Making Research Outputs Accessible to People with Kidney Disease: Implementing the Dialysis Decision Aid.

Purpose: To assess the impact of implementation activities on decision aid use by people making dialysis decisions. The Dialysis Decision Aid booklet was launched by a UK kidney disease charity when the research assessing its acceptability to patients with established kidney disease and predialysis services ended. Method(s): observational study tracking use of decision aid by stakeholders. From September 2014, the researchers and charity team carried out activities known to lower barriers and facilitate use of patient decision aids. The decision aid’s use was monitored. Activities focused on a) raising awareness of the resource across stakeholder groups (e.g. distribution to clinical directors, at conferences and staff training), b) enabling accessibility (e.g. open-access on-line, post and via services; free), c) ensuring acceptability to service providers and users (e.g. research findings), d) encouraging motivation to use a decision aid (e.g. endorsement by professional organisations). Result(s): during its first year (2015), the booklet was endorsed best practice for predialysis education by four medical professional organisations, two UK and two international; it was translated by one professional organisation for use in Spain, and one patient organisation for use in Italy; 350 booklets were requested directly by staff, carers and patients, and 450 downloaded via web-pages in the UK; nine UK renal units bulk ordered copies for their usual predialysis education resources; the paper describing its development and acceptability to staff and patients was accepted for publication in a peer-reviewed journal. Staff and patients using the decision aid comment it provides a “particularly patient friendly”, well written, accurate, balanced and comprehensive resource supporting peoples’ treatment decision making within, and/or independently of, predialysis programmes. Conclusion(s): people accessing this decision aid find it enables them to think differently about dialysis treatment decisions in the context of their life, or that of their patient. It meets clinical guidelines enabling staff to support patients making informed decisions between dialysis options. However, there is practice variation in its adoption across services in the UK. This observational method is not able to capture data from those staff and patients who do not use an evidence-based, decision aid. There is a need for further research evaluating variations in use and its impact on both care quality and service outcomes

Investigating the causes of patient anxiety at induction of anaesthesia: A mixed methods study

Aim: To investigate patient anxiety at anaesthetic induction and whether this is affected by anaesthetic room interventions. Methods: A mixed methods study was carried out: pre-induction interventions were directly observed. Patient anxiety was assessed quantitatively with cardiovascular changes, the visual analogue scale and the state-trait anxiety inventory. Interviews allowed qualitative assessment. Results: Patient-reported anxiety did not correlate with cardiovascular changes. Anaesthetic room interventions were not predictive of anxiety. Postoperative interviews identified five sources of anxiety, mostly related to preparation for surgery. Staff responses to anxiety were also highlighted. Discussion: Patient-reported anxiety and its biological response are not correlated. Pre-induction interventions do not contribute to anxiety. Anxiety levels at induction are similar to or lower than earlier in the preoperative period. Conclusions: On induction of anaesthesia, patients have little control over their situation but are actively reassured and distracted by theatre staff. Our data suggest staff are good at this. More could still be done to reduce preoperative sources of anxiety

Describing psychological and behavioural problems in Omani young people: reliability of the Self-reported Strength and Difficulties Questionnaire (SDQ) in Oman

Aim: The aim of this study is to assess the reliability of the Strength and Difficulties Questionnaire (SDQ), including the impact subscale, when completed by school-age children in Oman. The SDQ is an essential tool for screening psychological and behavioural problems in school children but has only been partially tested in an Omani sample. Method: A cross sectional study. Children aged 11-16 from one private and four public schools in two areas of Oman (Muscat; Buraimi) completed the SDQ. Cronbachs alpha and person-product correlations were used to assess internal, and test-re-rest reliability. Results: 377/422 children completed the SDQ, 138 completed the re-test. The Total Difficulties (T-SDQ) score was normally distributed with 78% scoring normal, 13% borderline and 9% clinical significant scores. Girls’ scores were significantly higher than boys in T-SDQ and in emotional and prosocial subscales. Internal reliability for the T-SDQ was (Cronbach alpha = 0.72; Person Product-moment coefficient r=0.71; P<0.001), the impact subscale = 0.68 and varied between 0.26 and 0.60 for the subscales. Conclusion: The self-reported SDQ using T-SDQ score is a reliable screening tool for psychological and behavioural problems for Omani children. The T-SDQ can be disseminated within private and public-school systems. Having a reliable screening tool for identifying children with psychological and behavioural problems is a significant step to improving mental health pathways of care and outcomes in Oman

Dialysis vs conservative management decision aid: a study protocol

When patients' kidney function deteriorates to chronic kidney disease stage 5, services offer patients a choice for the next phase of their care. Renal replacement therapies may not have survival benefits, and conservative management may have less treatment burden for older patients with associated comorbidities or frailty. Anna E Winterbottom et al discuss the development of a patient decision aid

Critical review of leaflets about conservative management used in UK renal services

Background: Written information supplements nurse‐led education about treatment options. It is unclear if this information enhances patients’ reasoning about conservative management (CM) and renal replacement therapy decisions. Aim: This study describes a critical review of resources U.K. renal staff use when providing CM options to people with Established Kidney Disease (EKD) during usual pre‐dialysis education. Design: A survey using mixed methods identified and critically analysed leaflets about CM. Participants & measurements: All 72 renal units in the United Kingdom received an 11‐item questionnaire to elicit how CM education is delivered, satisfaction and/or needs with patient resources and staff training. Copies of leaflets were requested. A coding frame was utilised to produce a quality score for each leaflet. Results: Fifty‐four (75%) units participated. Patients discuss CM with a nephrologist (98%) or nurse (100%). Eighteen leaflets were reviewed, mean scores were 8.44 out of 12 (range 5–12, SD = 2.49) for information presentation; 3.50 out of 6 (range 0–6, SD = 1.58) for inclusion of information known to support shared decision‐making and 2.28 out of 6 (range 1–4, SD = 0.96) for presenting non‐biased information. Conclusions: Nurses preferred communicating via face‐to‐face contact with patients and/or families because of the emotional consequences and complexity of planning treatment for the next stage of a person's worsening kidney disease. Conversations were supplemented with written information; 66% of which were produced locally. Staff perceived a need for using leaflets, and spend time and resources developing them to support their services. However, no leaflets included the components needed to help people reason about conservative care and renal replacement therapy options during EKD education consultations

Patient perspective on decisions to switch disease-modifying treatments in relapsing-remitting multiple sclerosis

Background: There are now large cohorts of people with relapsing-remitting multiple sclerosis (pwRRMS) who have taken several Disease-Modifying Treatments (DMTs). Studies about switching DMTs mostly focus on clinical outcomes rather than patients' decision-making. Neurologists are now required to support decisions at various times during the relapsing disease course and they do so with concerns about DMTs risks. This qualitative study investigates how pwRRMS weigh up the pros and cons of DMTs, focusing on perceptions of effectiveness and risks when new treatments are considered. / Objective: To increase understanding of people's experiences of decision-making when switching DMTs. / Methods: 30 semi-structured interviews were conducted with pwRRMS in England. 16 participants had switched DMT and their experiences were compared with those who had only taken one DMT. Interviews were analysed thematically to answer: what main factors influence people's decision-making to switch DMTs and why? / Results: Of the 16 participants with experience of switching DMT, eight had taken two or more DMTs; eight had taken three or more. Two was the DMT median. This study demonstrated that despite the term "switching" implying that similar treatments are inter-changeable, for pwRRMS taking new treatments involves different emotions, routines, risks, prognosis and communication experiences. Two meta themes identified were: 1) A distinctive, rapid and emotional decision-making process where old emotions related to MS prognosis are revisited. 2) Switching has a different impact on communication for escalation or de-escalation processes. / Conclusion: Switching DMT involves different routines, risks, prognosis and communication experiences. These decisions are emotionally difficult because of the fear about transitioning to secondary progressive MS, and DMT effectiveness uncertainty. Patient centred decision aids should include information about first and consecutive treatment decisions

DECISION AIDS’ EFFICACY TO SUPPORT WOMEN’S FERTILITY PRESERVATION CHOICES BEFORE CANCER TREATMENT: AN ENVIRONMENTAL SCAN.

DECISION AIDS’ EFFICACY TO SUPPORT WOMEN AND YOUNG ADULT'S FERTILITY PRESERVATION CHOICES BEFORE CANCER TREATMENT: AN ENVIRONMENTAL SCAN. Neda Mahmoodi, Leeds Institute of Health Sciences, University of Leeds Hilary L Bekker, Leeds Institute of Health Sciences, University of Leeds Natalie V King, Leeds Institute of Health Sciences, University of Leeds Jane Hughes, Faculty of Health & Social Sciences, Leeds Beckett University Georgina Jones, Faculty of Health & Social Sciences, Leeds Beckett University On behalf of the Cancer, Fertility and Me research group. Introduction To evaluate patient information and clinical guidelines developed to support women (16+ years) making fertility preservation (FP) choices before cancer treatment. Some cancer treatments increase women’s chance of infertility, oncology and fertility services provide information preparing women for FP choices whilst managing cancer, yet some women feel unsupported. Method A systematic environmental scan of open-access decision support resources were carried out (December 2015). Three data sources were searched: internet (Google): healthcare decision support repositories (Decision Aids Library Inventory; Trips; NHS Evidence; National Guidelines Clearinghouse; Clinical Trials); shared decision making experts (SHARED-L distribution list). Inclusion criteria were: women receiving cancer treatment; cancer treatment options provided; FP options provided; statements supporting women’s decision making. The International Patient Decision Aid Standards (IPDAS) criteria informed the data extraction sheet developed to elicit information about resources’ content. Results 116 patient decision aids (DAs) and 42 clinical guidelines were identified; 24 DAs met the inclusion criteria. Resources varied in amount (2-90 pages) and type (pdf -App) of information. A third stated the resource’s purpose was to support women’s decision making. Most aimed to inform women for FP procedures; and provided questions for women to engage with health professionals rather than supporting deliberative thinking about which options best fit their life now, and after cancer treatment. About 20% adhered to IPDAS guidance. Discussion Resources provided information about FP and infertility treatment options. A DA supporting women’s deliberation about FP, or not, when receiving treatment for any cancer is likely to meet UK and international service needs

Identification and appraisal of outcome measures used to evaluate hypodontia care: A systematic review

Introduction: Identification and appraisal of the outcome measures that have been used to evaluate hypodontia treatment and deliver services are essential for improving care. A lack of alignment between outcomes and patient values can limit the scope for patient-centered care. Our objectives were to identify and appraise the outcomes selected to evaluate hypodontia care. Methods: Data sources included 10 electronic databases and grey literature, searched using terms for hypodontia and its treatment methods. Study eligibility included mixed study designs to ensure comprehensive identification of outcomes, excluding case reports and case series with fewer than 10 participants and nonsystematic reviews. Participants and interventions involved people with hypodontia receiving any dental treatment to manage their hypodontia. Simulated treatment, purely laboratory-based interventions, and future treatments still in development were excluded. Research outcomes were identified and synthesised into 4 categories: clinical indicators, and patient-reported, clinician-reported, and lay-reported outcomes. No synthesis of efficacy data was planned, and consequently no methodologic quality appraisal of the studies was undertaken. Results: The search identified 497 abstracts, from which 106 eligible articles were retrieved in full. Fifty-six studies and 8 quality-improvement reports were included. Clinical indicators were reported in 49 studies (88%) including appearance, function, dental health, treatment longevity, treatment success and service delivery. Patient-reported outcomes were given in 22 studies (39%) including oral health-related quality of life, appearance, function, symptoms of temporomandibular dysfunction, and patient experience. Clinician-reported outcomes were limited to appearance. Variability was seen in the tools used for measuring outcomes. Conclusions: There is a lack of rationale and consistency in the selection of outcome measures used to evaluate hypodontia care. Outcomes are largely clinician and researcher-driven with little evidence of their relevance to patients. There was a paucity of outcomes measuring access to care, quality of care, and cost. Evidence from hypodontia research is clinician-focused and likely to have limited value to support patients during decision making. Attempts to synthesise the evidence base for translation into practice will be challenging. There is a need for a core outcomes set with a patient-centric approach to drive improvements in health services

How to engage patient partners in health service research: a scoping review protocol

Background The patients’ and the carers’ roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out with or by patient partners is an increasingly accepted component of health service research in many countries, but how researchers can best approach engaging patient partners in the research process is still not clear. There is a need for guidance to support researchers when engaging patient partners and assess how such engagement impacts on research outputs. The aim of this paper is to present a protocol for a scoping review of published literature on how to engage patient partners effectively in the research process. Investigating this aim implies examining: a) how to engage patient partners in the research process; and b) what impact such engagement has on research outputs. This scoping review protocol is the first to examine how to engage patient partners effectively across different diseases and research areas. Methods A scoping review using a systematic process informed by Arksey and O’Malley’s framework will be carried out across six electronic databases using the terms ‘patient participation’, ‘community participation’, ‘research personnel’, ‘patient and public involvement’ and ‘patient partner’. We will include published reviews concerning engagement of patient partners in the research process in healthcare settings, and exclude studies assessing engagement in treatment and healthcare. Two reviewers will screen the titles and abstracts of articles independently for inclusion, and extract data from articles that meet the inclusion criteria. Where there is disagreement, a third reviewer will be consulted to facilitate consensus. The data elicited will include: author and study characteristics; research aims and findings; description of patient engagement in the research process; and assessment impact. Descriptive data and narrative analysis will synthesize findings. Discussion To understand how to engage patient partners effectively in the research process, the impact of such engagement must be taken into consideration to give a qualified suggestion for future guidance. We hope this review will raise awareness of which common elements constitute effective engagement of patient partners in the research process