'Staying safe' – A narrative review of falls prevention in people with Parkinson’s -'PDSAFE'

This is the author accepted manuscript. The final version is available from Taylor & Francis via the DOI in this record.Background: Parkinson's disease demonstrates a spectrum of motor and non-motor symptoms. Falling is common and disabling. Current medical management shows minimal impact to reduce falls, or fall related risk factors such as deficits in gait, strength and postural instability. Despite evidence supporting rehabilitation in reducing fall risk factors, the most appropriate intervention to reduce overall fall rate remains inconclusive. This paper aims to 1) synthesise current evidence and conceptual models of falls rehabilitation in Parkinson's in a narrative review; and based on this evidence 2) introduce the treatment protocol used in the falls prevention, multi-centre clinical trial 'PDSAFE'. Method: Search of four bibliographic databases using the terms ‘Parkinson*’ and ‘Fall*’ combined with each of the following; ‘Rehab*, Balanc*, Strength*, Strateg*and Exercis*' and a framework for narrative review was followed. 3557 papers were identified, 416 were selected for review. The majority report the impact of rehabilitation on isolated fall risk factors. Twelve directly measure the impact on overall fall rate. Discussion: Results were used to construct a narrative review with conceptual discussion based on the 'International Classification of Functioning’, leading to presentation of the 'PDSAFE' intervention protocol. Conclusion: Evidence suggests training single, fall risk factors may not affect overall fall rate. Combining with behavioural and strategy training in a functional, personalised multi-dimensional model, addressing all components of the ‘International Classification of Functioning’ is likely to provide a greater influence on falls reduction. 'PDSAFE' is a multi-dimensional, physiotherapist delivered, individually tailored, progressive, home-based programme. It is designed with a strong evidence based approach and illustrates a model for the clinical delivery of the conceptual theory discussed.This project was funded by the National Institute for Health Research Health Technologies Assessment programme (project number 10/57/21). VG is supported by the National Institute of Health Research Collaboration for Applied Health Research and Care South West Peninsula.

A multicentre, randomised controlled trial of PDSAFE, a physiotherapist-delivered fall prevention programme for people with Parkinson’s

This is the author accepted manuscript. The final version is available from BMJ Publishing Group via the DOI in this record.Objective: To estimate the effect of a physiotherapist-delivered fall-prevention programme for people with Parkinson’s (PwP). Methods: People at risk of falls with confirmed Parkinson’s were recruited to this multi-centre, pragmatic, investigator blind, individually randomised controlled trial with pre-specified sub-group analyses. 474 PwP (Hoehn and Yahr 1-4) were randomised: 238 allocated to a physiotherapy programme and 236 to control. All participants had routine care; the control group received a DVD about Parkinson’s and single advice session at trial completion. The intervention group (PDSAFE) had an individually tailored, progressive home-based fall-avoidance strategy training programme with balance and strengthening exercises. The primary outcome was risk of repeat-falling, collected by self-report monthly diaries, 0 to 6 months post-randomisation. Secondary outcomes included, Mini-BESTest for balance, chair stand test, Falls Efficacy, freezing of gait, health related quality of life (Euroqol EQ-5D), Geriatric Depression Scale, Physical Activity Scale for the Elderly and Parkinson’s disease Questionnaire, fractures and rate of near-falling. Results: Average age, 72 years and 266 (56%) were men. By 6 months 116 (55%) of the control group, and 125 (61.5%) of the intervention group reported repeat falls (controlled odds ratio 1.21, 95% confidence interval 0.74 to 1.98, P=0.447). Secondary sub-group analyses suggested a different response to the intervention between moderate and severe disease severity groups. Balance, falls efficacy and chair stand time improved with near-falls reduced in the intervention arm. Conclusion: PDSAFE did not reduce falling in this pragmatic trial of PwP. Other functional tasks improved and reduced fall rates were apparent among those with moderate disease.Department of HealthNational Institute for Health Research (NIHR

‘PDSAFE’ - a multi-dimensional model of falls-rehabilitation for people with Parkinson’s. A mixed methods analysis of therapists’ delivery and experience

This is the author accepted manuscript. The final version is available from Elsevier via the DOI in this recordObjective: To explore the clinical reasoning of physiotherapists using PDSAFE; according to disease severity and their experiences of treatment delivery in a large fall-prevention trial for people with Parkinson’s (PwP). Design: A descriptive study of delivering PDSAFE. Semi-structured interviews explored therapists’ experiences. Setting: A two-group, home-based, multi-centred, single-blinded, randomised controlled trial showed no overall effect on fall reduction between groups but demonstrated a significant secondary effect relating to disease severity with benefits to balance, falls efficacy and near-falls for all. Participants: Physiotherapists with a background in neurology and older-person rehabilitation were trained in the delivery of PDSAFE Intervention: A multi-dimensional, individually tailored and progressive, home-based programme. Results: Fifteen physiotherapists contributed to the 2587 intervention sessions from the PDSAFE trial and six of those physiotherapists took part in the interviews. The personalised intervention was reflected in the range of strategies and exercises prescribed. Most commonly prescribed fall-avoidance strategies were ‘Avoiding tripping’, ‘Turning’ and ‘Freezing Cues’ and all possible combinations of balance and strength training within the programme were selected. PwP with greater disease severity were more likely to have received less challenging strategies, balance and strengthening exercises than those with lower disease severity. Therapists considered the focus on fall events and fall avoidance strategies an improvement on ‘impairment only’ treatment. The presence of cognitive deficits, co-morbidities and dyskinesia were the most challenging aspects of delivering the intervention. Conclusion: Falls management for PwP is complex and compounded by the progressive nature of the condition. Physiotherapists both delivered and positively received PDSAFE.National Institute for Health Research (NIHR) Health Technology Programm

A Pilot study of the Sharing Risk Information Tool (ShaRIT) for Families with Hereditary Breast and Ovarian Cancer Syndrome

<p>Abstract</p> <p>Background</p> <p>Individuals who carry deleterious BRCA mutations face significantly elevated risks of breast, ovarian, and other cancers. These individuals are also responsible for informing relatives of their increased risk for carrying the family BRCA mutation. Few interventions have been developed to facilitate this family communication process.</p> <p>Methods</p> <p>We developed the Sharing Risk Information Tool (ShaRIT), a personalized educational intervention, to support BRCA carriers as they discuss BRCA positive results and their implications with relatives. We conducted a pilot study of 19 BRCA carriers identified through the University of California San Francisco Cancer Risk Program. Our study had two aims: 1) to assess the feasibility and acceptability of ShaRIT, and 2) describe characteristics associated with increased family communication and BRCA testing. Participants in our study were divided into two groups: those who had not received ShaRIT as part of their genetic counseling protocol (control group, n = 10) and those who received ShaRIT (n = 9).</p> <p>Results</p> <p>All 9 women who received ShaRIT reported that it was a useful resource. Characteristics associated with increased sharing and testing included: female gender, degree of relationship, and frequency of communication. Increased pedigree knowledge showed a trend toward higher rates of sharing.</p> <p>Conclusions</p> <p>Both participants and genetic counselors considered ShaRIT a well-received, comprehensive tool for disseminating individual risk information and clinical care guidelines to Hereditary Breast and Ovarian Cancer Syndrome families. Because of this, ShaRIT has been incorporated as standard of care at our institution. In the future we hope to evaluate the effects of ShaRIT on family communication and family testing in larger populations of BRCA positive families.</p

Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives

Cancer genetic counselees receive individualized information regarding heightened risks and medical recommendations which is also relevant for their at-risk relatives. Unfortunately, counselees often insufficiently inform these relatives. We designed an intervention aimed at improving counselees' knowledge regarding which at-risk relatives to inform and what information to disclose, their motivation to disclose, and their self-efficacy. The intervention, offered by telephone by trained psychosocial workers, is based on the principles of Motivational Interviewing. Phase 1 of the intervention covers agenda setting, exploration, and evaluation, and phase 2 includes information provision, enhancing motivation and self-efficacy, and brainstorming for solutions to disseminate information within the family. Fidelity and acceptability of the intervention were assessed using recordings of intervention sessions and by counselee self-report. A total of 144 counselees participated. Psychosocial workers (n = 5) delivered the intervention largely as intended. Counselees highly appreciated the content of the intervention and the psychosocial workers who delivered the intervention. In the sessions, psychosocial workers provided additional and/or corrective information, and brainstorming for solutions was performed in 70 %. These results indicate that this intervention is feasible and warrants testing in clinical practice. For this, a randomized controlled trial is currently in progress to test the intervention's efficacy

Limitations and pitfalls of using family letters to communicate genetic risk: a qualitative study with patients and healthcare professionals

European genetic testing guidelines recommend that healthcare professionals (HCPs) discuss the familial implications of any test with a patient and offer written material to help them share the information with family members. Giving patients these “family letters” to alert any relatives of their risk has become part of standard practice and has gone relatively unquestioned over the years. Communication with at-risk relatives will become an increasingly pressing issue as mainstream and routine practice incorporates broad genome tests and as the number of findings potentially relevant to relatives increases. This study therefore explores problems around the use of family letters to communicate about genetic risk. We conducted 16 focus groups with 80 HCPs, and 35 interviews with patients, recruited from across the UK. Data were analyzed thematically and we constructed four themes: 1) HCPs writing family letters: how to write them and why?, 2) Patients’ issues with handing out family letters, 3) Dissemination becomes an uncontrolled form of communication, and 4) When the relative has the letter, is the patient’s and HCP’s duty discharged? We conclude by suggesting alternative and supplementary methods of communication, for example through digital tools, and propose that in comparison to communication by family letter, direct contact by HCPs might be a more appropriate and successful option

Accuracy of recall of information about a cancer-predisposing BRCA1/2 gene mutation among patients and relatives

This observational study aimed to (i) compare the accuracy of information recalled by patients and relatives following genetic counselling about a newly identified BRCA1/2 mutation, (ii) identify differences in accuracy of information about genetics and hereditary cancer and (iii) investigate whether accuracy among relatives improved when information was provided directly by genetics health professionals. Semistructured interviews following results from consultations with 10 breast/ovarian cancer patients and 22 relatives were audio-recorded and transcribed. Information provided by the genetics health professional was tracked through the families and coded for accuracy. Accuracy was analysed using the Wilcoxon Signed-Ranks test. Sources of information were tested using Spearman’s rank-order correlation coefficient. Fifty-three percent of the information recalled by patients was accurate. Accuracy of recall among relatives was significantly lower than that among patients (P=0.017). Both groups recalled a lower proportion of information about hereditary cancer than about genetics (P=0.005). Relatives who learnt the information from the patient alone recalled significantly less accurate information than those informed directly by genetics health professionals (P=0.001). Following genetic counselling about a BRCA1/2 mutation, accuracy of recall was low among patients and relatives, particularly about hereditary cancer. Multiple sources of information, including direct contact with genetics health professionals, may improve the accuracy of information among relatives

Family Communication in Inherited Cardiovascular Conditions in Ireland

Over 100,000 individuals living in Ireland carry a mutated gene for an inherited cardiac condition (ICC), most of which demonstrate an autosomal dominant pattern of inheritance. First-degree relatives of individuals with these mutations are at a 50 % risk of being a carrier: disclosing genetic information to family members can be complex. This study explored how families living in Ireland communicate genetic information about ICCs and looked at the challenges of communicating information, factors that may affect communication and what influence this had on family relationships. Face to face interviews were conducted with nine participants using an approved topic guide and results analysed using thematic analysis. The participants disclosed that responsibility to future generations, gender, proximity and lack of contact all played a role in family communication. The media was cited as a source of information about genetic information and knowledge of genetic information tended to have a positive effect on families. Results from this study indicate that individuals are willing to inform family members, particularly when there are children and grandchildren at risk, and different strategies are utilised. Furthermore, understanding of genetics is partially regulated not only by their families, but by the way society handles information. Therefore, genetic health professionals should take into account the familial influence on individuals and their decision to attend genetic services, and also that of the media.postprin

Sediment source fingerprinting: benchmarking recent outputs, remaining challenges and emerging themes

Abstract: Purpose: This review of sediment source fingerprinting assesses the current state-of-the-art, remaining challenges and emerging themes. It combines inputs from international scientists either with track records in the approach or with expertise relevant to progressing the science. Methods: Web of Science and Google Scholar were used to review published papers spanning the period 2013–2019, inclusive, to confirm publication trends in quantities of papers by study area country and the types of tracers used. The most recent (2018–2019, inclusive) papers were also benchmarked using a methodological decision-tree published in 2017. Scope: Areas requiring further research and international consensus on methodological detail are reviewed, and these comprise spatial variability in tracers and corresponding sampling implications for end-members, temporal variability in tracers and sampling implications for end-members and target sediment, tracer conservation and knowledge-based pre-selection, the physico-chemical basis for source discrimination and dissemination of fingerprinting results to stakeholders. Emerging themes are also discussed: novel tracers, concentration-dependence for biomarkers, combining sediment fingerprinting and age-dating, applications to sediment-bound pollutants, incorporation of supportive spatial information to augment discrimination and modelling, aeolian sediment source fingerprinting, integration with process-based models and development of open-access software tools for data processing. Conclusions: The popularity of sediment source fingerprinting continues on an upward trend globally, but with this growth comes issues surrounding lack of standardisation and procedural diversity. Nonetheless, the last 2 years have also evidenced growing uptake of critical requirements for robust applications and this review is intended to signpost investigators, both old and new, towards these benchmarks and remaining research challenges for, and emerging options for different applications of, the fingerprinting approach