Diagnostic test accuracy of telehealth assessment for dementia and mild cognitive impairment.

BACKGROUND: Many millions of people living with dementia around the world are not diagnosed, which has a negative impact both on their access to care and treatment and on rational service planning. Telehealth - the use of information and communication technology (ICT) to provide health services at a distance - may be a way to increase access to specialist assessment for people with suspected dementia, especially those living in remote or rural areas. It has also been much used during the COVID-19 pandemic. It is important to know whether diagnoses made using telehealth assessment are as accurate as those made in conventional, face-to-face clinical settings. OBJECTIVES: Primary objective: to assess the diagnostic accuracy of telehealth assessment for dementia and mild cognitive impairment. Secondary objectives: to identify the quality and quantity of the relevant research evidence; to identify sources of heterogeneity in the test accuracy data; to identify and synthesise any data on patient or clinician satisfaction, resource use, costs or feasibility of the telehealth assessment models in the included studies. SEARCH METHODS: We searched multiple databases and clinical trial registers on 4 November 2020 for published and 'grey' literature and registered trials. We applied no search filters and no language restrictions. We screened the retrieved citations in duplicate and assessed in duplicate the full texts of papers considered potentially relevant. SELECTION CRITERIA: We included in the review cross-sectional studies with 10 or more participants who had been referred to a specialist service for assessment of a suspected cognitive disorder. Within a period of one month or less, each participant had to undergo two clinical assessments designed to diagnose dementia or mild cognitive impairment (MCI): a telehealth assessment (the index test) and a conventional face-to-face assessment (the reference standard). The telehealth assessment could be informed by some data collected face-to-face, e.g. by nurses working in primary care, but all contact between the patient and the specialist clinician responsible for synthesising the information and making the diagnosis had to take place remotely using ICT. DATA COLLECTION AND ANALYSIS: Two review authors independently extracted data from included studies. Data extracted covered study design, setting, participants, details of index test and reference standard, and results in the form of numbers of participants given diagnoses of dementia or MCI. Data were also sought on dementia subtype diagnoses and on quantitative measures of patient or clinician satisfaction, resource use, costs and feasibility. We assessed risk of bias and applicability of each included study using QUADAS-2. We entered the results into 2x2 tables in order to calculate the sensitivity and specificity of telehealth assessment for the diagnosis of all-cause dementia, MCI, and any cognitive syndrome (combining dementia and MCI). We presented the results of included studies narratively because there were too few studies to derive summary estimates of sensitivity and specificity. MAIN RESULTS: Three studies with 136 participants were eligible for inclusion. Two studies (20 and 100 participants) took place in community settings in Australia and one study (16 participants) was conducted in veterans' homes in the USA. Participants were referred from primary care with undiagnosed cognitive symptoms or were identified as being at high risk of having dementia on a screening test in the care homes. Dementia and MCI were target conditions in the larger study; the other studies targeted dementia diagnosis only. Only one small study used a 'pure' telehealth model, i.e. not involving any elements of face-to-face assessment. The studies were generally well-conducted. We considered two studies to be at high risk of incorporation bias because a substantial amount of information collected face-to-face by nurses was used to inform both index test and reference standard assessments. One study was at unclear risk of selection bias. For the diagnosis of all-cause dementia, sensitivity of telehealth assessment ranged from 0.80 to 1.00 and specificity from 0.80 to 1.00. We considered this to be very low-certainty evidence due to imprecision, inconsistency between studies and risk of bias. For the diagnosis of MCI, data were available from only one study (100 participants) giving a sensitivity of 0.71 (95% CI 0.54 to 0.84) and a specificity of 0.73 (95% CI 0.60 to 0.84). We considered this to be low-certainty evidence due to imprecision and risk of bias. For diagnosis of any cognitive syndrome (dementia or MCI), data from the same study gave a sensitivity of 0.97 (95% CI 0.91 to 0.99) and a specificity of 0.22 (95% CI 0.03 to 0.60). The majority of diagnostic disagreements concerned the distinction between MCI and dementia, occurring approximately equally in either direction. There was also a tendency for patients identified as cognitively healthy at face-to-face assessment to be diagnosed with MCI at telehealth assessment (but numbers were small). There were insufficient data to make any assessment of the accuracy of dementia subtype diagnosis. One study provided a small amount of data indicating a good level of clinician and especially patient satisfaction with the telehealth model. There were no data on resource use, costs or feasibility. AUTHORS' CONCLUSIONS: We found only very few eligible studies with a small number of participants. An important difference between the studies providing data for the analyses was whether the target condition was dementia only (two studies) or dementia and MCI (one study). The data suggest that telehealth assessment may be highly sensitive and specific for the diagnosis of all-cause dementia when assessed against a reference standard of conventional face-to-face assessment, but the estimates are imprecise due to small sample sizes and between-study heterogeneity, and may apply mainly to telehealth models which incorporate a considerable amount of face-to-face contact with healthcare professionals other than the doctor responsible for making the diagnosis. For the diagnosis of MCI by telehealth assessment, best estimates of both sensitivity and specificity were somewhat lower, but were based on a single study. Errors occurred at the cognitively healthy/MCI and the MCI/dementia boundaries. However, there is no evidence that diagnostic disagreements were more frequent than would be expected due to the known variation between clinicians' opinions when assigning a dementia diagnosis.

Remotely delivered information, training and support for informal caregivers of people with dementia.

BACKGROUND: Many people with dementia are cared for at home by unpaid informal caregivers, usually family members. Caregivers may experience a range of physical, emotional, financial and social harms, which are often described collectively as caregiver burden. The degree of burden experienced is associated with characteristics of the caregiver, such as gender, and characteristics of the person with dementia, such as dementia stage, and the presence of behavioural problems or neuropsychiatric disturbances. It is a strong predictor of admission to residential care for people with dementia. Psychoeducational interventions might prevent or reduce caregiver burden. Overall, they are intended to improve caregivers' knowledge about the disease and its care; to increase caregivers' sense of competence and their ability to cope with difficult situations; to relieve feelings of isolation and allow caregivers to attend to their own emotional and physical needs. These interventions are heterogeneous, varying in their theoretical framework, components, and delivery formats. Interventions that are delivered remotely, using printed materials, telephone or video technologies, may be particularly suitable for caregivers who have difficulty accessing face-to-face services because of their own health problems, poor access to transport, or absence of substitute care. During the COVID-19 pandemic, containment measures in many countries required people to be isolated in their homes, including people with dementia and their family carers. In such circumstances, there is no alternative to remote delivery of interventions. OBJECTIVES: To assess the efficacy and acceptability of remotely delivered interventions aiming to reduce burden and improve mood and quality of life of informal caregivers of people with dementia. SEARCH METHODS: We searched the Specialised Register of the Cochrane Dementia and Cognitive Improvement Group, MEDLINE, Embase and four other databases, as well as two international trials registries, on 10 April 2020. We also examined the bibliographies of relevant review papers and published trials. SELECTION CRITERIA: We included only randomised controlled trials that assessed the remote delivery of structured interventions for informal caregivers who were providing care for people with dementia living at home. Caregivers had to be unpaid adults (relatives or members of the person's community). The interventions could be delivered using printed materials, the telephone, the Internet or a mixture of these, but could not involve any face-to-face contact with professionals. We categorised intervention components as information, training or support. Information interventions included two key elements: (i) they provided standardised information, and (ii) the caregiver played a passive role. Support interventions promoted interaction with other people (professionals or peers). Training interventions trained caregivers in practical skills to manage care. We excluded interventions that were primarily individual psychotherapy. Our primary outcomes were caregiver burden, mood, health-related quality of life and dropout for any reason. Secondary outcomes were caregiver knowledge and skills, use of health and social care resources, admission of the person with dementia to institutional care, and quality of life of the person with dementia. DATA COLLECTION AND ANALYSIS: Study selection, data extraction and assessment of the risk of bias in included studies were done independently by two review authors. We used the Template for Intervention Description and Replication (TIDieR) to describe the interventions. We conducted meta-analyses using a random-effects model to derive estimates of effect size. We used GRADE methods to describe our degree of certainty about effect estimates. MAIN RESULTS: We included 26 studies in this review (2367 participants). We compared (1) interventions involving training, support or both, with or without information (experimental interventions) with usual treatment, waiting list or attention control (12 studies, 944 participants); and (2) the same experimental interventions with provision of information alone (14 studies, 1423 participants). We downgraded evidence for study limitations and, for some outcomes, for inconsistency between studies. There was a frequent risk of bias from self-rating of subjective outcomes by participants who were not blind to the intervention. Randomisation methods were not always well-reported and there was potential for attrition bias in some studies. Therefore, all evidence was of moderate or low certainty. In the comparison of experimental interventions with usual treatment, waiting list or attention control, we found that the experimental interventions probably have little or no effect on caregiver burden (nine studies, 597 participants; standardised mean difference (SMD) -0.06, 95% confidence interval (CI) -0.35 to 0.23); depressive symptoms (eight studies, 638 participants; SMD -0.05, 95% CI -0.22 to 0.12); or health-related quality of life (two studies, 311 participants; SMD 0.10, 95% CI -0.13 to 0.32). The experimental interventions probably result in little or no difference in dropout for any reason (eight studies, 661 participants; risk ratio (RR) 1.15, 95% CI 0.87 to 1.53). In the comparison of experimental interventions with a control condition of information alone, we found that experimental interventions may result in a slight reduction in caregiver burden (nine studies, 650 participants; SMD -0.24, 95% CI -0.51 to 0.04); probably result in a slight improvement in depressive symptoms (11 studies, 1100 participants; SMD -0.25, 95% CI -0.43 to -0.06); may result in little or no difference in caregiver health-related quality of life (two studies, 257 participants; SMD -0.03, 95% CI -0.28 to 0.21); and probably result in an increase in dropouts for any reason (12 studies, 1266 participants; RR 1.51, 95% CI 1.04 to 2.20). AUTHORS' CONCLUSIONS: Remotely delivered interventions including support, training or both, with or without information, may slightly reduce caregiver burden and improve caregiver depressive symptoms when compared with provision of information alone, but not when compared with usual treatment, waiting list or attention control. They seem to make little or no difference to health-related quality of life. Caregivers receiving training or support were more likely than those receiving information alone to drop out of the studies, which might limit applicability. The efficacy of these interventions may depend on the nature and availability of usual services in the study settings.

ANTECEDENTES: Muchas personas con demencia son atendidas en casa por cuidadores informales no remunerados, generalmente miembros de la familia. Los cuidadores pueden sufrir una serie de efectos perjudiciales físicos, emocionales, económicos y sociales, que a menudo se describen colectivamente como una carga para el cuidador. El grado de carga que se experimenta está asociado con las características del cuidador, como el género, y con las características de la persona con demencia, como la etapa de la demencia, y la presencia de problemas de comportamiento o trastornos neuropsiquiátricos. Es un fuerte predictor del ingreso en una residencia para personas con demencia. Las intervenciones psicoeducativas pueden prevenir o reducir la carga del cuidador. En general, tienen como objetivo mejorar los conocimientos de los cuidadores sobre la enfermedad y su cuidado; aumentar el sentido de competencia de los cuidadores y su capacidad para afrontar situaciones difíciles; aliviar los sentimientos de aislamiento y permitir que los cuidadores atiendan sus propias necesidades emocionales y físicas. Estas intervenciones son heterogéneas y varían en su marco teórico, sus componentes y sus formatos de administración. Las intervenciones que se realizan a distancia, utilizando material impreso, el teléfono o las tecnologías de vídeo, pueden ser particularmente adecuadas para los cuidadores que tienen dificultades para acceder a los servicios de forma presencial debido a sus propios problemas de salud, al escaso acceso al transporte o a la falta de un cuidado alternativo. Durante la pandemia de covid­19, las medidas de contención en muchos países exigían que las personas estuvieran aisladas en sus hogares, incluidas las personas con demencia y sus familiares cuidadores. En tales circunstancias, no hay alternativa a la realización de intervenciones a distancia. OBJETIVOS: Evaluar la eficacia y la aceptabilidad de las intervenciones realizadas a distancia con el fin de reducir la carga y mejorar el estado de ánimo y la calidad de vida de los cuidadores informales de personas con demencia. MÉTODOS DE BÚSQUEDA: El 10 de abril de 2020 se realizaron búsquedas en el Registro especializado del Grupo Cochrane de Demencia y trastornos cognitivos (Cochrane Dementia and Cognitive Improvement Group), MEDLINE, Embase y otras cuatro bases de datos, así como en dos registros internacionales de ensayos. También se examinaron las bibliografías de documentos de revisión pertinentes y de ensayos publicados. CRITERIOS DE SELECCIÓN: Sólo se incluyeron los ensayos controlados aleatorizados que evaluaron la administración a distancia de intervenciones estructuradas para los cuidadores informales que atendían a personas con demencia que vivían en el domicilio. Los cuidadores debían ser adultos no remunerados (parientes o miembros de la comunidad de la persona). Las intervenciones se podían realizar utilizando materiales impresos, el teléfono, la internet o una mezcla de estos, pero no podían implicar un contacto presencial con profesionales. Los componentes de la intervención se clasificaron como información, formación o apoyo. Las intervenciones de información incluyeron dos elementos clave: i) proporcionaron información estandarizada, y ii) el cuidador desempeñaba un papel pasivo. Las intervenciones de apoyo promovieron la interacción con otras personas (profesionales o iguales). Las intervenciones de formación entrenaron a los cuidadores en habilidades prácticas para proporcionar la atención. Se excluyeron las intervenciones que consistieron principalmente en psicoterapia individual. Los desenlaces principales fueron la carga del cuidador, el estado de ánimo, la calidad de vida relacionada con la salud y el abandono por cualquier motivo. Los desenlaces secundarios fueron los conocimientos y aptitudes de los cuidadores, la utilización de los recursos de atención sanitaria y social, el ingreso de la persona con demencia en una institución y la calidad de vida de la persona con demencia. OBTENCIÓN Y ANÁLISIS DE LOS DATOS: Dos autores de la revisión realizaron de forma independiente la selección de los estudios, la extracción de los datos y la evaluación del riesgo de sesgo de los estudios incluidos. Se utilizó la Template for Intervention Description and Replication (TIDieR) para describir las intervenciones. Los metanálisis se realizaron mediante un modelo de efectos aleatorios para obtener las estimaciones del tamaño del efecto. Se utilizaron los métodos GRADE para describir el grado de certeza sobre las estimaciones del efecto. RESULTADOS PRINCIPALES: En esta revisión se incluyeron 26 estudios (2367 participantes). Se compararon (1) las intervenciones que incluyeron formación, apoyo o ambos, con o sin información (intervenciones experimentales) con el tratamiento habitual, una lista de espera o el control de la atención (12 estudios, 944 participantes); y (2) las mismas intervenciones experimentales con el suministro de información solamente (14 estudios, 1423 participantes). La calidad de la evidencia se redujo por las limitaciones de los estudios y, en el caso de algunos desenlaces, por la falta de consistencia entre los estudios. Hubo un riesgo frecuente de sesgo debido a la autocalificación de los desenlaces subjetivos por parte de participantes que no estaban cegados a la intervención. Los métodos de asignación al azar no siempre se informaron bien y hubo un posible sesgo de desgaste en algunos estudios. Por lo tanto, toda la evidencia fue de certeza moderada o baja. En la comparación de las intervenciones experimentales con el tratamiento habitual, una lista de espera o el control de la atención, se encontró que las intervenciones experimentales probablemente tienen poco o ningún efecto sobre la carga del cuidador (nueve estudios, 597 participantes; diferencia de medias estandarizada [DME] ­0,06; intervalo de confianza [IC] del 95%: ­0,35 a 0,23); los síntomas depresivos (ocho estudios, 638 participantes; DME ­0,05; IC del 95%: ­0,22 a 0,12) o la calidad de vida relacionada con la salud (dos estudios, 311 participantes; DME 0,10; IC del 95%: ­0,13 a 0,32). Las intervenciones experimentales probablemente dan lugar a poca o ninguna diferencia en el abandono por cualquier motivo (ocho estudios, 661 participantes; razón de riesgos [RR] 1,15; IC del 95%: 0,87 a 1,53). En la comparación de las intervenciones experimentales con una condición control de información sola, se encontró que las intervenciones experimentales pueden dar lugar a una leve reducción de la carga del cuidador (nueve estudios, 650 participantes; DME ­0,24; IC del 95%: ­0,51 a 0,04); probablemente dan lugar a una leve mejoría de los síntomas depresivos (11 estudios, 1100 participantes; DME ­0,25; IC del 95%: ­0,43 a ­0,06); podrían dar lugar a poca o ninguna diferencia en la calidad de vida relacionada con la salud de los cuidadores (dos estudios, 257 participantes; DME ­0,03; IC del 95%: ­0,28 a 0,21); y probablemente dé lugar a un aumento de los abandonos por cualquier motivo (12 estudios, 1266 participantes; RR 1,51; IC del 95%: 1,04 a 2,20). CONCLUSIONES DE LOS AUTORES: Las intervenciones realizadas a distancia, como el apoyo, la formación o ambas, con o sin información, podrían reducir ligeramente la carga del cuidador y mejorar los síntomas depresivos del cuidador en comparación con el suministro de información únicamente, pero no en comparación con el tratamiento habitual, una lista de espera o el control de la atención. Parecen dar lugar a poca o ninguna diferencia en la calidad de vida relacionada con la salud. Los cuidadores que recibieron formación o apoyo tuvieron más probabilidades de abandonar los estudios que los que recibieron sólo información, lo que podría limitar la aplicabilidad. La eficacia de esas intervenciones puede depender de la naturaleza y la disponibilidad de los servicios habituales en los ámbitos de estudio.