Joy Adamson

Systematic review of information and support interventions for caregivers of people with dementia.

BackgroundDementia is an important health and social care problem and is one of the main causes of disability in later life. The number of families affected by dementia will dramatically increase over the next five decades. Despite the implications for health and social care services in the future, the overwhelming majority of care for people with dementia takes place away from health care settings. Providing informal care for someone with dementia can be psychologically, physically and financially expensive and a range of health service interventions aimed at supporting and providing information to these carers has developed to help carers meet these demands. This review examines whether information and support interventions improve the quality of life of people caring for someone with dementia.MethodsA systematic review examining evidence from randomised controlled trials in which technology, individualised or group-based interventions built around the provision of support and/or information were evaluated.ResultsForty-four studies were included in the review. Controlling for the quality of the evidence, we found statistically significant evidence that group-based supportive interventions impact positively on psychological morbidity. However, whilst the improvement was unlikely to be due to chance, the clinical significance of this finding should be interpreted tentatively, due to the difficulties in interpreting the standardised mean difference as a measure of effect and the complex aetiology of depression. No evidence was found for the effectiveness of any other form of intervention on a range of physical and psychological health outcomes.ConclusionThere is little evidence that interventions aimed at supporting and/or providing information to carers of people with dementia are uniformly effective. There is a pressing need to ensure that supportive interventions at the development stage are accompanied by good quality randomised evaluations in which outcomes that are important to clinicians and carers are measured.

The opportunities and challenges of pragmatic point-of-care randomised trials using routinely collected electronic records: Evaluations of two exemplar trials

BACKGROUND Pragmatic trials compare the effects of different decisions in usual clinical practice. OBJECTIVES To develop and evaluate methods to implement simple pragmatic trials using routinely collected electronic health records (EHRs) and recruiting patients at the point of care; to identify the barriers and facilitators for general practitioners (GPs) and patients and the experiences of trial participants. DESIGN Two exemplar randomised trials (Retropro and eLung) with qualitative evaluations. SETTING Four hundred and fifty-nine English and Scottish general practices contributing EHRs to a research database, of which 17 participated in the trials. PARTICIPANTS Retropro aimed to recruit 300 patients with hypercholesterolaemia and high cardiovascular risk and eLung aimed to recruit 150 patients with a chronic obstructive pulmonary disease exacerbation. INTERVENTIONS Retropro randomised between simvastatin and atorvastatin and eLung between immediate antibiotics and deferred or non-use. eLung recruited during an unscheduled consultation using EHR flagging. MAIN OUTCOME MEASURE Successful trial completion with implementation of information technology (IT) system for flagging and data processing and documentation of operational and scientific experiences. DATA SOURCES EHR research database. RESULTS The governance approval process took over 3 years. A total of 58.8% of the practices (n = 270) expressed interest in participating. The number of interested practices dropped substantially with each stage of the governance process. In Retropro, 6.5% of the practices (n = 30) were eventually approved and 3.7% (n = 17) recruited patients; in eLung, these numbers were 6.8% (n = 31) and 1.3% (n = 6) respectively. Retropro successfully completed recruitment (301 patients) whereas eLung recruited 31 patients. Retropro recruited 20.6% of all statin starters in recruiting practices and 1.1% in the EHR database; the comparable numbers for eLung were 32.3% and 0.9% respectively. The IT system allowed for complex eligibility criteria with central on and off control of recruitment and flagging at a practice. Good Clinical Practice guidelines, governance and consent procedures were found to have substantially affected the intended simple nature of the trials. One qualitative study of 13 clinicians found that clinicians were generally positive about the principle of computerised trial recruitment (flagging during consultation). However, trials which did not include patients with acute illness were favoured. The second qualitative process evaluation interviewed 27 GPs about their actual experiences, including declining, recruiting and non-recruiting GPs. Opportunistic patient recruitment during a routine GP consultation was found to be the most controversial element. The actual experiences of recruiting patients during unscheduled consultation were generally more positive than the hypothetical views of GPs. Several of the recruiting GPs reported the process took 5 minutes and was straightforward and feasible on most occasions. Almost all GPs expressed their strong support for the use of EHRs for trials. Ten eLung participants were interviewed, all of whom considered it acceptable to be recruited during a consultation and to use EHRs for trials. CONCLUSIONS EHR point-of-care trials are feasible, although the recruitment of clinicians is a major challenge owing to the complexity of trial approvals. These trials will provide substantial evidence on clinical effectiveness only if trial interventions and participating clinicians and patients are typical of usual clinical care and trials are simple to initiate and conduct. Recommendations for research include the development of evidence and implementation of risk proportionality in trial governance and conduct. TRIAL REGISTRATION Current Controlled Trials ISRCTN33113202 and ISRCTN72035428. FUNDING This project was funded by the NIHR Health Technology Assessment programme and the Wellcome Trust and will be published in full in Health Technology Assessment; Vol. 18, No. 43. See the NIHR Journals Library website for further project information.

Research in Black and White

The authors consider the methodological, interpretative, and practical issues that arise when there is a difference in ethnicity between researcher and informant in qualitative research by drawing on the academic literature and their fieldwork experiences as White researchers undertaking studies with individuals of African/Caribbean and South Asian descent. Some contemporary issues raised by “researching the other” in the context of pragmatic health services research are highlighted, including access to same-ethnicity researchers, the involvement of interpreters, and the potential for ethnocentric interpretation. The authors believe that qualitative research should be judged by the plausibility of the findings and by a critical evaluation of the way in which the research was conducted and the reflexivity of the researcher.

The Effectiveness and Cost‐Effectiveness of Respite for Caregivers of Frail Older People

The proportion of frail elderly people in the industrialized world is increasing. Respite care is a potentially important way of maintaining the quality of life for these people and their caregivers. The objective of this systematic review was to determine the effectiveness and cost‐effectiveness of different models of community‐based respite care for frail older people and their caregivers. To identify relevant studies, 37 databases were searched, and reference checking and citation searches were undertaken. Well‐controlled effectiveness studies were eligible for inclusion, with uncontrolled studies admissible only in the absence of higher‐quality evidence. Studies assessed the effect of community‐based respite on caregivers of frail elderly people relative to usual care or to another support intervention. Eligible economic evaluations also addressed costs. Where appropriate, data were synthesized using standard meta‐analytic techniques. Ten randomized, controlled trials, seven quasi‐experimental studies and five uncontrolled studies were included in the review. For all types of respite, the effects upon caregivers were generally small, with better‐controlled studies finding modest benefits only for certain subgroups, although many studies reported high levels of caregiver satisfaction. No reliable evidence was found that respite care delays entry to residential care or adversely affects frail older people. The economic evaluations all assessed day care, which tended to be associated with similar or higher costs than usual care. Given the increasing numbers of frail elderly people and the lack of up‐to‐date, good‐quality evidence for all types of respite care, better‐quality evidence is urgently needed to inform current policy and practice.

Performance of the WHO Rose angina questionnaire in post-menopausal women: Are all of the questions necessary?

Objective: To assess the performance of a shortened version of the Rose angina questionnaire focusing on exertional chest pain. Methods: Cross sectional analysis of 3987 women aged 60 to 79 years from 23 British towns. The performances of definite Rose angina (using data from the full Rose angina questionnaire) and exertional chest pain (using data from a subset of three questions from the Rose angina questionnaire) were assessed against a medical record of angina. Results: The sensitivity (the proportion with a medical record of angina who were identified as having angina by the questionnaire) was 29.9% (95% confidence intervals 25.7% to 34.4%) comparing definite Rose angina to any medical record of angina since 1978 and 50.7% (45.9% to 55.5%) comparing exertional chest pain to any medical record diagnosis of angina. The positive predictive values of both questionnaires were similar. When the two questionnaires were compared with a gold standard of a primary care consultation for angina symptoms within the past five years the sensitivity of definite Rose angina was 33.0% (26.9% to 39.6%) and that of exertional chest pain was 51.8% (45.1% to 58.5%). Although the sensitivity of both versions of the questionnaire was greater in those aged 60–69 years compared with those aged 70–79 years, it remained higher in the exertional chest pain version of the questionnaire than for definite Rose angina based on the full version of the questionnaire in both age groups. Performance of either version of the questionnaire was not affected by occupational social class. Conclusions: With respect to identifying women with a medical diagnosis of angina or those presenting to primary care with anginal symptoms, these results suggest that a shortened version of the Rose angina questionnaire focusing on exertional chest pain performs better than the full version. Other studies suggest that exertional chest pain is the crucial element of the Rose angina questionnaire with respect to predicting future coronary events. It is concluded that using a shortened version of the Rose angina questionnaire is adequate in epidemiological studies.

Do women consult more than men? A review of gender and consultation for back pain and headache

Objectives: Because women consult their general practitioners more frequently on average than men, it is commonly assumed that they consult more for all symptoms and conditions. This assumption is reinforced by qualitative studies reporting a widespread reluctance to consult by men. However, few studies directly compare consultation in men and women experiencing similar symptoms or conditions. Methods: A systematic review of the evidence on gender and consultation for two common symptoms, back pain and headache. Extensive electronic searches identified 15 papers reporting the relationship between gender and help-seeking for back pain and 11 papers for headache. Two independent reviewers assessed articles for inclusion and extracted data from eligible studies. Results: Few studies compared consultation patterns for these symptoms among men and women known to have experienced the symptom. The quality of the studies was variable. Overall, evidence for greater consultation by women with back pain was weak and inconsistent. Among those with back pain, the odds ratios for women seeking help, compared with men, ranged from 0.6 (95% confidence intervals 0.3, 1.2, adjusted only for age) to 2.17 (95% confidence intervals 1.35, 3.57, unadjusted), although none of the reported odds ratio, below 1.00 was statistically significant. The evidence for women being more likely to consult for headache was a little stronger. Five studies showed a statistically elevated odds ratio, and none suggested that men with headache symptoms were more likely to consult than women with headache symptoms. Limitations to the studies are discussed. Conclusion: Given the strength of assumptions that women consult more readily for common symptoms, the evidence for greater consultation amongst women for two common symptoms, headache and back pain, was surprisingly weak and inconsistent, especially with respect to back pain.

Are older people dying of depression? Findings from the medical research council trial of the assessment and management of older people in the community

Objectives: To examine the relationship between symptoms of depression and mortality in older people.

Improving the effectiveness of interventions in palliative care: the potential role of qualitative research in enhancing evidence from randomized controlled trials

Evaluating interventions in palliative care using randomized controlled trials (RCTs) has helped advance the specialty and create an evidence base for the delivery of care. RCTs, however, are notoriously difficult to conduct in palliative care, raising a variety of practical, ethical and moral dilemmas. Mixed-methods research, which combines qualitative research and RCTs, offers a potential solution to these problems. This paper begins by examining the theoretical basis for combining the two approaches, before reviewing the specific role qualitative research could play in planning, conducting and implementing trials. The paper then goes on to explore how palliative care research currently uses the mixed-methods approach, by searching the trials included in six Cochrane Systematic Reviews (n = 146) on the incorporation of qualitative research. Only one trial undertook qualitative research. These findings reflect some of the challenges facing mixed-methods research, which include lack of experience in a research team, the problems of obtaining funding and difficulties in publishing. The paper concludes that while combining qualitative and quantitative research is not a panacea for methodological problems in palliative care research, with careful planning and integration, the approach may enhance the clinical and ethical utility of trial findings, which in turn will improve patient care.

Help-seeking behaviour among people living with chronic hip or knee pain in the community

BackgroundA large proportion of people living with hip or knee pain do not consult health care professionals. Pain severity is often believed to be the main reason for help seeking in this population; however the evidence for this is contradictory. This study explores the importance of several potential risk factors on help seeking across different practitioner groups, among adults living with chronic hip or knee pain in a large community sample.MethodsHealth care utilization, defined as having seen a family doctor (GP) during the past 12 months; or an allied health professional (AHP) or alternative therapist during the past 3 months, was assessed in a community based sample aged 35 or over and reporting pain in hip or knee. Adjusted odds ratios were determined for social deprivation, rurality, pain severity, mobility, anxiety/depression, co-morbidities, and body mass index.ResultsOf 1119 persons reporting hip or knee pain, 52% had pain in both sites.Twenty-five percent of them had seen a doctor only, 3% an AHP only, and 4% an alternative therapist only. Thirteen percent had seen more than one category of health care professionals, and 55% had not seen any health care professional. In the multivariate model, factors associated with consulting a GP were mobility problems (OR 2.62 (1.64-4.17)), urban living (OR 2.40 (1.14-5.04) and pain severity (1.28 (1.13-1.44)). There was also some evidence that obesity was associated with increased consultation (OR 1.72 (1.00-2.93)). Factors were similar for consultation with a combination of several health care professionals. In contrast, seeing an alternative therapist was negatively associated with pain severity, anxiety and mobility problems (adjusting for age and sex).ConclusionDisability appears to be a more important determinant of help-seeking than pain severity or anxiety and depression, for adults with chronic pain in hip or knee. The determinants of seeking help from alternative practitioners are different from determinants of consulting GPs, AHPs or a combination of different health care providers.

Prevalence and risk factors for joint pain among men and women in the West of Scotland Twenty-07 study

Objective: To examine the association between three modifiable risk factors (obesity, smoking, and alcohol consumption) and reported joint pain. Methods: Cross sectional data were collected on 858 people aged 58 years living in the West of Scotland and on the same individuals four years later, aged 62 years. Results: There was a positive relation between obesity and reported pain in the hips, knees, ankles, and feet. The strongest relation was with knee pain (odds ratio = 2.42 (95% confidence interval, 1.65 to 3.56)). There were no strong consistent associations between smoking habits and pain in any joint after adjusting for sex, alcohol consumption, body mass index, social class, and occupational exposures. Similarly, alcohol was not consistently related to pain in any joint in the fully adjusted models. Conclusions: Obesity had consistent and readily explained associations with lower limb joint pain. The data suggest that smoking behaviour and alcohol consumption are not consistently associated with joint pain across the body.