A new psychosocial goal-setting and manualised support intervention for independence in dementia (NIDUS-Family): longer-term outcomes of a randomised controlled trial

BackgroundMost people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia’s life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family). To our knowledge, NIDUS-family is the first manualised intervention that can be tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads’ selected goals. We will evaluate the effect of NIDUS-family and usual care on goal attainment, as measured by Goal Attainment Scaling (GAS) rated by family carers, compared to usual care alone at 12-month follow-up. We will also determine whether NIDUS-family and usual care is more cost-effective than usual care alone over 12 months.MethodsA randomised, two-arm, single-masked, multi-site clinical trial involving 297 people living with dementia-family carer dyads. Dyads will be randomised 2:1 to receive the NIDUS-family intervention with usual care (n = 199) or usual care alone (n = 98). The intervention group will be offered, over 1 year, via 6–8 video call or telephone sessions (or face to face if COVID-19 restrictions allow in the recruitment period) in the initial 6 months, followed by telephone follow-ups every 1–2 months to support implementation, with a trained facilitator.DiscussionIncreasing the time lived at home by people living with dementia is likely to benefit lives now and in the future. Our intervention, which we adapted to include remote delivery prior to trial commencement due to the COVID-19 pandemic, aims to address barriers to living as well and as independently as possible that distress people living with dementia, exacerbate family carer(s) stress, negatively affect relationships, lead to safety risks, and frequently precipitate avoidable moves to a care home.Trial registrationInternational Standard Randomised Controlled Trials Number ISRCTN11425138. Registered on 7 October 2019

SummaryBackgroundAlthough national guidelines recommend that everyone with dementia receives personalised post-diagnostic support, few do. Unlike previous interventions that improved personalised outcomes in people with dementia, the NIDUS-Family intervention is fully manualised and deliverable by trained and supervised, non-clinical facilitators. We aimed to investigate the effectiveness of home-based goal setting plus NIDUS-Family in supporting the attainment of personalised goals set by people with dementia and their carers.MethodsWe did a two-arm, single-masked, multi-site, randomised, clinical trial recruiting patient–carer dyads from community settings. We randomly assigned dyads to either home-based goal setting plus NIDUS-Family or goal setting and routine care (control). Randomisation was blocked and stratified by site (2:1; intervention to control), with allocations assigned via a remote web-based system. NIDUS-Family is tailored to goals set by dyads by selecting modules involving behavioural interventions, carer support, psychoeducation, communication and coping skills, enablement, and environmental adaptations. The intervention involved six to eight video-call or telephone sessions (or in person when COVID-19-related restrictions allowed) over 6 months, then telephone follow-ups every 2–3 months for 6 months. The primary outcome was carer-rated goal attainment scaling (GAS) score at 12 months. Analyses were done by intention to treat. This trial is registered with the ISRCTN registry, ISRCTN11425138.FindingsBetween April 30, 2020, and May 9, 2021, we assessed 1083 potential dyads for eligibility, 781 (72·1%) of whom were excluded. Of 302 eligible dyads, we randomly assigned 98 (32·4%) to the control group and 204 (67·5%) to the intervention group. The mean age of participants with dementia was 79·9 years (SD 8·2), 169 (56%) were women, and 133 (44%) were men. 247 (82%) dyads completed the primary outcome, which favoured the intervention (mean GAS score at 12 months 58·7 [SD 13·0; n=163] vs 49·0 [14·1; n=84]; adjusted difference in means 10·23 [95% CI 5·75–14·71]; p<0·001). 31 (15·2%) participants in the intervention group and 14 (14·3%) in the control group experienced serious adverse events.InterpretationTo our knowledge, NIDUS-Family is the first readily scalable intervention for people with dementia and their family carers that improves attainment of personalised goals. We therefore recommend that it be implemented in health and care services.FundingUK Alzheimer's Society.

Dementia care guidelines recommend personalised post-diagnostic support, but few receive it. NIDUS (New Interventions for Independence in Dementia)-Family intervention is fully manualised and designed to be delivered by trained, supervised, non-clinical facilitators using accessible digital online modules and resources. We investigated the clinical and cost-effectiveness of home-based goal setting plus NIDUS-Family in supporting people with dementia and their carers achieve personalised goals. This two-arm, single-masked, multi-site, randomised trial recruited patient-carer dyads from community settings. Based on their personalised goals, dyads selected modules involving behavioural interventions, carer support, psychoeducation, coping skills, enablement, and environmental adaptations. The intervention involved 6-8 video-call, telephone, or in-person sessions over 6 months. The primary outcome was goal attainment scaling (GAS) score at 12 months. Cost-effectiveness was evaluated using Quality Adjusted Life Year (QALY) from health and personal social services and societal perspectives, at £20,000-£30,000 decision thresholds for QALY gained, compared to usual care over 12 months. Analyses were intention-to-treat. ISRCTN11425138 RESULT: Of 302 eligible dyads, 204(67·5%) were randomised to intervention and 98 (32·4%) to control. 247(82%) dyads completed the primary outcome, which favoured the intervention (mean GAS score at 12 months 58·7 [SD 13·0; n=163] vs 49·0 [14·1; n=84]; adjusted difference in means 10·23 [95% CI 5·75-14·71]; p<0·001). 178 (58.9%) dyads provided cost data at 12 months. From health and personal social services perspectives, there was 91% probability that NIDUS-Family was cost-effective compared to usual care. There was 89% and 87% probability that NIDUS-Family was cost-effective compared to usual care from personal social services and societal perspectives respectively. Intervention participants accrued on average £8934 (37%) less costs than control participants (95% CI -£59,460 to £41,592). NIDUS-Family is a clinically and cost-effective personalised care intervention that delivers tailored facilitated support alongside online digital resources for people with dementia and family carers. Utilising scalable individualised goals as both an outcome measure and to shape the support means that this intervention holds significant potential for widely scalable implementation across diverse settings. Given its benefits, NIDUS-Family should be part of routine dementia care and an implementation study is in progress.

BackgroundMost people living with dementia want to remain living in their own homes and are supported to do so by family carers. We have co‐produced, with family carers of people with dementia and health and social care professionals, a psychosocial intervention (NIDUS‐family). NIDUS‐family is the first fully manualised intervention that is tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads’ selected goals.MethodA randomised, two‐arm, single‐blind, multi‐site clinical trial involving 302 people living with dementia‐family carer dyads. Dyads were randomised 2:1 to receive the NIDUS‐family intervention with usual care (n = 204) or usual care alone (n = 98). The intervention group received over 1 year, 6‐8 video call or telephone sessions (or face to face if COVID‐19 restrictions allowed) in the initial 6 months, followed by telephone follow‐ups every 1‐2 months to support implementation, with a trained facilitator. We will evaluate the effect of NIDUS‐family and usual care on attainment on goals set by family carers towards the care recipient living as well as possible at home, as measured by Goal Attainment Scaling (GAS), compared to usual care alone at 12‐month follow‐up. Secondary outcomes measures include functioning, neuropsychiatric symptoms of care recipients, time remaining living at home and care costs, and family carer mood, quality of life and reported abusive behaviours.ResultThe trial recruited to target, with good adherence to the intervention (85% fully adherent) and trial retention to date (87% at 6‐month follow‐up). The trial’s 12 month follow up data will be completed in early May 2023 and results will be analysed and ready to share by July 2023.ConclusionOur intervention, which we adapted to include remote delivery prior to commencement due to the COVID‐19 pandemic, aims to address barriers to living as well and as independently as possible. If effective, NIDUS‐family is potentially scalable to benefit many people living with dementia and their family carers.

NIDUS-Family is a psychosocial and behavioural intervention comprising six to eight sessions, delivered by non-clinical facilitators, and tailored to goals set by dyads of people with dementia and their unpaid or family carers. The intervention has been shown to be effective for attainment of personalised client goals. The current study aimed to determine whether the intervention is cost-effective. In this cost-utility and cost-effectiveness analysis within a two-armed, single-masked, multisite, superiority randomised controlled trial, we recruited 302people with dementia living in their own homes and their family carers from National Health Service community settings and social and print media across England. Participants were randomly allocated (2:1) to the NIDUS-Family intervention group or control (goal setting and routine care) group. Randomisation was blocked and site-stratified, with allocation by a remote web-based system. We calculated the probability that NIDUS-Family is cost-effective for a client with dementia based on quality-adjusted life-years from a health and social care perspective and from a societal perspective (additionally including family carer time and out-of-pocket costs), at £20 000-30 000decision thresholds for additional quality-adjusted life-years compared with usual care over 12months. Analyses were done using the intention-to-treat population. This study is registered with ISRCTN, ISRCTN11425138, and is completed. Between April 30, 2020, and May 9, 2022, we randomly allocated 204participants (109 [53%] women and 95[47%] men) to the intervention group and 98 (60 [61%] women and 38 [39%] men) to the control group. 218 (72%) participants at 6months and 178 (59%) at 12months provided cost data. At both a £20 000and £30 000decision threshold, there was an 89% probability that NIDUS-Family was cost-effective compared with usual care from a health and social care perspective, and an 87% probability from a societal perspective. Intervention participants accrued on average £8934 (37%) less in costs than control participants (95% CI -£59 460to £41 592). NIDUS-Family is the first personalised care and support intervention to show both cost-effectiveness from the perspective of the quality of life of people with dementia as well as clinical effectiveness and should therefore be part of routine dementia care. Alzheimer's Society.

Person-centered goals capture individual priorities in personal contexts. Goal Attainment Scaling (GAS) has been used in drug trials involving people living with dementia (PLWD) but GAS has been characterized as difficult to incorporate into trials and clinical practice. We used GAS in a trial of New Interventions for Independence in Dementia Study (NIDUS)-family, a manualized care and support intervention, as the primary outcome and to tailor the interventions to goals set. We aimed to assess the feasibility and content of baseline goal-setting. We developed training for nonclinical facilitators to set individualized GAS goals remotely with PLWD and family carer dyads, or carers alone, in the intervention trial, during the COVID-19 pandemic. A qualitative content analysis of the goals set explored participants' priorities and unmet needs, to consider how existing GAS goal domains might be extended in a psychosocial intervention trial context. Eleven facilitators were successfully trained to set and score GAS goals. A total of 313/328 (95%) participants were able to collaboratively set three to five goals with the facilitators. Of these, 302 randomized participating dyads set 1043 (mean 3.5, range 3 to 5) goals. We deductively coded 719 (69%) goals into five existing GAS domains (mood, behavior, self-care, cognition, and instrumental activities of daily living); 324 (31%) goals were inductively coded into four new domains: carer break, carer mood, carer behavior, and carer sleep. The most frequently set goals pertained to social support. There was little variation in types of goals set based on the context of who set them or level of pandemic restrictions in place. It is feasible for people without clinical training to set GAS holistic goals for PLWD and family carers in the community. GAS has potential to facilitate personalization of care and support interventions, such as NIDUS-family, and facilitate the roll out of more personalized care. Goal Attainment Scaling (GAS) can capture meaningful priorities of people with dementia and their family carers.A psychosocial intervention RCT used GAS as the primary outcome measure and goals were set collaboratively by non-clinically trained facilitators.The findings underscore the feasibility of using GAS as an outcome measure with this population.The content analysis findings unveiled the diversity in experiences and priorities of the study participants.GAS has the potential to support the implementation of more person-centred approaches to dementia care.

Two-thirds of people with dementia live at home, receiving most care from family carers, about 40% of whom have clinically significant depression or anxiety. This impacts on the person with dementia, families and society, predicting care breakdown. There are currently no clinically effective and cost-effective NHS family carer interventions. To assess the STrAtegies for RelaTives (START) intervention in the short (4 and 8 months) and long term (1 and 2 years) compared with treatment as usual (TAU). Randomised, parallel-group, superiority trial with blinded assessment recruiting participants 2:1 (intervention to TAU) to allow for therapist clustering. Three UK mental health services and one neurological service. Family carers of people with dementia. Eight-session manual-based coping intervention delivered by supervised psychology graduates to individuals. Affective symptoms [Hospital Anxiety and Depression Scale-total (HADS-T)] and cost-effectiveness. Secondary measures: anxiety and depression symptoms and caseness, quality of life (QoL), abusive behaviour and long-term care home admission. Two hundred and sixty participants were randomised (173 intervention, 87 TAU). We used intention-to-treat analysis in the short term (152 intervention, 77 TAU) and in the long term (140 intervention, 69 TAU). In the short term, the intervention group had lower HADS-T [mean difference -1.80, 95% confidence interval (CI) -3.29 to -0.31; p=0.02] and higher quality-adjusted life-years (QALYs) (mean difference 0.03, 95% CI -0.01 to 0.08). Costs were no different between groups [mean £ 252 (95% CI -£ 28 to £ 565) for intervention group]. The cost-effectiveness acceptability curve showed a greater than 99% chance of being cost-effectiveness at a £ 30,000/QALY willingness-to-pay threshold and a high probability of cost-effectiveness based on the HADS-T score. Carers in the intervention group had less case-level depression [odds ratio (OR) 0.24, 95% CI 0.07 to 0.76], a trend towards reduced case-level anxiety (OR 0.30, 95% CI 0.08 to 1.05), lower Hospital Anxiety and Depression Scale-anxiety (HADS-A) (-0.91, 95% CI -1.76 to -0.07; p = 0.03) and Hospital Anxiety and Depression Scale-depression (HADS-D) (-0.91, 95% CI -1.71 to -0.10; p = 0.03) and higher Health Status Questionnaire (HSQ) QoL (mean difference 4.09, 95% CI 0.34 to 7.83). Group differences in abusive behaviour (OR 0.48, 95% CI 0.18 to 1.27) and the person with dementia's quality of life-Alzheimer's disease (QoL-AD) (mean increase 0.59, 95% CI -0.72 to 1.89) were not significant. In the long term, the intervention group had lower HADS-T (mean difference -2.58, 95% CI -4.26 to -0.90; p = 0.03) and higher QALYs (mean difference 0.03, 95% CI -0.01 to 0.06). Carers in the intervention group had less case-level depression (OR 0.14, 95% CI 0.04 to 0.53), a trend towards reduced case-level anxiety (OR 0.57, 95% CI 0.26 to 1.24), lower HADS-A (-1.16, 95% CI -2.15 to -0.18) and HADS-D (1.45, 95% CI -2.32 to -0.57), and higher HSQ (mean difference 7.47, 95% CI 2.87 to 12.08). Thirty-two (18.7%) people with dementia in the intervention group and 17 (20.2%) in TAU were admitted to a care home (hazard ratio 0.83, 95% CI 0.44 to 1.56; p = 0.56). There were no significant differences between groups in abusive behaviour (OR 0.83, 95% CI 0.36 to 1.94), the person with dementia's QoL-AD (0.17, 95% CI -1.37 to 1.70) or costs (£ 336, 95% CI -£ 223 to £ 895) for intervention group. The probability that the intervention would be seen as cost-effective at £ 30,000/QALY threshold and cost-effectiveness on the HADS-T remained high. The START intervention was clinically effective and cost-effective in the short and longer term. The results are robust to the sensitivity analyses performed. Future work is needed to consider mechanism of action; the effects on people with dementia in clinical terms (cognition, neuropsychiatric symptoms, longer-term care home admission); and on health and social care costs. In addition, we will explore the effects of carer abusive behaviour on the care recipient's care home admission and if this then reduces abusive behaviour. We would also like to implement START and evaluate this implementation in clinical practice. Current Controlled Trials ISCTRN70017938.

To determine the predictors of magnitude of change in response to a participation-focused leisure-time physical activity intervention in children with cerebral palsy (CP) using the ParticiPAte CP protocol. We included 33 children (16 males, 17 females) aged 8 to 12years (mean age=10y, SD=1y 6mo) with CP with pre/postintervention data from a wait-list randomized trial. The hypothesized linear predictors of change in primary outcomes (Canadian Occupational Performance Measure [COPM]-performance and COPM-satisfaction, Belief in Goal Self-Competence Scale (BiGSS), and minutes per day moderate-to-vigorous physical activity [MVPA]) were: age; Gross Motor Function Classification System level; comorbid autism spectrum disorder (ASD); Goal Attainment Scaling T score; Problems in Schools Questionnaire; Physical Activity Climate Questionnaire; Motives for Physical Activities Measure-Revised; and stage of behaviour change. Multivariable models were selected using the Bayesian information criterion. Overcoming barriers to participation, age, and comorbid ASD explained 49% of the variance in change in COPM-performance. Being motivated by interest and/or enjoyment and age explained 32% of the variance in change in COPM-satisfaction. Being motivated by physical activity competence or appearance (extrinsic motivation) explained 24% of the variance in change in BiGSS. Parental autonomy supportiveness, overcoming barriers to participation, appearance motivation, and baseline MVPA explained 59% of the variance in change in MVPA. These findings support a behaviour paradigm for conceptualizing physical activity in children with CP. Children who met their treatment goals showed a greater increase in physical activity participation. Children who were more intrinsically motivated by physical activity at baseline improved more. Being older and having a comorbid diagnosis of autism spectrum disorder were associated with an attenuated effect of the therapy.

Introduction: Goal setting is an effective strategy in altering fitness and dietary behaviours. The goal attainment scale (GAS) is a patient-reported outcome measure that can be used to quantify goal achievement. The GAS has not been extensively assessed in lifestyle intervention trials. This study aimed to describe the goal setting process and assess the impact of a digital exercise and diet service and self-efficacy on goal attainment in people with chronic disease and at increased cardiometabolic risk. Methods: This study presents a single-centre, 26-week, randomised controlled trial (RCT) comparing standard care to digital health technologies (text messages, nutrition/exercise app, video consultations with dietitian and/or exercise physiologist). The comparator group was offered dietitian review (per standard care), and both groups received a wearable activity monitor. Individualised goal setting was facilitated prior to randomisation. Goal importance, performance measures, and self-efficacy were determined by participants. Goal outcome and ‘Change in GAS’ scores, reflecting the difference between baseline and follow-up performance, were calculated using validated formulae. Results: Goal setting was completed and reviewed by 66 participants, with a median age of 51 years and 56% being male. The most common goals related to weight loss (46%), fitness (29%), and diet (15%). Most participants (62%) reported improvements in their goals, with most improvements in dietary (71%), fitness (52%), and weight loss (39%) goals. There was no significant difference in goal outcomes between intervention and comparator groups (p = 0.99). There was, however, a significant correlation between nutrition self-efficacy and dietary goal achievement (p = 0.04). Conclusions: The novelty and feasibility of goal setting and attainment were demonstrated in this RCT of lifestyle interventions in people with chronic disease. Though the intervention did not significantly improve goal attainment, most participants reported improvements in their lifestyle goals. There were greater improvements in dietary goals than in fitness or weight loss goals. Participant-led goal setting with GAS and participant self-efficacy has potentially important applications in future lifestyle modification research and clinical implementation endeavours.

We report a mixed-methods process evaluation embedded within a randomised controlled trial. We aimed to test and refine a theory of change model hypothesising key causal assumptions to understand how the New Interventions for Independence in Dementia Study (NIDUS)-Family (a manualised, multimodal psychosocial intervention), was effective relative to usual care, on the primary outcome of Goal Attainment Scaling (GAS) over 1year. In 2021-2022, intervention-arm dyads completed an acceptability questionnaire developed to test causal assumptions. We conducted qualitative interviews with dyads and intervention facilitators, purposively selected for diverse follow-up GAS scores. We collected observational data from intervention session recordings. We thematically analysed data, then integrated qualitative and quantitative data. 174/204 (85.3%) dyads allocated to NIDUS-Family, fully completed it, 18 partially completed, while 12 received no intervention. We interviewed 27/192 (14%) of dyads receiving any sessions, and 9/10 facilitators; and observed 12 sessions. 47/192 (24.5%) of carers completed the acceptability questionnaire. We identified four themes: (A) 'Someone to talk to helps dyads feel supported'; (B) 'NIDUS-Family helps carers change their perspective'; (C) 'Personalisation helps people living with dementia maintain their identity' and (D) 'Small steps help dyads move forward'. Key causal pathway mechanisms were: a respectful, trusting and impartial relationship with the facilitator: supporting the development of meaningful goals and support to find manageable solutions. Core implementation factors were delivery of the modules from a consistent facilitator across regular sessions. Core contextual factors influencing these mechanisms were dyadic participation and understanding of abilities.

Proposed Criteria for Appraising Goal Attainment Scales Used as Outcome Measures in Rehabilitation Research

Quality of life is recognized as an important outcome of health care for people with all abilities. There has been a marked increase in interest and the number of oral health-related quality of life (OHRQoL) instruments. In the absence of adequate care, resulting oral diseases like dental caries and periodontal problems can have not only physical and functional but also social, psychological and economic impacts.1 However, there is no such study on people with disabilities for whom it is difficult to assess the quality of life, especially those with limited or no communication skills, who are unable to express pain and discomfort. They depend greatly on their carers for their daily activities including oral care and for seeking appropriate dental treatment that could have an impact on their quality of life. Carers play the ‘gate keeper role’ as a contact person of the care recipient making decisions on their behalf and the ‘supportive role’, assisting with oral care and making visits to the dentist.2 The most widely reported reason for dental visits is when a carer suspects that the care recipient might be experiencing pain by noting changes in behaviour particularly at mealtimes, followed by secondary reasons including halitosis, drooling and aspiration of food and/or liquids.3 It is the carer who is best placed to note small changes in behaviour and detect any problem. It is the carer’s perceived impact of conditions that will drive them to take their care recipient for treatment. Therefore, the overall aim was to assess oral health-related quality of life (OHRQoL) among adults with disabilities, from the carer's perspective. The specific aims were to: (1) compare reported negative impacts with indicators like oral health problems and treatment need; and (2) determine factors that are associated with reports of one or more negative impacts on OHRQoL. The study was a cross-sectional survey of carers of 18–44 year olds with physical and intellectual disabilities living in South Australia in three settings: family home, community housing and institutions. Ethical clearance was obtained from The University of Adelaide Human Research Ethics Committee in July 2004. In August 2004, 21 organizations were approached to seek their assistance in contacting carers of 18–44 year old care recipients with physical and intellectual disabilities registered with them. From the information received, the target sample was carers of 1448 disabled adults. However, after removing people who were deceased or out-of-scope due to age, and after reconciling duplicate responses, the adjusted target was 1280 care recipients. In February 2005, 12 participating organizations sent an information package to the primary carer of each registered care recipient in their database which included an information sheet on the study for the carer and the care recipient, a questionnaire for the carer and a reply-paid envelope. A reminder card was posted to all carers two weeks later and a final follow-up letter to all non-responders four weeks later. A mail questionnaire was completed by carers between February and June 2005. Questions included carer characteristics, care recipient characteristics, questions from oral health impact profile (OHIP),4 oral hygiene practices, oral health problems and perceived treatment need. From Locker's model of oral health,1 four conceptual dimensions of impact were explored – psychological disability, physical pain, physical disability and social disability – using four questions from OHIP. Questions from OHIP were: How often during the last year has your main care recipient … had trouble sleeping (psychological disability); had pain and discomfort (physical pain); had unsatisfactory diet (physical disability); been irritable (social disability)…because of a dental problem? These four questions were selected from the 49-item OHIP questionnaire4 with the assumption by the authors that observable domains like function (problem eating) or social issues (irritability) are more likely to be validly assessed. Studies show that proxies appear to provide better answers about more objective rather than subjective information, with validity of the information increasing with the closer personal relationship to the proxy.5 Responses were made on a Likert scale ranging from ‘never’ (code = 1), ‘rarely’(code = 2), ‘sometimes’ (code = 3), ‘fairly often’ (code = 4), and ‘very often’ (code = 5). The last three responses were coded as negative impact on quality of life. As a significant proportion of carers responded ‘don't know’, it was treated as an additional response (code = 6). Responses were received for 485 adults with disabilities (37.9%). The data were weighted to represent the South Australian population of adults with disabilities.6 Unweighted data were used to describe characteristics of carers and care recipients. Subsequent analyses were undertaken using weighted data. The characteristics of the carers are described in Table 1. Approximately one-third of carers were over the age of 55 and 82.3% were females. Carers comprised of family carers (51.9%) and non-family carers (48.1%) in institutions and community housing. Characteristics of the care recipients are described in Table 2. There were slightly more males than females (61.9% male, 38.1% female), with 47.4% of them living with family, 31.4% in the community and 21.2% in institutions. The main disabling conditions were intellectual disability (38.5%), autism (31.7%), cerebral palsy (19.5%) and others (spina bifida, quadriplegia, head injury) (10.4%). While 21.3% communicated non-verbally, almost a third (30.3%) of their care recipients had little or no effective communication. Non-verbal means of communications included sign language, use of picture cards/boards, writing, typed/computer messages. Other (Spina bifida, quadriplegia, head injury) Prevalence of negative impact from a dental problem on individual items like diet, sleep, behaviour, and pain and discomfort was low. About 9.2% reported a negative impact for pain and discomfort, 7.7% for irritable behaviour, 6.1% for trouble sleeping, and 3.0% related to unsatisfactory diet. However, more than one in 10 care recipients (13.5%) reportedly experienced one or more negative impacts (Impact 1+) during the last year. The proportion of ‘don't know’ for each question was higher (Table 3). A much higher proportion of carers thought their care recipient currently had both an oral health problem and dental treatment need (Table 4). Some 11.8% of carers reported not knowing whether their care recipient had an oral health problem and a slightly higher 14.7% responded ‘don't know’ for perceived treatment need. The most frequent oral health problem reported was bad breath followed by decay and bleeding gums (Table 5). Other problems included ulcers, infection, tartar build-up, tooth wear and wisdom teeth. Accordingly, the most frequent perceived treatment need reported was scaling (89.6%), followed by filling (21.2%) (Table 6). Other perceived treatment needs included general check-up and capping of worn teeth. Table 7 summarizes perceived negative impacts as reported by carers from family, community and institutional settings. About 13.5% of care recipients reportedly experienced one or more negative impacts (Impact 1+), with family carers reporting more negative impacts compared to carers from other settings (p < 0.05). Reported negative impacts were more among those who could communicate verbally than for those with little or no communication (Table 8). For all other associations, ‘don't know’ response was treated as ‘missing’. Binary logistic regression modelling testing bivariate associations was carried out to examine which care recipient and carer factors were associated with reporting of one or more negative impacts (Impact 1+). Family carers and one-on-one carers reported greater odds of their care recipient having one or more negative impacts compared to care recipients cared for by non-family carers and care recipients with 5+ carers respectively (Table 9). Family carers had just over two times the odds of reporting negative impacts (OR = 2.1, [0.97, 4.6]) than non-family carers. The odds of negative impacts reported for those receiving one-on-one care was almost five times more than for those cared for by five or more carers (OR = 4.8, [1.8, 12.9]). The younger age group, those with autism and those who communicate verbally were reported to have experienced more negative impacts than their older counterparts, those with other disabling conditions and those who lacked verbal means of communication respectively. Once a day toothbrushing, those with oral health problems and perceived treatment need were associated with higher odds of negative impact than twice a day toothbrushing, and those without oral health problems and no perceived treatment need. After adjusting for carer- and care recipient-characteristics, multivariate analysis showed that there were more reports of negative impacts for those who could communicate verbally, than for those with non-verbal and little or no effective communication. Also, those reported to have perceived dental treatment need had about six times the odds of reporting of one or more negative impacts (Table 10). Age, disabling condition, toothbrushing frequency, carer type, number of carers providing care and oral health problems were not statistically significant (p > 0.05). The low response rate seems to reflect the time constraints faced by carers of people with disabilities. There were several other reasons or comments for non-response to the questionnaires. Some returned blank questionnaires or with short comments like ‘thanks but no thanks’ and ‘happy with private practice’. Some called to say they were not willing to participate, giving reasons like they were sick of surveys that did not help them and that research is done only to get a degree. There was a 75-year-old female who called to say she was unable to complete the questionnaire and there was no one else to help her, highlighting yet another problem of ageing carers. One was too sick to participate and another had died. Over 30% of carers were over the age of 55 years, highlighting another problem in the near future when these ageing carers (especially parents) themselves become functionally dependent. The high prevalence of non-verbal and little or no effective communication in this population challenges both carers and health professionals in providing care. Carers, who are expected to best know their care recipients, were unable to report OHRQoL for a significant proportion (18%) of those with little or no effective communication skills. When they did, negative impacts reported were much lower than reported oral health problems and perceived treatment need, suggesting carers may be underestimating pain and suffering experienced by their care recipients. Furthermore, a retrospective study of 103 special needs patients in France has shown that dental needs of special care patients are severely underestimated by both their carers and the dental profession.3 It can be argued that the more frequently reported oral health problems like gum problems and bad breath may not be assessed as having a negative impact on the OHIP questions used in this survey. At the same time, it must also be noted that the gum problems in this population may be more on the extreme end of the scale compared to the general population and could be causing pain and discomfort. Bad breath could be putting off the carers from cleaning their care recipient's teeth and the problem could worsen with time and have additional negative impacts on social life. From the responses from this survey, perhaps more appropriate additional questions asked could have been: How often during the last year, has your main care recipient … had stale breath (functional limitation), had painful gums (physical pain) because of a dental problem? Family carers and one-on-one carers reported more negative impacts than other carers, suggesting that they may be more observant. Alternatively, those being cared for by family carers and one-on-one carers may in fact be having more oral health problems, perceived dental treatment need and therefore more reported negative impacts. More of the younger care recipients live at home and are cared for by parents and therefore the association between younger age group and higher reporting of negative impacts. Those with autism and other disabling conditions where care recipients are able to communicate verbally were more likely to report negative impacts. After adjusting for carer- and care recipient-characteristics, multivariate analysis showed that those who could communicate verbally and reported perceived dental treatment need had higher odds of reporting negative impacts than those who communicated non-verbally or had little or no effective communication skills, and did not report reported perceived dental treatment need. Carer's view of the oral health of their care recipients may differ from an oral health assessment obtained from a clinical examination. However, the objective was to assess OHRQoL among adults with disabilities from the carer's perspective and also understand negative impacts of oral health problems on their care recipents. Those who could communicate verbally had higher odds of reporting negative impacts than those who communicated non-verbally or had little or no effective communication skills. Those reported to have one or more negative impacts were more likely to be reporting perceived dental treatment need. Yet the prevalence of reported negative impacts was lower than the prevalence of oral health problems and dental treatment need. Carers were unable to report OHRQoL for a significant proportion of those with little or no effective communication skills. Therefore, carers need to be made aware of negative impacts of oral problems and trained to identify them by observing behavioural changes at an early stage to reduce the suffering caused by advanced disease and to improve OHRQoL. This report was supported by a Faculty of Health Sciences Divisional Scholarship, The University of Adelaide and the Australian Dental Research Foundation. The authors are grateful to the participating organizations and the South Australian Dental Service for their assistance. This article was prepared by Dr Archana Pradhan.

To assess whether home-based medication review by a pharmacist for at-risk older patients in a primary care setting can reduce hospital admissions. Randomised controlled trial comparing home-based medication review with standard care. Home-based medication review of 136 patients registered with one general practice. Study participants were over 80 years of age, living at home, taking four or more medicines, and had at least one additional medicines-related risk factor. The intervention comprised two home visits by a community pharmacist who educated the patient/carer about their medicines, noted any pharmaceutical care issues, assessed need for an adherence aid, and subsequently met with the lead GP to agree on actions. Total non-elective hospital admissions within 6 months. Secondary outcomes included number of deaths, care home admissions and quality of life (EQ-5d). Impact on number of medicines prescribed was also assessed. At 6 months, no difference in hospital admissions (21 intervention versus 20 control P = 0.80), and no difference in care home admissions or deaths were detected between groups. There was a small (non-significant) decrease in quality of life in the intervention group. There was a statistically significant reduction in the mean number of medicines prescribed ( -0.87 items in favour of the intervention group, 95% confidence interval -1.66 to -0.08, P = 0.03). No positive impact on clinical outcomes or quality of life was demonstrated, however, this intervention did appear to reduce prescribing. This is in line with other evidence and suggests that this form of intervention may not have a clear health gain, but may lead to modest savings in terms of reduced prescribing. Future research should focus on whether such a prescribing effect would make this type of intervention cost effective.

Goal Attainment Scaling (GAS) is a method for writing person-centred approach evaluation scales that can be used as an outcome measure in clinical or research settings in rehabilitation. To be used in a research setting, it requires a high methodological quality approach. The aim of this study was to explore the feasibility and reliability of the GAS quality rating system, to ensure that GAS scales used as outcome measures are valid and reliable. Secondary objectives were: (1) to compare goal attainment scores’ reliability according to how many GAS levels are described in the scale; and (2) to explore if GAS scorings are influenced by who scores goal attainment. The GAS scales analysed here were set collaboratively by 57 cognitively impaired adults clients and their occupational therapist. Goals had to be achieved within an inpatient one-month stay, during which clients participated in an intervention aimed at improving planning skills in daily life. The GAS quality rating system proved to be feasible and reliable. Regarding GAS scores, interrater reliability was higher when only three of the five GAS levels were described, i.e., “three milestone GAS” (0.74–0.92), than when all five levels were described (0.5–0.88), especially when scored by the clients (0.5 –0.88).

Purpose: The overall objective was to apply the goal attainment scaling (GAS) in neuropsychological rehabilitation in multiple sclerosis (MS). The specific aims were to evaluate whether (1) GAS-rated goals are attained; (2) attaining goals is related to standardized rehabilitation outcome measures; and (3) GAS-rated goals can be mapped to the International Classification of Functioning, Disability, and Health (ICF). Method: 56 relapsing-remitting MS patients received neuropsychological rehabilitation conducted once a week for 13 consecutive weeks. The attainment of GAS-rated personal goals and the association between achievement of goals and standardized rehabilitation outcome were evaluated. Moreover, GAS-rated goals were mapped to the ICF. Results: Median (interquartile range) GAS attainment T-score was 56.0 (50.0–62.0); 88.8% of personal goals set were fully achieved. The attainment of goals was not significantly associated with the outcome in majority of the standardized measures. Of the 182 meaningful concepts identified in the goals, 181 could be mapped to the ICF. Conclusions: GAS seems to be an appropriate outcome measure in neuropsychological rehabilitation in MS. GAS-rated personal goals were well achieved, and GAS was found to tap changes not covered with standardized outcome measures.Implications for RehabilitationGAS seems to be an appropriate outcome measure in neuropsychological rehabilitation in MS.GAS-rated personal goals were well achieved, and GAS was found to tap changes in the areas not covered with standardized outcome measures.GAS seems to offer a possibility to take into account the specific needs of each individual patient.The ICF can be used to classify goals in neuropsychological rehabilitation in MS.