessment of sarcopenia and the frailty phenotype in the outpatient care of older people: implementation and typical values obtained from the Newcastle SarcScreen project.

PURPOSE: Sarcopenia and the frailty phenotype both indicate older adults at risk of adverse health outcomes and yet are not widely assessed in practice. We developed the Newcastle SarcScreen to enable assessment of these two ageing syndromes during clinical care. In the setting of our Older People's Medicine Day Unit, our aims were to describe the implementation of the SarcScreen and to examine the typical values obtained. METHODS: The SarcScreen comprised height, weight, questions (three on the Fried frailty phenotype and five on the SARC-F questionnaire), grip strength and gait speed. We analysed data from 552 patients completing the SarcScreen. We expressed grip strength as Z-scores (number of standard deviations above the mean expected for a patient's age and sex). RESULTS: It was possible to implement the SarcScreen. In 552 patients (65.9% females) with mean age 80.1 (7.7) years, grip strength was feasible in 98.2% and gait speed in 82.1%. Gait speed was typically not assessed due to mobility impairment. Most patients had weak grip strength (present in 83.8%), slow gait speed (88.8%) and the frailty phenotype (66.2%). We found a high prevalence of probable sarcopenia and the frailty phenotype across all age groups studied. This was reflected by low grip strength Z-scores, especially at younger ages: those aged 60-69 had grip strength 2.7 standard deviations (95% CI 2.5-2.9) below that expected. CONCLUSION: It is possible to implement an assessment of sarcopenia and the frailty phenotype as part of the routine outpatient care of older people.

The willingness of UK adults with intellectual disabilities to take COVID-19 vaccines.

BACKGROUND: Given the much greater COVID-19 mortality risk experienced by people with intellectual disabilities (ID), understanding the willingness of people with ID to take a COVID-19 vaccine is a major public health issue. METHOD: In December 2020 to February 2021, across the United Kingdom, 621 adults with ID were interviewed remotely and 348 family carers or support workers of adults with ID with greater needs completed an online survey, including a question on willingness to take a COVID-19 vaccine if offered. RESULTS: Eighty-seven per cent of interviewees with ID were willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having already had a flu vaccine, gaining information about COVID-19 from television but not from social media, and knowing COVID-19 social restrictions rules. A percentage of 81.7% of surveyed carers of adults with ID with greater needs reported that the person would be willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having a health condition of concern in the context of COVID-19, having had a flu vaccine, being close to someone who had died due to COVID-19, and having shielded at some point during the pandemic. CONCLUSIONS: Reported willingness to take the COVID-19 vaccine is high among adults with ID in the United Kingdom, with factors associated with willingness having clear implications for public health policy and practice.

Prevalence estimation of intellectual disability using national administrative and household survey data: The importance of survey question specificity.

BACKGROUND: Variability in prevalence estimation of intellectual disability has been attributed to heterogeneity in study settings, methodologies, and intellectual disability case definitions. Among studies based on national household survey data specifically, variability in prevalence estimation has partly been attributed to the level of specificity of the survey questions employed to determine the presence of intellectual disability. SPECIFIC AIMS & METHOD: Using standardised difference scoring, and 'intellectual disability' survey data from the 2007 Northern Ireland Survey on Activity Limitation and Disability (NISALD) (N=23,689) and the 2011 Northern Ireland Census (N=1,770,217) the following study had two aims. First, we aimed to demonstrate the effects of survey question specificity on intellectual disability prevalence estimation. Second, we aimed to produce reliable estimates of the geographic variation of intellectual disability within private households in Northern Ireland while also assessing the socio-demographic, health-related and disability characteristics of this population. FINDINGS: Prevalence estimates generated using the more crudely classified intellectual disability Census data indicated a prevalence of 2% for the overall population, 3.8% for children aged between 0 and 15 years, and 1.5% for citizens aged 16 years or older. Intellectual disability prevalence estimates generated using the more explicitly defined 2007 NISALD data indicated a population prevalence of 0.5% for the overall population, 1.3% for children aged between 0 and 15 years, and 0.3% for citizens aged 16 years or older. The NISALD estimates were consistent with most recent international meta-analysis prevalence estimates. According to the NISALD data, the majority of those with an intellectual disability were male, lived outside Belfast, and experienced severe intellectual disability, with multiple comorbid health conditions. DISCUSSION: The current findings highlight the importance of survey question specificity in the estimation of intellectual disability prevalence and provide reliable prevalence estimates of intellectual disability in Northern Ireland. The findings also demonstrate the utility of administrative data for detecting and understanding intellectual disability, and inform recommendations on how to maximise use of future intellectual disability Census data.

Mortality in people with intellectual disabilities in England.

BACKGROUND: People with intellectual disabilities (IDs) die at younger ages than the general population, but nationally representative and internationally comparable mortality data about people with ID, quantifying the extent and pattern of the excess, have not previously been reported for England. METHOD: We used data from the Clinical Practice Research Datalink database for April 2010 to March 2014 (CPRD GOLD September 2015). This source covered several hundred participating general practices comprising roughly 5% of the population of England in the period studied. General practitioner (GP) records identified people diagnosed by their GP as having ID. Linked national death certification data allowed us to derive corresponding mortality data for people with and without ID, overall and by cause. RESULTS: Mortality rates for people with ID were significantly higher than for those without. Their all-cause standardised mortality ratio was 3.18. Their life expectancy at birth was 19.7 years lower than for people without ID. Circulatory and respiratory diseases and neoplasms were the three most common causes of death for them. Cerebrovascular disease, thrombophlebitis and pulmonary embolism all had standardised mortality ratios greater than 3 in people with ID. This has not been described before. Other potentially avoidable causes included epilepsy (3.9% of deaths), aspiration pneumonitis (3.6%) and colorectal cancer (2.4%). Avoidable mortality analysis showed a higher proportion of deaths from causes classified as amenable to good medical care but a lower proportion from preventable causes compared with people without ID. International comparison to areas for which data have been published in sufficient detail for calculation of directly standardised rates suggest England may have higher death rates for people with ID than areas in Canada and Finland, and lower death rates than Ireland or the State of Massachusetts in the USA. CONCLUSIONS: National data about mortality in people with ID provides a basis for public health interventions. Linked data using GP records to identify people with ID could provide comprehensive population-based monitoring in England, unbiased by the circumstances of illnesses or death; to date information governance constraints have prevented this. However, GPs in England currently identify only around 0.5% of the population as having ID, suggesting that individuals with mild, non-syndromic ID are largely missed. Notably common causes of death suggest control of cardiovascular risk factors, epilepsy and dysphagia, management of thrombotic risks and colorectal screening are important areas for health promotion initiatives.

Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique.

BACKGROUND: Empirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe. METHODS: A two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance. RESULTS: A total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities. CONCLUSIONS: The proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding.

Tolerability and Adherence Problems in Patients on a Stable Dose of Methotrexate: Results of a Multicentre Survey.

INTRODUCTION: Methotrexate is commonly used in patients with inflammatory arthritis. The aim of the present study was to ascertain the prevalence of side effects that patients on methotrexate were tolerating and to establish their adherence to the medication. METHOD: A questionnaire was developed for completion by the healthcare professional with the patient, and piloted in one centre. The questionnaire was then used in six other centres, with the addition of a question about the attractiveness of stopping methotrexate treatment. Efficacy and toxicities were scored for severity on a 10-cm visual analogue scale (VAS). Adherence to the drug was also explored. RESULTS: The prevalence of 'any side effect' ranged from 57% to 86%. The most frequent side effects were fatigue (53%); nausea (38%); mouth ulcers (23%) and hair loss (23%). Efficacy averaged 6.5 cm on the VAS. Results from the combined survey revealed that toxicity averaged 5.9 cm for fatigue, 4.8 cm for nausea, 4.4 for mouth ulcers, 3.9 cm for hair loss and 5.7 cm for 'other' side effects. 13.5% of patients revealed that they had forgotten to take the drug for an average of two weeks, and 25% for an average of 2.5 weeks in the previous year. Participants were more likely to reveal this to a nurse than a doctor. CONCLUSION: Patients put up with a considerable number of side effects in order to benefit from methotrexate therapy. Adherence to this drug merits further study. Copyright © 2015 John Wiley & Sons, Ltd.

Patient education in rheumatoid arthritis: the effectiveness of the ARC booklet and the mind map.

OBJECTIVE: To determine the effectiveness of a pictorial 'mind map' together with the Arthritis Research Campaign (ARC) booklet for imparting knowledge to participants with rheumatoid arthritis (RA). Also, we wished to relate this to their reading ability. METHODS: We studied 363 participants with RA. Reading ability was assessed using the REALM, and knowledge was assessed using the Knowledge Scale Questionnaire (KSQ). Information on educational attainment, disease state and levels of anxiety and depression was also collected. Participants were randomly assigned to receive either the ARC booklet alone or the booklet and the mind map together. RESULTS: A significant minority (15%) of participants were functionally illiterate. There was a statistically significant increase in knowledge across both groups from baseline to reassessment after they were given the literature, but there was no difference in attainment between the groups. The more literate participants gained more knowledge regardless of the information they were given. They were also significantly less anxious and less depressed. CONCLUSIONS: The ARC booklet with or without the mind map was associated with a significant increase in knowledge. Poor readers had poor educational attainment and poor knowledge acquisition. The information on the mind map was not more accessible to them. Different educational strategies will be necessary to educate these patients.

School's out: pathways for young people with intellectual disabilities from out-of-area residential schools or colleges.

BACKGROUND: Previous research, and official guidance, has suggested that planning for the transition between children's and adults' services is failing young people with intellectual disabilities and their families in the UK. Youngsters placed away from home in residential schools or colleges are likely to be at even greater risk of poor transition planning and outcomes, yet there is little understanding of what factors parents consider contribute to a smoother transition and what a satisfactory outcome would be. METHOD: The parents of 15 young people from five areas of the UK were interviewed about what they thought contributed to a satisfactory pathway for their son or daughter from an out-of-area residential school or college on to the next phase of their life. RESULTS: Parents identified four main process issues: being well-connected with other parents or with key professionals; being proactive; having sufficient information; and good forward planning. Most considered a good outcome to be if the young person was happy, fulfilled and stimulated. CONCLUSIONS: Parents were clear about what they thought helped, and there was little disagreement between their views. While some of these factors have been previously identified regarding the transition of disabled youngsters, they raise some unique issues for families with a youngster educated in an out-of-area residential school or college.

Measured ambulation and self-reported health status following total joint replacement for the osteoarthritic knee.

OBJECTIVE: To quantify the increase in ambulation produced by total knee replacement for osteoarthritis (OA) of the knee and to compare this with questionnaire-derived data. METHODS: We compared the measured ambulatory activity and self-reported Nottingham Health Profile (NHP) data of 19 subjects with OA of the knee before and after total knee replacement (TKR). RESULTS: Subjects were considerably restricted in their measured activity before operation compared with subjects with less severe disease. At 6 months the activity had increased by an average of 79% (P=0.02). The pain scale of the NHP had significantly improved at 3 months, as had the mobility scale. Between 3 and 6 months, however, at the same time the measured activity was increasing, self-reported mobility declined. CONCLUSIONS: Replacement of a knee for OA is an effective way of improving ambulation. At 6 months the average increase amounted to 79%. Self-reported mobility did not correlate with mobility measured objectively.

Are the effects of psychosocial exposures attributable to confounding? Evidence from a prospective observational study on psychological stress and mortality.

STUDY OBJECTIVES: To examine the association between perceived psychological stress and cause specific mortality in a population where perceived stress was not associated with material disadvantage. DESIGN: Prospective observational study with follow up of 21 years and repeat screening of half the cohort five years from baseline. Measures included perceived psychological stress, coronary risk factors, and indices of lifecourse socioeconomic position. SETTING: 27 workplaces in Scotland. PARTICIPANTS: 5388 men (mean age 48 years) at first screening and 2595 men at second screening who had complete data on all measures. MAIN OUTCOME MEASURES: Hazard ratios for all cause mortality and mortality from cardiovascular disease (ICD9 390-459), coronary heart disease (ICD9 410-414), smoking related cancers (ICD9 140, 141, 143-9, 150, 157, 160-163, 188 and 189), other cancers (ICD9 140-208 other than smoking related), stroke (ICD9 430-438), respiratory diseases (ICD9 460-519) and alcohol related causes (ICD9 141, 143-6, 148-9, 150, 155, 161, 291, 303, 571 and 800-998). RESULTS: At first screening behavioural risk (higher smoking and alcohol consumption, lower exercise) was positively associated with stress. This relation was less apparent at second screening. Higher stress at first screening showed an apparent protective relation with all cause mortality and with most categories of cause specific mortality. In general, these estimates were attenuated on adjustment for social position. This pattern was also seen in relation to cumulative stress at first and second screening and with stress that increased between first and second screening. The pattern was most striking with regard to smoking related cancers: relative risk high compared with low stress at first screening, age adjusted 0.64 (95% CI 0.42, 0.96), p for trend 0.016, fully adjusted 0.69 (95% CI 0.45, 1.06), p for trend 0.10; high compared with low cumulative stress, age adjusted 0.69 (95% CI 0.44, 1.09), p for trend 0.12, fully adjusted 0.76 (95% CI 0.48, 1.21), p for trend 0.25; increased compared with decreased stress, age adjusted 0.65 (95% CI 0.40, 1.06), p for trend 0.09, fully adjusted 0.65 (95% CI 0.40, 1.06), p for trend 0.08. CONCLUSIONS: This implausible protective relation between higher levels of stress, which were associated with increased smoking, and mortality from smoking related cancers, was probably a product of confounding. Plausible reported associations between psychosocial exposures and disease, in populations where such exposures are associated with material disadvantage, may be similarly produced by confounding, and of no causal significance.

The socioeconomic position of employed women, risk factors and mortality.

Many studies have demonstrated the graded association between socioeconomic position and health. Few of these studies have examined the cumulative effect of socioeconomic position throughout the lifecourse, and even fewer have included women. Those that have explored gender differences affirm the importance of studying the factors that predict women and men's health separately. This study addresses the associations between cross-sectional and longitudinal socioeconomic position, risk factors for cardiovascular disease and mortality from various causes. Analyses are based on data from a cohort of working Scottish women recruited between 1970 and 1973. Five socioeconomic measures were explored in relation to diastolic blood pressure, plasma cholesterol concentration, body mass index, forced expiratory volume in 1 s (FEV1). amount of recreational exercise taken, cigarette smoking and alcohol consumption. In general, for each of the five measures of socioeconomic position, there were significant differences in at least one of the age-adjusted physiological risk factors for cardiovascular disease (diastolic blood pressure, plasma cholesterol concentration, body mass index, FEV1). There were also significant differences in the percentage of current cigarette smokers according to different measures of socioeconomic position, although this was not the case for the other behavioural risk factors for cardiovascular disease (amount of recreational exercise taken, and alcohol consumption). Measures of socioeconomic position were also examined in relation to cause of death for the women who died before 1 January 1999. After adjusting for age and risk factors, a composite measure of lifetime socioeconomic experience was a more potent predictor of all cause mortality and mortality from cardiovascular disease than other measures of socioeconomic position. It therefore seems that conventional measurcs of socioeconomic position, estimated at one point in time, do not adequately capture the effects of socioeconomic circumstances on the risk of mortality among employed women. Thus, a broader range of explanatory factors for mortality differentials than currently exists must be considered, and must include consideration of factors operating throughout the lifecourse.

Extraction and validation of a lower limb HAQ by comparison with objective measurement of ambulatory activity.

OBJECTIVES: Both the Health Assessment Questionnaire (HAQ) and the measurement of spontaneous ambulatory activity are measures that can be used to evaluate disability in RA. METHODS: A cross sectional survey was conducted of 105 RA patients where the HAQ was compared with ambulatory activity from the Numact monitor. Rank correlation was used to evaluate the relationships between activity and the complete and individual sections of the HAQ. RESULTS: Correlation of activity with total HAQ produced significant results (r= -0.29 to -0.48). Correlation with individual sections showed the strongest association with "Hygiene", followed by "Activities", and "Walking". A lower limb HAQ was devised using these and the dressing and rising items. CONCLUSIONS: HAQ and recorded activity measure different but related aspects of disability. Activity should be used if the ability to quantify the result outweighs the extra effort involved in the study.

Perceived stress and coronary heart disease risk factors: the contribution of socio-economic position.

OBJECTIVES: The aim of this study was to explore the relationship between risk factors for coronary heart disease (CHD) and perceived stress, adjusted for socio-economic position. DESIGN: Cross-sectional analysis of CHD risk factors, perceived stress and socio-economic position. METHOD: A cohort of employed Scottish men (N = 5848) and women (N = 984) completed a questionnaire and attended a physical examination. RESULTS: Higher socio-economic groups registered higher perceived stress scores. Perceived stress was associated with the following CHD risk factors in the expected direction: high plasma cholesterol, little recreational exercise, cigarette smoking, and high alcohol consumption. Contrary to expectations, stress was related negatively to high diastolic blood pressure, body mass index (BMI) and low forced expiratory volume. Correction for socio-economic position tended to abolish the associations between stress and physiological risk factors; the associations between stress and behavioural risk factors withstood such correction. The residual patterns of associations between perceived stress and CHD risk were broadly similar for men and women. A lower BMI, a greater number of cigarettes smoked, and greater alcohol consumption were associated with higher levels of perceived stress for both sexes. Lower levels of recreational exercise were associated with higher levels of stress for men only. CONCLUSIONS: Self-reported stress is related to health-related behaviours and to physiological CHD risk factors. The direction of the association with physiological risk was often contrary to expectation and appeared to be largely due to confounding by socio-economic position. In contrast, the association with health-related behaviours was in the expected direction and was largely independent of such confounding.

Spontaneous ambulatory activity as a quantifiable outcome measure for rheumatoid arthritis.

OBJECTIVE: To validate the objective monitoring of ambulatory activity as an outcome measure for rheumatoid arthritis (RA). METHODS: We have compared ambulatory activity to a range of currently favoured outcome measures, ranging from subjective opinions to X-ray damage, in a population of 93 RA sufferers. RESULTS: Correlations were stronger with measures of joint damage and disability, and less strong with measures of disease activity. Sensitivity to change was good. Three different interventions were compared for the quantity of the response, and the results agree with clinical experience, with steroid injection of the knee and use of non-steroidal anti-inflammatory drugs (NSAIDs) having a similar response and the provision of surgical shoes producing a more modest increase in ambulation. CONCLUSION: The measurement of ambulatory activity has validity for RA assessment. It provides different but related data to the currently used measures. It is objective, relevant, quantifiable and of unlimited scale. It could be used to quantify interventions aimed at increasing ambulation, in carefully constructed studies.

Spontaneous ambulatory activity as a quantifiable outcome measure for osteoarthritis of the knee.

OBJECTIVE: Quantifiable outcome measures for disabling diseases such as osteoarthritis (OA) of the knee are necessary in order to compare the impact of different interventions competing for financial resources. Current subjective and questionnaire data are not satisfactory for such study. In this study, we examine the potential of the direct measurement of ambulatory activity as such a measure. POPULATION: Patients with X-ray evidence of OA of the knee recruited to studies of anti-inflammatory agents (n = 29). Patients with OA of the knee awaiting knee replacement surgery (n = 28). METHODS: Comparison of various standard measures with total energy output data from an activity monitor. RESULTS: Spearman rho correlations of ambulatory energy output (number of steps x average amplitude of steps) correlated with other measures. Correlation with physician's opinion was greater than with patient's opinion (r = 0.4 and 0.2, respectively). There was no correlation with visual analogue pain scale or OA severity index. Correlation with scales of the Nottingham Health Profile questionnaire were not significant either for mobility (r = - 0.15) or for pain (r = - 0.13). There was, however, a significant correlation between poor sleep and increased activity (r = 0.34, P < 0.05). Correlation with Kellgren X-ray grade was significant (r = - 0.45, P = 0.01). Patients recruited to anti-inflammatory studies were 69% more active than those awaiting replacement surgery. CONCLUSION: The monitoring of ambulatory activity shows some construct and discriminant validity, and is worthy of further study.

Ambulatory activity as an objective and quantifiable measure of nonsteroidal therapy.

OBJECTIVE: To quantify any increase in short term spontaneous ambulatory activity resulting from the use of nonsteroidal antiinflammatory drugs (NSAID) in patients with rheumatoid arthritis (RA). METHODS: Double blind placebo controlled crossover study of 8 women with RA using conventional assessments and the Numact activity monitor. RESULTS: Patients' ambulatory activity was 50% greater during NSAID treatment compared to placebo treatment. Effect size calculated at 0.62, suggesting good sensitivity to change. The increased activity occurred late morning. CONCLUSION: Spontaneous ambulatory activity is an objective and relevant measure of disability.

A continuous patient activity monitor: validation and relation to disability.

The measurement of patient activity over prolonged periods has been attempted with accelerometer-based devices, but these summate total acceleration and deceleration over time periods, are difficult to relate to recognizable activities and are influenced by passive movement. We describe the development of a portable monitor of ambulation. This logs posture (sitting, standing and lying) and number and vigour of steps in real time over prolonged periods, usually 24 h. This is based on a system of position sensors and an accelerometer which is sampled when the subject is standing. Data are processed through an interface and stored on a Psion Series 3 'palm top' computer. The system has been validated against observation, and the relationship of activity to disability in rheumatoid arthritis explored.

Does genetic anticipation occur in familial rheumatoid arthritis?

OBJECTIVE: To determine if there is evidence for genetic anticipation in rheumatoid arthritis (RA) by analysing the possibility that parental disease status and age at proband conception influence the age of onset and disease severity of the proband. METHOD: RA outpatients were identified and data were also taken from Newcastle multicase RA pedigrees. Comparisons of age of onset and parental age at proband conception were made for pedigrees grouped according to the disease status of the parents. Correlation coefficients and linear regression models were calculated for the age of RA onset in the probands. Measures of disease severity were compared in RA mother-proband pairs. RESULTS: The results were similar in both the outpatient (n = 153) and multicase pedigree (n = 15) samples. Significant results were confined to pedigrees in which the mother had RA (20 of the outpatient probands and seven of the multicase group). Probands in these sibships had a younger age of RA onset than their affected mothers (38.3 years (95% confidence interval (CI) 33.8 to 42.8) versus 53.7 (47.3 to 60.0) (p = 0.002) in the outpatient sample; 32.4 years (25.3 to 39.6) versus 43.4 years (29.0 to 57.9) (p = 0.1) in the multicase pedigrees). In the maternal RA group, both the maternal and paternal age at proband conception showed significant negative correlations (r = -0.65, p = 0.002 and r = -0.60, p = 0.005, respectively in the outpatient sample) and linear regression coefficients with age of proband disease onset. In seven affected mother-proband pairs, the probands had a tendency to more severe disease, despite shorter disease duration and younger age. CONCLUSIONS: This preliminary analysis has suggested that within pedigrees in which the mother has RA, the features of genetic anticipation and observations consistent with premutation models may prevail.