Advance care planning for people living with dementia: An umbrella review of effectiveness and experiences

© 2020 The Author(s). This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).Abstract Background: End of life care is often inadequate for people with dementia. Advanced care planning (ACP) has the potential to improve outcomes for people with dementia. The aim of this review is to establish the strength of the evidence and provide decision makers with a clear understanding of what is known about ACP for people living with dementia.Design: Evidence synthesis including systematic reviews and primary studies. PROSPERO registration: CRD42018107718. Data sources: PubMed, CINAHL Plus, SCOPUS, Social Care Online and Cochrane Library were searched (July 2018). No year limit applied. To be included, reviews had to evaluate effectiveness of ACP for people with dementia or report on views and experiences of ACP from the perspective of people with dementia, carers, or health and care professionals. Additional searches (September 2018) were conducted to identify recent primary studies not included in the reviews.Review methods: Data extraction was undertaken by one reviewer and checked by a second. Methodological quality was assessed using AMSTAR-2 and Joanna Briggs Institute instruments by two authors independently. Outcomes were categorized and tabulated to assess effectiveness. Qualitative data was analysed using thematic synthesis.Results: Nineteen reviews (163 unique studies) and 11 primary articles with a range of advance care planning definitions and of variable quality were included. Advance care planning was associated with decreased hospitalizations, increased concordance between care received and prior wishes and increased completion of advance care planning documents but quality of primary research was variable. Views of ACP for people with dementia can be clustered around six themes; 1) timing and tailoring, 2) willingness to engage, 3) roles and responsibilities of healthcare professionals, 4) relationships, 5) training and 6) resources needed. The diminishing decision-making capacity over time is a key overarching feature.Conclusions: Advance care planning is acceptable for people with dementia and their carers and is associated with improved outcomes. Guidelines on which outcomes and which definition to use are necessary, as is research to test different approaches to ACP. Education on topics related to diminishing decision-making capacity is key to optimize advance care planning for people with dementia and their carers.Peer reviewe

Implementing advance care planning in routine nursing home care : the development of the theory-based ACP+ program

Background While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice. Objectives We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner. Design To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling. Setting and participants Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer. Methods The work was carried out by means of 1) operationalization of key intervention components identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis. Results The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning. Conclusions The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice

DIGIROP prediction models for severe retinopathy of prematurity

BACKGROUND: Retinopathy of prematurity (ROP), a preventable, potentially blinding eye disease, is primarily diagnosed in extremely preterm infants. Gestational age (GA) and birth weight (BW) are the most prominent risk factors. Routine ROP examinations are performed to identify the low proportion of infants who progress to needing treatment. In Sweden, ~30% of all screened infants are diagnosed with ROP, and 6% require treatment. Safe ROP prediction models can improve infant well-being and make screening efficient by identifying low- and high-risk infants. AIM: The overall aim of the thesis was to develop and validate prediction models for severe ROP requiring treatment and propose a clinical decision support tool for safe and effective release of low-risk infants from ROP screening examinations. In addition, the natural course of the disease was described, and the prognostic value of the parenteral nutrition duration (PND) on ROP was demonstrated. MATERIALS AND METHODS: The model development data originated from the Swedish national ROP register (SWEDROP). External validations included data from SWEDROP, Germany, and the US. Paper I included 6947 infants in the model development and 2122 in the external validation cohort. Corresponding figures for Paper II were 6991 and 1241, and for Paper IV, 8814 and 2325, respectively. Paper III included 1082 infants in its external validation. Extended Poisson models were used to develop DIGIROP-Birth requiring GA, BW, and sex in version 1.0, and PND ≥14 days in version 2.0 as input variables. Logistic regression models were used to develop DIGIROP-Screen, including the status and the age at the first ROP diagnosis besides DIGIROP-Birth risk estimates. GA-specific cut-offs were identified for the clinical decision support tool. RESULTS: The instantaneous risk for ROP peaked around 12 weeks postnatal age, irrespective of GA at birth. Longer PND was strongly correlated to ROP severity, and faster progression. The risk for ROP differed for boys and girls over GA and PND. DIGIROP models released ~50% of infants from all ROP screening examinations and additionally ~25% during the screening process, while maintaining 100% sensitivity. CONCLUSION: DIGIROP models may safely and efficiently release infants from unnecessary ROP examinations. The models appear superior to other currently available ROP models and are freely available as an online application (www.digirop.com)

The palliative care knowledge of nursing home staff : the EU FP7 PACE cross-sectional survey in 322 nursing homes in six European countries

Background: The provision of high-quality palliative care in nursing homes (NHs) is a major challenge and places demands on the knowledge and skills of the staff. Aim: This study assesses the palliative care knowledge of staff in NHs in Europe. Design: Cross-sectional study using structured survey Setting/participants: Nurses and care assistants working in 322 representative samples of NHs in Belgium, the Netherlands, England, Finland, Poland and Italy. Palliative care knowledge is measured with the Palliative Care Survey. Scores on the scales range between 0 and 1; higher scores indicate more knowledge. Results: A total of 3392 NH-staff were given a questionnaire, and 2275 responded (67%). Knowledge of basic palliative care issues ranged between 0.20 in Poland (95% confidence interval (CI) 0.19; 0.24) and 0.61 in Belgium (95% CI 0.59; 0.63), knowledge of physical aspects that can contribute to pain ranged between 0.81 in Poland (95% CI 0.79; 0.84) and 0.91 in the Netherlands (95% CI 0.89; 0.93), and knowledge of psychological reasons that can contribute to pain ranged between 0.56 in England (95% CI 0.50; 0.62) and 0.87 in Finland (95% CI 0.83; 0.90). Factors associated with knowledge were country, professional role and having undertaken formal training in palliative care. Conclusions: Knowledge of nurses and care assistants concerning basic palliative care issues appears to be suboptimal in all participating countries, although there is substantial heterogeneity. Education of nursing staff needs to be improved across, but each country may require its own strategy to address the unique and specific knowledge gaps

Adult attachment and interpersonal problems in survivors of interpersonal trauma

Hintergrund: Studien zeigen, dass das Erleben eines frühen chronischen interpersonellen Traumas (early chronic interpersonal trauma, ECIP) mit unsicherer Bindung zu intimen Partnern(innen) im Erwachsenenalter zusammenhängt. Es wurde bisher jedoch nicht geprüft, ob dies speziell auf frühe Traumata zutrifft und welcherart die Beziehungen zwischen Traumatyp, Bindung im Erwachsenenalter und PTSD sind. Die vorliegende Studie hatte folgende Ziele: (1) Vergleich der Bindungssicherheit in einer ECIP Gruppe mit jener bei Menschen, die ein spätes (Alter ≥ 14 Jahre), ein frühes kurzzeitiges (Alter < 14 Jahre, Dauer < 1 Jahr) oder ein nicht-interpersonelles Trauma erlebt hatten, (2) Prüfung der Hypothese, dass die Bindung im Erwachsenenalter eine Mediatorvariable für den Zusammenhang zwischen dem Erleben eines interpersonellem Traumas und der Stärke von PTSD-Symptomen darstellt. Methode: Internet-User, die durch trauma- oder gesundheitsbezogene Websites rekrutiert wurden, füllten sechs Online-Fragebögen aus. Erhoben wurden die Traumageschichte, Bindung im Erwachsenenalter, interpersonelle Probleme, PTSD-Symptomstärke, sowie Anzeichen einer Depression und Borderline Persönlichkeitsstörung. Die Bindungssicherheit wurde mit dem Fragebogen Experiences in Close Relationships - Revised (ECR-R; Fraley et al., 2000) erhoben, welcher bindungsbezogene Vermeidung und Ängstlichkeit, erfasst. Ergebnisse: Insgesamt bearbeiteten 260 Personen (234 Frauen) den Fragebogen bis zum Schluss. Nach Anwendung der Ausschlusskriterien blieben 209 Personen (190 Frauen) über. Die ECIP Gruppe (n = 130) berichtete eine signifikant höhere bindungsbezogene Ängstlichkeit und Vermeidung als spät interpersonell (n = 31) oder nicht-interpersonell traumatisierte Personen (n = 24). Es gab, konträr zur Erwartung, jedoch keinen Hinweis auf einen Unterschied zur Gruppe der früh kurzzeitig interpersonell traumatisierten Personen (n = 24). Weiters war die Bindungsunsicherheit im Erwachsenenalter ein partieller Mediator des Zusammenhangs zwischen Trauma und der PTSD-Symptomstärke. Schlussfolgerung: Unsichere Bindung im Erwachsenenalter könnte eine konsistente Folge früher interpersoneller Traumata sein sowie zur Entwicklung von PTSD beitragen. Von der künftigen Forschung wird zu klären sein, ob unsichere Bindung speziell auf frühe interpersonelle Traumata zurückzuführen ist oder ob sie eine Folge der PTSD-Symptome ist, die nach einem interpersonellen Trauma auftreten.Background: Earlier research has shown that the experience of early chronic interpersonal trauma (ECIP) is related to insecure attachment to romantic partners in adulthood. However, it has not been tested to date whether this is specific for early-onset trauma and what the exact relationship is between trauma type, adult attachment and posttraumatic stress disorder (PTSD). The aims of this study were (1) to compare adult attachment in an ECIP group to that in individuals who experienced a late-onset, an early single or a non-interpersonal trauma, and (2) to test whether adult attachment mediates the relationship between the experience of interpersonal trauma and PTSD symptom severity. Material and methods: Two hundred and sixty English-speaking Internet users, recruited through trauma-or health-related websites, completed a set of online questionnaires assessing trauma history, adult attachment security, interpersonal problems, PTSD symptom severity, as well as screenings of depression and borderline personality disorder. Attachment security was assessed with the Experiences in Close Relationships Revised scale (Fraley et al., 2000) which taps the two adult attachment dimensions avoidance and anxiety. Results: Following the application of exclusion criteria, 209 individuals (190 women) remained in the sample. The early chronic interpersonal trauma group (n = 130), which included individuals sexually or physically abused in childhood, reported significantly more attachment avoidance and anxiety than the late interpersonal (n = 31) and the non-interpersonal trauma group (n = 24). However, no difference was found between early short-term (n = 24) and early chronic traumas. Furthermore, adult attachment showed to be a partial mediator of the association between trauma type and PTSD symptom severity. Conclusion: Attachment-related avoidance and anxiety in adulthood may be a consistent sequel of early interpersonal trauma and may contribute to the development of PTSD. Future research needs to test whether insecure adult attachment is a unique sequel of interpersonal trauma or whether it stems from increased PTSD symptom severity following interpersonal trauma

Validation of the Retinopathy of Prematurity Activity Scale (ROP-ActS) using retrospective clinical data

Acta Ophthalmologica published by John Wiley &amp; Sons Ltd on behalf of Acta Ophthalmologica Scandinavica Foundation. Purpose: The International Neonatal Consortium recently published a proposed retinopathy of prematurity (ROP) activity scale intended for use in clinical trials after validation. The aim of this study was to validate the ROP activity scale (ROP-ActS) in a ROP screened cohort with protocol based collected data by evaluating the ability of the ROP-Act scores to predict ROP treatment. In addition, we aimed to evaluate the scale’s sensitivity characteristic of disease severity by studying association with gestational age (GA) in comparison with conventionally used ROP stage and zone. Methods: A cohort of 535 preterm infants with 3324 ROP examinations with an end-point of ROP treatment or end of screening in Gothenburg, Sweden, was included. Median GA was 28.1\ua0weeks, 47.5% were girls, and 74 (13.8%) infants were treated for ROP. The validation was performed by estimating probabilities for ROP treatment, and by applying logistic and linear regression. Results: The original ROP-ActS was overall well-ordered with respect to ability to predict ROP treatment but could be improved by re-ordering score 3 (zone II stage 1) and 5 (zone III stage 3) based on our clinical cohort data. The modified ROP-ActS was superior to ROP stage and zone in the prediction analysis of ROP treatment. Modified ROP-ActS was more strongly related to GA than currently used ROP stage, but not zone. Conclusion: In the studied cohort, the modified ROP-ActS could better predict ROP treatment compared to ROP stage and zone. Retinopathy of Prematurity Activity Scale (ROP-ActS) had a superior sensitivity characteristic studied through association to GA than conventionally used ROP stage

Timely short-term specialised palliative care service intervention for frail older people and their family carers in primary care : study protocol for a pilot randomised controlled trial

Introduction There is limited evidence regarding the effectiveness of timely integration of short-term specialised palliative care services for older people in primary care. Using a Theory of Change approach, we developed such an intervention, the Frailty+ intervention. We present the protocol of a pilot randomised controlled trial (RCT) with a process evaluation that aims to assess the feasibility and preliminary effectiveness of the Frailty+ intervention. Methods and analysis We will conduct a pilot RCT in Flanders, Belgium. Frail older people who are discharged to home from hospital will be identified and recruited. Seventy-six will be randomly assigned either to the control group (standard care) or the intervention group (Frailty+ intervention alongside standard care). Data will be collected from patients and family carers. At the core of the Frailty+ intervention is the provision of timely short-term specialised palliative care facilitated by a nurse from the specialised palliative home care service over a period of 8 weeks. We will assess feasibility in terms of recruitment, randomisation, acceptability of the intervention, retention in the programme and data completion. The primary outcome for assessing preliminary effectiveness is a mean score across five key symptoms that are amenable to change (ie, breathlessness, pain, anxiety, constipation, fatigue), measured at baseline and 8 weeks post-baseline. The process evaluation will be conducted in the intervention group only, with measurements at 8-11 weeks post-baseline to evaluate implementation, mechanisms of change and contextual factors. Ethics and dissemination The study has been approved by the ethics committee of University Hospital Ghent. Results will be used to inform the design of a full-scale RCT and will be published in a peer-reviewed, open access journal

Evaluation of the Retinopathy of Prematurity Activity Scale (ROP-ActS) in a randomised controlled trial aiming for prevention of severe ROP : A substudy of the Mega Donna Mega trial

Objective The current grading of retinopathy of prematurity (ROP) does not sufficiently discriminate disease severity for evaluation of trial interventions. The published ROP Activity Scales (original: ROP-ActS and modified: mROP-ActS), describing increasing severity of ROP, versus the categorical variables severe ROP, stage, zone and plus disease were evaluated as discriminators of the effect of an ROP preventive treatment. Methods and analysis The Mega Donna Mega trial investigated ROP in infants born <28-week gestational age (GA), randomised to arachidonic acid (AA) and docosahexaenoic acid (DHA) supplementation or no supplementation. Of 207 infants, 86% with finalised ROP screening were included in this substudy. ROP-ActS versus standard variables were evaluated using Fisher’s non-parametric permutation test, multivariable logistic and linear regression and marginal fractional response models. Results The AA:DHA group (n=84) and the control group (n=93) were well balanced. The maximum ROP-ActS measurement was numerically but not significantly lower in the AA:DHA group (mean: 4.0 (95% CI 2.9 to 5.0)) versus the control group (mean: 5.3 (95% CI 4.1 to 6.4)), p=0.11. In infants with any ROP, the corresponding scale measurements were 6.8 (95% CI 5.4 to 8.2) and 8.7 (95% CI 7.5 to 10.0), p=0.039. Longitudinal profiles of the scale were visually distinguished for the categories of sex and GA for the intervention versus control. Conclusions The preventive effect of AA:DHA supplementation versus no supplementation was better discriminated by the trial’s primary outcome, severe ROP, than by ROP-ActS. The sensitivity and the linear qualities of ROP-ActS require further validations on large data sets and perhaps modifications. Trial registration number NCT03201588

Home care by general practitioners for cancer patients in the last 3 months of life:An epidemiological study of quality and associated factors

BACKGROUND: Stronger generalist end-of-life care at home for people with cancer is called for but the quality of end-of-life care delivered by general practitioners has been questioned.AIM: To determine the degree of and factors associated with bereaved relatives' satisfaction with home end-of-life care delivered by general practitioners to cancer patients.DESIGN: Population-based mortality followback survey.SETTING/PARTICIPANTS: Bereaved relatives of people who died of cancer in London, United Kingdom (identified from death registrations in 2009-2010), were invited to complete a postal questionnaire surveying the deceased's final 3 months of life.RESULTS: Questionnaires were completed for 596 decedents of whom 548 spent at least 1 day at home in the last 3 months of life. Of the respondents, 55% (95% confidence interval: 51%-59%) reported excellent/very good home care by general practitioners, compared with 78% (95% confidence interval: 74%-82%) for specialist palliative care providers and 68% (95% confidence interval: 64%-73%) for district/community/private nurses. The odds of high satisfaction (excellent/very good) with end-of-life care by general practitioners doubled if general practitioners made three or more compared with one or no home visits in the patient's last 3 months of life (adjusted odds ratio: 2.54 (95% confidence interval: 1.52-4.24)) and halved if the patient died at hospital rather than at home (adjusted odds ratio: 0.55 (95% confidence interval: 0.31-0.998)).CONCLUSION: There is considerable room for improvement in the satisfaction with home care provided by general practitioners to terminally ill cancer patients. Ensuring an adequate offer of home visits by general practitioners may help to achieve this goal.</p