S Blackburn

An evaluation of second and third generation telecare services in older people's housing

Summary In a controlled study of older people living in sheltered housing (retirement housing), 24 people provided with telecare were compared with a control group of 28 people. The intervention consisted of second generation telecare equipment, such as automatic flood or falls detectors, a third generation lifestyle reassurance system and an Internet café. After a 12-month monitoring period, there was no noticeable change in the fear of falling. There was no significant difference for eight of the nine SF-36 domains. However, the Social Functioning domain showed a significant difference (P = 0.049), with scores 8% higher in the intervention group, suggesting a beneficial effect of telecare. Positive trends were also evident in areas such as an increase in the length of time spent out of the home, improved feelings of safety during the day and night, and a reduction in the fear of crime. The Internet café was used by 25% of people for at least 20 min per week. The results suggest that second generation telecare systems and Internet facilities could be more widely used in service delivery, but that lifestyle reassurance requires further development.

A systematic review of digital interactive television systems and their applications in the health and social care fields.

We conducted a systematic review of the applications and technical features of digital interactive television (DITV) in the health and social care fields. The Web of Knowledge and IEEE Xplore databases were searched for articles published between January 2000 and March 2010 which related to DITV systems facilitating the communication of information to/from an individuals home with either a health or social care application. Out of 1679 articles retrieved, 42 met the inclusion criteria and were selected for review. An additional 20 articles were obtained from online grey literature sources. Twenty-five DITV systems operating in health and social care were identified, including seven commercial systems. The most common applications were related to health care, such as vital signs monitoring (68% of systems) and health information or advice (56% of systems). The most common technical features of DITV systems were two-way communication (88%), medical peripherals (68%), on-screen messaging (48%) and video communication (36%). Digital interactive television has the potential to deliver health and social care to people in their own homes. However, the requirement for a high-bandwidth communications infrastructure, the usability of the systems, their level of personalisation and the lack of evidence regarding clinical and cost-effectiveness will all need to be addressed if this approach is to flourish.

Patient and public involvement in primary care research - an example of ensuring its sustainability

BackgroundThe international literature on patient and public involvement (PPI) in research covers a wide range of issues, including active lay involvement throughout the research cycle; roles that patients/public can play; assessing impact of PPI and recommendations for good PPI practice. One area of investigation that is less developed is the sustainability and impact of PPI beyond involvement in time-limited research projects.MethodsThis paper focuses on the issues of sustainability, the importance of institutional leadership and the creation of a robust infrastructure in order to achieve long-term and wide-ranging PPI in research strategy and programmes.ResultsWe use the case of a Primary Care Research Centre to provide a historical account of the evolution of PPI in the Centre and identified a number of key conceptual issues regarding infrastructure, resource allocation, working methods, roles and relationships.ConclusionsThe paper concludes about the more general applicability of the Centre’s model for the long-term sustainability of PPI in research.

Evaluation of the Post Stroke Checklist: a pilot study in the United Kingdom and Singapore

Background There is currently no standardized process for long-term follow-up care. As a result, management of post-stroke care varies greatly, and the needs of stroke survivors are not fully addressed. The Post Stroke Checklist was developed by the Global Stroke Community Advisory Panel as a means of standardizing long-term stroke care. Since its development, the Post Stroke Checklist has gained international recognition from various stroke networks and is endorsed by the World Stroke Organization to support improved stroke survivor follow-up and care. Aims The aim of this study was to evaluate the feasibility and usefulness of the Post Stroke Checklist in clinical practice and assess its relevance to stroke survivors in pilot studies in the United Kingdom and Singapore. Methods The Post Stroke Checklist was administered to stroke survivors in the United Kingdom (n = 42) and Singapore (n = 100) by clinicians. To assess the feasibility of the Post Stroke Checklist in clinical practice, an independent researcher observed the assessment and made notes relating to the patient–clinician interaction and their interpretations of the Post Stroke Checklist items. Patient and clinician satisfaction with the Post Stroke Checklist was assessed by three questions, responded to on a 0–10 numerical rating scale. Clinicians also completed a Pragmatic Face and Content Validity test to evaluate their overall impressions of the Post Stroke Checklist. In the United Kingdom, a subset of patients (n = 14) took part in a concept elicitation interview prior to being administered the Post Stroke Checklist, followed by a cognitive debriefing interview to assess relevance and comprehension of the Post Stroke Checklist. Results The Post Stroke Checklist identified frequently reported problems for stroke survivors including cognition (reported by 47·2% of patients), mood (43·7%), and life after stroke (38%). An average of 3·2 problems per patient was identified across both countries (range 0–10). An average of 5 and 2·6 problems per patient were identified in the United Kingdom and Singapore, respectively. The average time taken to administer the Post Stroke Checklist was 17 mins (standard deviation 7·5) in Singapore and 13 mins (standard deviation 7·6) in the United Kingdom. Satisfaction ratings were high for patients (8·6/10) and clinicians (7·7/10), and clinician feedback via the Pragmatic Face and Content Validity test indicated that the Post Stroke Checklist is ‘useful’, ‘informative’, and ‘exhaustive’. All concepts measured by the Post Stroke Checklist were spontaneously discussed by patients during the concept elicitation interviews, suggesting that the Post Stroke Checklist is relevant to stroke survivors. Cognitive debriefing data indicated that the items were generally well understood and relevant to stroke. Minor revisions were made to the Post Stroke Checklist based on patient feedback. Conclusions The findings suggest that the Post Stroke Checklist is a feasible and useful measure for identifying long term stroke care needs in a clinical practice setting. Pilot testing indicated that the Post Stroke Checklist is able to identify a wide range of unmet needs, and patient and clinician feedback indicated a high level of satisfaction with the Post Stroke Checklist assessment. The items were generally well understood and considered relevant to stroke survivors, indicating the Post Stroke Checklist is a feasible, useful, and relevant measure of poststroke care.

Sustaining patient and public involvement in research: A case study of a research centre

The literature on patient and public involvement (PPI) in research covers a wide range of topics. However, one area of investigation that appears under developed is the sustainability and impact of PPI beyond involvement in time-limited research projects. This paper presents a case study of PPI development in one primary care research centre in England, and its approach to making this sustainable using documentary sources and material from a formal evaluation. We provide narrative accounts of the set-up, operation and main processes of PPI, and its perceived impact. PPI requires a long-term perspective with participation and trust growing over time, and both users and researchers learning what approaches work best. PPI is a complex interplay of clarity of purpose, defined roles and relationships, organised support (paid PPI staff) and a well-funded infrastructure. ‘Soft systems’ are equally important such as flexible and informal approaches to meetings, adapting timetables and environments to meet the needs of lay members and to create spaces for relationships to develop between researchers and lay members that are based on mutual trust and respect. This case study highlights that the right combination of ethos, flexible working practices, leadership, and secure funding goes a long way to embedding PPI beyond ad hoc involvement. This allows PPI in research to be integrated in the infrastructure and sustainable.

Development and initial cohort validation of the Arthritis Research UK Musculoskeletal Health Questionnaire (MSK-HQ) for use across musculoskeletal care pathways

Objectives Current musculoskeletal outcome tools are fragmented across different healthcare settings and conditions. Our objectives were to develop and validate a single musculoskeletal outcome measure for use throughout the pathway and patients with different musculoskeletal conditions: the Arthritis Research UK Musculoskeletal Health Questionnaire (MSK-HQ). Setting A consensus workshop with stakeholders from across the musculoskeletal community, workshops and individual interviews with a broad mix of musculoskeletal patients identified and prioritised outcomes for MSK-HQ inclusion. Initial psychometric validation was conducted in four cohorts from community physiotherapy, and secondary care orthopaedic hip, knee and shoulder clinics. Participants Stakeholders (n=29) included primary care, physiotherapy, orthopaedic and rheumatology patients (n=8); general practitioners, physiotherapists, orthopaedists, rheumatologists and pain specialists (n=7), patient and professional national body representatives (n=10), and researchers (n=4). The four validation cohorts included 570 participants (n=210 physiotherapy, n=150 hip, n=150 knee, n=60 shoulder patients). Outcome measures Outcomes included the MSK-HQs acceptability, feasibility, comprehension, readability and responder burden. The validation cohort outcomes were the MSK-HQs completion rate, test–retest reliability and convergent validity with reference standards (EQ-5D-5L, Oxford Hip, Knee, Shoulder Scores, and the Keele MSK-PROM). Results Musculoskeletal domains prioritised were pain severity, physical function, work interference, social interference, sleep, fatigue, emotional health, physical activity, independence, understanding, confidence to self-manage and overall impact. Patients reported MSK-HQ items to be ‘highly relevant’ and ‘easy to understand’. Completion rates were high (94.2%), with scores normally distributed, and no floor/ceiling effects. Test–retest reliability was excellent, and convergent validity was strong (correlations 0.81–0.88). Conclusions A new musculoskeletal outcome measure has been developed through a coproduction process with patients to capture prioritised outcomes for use throughout the pathway and with different musculoskeletal conditions. Four validation cohorts found that the MSK-HQ had high completion rates, excellent test–retest reliability and strong convergent validity with reference standards. Further validation studies are ongoing, including a cohort with rheumatoid/inflammatory arthritis.

User requirements for an ICT‐based system to provide care, support and information access for older people in the community

Purpose – This paper seeks to identify the user requirements for an Information and Communication Technology (ICT) based system to deliver care, support and information services to older people in the community.Design/methodology/approach – A structured, mixed methods approach incorporating workshops, systematic literature reviews, surveys, and focus groups gathered user needs prior to a prototype being developed. This was then tested with users and their feedback used in further iterations of the product.Findings – In total, five main user requirement themes were identified: information access; communication; self‐care; accessibility; and personalisation of services.Practical implications – Details are provided of the user requirements for a health and care system to remotely deliver support. Additionally, the value of utilising a range of requirements gathering tools and prototyping is discussed.Originality/value – Too often technology systems are developed which do not meet actual need. This paper repo...

OP0133 Differences in Physician-Reported and DAS28-Based Assessment of Disease Remission Among Patients with Rheumatoid Arthritis (RA) in Clinical Practices

Background The ultimate goal of RA treatment is to achieve disease remission. Studies have shown that objective, measure-based treatment decision-making leads to improved patient outcomes. In addition, the National Quality Forum (NQF) recently endorsed three measures for RA, including assessment of disease activity using a standardized tool. However, in clinical practice physicians may still rely on subjective assessment of disease activity. Objectives To compare physician-reported and DAS28-based clinical assessments of RA disease remission. Methods Data were drawn from the Adelphi RA-DSP, a cross-sectional survey of United States rheumatologists and their RA patients between January and March 2014. Clinical remission status (DAS28 ESR <2.6) was compared with physician-reported remission and categorized as “match”, “physician over-reported” (physician-reported remission, but no-remission by DAS28 criteria) and “physician under-reported” (physician-reported no-remission, but remission by DAS28 criteria). Multinomial logistic regressions were conducted to evaluate patient and physician characteristics associated with differences between DAS28-based and physician-reported remission. Results Included in the analysis were 531 RA patients (75% female, mean age 56.4 years, 7.7 years since RA diagnosis, 53% treated with biologic) in the care of 78 rheumatologists (31% female, 37% practice only in office). 56% of physicians reported using only subjective criteria to assess remission; 30% of patients were evaluated using a standardized disease activity measure during last visit. While physicians reported 50% of patients were in remission, 32% were in remission by DAS28 criteria. Remission status was over-reported by physicians in 25% and underreported in 7% of patients. Regression analyses indicated that physician over-reporting was significantly higher among patients treated with biologics (Relative Risk Ratio (RRR)=2.01, P=0.003), those in the care of physicians with high RA workload (RRR=2.51, P=0.011), and patients considered by their physicians to have “satisfactory” RA control (RRR=6.09, P<0.001) or with average general health level (RRR=1.87, P=0.049); but significantly lower for patients with medium to high current pain level (RRR=0.23, P=0.004) or considered by their physicians to be highly involved in treatment (RRR=0.60, P=0.035). Physician under-reporting was significantly higher among obese patients (RRR=2.95, P=0.002), patients with average general health level (RRR=2.03, P=0.029), and those with more than 5 tender or swollen joints (RRR=2.72, P=0.019), but significantly lower among patients with medium to high current pain level (RRR=0.18, P=0.004) or those who saw physicians with high RA workload (RRR=0.43, P=0.029). Conclusions This study points out the need to increase the use of standardized measures of RA disease activity, and ensure consistency of use across clinical care. Addressing these gaps in care may help optimize treatment decisions, reduce variability in delivery of patient care and ultimately improve RA patient outcomes. Disclosure of Interest W. Wei Shareholder of: Sanofi, Employee of: Sanofi, C. Chen: None declared, E. Sullivan: None declared, S. Blackburn: None declared, J. Curtis Grant/research support from: Roche/Genentech, UCB, Janssen, CORRONA, Amgen, Pfizer, BMS, Crescendo, AbbVie, Consultant for: Roche/Genentech, UCB, Janssen, CORRONA, Amgen, Pfizer, BMS, Crescendo, AbbVie

The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study

Plain English summaryIn the UK, more patients go to primary care than other parts of the health service. Therefore it is important for research into primary care to include the insights and views of people who receive these services. To explore the extent, quality and impact of patient and public involvement (PPI) in primary care research, we examined documents of 200 projects and surveyed 191 researchers.We found that about half of studies included PPI to develop research ideas and during the study itself. Common activities included designing study materials, advising on methods, and managing the research. Some studies did not undertake the PPI activities initially planned and funded for. PPI varied by study design, health condition and study population. We found pockets of good practice: having a PPI budget, supporting PPI contributors, and PPI informing recruitment issues. However, good practice was lacking in other areas. Few projects offered PPI contributors training, used PPI to develop information for participants about study progress and included PPI to advise on publishing findings.Researchers reported beneficial impacts of PPI. Most impact was reported when the approach to PPI included more indicators of good practice. The main cost of PPI for researchers was their time. Many reported difficulties providing information about PPI.In partnership with PPI contributors, we have used these findings to develop:a new Cost and Consequences Framework for PPI highlighting financial and non-financial costs, benefits and harms of PPIFifteen co-produced recommendations to improve the practice and delivery of PPI.AbstractBackground: To improve the lives of patients in primary care requires the involvement of service users in primary care research. We aimed to explore the extent, quality and impact of patient and public involvement (PPI) in primary care research.Methods: We extracted information about PPI from grant applications, reports and an electronic survey of researchers of studies funded by the NIHR School for Primary Care Research (SPCR). We applied recognised quality indicators to assess the quality of PPI and assessed its impact on research.Results: We examined 200 grant applications and reports of 181 projects. PPI was evident in the development of 47 (24%) grant applications. 113 (57%) grant applications included plans for PPI during the study, mostly in study design, oversight, and dissemination. PPI during projects was reported for 83 (46%) projects, including designing study materials and managing the research. We identified inconsistencies between planned and reported PPI. PPI varied by study design, health condition and study population.Of 46 (24%) of 191 questionnaires completed, 15 reported PPI activity. Several projects showed best practice according to guidelines, in terms of having a PPI budget, supporting PPI contributors, and PPI informing recruitment issues. However few projects offered PPI contributors training, used PPI to develop information for participants about study progress, and had PPI in advising on dissemination.Beneficial impacts of PPI in designing studies and writing participant information was frequently reported. Less impact was reported on developing funding applications, managing or carrying out the research. The main cost of PPI for researchers was their time. Many researchers found it difficult to provide information about PPI activities.Our findings informed:a new Cost and Consequences Framework for PPI in primary care research highlighting financial and non-financial costs, plus the benefits and harms of PPIFifteen co-produced recommendations to improve PPI in research and within the SPCR.Conclusions: The extent, quality and impact of PPI in primary care research is inconsistent across research design and topics. Pockets of good practice were identified making a positive impact on research. The new Cost and Consequences Framework may help others assess the impact of PPI.

Patient involvement vs. patient participation in qualitative research in the development of PROMs

I’m writing in response to a recent article published in HEX: Wiering et al. I read this article with great deal of interest, given the title and my interest in patient involvement in research and PROMs. However, I felt a little concerned that the article seemed to combine ‘patient involvement’ in the form of qualitative research to develop PROMs and, to a lesser scale, patient involvement as active involvement in research working alongside the PROM development team. However, little detail was provided in the article on the latter other than a few studies with ‘patient involvement in developing the domains or framework’ (although it is unclear exactly what this involvement entailed). The authors are correct to state that the views of patients are key to developing PROMs and rightly cited the FDA regulatory requirement for qualitative research with patients to develop PROMs for medical product development and regulatory claims. This guideline advocates the use of (i) open-ended concept elicitation interviews to establish the key concepts important and relevant to patients for inclusion in a conceptual model and framework forming the basis of the PROM content, and (ii) cognitive interviews with patients to confirm the face and content validity of a draft PROM. However, there is a key role for patients to be involved in the research and PROM development process that seems to be missing from this paper, or at least not emphasized enough. For PROM development, patients can have parallel, but notably different roles: (i) as participants in qualitative research to establish the content and confirm the content/face validity of PROMs and (ii) as active members of the research team working collaboratively in all aspects of the PROM development to ‘enhance the quality, relevance and acceptability of PROMs’. The second role may include involvement in a whole range of activities, such as: