Factors associated with attendance at screening for breast cancer: a systematic review and meta-analysis.

OBJECTIVE: Attendance at population-based breast cancer (mammographic) screening varies. This comprehensive systematic review and meta-analysis assesses all identified patient-level factors associated with routine population breast screening attendance. DESIGN: CINAHL, Cochrane Library, Embase, Medline, OVID, PsycINFO and Web of Science were searched for studies of any design, published January 1987-June 2019, and reporting attendance in relation to at least one patient-level factor. DATA SYNTHESIS: Independent reviewers performed screening, data extraction and quality appraisal. OR and 95% CIs were calculated for attendance for each factor and random-effects meta-analysis was undertaken where possible. RESULTS: Of 19 776 studies, 335 were assessed at full text and 66 studies (n=22 150 922) were included. Risk of bias was generally low. In meta-analysis, increased attendance was associated with higher socioeconomic status (SES) (n=11 studies; OR 1.45, 95% CI: 1.20 to 1.75); higher income (n=5 studies; OR 1.96, 95% CI: 1.68 to 2.29); home ownership (n=3 studies; OR 2.16, 95% CI: 2.08 to 2.23); being non-immigrant (n=7 studies; OR 2.23, 95% CI: 2.00 to 2.48); being married/cohabiting (n=7 studies; OR 1.86, 95% CI: 1.58 to 2.19) and medium (vs low) level of education (n=6 studies; OR 1.24, 95% CI: 1.09 to 1.41). Women with previous false-positive results were less likely to reattend (n=6 studies; OR 0.77, 95% CI: 0.68 to 0.88). There were no differences by age group or by rural versus urban residence. CONCLUSIONS: Attendance was lower in women with lower SES, those who were immigrants, non-homeowners and those with previous false-positive results. Variations in service delivery, screening programmes and study populations may influence findings. Our findings are of univariable associations. Underlying causes of lower uptake such as practical, physical, psychological or financial barriers should be investigated. TRIAL REGISTRATION NUMBER: CRD42016051597.

Prospective study of autism phenomenology and the behavioural phenotype of Phelan-McDermid syndrome: comparison to fragile X syndrome, Down syndrome and idiopathic autism spectrum disorder.

BACKGROUND: The limited behavioural phenotype literature on Phelan-McDermid syndrome (PMS) indicates atypically high levels of activity, impulsivity and autism spectrum disorder (ASD) behaviours. Divergent profiles of ASD in PMS are also reported, with some studies demonstrating similarities to idiopathic ASD and others indicating an uneven profile of social and communication impairments and repetitive behaviours. An evaluation of the behavioural phenotype of PMS and the prevalence and phenomenology of ASD is warranted, particularly given the causal involvement of the SHANK3 gene in the aetiology of PMS. METHODS: Carers of individuals with PMS (N = 30; mean age = 10.55, SD = 7.08) completed questionnaires relating to impulsivity, overactivity, mood, interest and pleasure, repetitive behaviour and ASD phenomenology. These data were compared to data from matched samples of individuals with fragile X and Down syndromes and idiopathic ASD. In order to evaluate the profile of ASD phenomenology in PMS, two comparisons were made: first, including the total sample with PMS, and second, including only those who met the threshold indicative of autism on an ASD screening measure. RESULTS: The results revealed lower mood in individuals with PMS, but no differences in impulsivity and overactivity. Compulsive and routine-driven repetitive behaviours were less common in the total sample with PMS; however, motor-based stereotyped behaviours were more common. ASD phenomenology was highly prevalent, with 87% of the sample meeting the cutoff score for ASD and 57% meeting the cutoff for autism. The profile of ASD phenomenology in the total sample with PMS differed from those with idiopathic ASD across impairments in communication and social interaction and repetitive behaviour. However, the profile of those who met the threshold for autism was commensurate to those with idiopathic ASD. CONCLUSIONS: ASD phenomenology is common within PMS. Whilst the total sample may display an atypical profile of ASD behaviour, the profile in those who met the threshold for autism was very similar to those with idiopathic ASD. These results are discussed in relation to the wider behavioural phenotype and the emerging evidence of an autism endophenotype in PMS.

Service utilisation and family support of people with dementia: a cohort study in England.

OBJECTIVES: This study aimed to compare costs of caring for people with dementia in domiciliary and residential settings, central England. METHODS: A cohort of people with dementia was recruited during a hospital stay 2008-2010. Data were collected by interview at baseline, and 6- and 12-month follow-up, covering living situation (own home with or without co-resident carer, care home); cognition, health status and functioning of person with dementia; carer stress; utilisation of health and social services; and informal (unpaid) caring input. Costs of formal services and informal caring (replacement cost method) were calculated. Costs of residential and domiciliary care packages were compared. RESULTS: Data for 109 people with dementia were collected at baseline; 95 (87.2%) entered hospital from their own homes. By 12 months, 40 (36.7%) had died and 85% of the survivors were living in care homes. Over one-half of people with dementia reported social care packages at baseline; those living alone had larger packages than those living with others. Median caring time for co-resident carers was 400 min/day and 10 h/week for non co-resident carers. Residential care was more costly than domiciliary social care for most people. When the value of informal caring was included, the total cost of domiciliary care was higher than residential care, but not significantly so. Carer stress reduced significantly after the person with dementia entered a care home. CONCLUSIONS: Caring for people with dementia at home may be more expensive, and more stressful for carers, than care in residential settings.

Patient and proxy measurement of quality of life among general hospital in-patients with dementia.

BACKGROUND: We aimed to investigate quality of life ratings among people with varying severity of dementia and their carers, recruited in general hospital. METHOD: We recruited 109 people with dementia, and their proxies (carers), from psychiatric referrals of inpatients in two general hospitals in England. From patients, we gathered data on quality of life (QoL-AD and EQ5-D) and depressive symptoms, and from proxies we gathered data on patient quality of life (Proxy QoL-AD and EQ5-D), severity of dementia, activities of daily living, physical illness and depressive symptoms, and on carer stress. RESULTS: Completion rates for both measures were progressively lower with increasing dementia severity. Patients rated their quality of life more highly than proxies on Qol-AD (patients=32.2, CI=30.7-33.7, proxies=24.7, CI=23.8-26.0, p<0.001) and on EQ5D (patients=0.71, CI=0.64-0.77, proxies=0.30, CI=0.22-0.38, p<0.001). For proxy EQ5D, impaired instrumental ADLs (p=0.003) and more severe dementia (p=0.019) were associated with ratings, while for proxy QoL-AD, only more severe dementia (p=0.039) was associated with ratings. Lower patient EQ-5D scores were independently associated only with carer stress (p=0.01). Lower patient QoL-AD scores were associated with patient depression (p=0.001), impaired activities of daily living (p=0.02) and proxy psychiatric symptoms (p=0.002). CONCLUSIONS: Among patients with moderate to severe dementia in general hospital, proxy measures of quality of life are the only practical option. Patients and proxies appear to have very different concepts of quality of life in dementia.