Utility scores are integral to health economics decision-making. Typically, utility scores have not been scored or developed with mental health service users. The aims of this study were to i) collaborate with service users to develop descriptions of five mental health states (psychosis, depression, eating disorder, medication side effects and self-harm); ii) explore feasibility and acceptability of using scenario-based health states in an e-survey; iii) evaluate which utility measures (standard gamble (SG), time trade off (TTO) and rating scale (RS)) are preferred; and iv) determine how different participant groups discriminate between the health scenarios and rank them.This was a co-produced mixed methods cross-sectional online survey. Utility scores were generated using the SG, TTO and RS methods; difficulty of the completing each method, markers of acceptability and participants' preference were also assessed.A total of 119 participants (58%) fully completed the survey. For any given health state, SG consistently generated higher utility scores compared to RS and for some health states higher also than TTO (i.e. SG produces inflated utility scores relative to RS and TTO). Results suggest that different utility measures produce different evaluations of described health states. The TTO was preferred by all participant groups over the SG. The three participant groups scored four (of five) health scenarios comparably. Psychosis scored as the worst health state to live with while medication side-effects were viewed more positively than other scenarios (depression, eating disorders, self-harm) by all participant groups. However, there was a difference in how the depression scenario was scored, with service users giving depression a lower utility score compared to other groups.Mental health state scenarios used to generate utility scores can be co-produced and are well received by a broad range of participants. Utility valuations using SG, TTO and RS were feasible for use with service users, carers, healthcare professionals and members of the general public. Future studies of utility scores in psychiatry should aim to include mental health service users as both co-investigators and respondents.
Background Assistive technology and telecare have been promoted to manage the risks associated with independent living for people with dementia, but there is limited evidence of their effectiveness. Objectives This trial aimed to establish whether or not assistive technology and telecare assessments and interventions extend the time that people with dementia can continue to live independently at home and whether or not they are cost-effective. Caregiver burden, the quality of life of caregivers and of people with dementia and whether or not assistive technology and telecare reduce safety risks were also investigated. Design This was a pragmatic, randomised controlled trial. Blinding was not undertaken as it was not feasible to do so. All consenting participants were included in an intention-to-treat analysis. Setting This trial was set in 12 councils in England with adult social services responsibilities. Participants Participants were people with dementia living in the community who had an identified need that might benefit from assistive technology and telecare. Interventions Participants were randomly assigned to receive either assistive technology and telecare recommended by a health or social care professional to meet their assessed needs (a full assistive technology and telecare package) or a pendant alarm, non-monitored smoke and carbon monoxide detectors and a key safe (a basic assistive technology and telecare package). Main outcome measures The primary outcomes were time to admission to care and cost-effectiveness. Secondary outcomes assessed caregivers using the 10-item Center for Epidemiological Studies Depression Scale, the State–Trait Anxiety Inventory 6-item scale and the Zarit Burden Interview. Results Of 495 participants, 248 were randomised to receive full assistive technology and telecare and 247 received the limited control. Comparing the assistive technology and telecare group with the control group, the hazard ratio for institutionalisation was 0.76 (95% confidence interval 0.58 to 1.01; p = 0.054). After adjusting for an imbalance in the baseline activities of daily living score between trial arms, the hazard ratio was 0.84 (95% confidence interval 0.63 to 1.12; p = 0.20). At 104 weeks, there were no significant differences between groups in health and social care resource use costs (intervention group – control group difference: mean –£909, 95% confidence interval –£5336 to £3345) or in societal costs (intervention group – control group difference: mean –£3545; 95% confidence interval –£13,914 to £6581). At 104 weeks, based on quality-adjusted life-years derived from the participant-rated EuroQol-5 Dimensions questionnaire, the intervention group had 0.105 (95% confidence interval –0.204 to –0.007) fewer quality-adjusted life-years than the control group. The number of quality-adjusted life-years derived from the proxy-rated EuroQol-5 Dimensions questionnaire did not differ between groups. Caregiver outcomes did not differ between groups over 24 weeks. Limitations Compliance with the assigned trial arm was variable, as was the quality of assistive technology and telecare needs assessments. Attrition from assessments led to data loss additional to that attributable to care home admission and censoring events. Conclusions A full package of assistive technology and telecare did not increase the length of time that participants with dementia remained in the community, and nor did it decrease caregiver burden, depression or anxiety, relative to a basic package of assistive technology and telecare. Use of the full assistive technology and telecare package did not increase participants’ health and social care or societal costs. Quality-adjusted life-years based on participants’ EuroQol-5 Dimensions questionnaire responses were reduced in the intervention group compared with the control group; groups did not differ in the number of quality-adjusted life-years based on the proxy-rated EuroQol-5 Dimensions questionnaire. Future work Future work could examine whether or not improved assessment that is more personalised to an individual is beneficial. Trial registration Current Controlled Trials ISRCTN86537017. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment ; Vol. 25, No. 19. See the NIHR Journals Library website for further project information.
Abstract Background To test, in a two-arm, single center, superiority, randomized controlled trial, the effectiveness of and costs associated with a patient-initiated treatment model for people with hemifacial spasm (HFS) and blepharospasm (BEB) in comparison to usual care. Methods One hundred and thirty patients with HFS or BEB, aged 18 years or over, were recruited from a nurse-led botulinum toxin type A clinic at an eye hospital in the United Kingdom (UK), completed baseline measures and were randomized (1:1). The intervention group determined their own botulinum toxin type A (BoNT/A) treatment schedule during the trial period (9 months) and received an information leaflet with a “hotline” number to book an appointment. Usual care appointments were scheduled by treating clinicians. Data analysts were blind to study group. The primary outcomes were disease severity and functional disability, as measured by the Jankovic Rating Scale and Blepharospasm Disability Index, respectively. Secondary outcomes included quality of life, anxiety and depression, satisfaction with care, confidence in the service, economic costs and employment days lost. Results Sixty-five patients were randomized to each group. The intervention demonstrated no statistically significant difference to usual care for any of primary outcomes. On secondary outcomes the levels of anxiety differed significantly (F 2, 142.39 = 1.65, p = 0.02), with the intervention arm exhibiting a decrease and the control arm an increase (Hedges’ g = − 0.26 [99% CI -0.83, 0.32]). No other statistically significant differences were found for secondary outcomes. Overall healthcare costs and costs to the patient were on average £198.95 less (95% CI -£256.76, £654.67; p = 0.10) per participant for those in the intervention compared to usual care, although this finding was not significant. Conclusions We did not observe differences between the patient-initiated treatment model and usual care for people with BEB or HFS, on any primary outcome measure, quality of life, or depression. The patient-initiated treatment model may, however, have the potential to save healthcare costs and reduce anxiety. Patients using this new model were also equally as satisfied in the service and confident in their care as those receiving treatment as usual. Trial registration Clinicaltrials.gov ID NCT02577224 , 16th October 2015.
Delaying Alzheimer’s disease (AD), the most common form of dementia, by five years could decrease the global prevalence of AD by 57% and halve the annual economic impact which is currently estimated to surpass US$2 trillion by 2030. Since no treatment or cure for dementia exist, identifying modifiable factors to reduce the incidence of dementia has become a public health priority. Increased physical activity (PA) has been associated with a lower risk of developing dementia in observational studies. Observational studies have also linked bilingualism (the ability to speak two languages) with a delayed onset of dementia but no risk-reduction in dementia in bilinguals relative to monolinguals. Differences in study outcomes in the fields of PA- and bilingualism- related research to methodological limitations including poor measurement of the exposure (PA and language profiles), small sample sizes, and recruitment of participants with different dementia etiologies. The purpose of this thesis was twofold: i) to explore the roles of PA and bilingualism in dementia risk and ii) to inform the development of a randomized controlled trial (RCT) to test whether studying a foreign language combined with increasing PA can improve cognitive performance in seniors who are at a higher risk of developing AD.
The aim of Chapter two was to review the available evidence linking PA with the risk of developing dementia as well as to explore the effects of increasing PA on cognition in individuals with dementia. Results showed that aerobic, and high-intensity, habitual PA was associated with improved cognition-related biomarkers and lower dementia risk in epidemiological studies. Experimental evidence showed increasing PA improved cognition-related biomarkers and cognition in preclinical phases of dementia, but not in clinical phases. The findings showed that PA is linked with a lower risk of dementia in epidemiological studies, but experimental studies showed little to no improvements in cognition in participants with dementia following a structured PA program. There was evidence indicating that increasing PA levels in the preclinical phase of AD may result in greater translation impact than in participants at the more advanced clinical stage of AD. Most studies assessed PA with self-report measures questioning the accuracy and precision of exposure and recruited participants with dementia irrespective of aetiology, which makes it problematic to discern whether PA is differentially related to varying dementia aetiologies.
The aim of Chapter three was to systematically review the association between bilingualism and the delay in the diagnosis of dementia and AD. Here, we retrieved a total of 20 studies, 15 of which were meta-analysed. Results showed that bilinguals were on average 3.2 (95% CI: 1.5, 4.9) years older than monolinguals at the time of dementia. Moreover, at the time of dementia diagnosis, bilinguals and monolinguals demonstrated a similar level of global cognitive impairment (Hedges’ g = 0.05 95% CI: -0.10, 0.21). Prediction intervals however showed a large dispersion of effect sizes in the meta-analysis comparing monolinguals to bilinguals on the age of dementia diagnosis. To explore possible reasons for the observed dispersion in effect sizes, we conducted subgroup analyses. In one subgroup meta-analysis comparing studies that had recruited participants with dementia to studies that had recruited participants with AD, bilinguals were 4.2 (95% CI: 2.0, 6.2) and 1.7 (95% CI: -1.4, 4.7) years older than monolinguals at dementia and AD diagnosis, respectively. Meta-analytic results combining prospective longitudinal studies showed no risk reduction in dementia among bilinguals compared to monolinguals (Odds Ratio: 0.85; 95% CI: 0.69-1.05). Risk of bias assessment revealed that most studies carried several methodological limitations including poor measurement of participants’ language profiles and small sample sizes.
The aim of Chapter four was to explore the underlying mechanisms in the brain that may be responsible for the observed findings in the first systematic review (Chapter three). In this study, we observed that bilinguals compared to monolinguals had greater brain volume in the frontostriatal and frontoparietal circuits. Also, functional neuroimaging studies showed that bilinguals made use of relevant brain areas more efficiently than monolinguals when completing interference cognitive tasks. Results from the cross-sectional studies showed that higher levels of language acculturation were associated with significantly greater verbal and psychomotor speed performance than lower levels of language acculturation.
The aim of the Chapter five was to explore the link between language acculturation and cognition in older individuals from ethnic minorities (Hispanic and Asian) living in the United States of America using an epidemiological dataset. In this cross-sectional epidemiological study, we analyzed data from the National Health and Nutrition Examination Survey using a larger sample size than previous studies. We found that higher levels of language acculturation (i.e. speaking the native language and that of the recipient’s country at home) was associated with greater psychomotor speed processing than lower levels of language acculturation (mostly speaking the native language at home) and some, but not all, measures of verbal fluency. Overall, the findings suggest that higher levels of language acculturation are associated with greater cognitive performance in older individuals from ethnic minorities.
Overall, the evidence gathered in the previous chapters indicate that i) increasing PA in individuals who are at a higher risk of developing AD might be more useful in improving cognitive performance than in individuals who already have developed AD and ii) bilingualism might render the brain areas typically affected by AD such as the frontostriatal and frontoparietal brain circuits more resilient against neurodegeneration and in turn, delay the onset of AD symptoms and diagnosis. Therefore, because no randomized-controlled trial (RCT) testing the combined effects of increased PA with studying a foreign language currently exist, Chapter five presents a detailed study protocol for an RCT addressing this gap in the literature while addressing the limitations of previous studies in the fields of PA- and bilingualism-based research.
The purpose of this thesis was to explore the roles of PA and bilingualism in dementia onset and risk and to inform the development of a randomized controlled trial (RCT) testing the effects of studying a foreign language with increased PA in individuals at a higher risk of dementia. Increasing PA levels are associated with greater cognition in individuals at the preclinical phase of AD rather than in participants with a diagnosis of dementia or AD. Bilingualism was also associated with later age of AD diagnosis on average by 4.7 years. This finding is clinically relevant because a five-year delay in the onset of AD could lower the number of individuals with AD worldwide by 57% and as a consequence, halving the associated economic costs. Moreover, we also showed that bilingualism may be responsible for rendering brain areas typically affected by AD more resilient against neuropathology. Moreover, this thesis revealed that studies in the field of exercise science and bilingualism research in dementia carry important methodological limitations that question the internal validity of these two lines of research. Consequently, the evidence gathered within this thesis led us to propose a novel RCT exploring the effects of increasing PA levels and studying a foreign language in monolingual individuals at a higher risk of AD while addressing the most important limitations of previous research.
The study of morbidity in general medicine is very useful in order to adapt training curricula to the reality of medical practice in the first degree. The objective of this work was to describe the morbidity charted in general medicine in Tunisia's Sousse region. It consisted of a prospective and descriptive study involving six basic health centres in Sousse and was conducted over the course of 30 randomly selected days during the year 2000. There were 4022 consultations included in the study which were described according to the SOAP plan. The coding of the charted diagnoses was carried out according to the International Classification of Primary Care (CISP). There were 98% of the consultants who were self-referred and 84% of the consultations corresponded to new cases. The consultants' sex-ratio was 0.5 in favour of females with an average age of 27 years. There were 4,597 diagnoses noted utilising 336 codes from the CISP classification system. The "Respiratory" chapter took the first place on the list (39.6%) followed by the "Circulatory" chapter. The "Top 30" list of the most often charted diagnoses totaled 72% of the consultations among which the three most frequent health problems were pharyngitis (14.4%), acute bronchitis (8.3%) and arterial hypertension (7.4%). This study demonstrates that the practice of general medicine is characterised by instinctive first solutions and versatility. The predominance of cardiovascular and respiratory illnesses illustrates the double burden of morbidity which is faced by Tunisian general medicine practitioners. The "Top 30" list should serve as basis for planning pregraduate and continuing medical training.
This study of the reasons for consultations in primary healthcare facilities was intended to describe the practice of general medicine and to help develop a socially relevant curriculum for training family physicians. This descriptive and longitudinal survey was conducted at 6 such centres in Sousse, in the Tunisian Sahel, over a randomly chosen 30-day period during the year 2000. During this investigation, 6,576 reasons were reported for the 4,022 consultations included in the survey and were coded according to the International Classification of Primary Care (ICPC). The sex ratio of the consultants was 1:2 male:female and the median age was 27 years. Overall, respiratory illnesses were the leading motive for consultation, accounting for 36% of the visits. The "Top 20" list covered 64.1% of the reasons reported. Coughing, sore throat, and fever occupied the top three positions, representing 13.5%, 11.6% and 7% of the reasons for consultation. Healthcare demand in these facilities thus reflected the extent of acute respiratory infections. This "Top 20" should be considered as a starting point for planning a valid medical curriculum.
Objectives Health literacy encompasses a broad skill set linked to patients' self‐management ability and the complexity of their health care environments. Self‐management in the context of multimorbidity is particularly challenging, placing patients at risk of poor clinical outcomes. This study aimed to explore the prognostic associations between health literacy domains, depression, and 12‐month health care utilization and mortality in patients with diabetes and end‐stage renal disease (DM‐ESRD). Design Observational study. Methods Patients with DM‐ESRD undergoing haemodialysis were recruited. Information on all‐cause hospitalization/admission and mortality of participants was recorded. Negative binomial and Cox regressions were used to model risk factors for hospitalization and mortality. Results A total 221 participants [median age: 59 years, 61.6% men, 54.8% Chinese] were recruited. Differences in health literacy were found as a function of age, ethnicity, relationship status, and education. After adjusting for demographic and clinical factors, the HLQ domain Actively Managing My Health remained independently associated with lower rates of hospitalization (incidence rate ratio (IRR) = 0.674, 95% CI [0.490, 0.925], p = .02) and mortality (hazard ratio = 0.382, 95% CI [0.160, 0.848], p = .02). Cumulative hospitalization days were associated with employment status (IRR = 2.242, 95% CI [1.223, 4.113], p = .009), albumin (IRR = 0.918, 95% CI [0.854, 0.988], p = .02), HbA1c (IRR = 1.183, 95% CI [1.028, 1.360], p = .02), comorbidity burden (IRR = 1.137, 95% CI [1.003, 1.289], p = .04), and depression (IRR = 1.059, 95% CI [1.003, 1.118], p = .04) but no health literacy domains. Conclusions Health literacy skills related to Actively Managing My Health predict hospitalization and mortality independently of other risk factors. The HLQ provides an assessement of novel health literacy parameters which offer new insights into patients’ status and behaviours and may strengthen interventions to improve clinical services, and patient outcomes in DM‐ESRD. Statement of contribution What is already known on this subject? Patients with diabetes (DM) comprise the fastest growing segment of patients with end‐stage renal disease (ESRD). Health literacy (HL) is pivotal for managing the complex treatment guidelines for DM‐ESRD. Most prior work on HL focused on functional HL and shown significant associations with mortality and hospitalization. Limited research has investigated wider HL skills in relation to clinical outcomes. What does this study add? Supporting patients in Actively Managing my health liteacy skills is critical in decreasing probability of hospitalization and morbidity. The presence of symptoms of depression is associated with longer hospitalization period.
'%3e%3cpath fill='%23012169' d='M0 0v30h60V0z'/%3e%3cpath stroke='%23fff' stroke-width='6' d='m0 0 60 30m0-30L0 30'/%3e%3cpath stroke='%23C8102E' stroke-width='4' d='m0 0 60 30m0-30L0 30' clip-path='url(%23b)'/%3e%3cpath stroke='%23fff' stroke-width='10' d='M30 0v30M0 15h60'/%3e%3cpath stroke='%23C8102E' stroke-width='6' d='M30 0v30M0 15h60'/%3e%3c/g%3e%3c/svg%3e)
'/%3e%3c/defs%3e%3cpath fill='%23012169' d='M0 0h10080v5040H0z'/%3e%3cpath stroke='%23fff' stroke-width='.6' d='m0 0 6 3m0-3L0 3' clip-path='url(%23b)' transform='scale(840)'/%3e%3cpath stroke='%23e4002b' stroke-width='.4' d='m0 0 6 3m0-3L0 3' clip-path='url(%23c)' transform='scale(840)'/%3e%3cpath stroke='%23fff' stroke-width='840' d='M2520 0v2520M0 1260h5040'/%3e%3cpath stroke='%23e4002b' stroke-width='504' d='M2520 0v2520M0 1260h5040'/%3e%3cg fill='%23fff'%3e%3cuse xlink:href='%23d' x='2520' y='3780'/%3e%3cuse xlink:href='%23a' x='7560' y='4200'/%3e%3cuse xlink:href='%23a' x='6300' y='2205'/%3e%3cuse xlink:href='%23a' x='7560' y='840'/%3e%3cuse xlink:href='%23a' x='8680' y='1869'/%3e%3cuse xlink:href='%23e' x='8064' y='2730'/%3e%3c/g%3e%3c/svg%3e)
'/%3e%3cpath d='M200 752.362h200v300H200z' style='fill:%23fff;fill-opacity:1;stroke:none' transform='translate(0 -752.362)'/%3e%3cpath d='M400 752.362h200v300H400z' style='fill:%23ff883e;fill-opacity:1;stroke:none' transform='translate(0 -752.362)'/%3e%3c/svg%3e)