Using the MRC Framework for Complex Interventions to Develop Clinical Decision Support: A Case Study.

The Medical Research Council (MRC) framework for complex interventions provides useful guidance to assist with the development and evaluation of health technology interventions such as decision support. In this paper we briefly summarise a project that focused on designing a decision support intervention to assist with the recognition, assessment and management of pain in patients with dementia in an acute hospital setting. We reflect on our experience of using the MRC framework to guide our study design, and highlight the importance of considering decision support interventions as complex interventions

Using qualitative research to overcome the shortcomings of systematic reviews when designing of a self-management intervention for advanced cancer pain

Objectives: To identify the key components for a self-management intervention for advanced cancer pain using evidence drawn from systematic reviews of complex interventions and syntheses of qualitative research. Methods: Evidence from up-to-date systematic reviews was prioritised. Searches were initially undertaken to identify systematic reviews of effectiveness in Cinahl, Medline, Embase, PsycInfo and the Cochrane Database of Systematic Reviews from 2009-June 2014, using validated search terms. Subsequent searches to identify qualitative systematic reviews were undertaken in Cinahl, Medline, Embase, and PsycInfo from 2009- January 2015. The results of the two sets of reviews were integrated using methods based on constant comparative techniques. Results: Four systematic reviews examining interventions for the self-management of advanced cancer pain were identified. Whilst each review recommended some attributes of a pain management intervention, it was not possible to determine essential key components. Subsequent searches for qualitative evidence syntheses identified three reviews. These were integrated with the effectiveness reviews. The integration identified key components for a self-management intervention including: individualised approaches to care; the importance of addressing patients’ knowledge, skills and attitudes towards pain management; and the significance of team approaches and inter-disciplinary working in the management of pain. Conclusion: Implementing the findings from systematic reviews of complex interventions is often hindered by a lack of understanding of important contextual components of care, often provided by qualitative research. Using both types of data to provide answers for practice demonstrates the benefits of incorporating qualitative research in reviews of complex interventions by ensuring the strengths of qualitative and quantitative research are combined and that their respective weaknesses are overcome

Active Listening by Hospital Chaplaincy Volunteers: Benefits, Challenges and Good Practice

Active listening (AL) is a communication technique frequently used in counselling. This study explored the feasibility of implementing a ward-based AL intervention for patients by chaplaincy volunteers in the UK National Health Service. Seven focus groups (n=47) included healthcare researchers, lecturers, nurses, patients, AL tutors, active listeners volunteers and chaplaincy volunteers. Acceptability and perceived effectiveness of a patient/volunteer listener intervention were explored. Analysis followed the framework approach. Four themes emerged: (a) Listening as a wellbeing generator; (b) Benefits of AL delivered by volunteers; (c) Spirituality and public perceptions of hospital chaplaincy; (d) Challenges of structured communication techniques in acute care. Participants reported positive attitudes towards the introduction of AL provided by volunteers in acute wards. They shared a common belief that when people are listened to, wellbeing improves through control, choice and empowerment. Patients’ acceptability of the intervention increased if it was delivered by volunteers

A Framework for Describing the Influence of Service Organisation and Delivery on Participation in Fetal Anomaly Screening in England

Objective. The aim of this research was to explore the influence of service organisation and delivery on providers and users’ interactions and decision-making in the context of Down’s syndrome screening. Methods. A qualitative descriptive study involving online interviews conducted with a purposive sample of 34 community midwives, 35 pregnant women, and 15 partners from two maternity services in different health districts in England. Data were analysed using a combination of grounded theory principles and content analysis and a framework was developed. Results. The main emerging concepts were organisational constraints, power, routinisation, and tensions. Providers were concerned about being time-limited that encouraged routine, minimal information-giving and lacked skills to check users’ understanding. Users reported their participation was influenced by providers’ attitudes, the ambience of the environment, asymmetric power relations, and the offer and perception of screening as a routine test. Discordance between the national programme’s policy of nondirective informed choice and providers’ actions of recommending and arranging screening appointments was unexpected. Additionally, providers and users differing perceptions of emotional effects of information, beliefs, and expectations created tensions within them, between them, and in the antenatal environment. Conclusions. A move towards a social model of care may be beneficial to empower service users and create less tension for providers and users

Exploring the Influence of Patient-Professional Partnerships on the Self-Management of Chronic Back Pain: A Qualitative Study

Patients are encouraged to take an active role in self-managing their chronic back pain and functional problems. However, research suggests that patients do not self-manage, and they expect health professionals to fulfill a comprehensive role in managing pain. A partnership between patients and health professionals is called for, and self-management works best when they share knowledge and work together toward optimal goals. To explore how patients' partnerships with health professionals may influence their ability to self-manage pain by exploring patients' experiences. A grounded theory approach with in-depth, semistructured interviews was undertaken. Each interview was analyzed using constant comparative analysis. This study was nested within a larger study on patient-professional partnerships and the self-management of chronic back pain. Twenty-six patients with chronic back pain were recruited in a community-based pain management service in Northern England, United Kingdom. Three themes emerged: building partnerships with health professionals; being supported by health professionals to self-manage the pain; and experiencing a change in self-management. Five approaches that underpinned health professionals' self-management support were identified. Facilitators of and barriers to a good partnership were reported. This study suggests that a good patient-professional partnership has a positive effect on patients’ self-management ability. A theoretical model explaining how such partnership may influence self-management was developed. It is necessary for both patients and health professionals to be aware of their partnerships, which may enhance the effect of pain management services

Supporting self-management of pain by patients with advanced cancer: views of palliative care professionals

Purpose: The aim of the study is to ascertain the views of specialist palliative care professionals on patient selfmanagement of cancer pain in order to inform the development of a new educational intervention to support selfmanagement. Methods: This is a qualitative research study using focus group interviews. Results: Participants viewed self-management of cancer pain as desirable and achievable but also as something that could be problematic. Challenges to self-management were perceived in patient attitudes and behaviours, professionals’ own beliefs and actions and the wider social system. Practitioners: showed awareness of potential tension between their espoused views (the desirability that patients manage pain autonomously) and their tacit views (the undesirability of patients managing pain in ways which conflict with professionals’ knowledge and identity). Conclusions: Practitioners espoused patient-centred professional practice which inclined them towards supporting self-management. They showed awareness of factors which might inhibit them from effectively incorporating education and support for self-management into routine practice

The relative meaning of absolute numbers: the case of pain intensity scores as decision support systems for pain management of patients with dementia.

Assessment and management of pain in patients with dementia is known to be challenging, due to patients' cognitive and/or communication difficulties. In the UK, pain in hospital is managed through regular assessments, with the use of pain intensity scores as triggers for action. The aim of this study was to understand current pain assessment practices, in order to later inform the development of a decision support tool designed to improve the management of pain for people with dementia in hospital. An exploratory study was conducted in four hospitals in the UK (11 wards), with observations of patients with dementia (n = 31), interviews of staff (n = 52) and patients' family members (n = 4) and documentary analysis. A thematic analysis was carried out, structured along dimensions of decision making. This paper focuses on the emergent themes related to the use of assessment tools and pain intensity scores. A variety of tools were used to record pain intensity, usually with numerical scales. None of the tools in actual use had been specifically designed for patients with cognitive impairment. With patients with more severe dementia, the patient's body language and other cues were studied to infer pain intensity and then a score entered on behalf of the patient. Information regarding the temporality of pain and changes in pain experience (rather than a score at a single point in time) seemed to be most useful to the assessment of pain. Given the inherent uncertainty of the meaning of pain scores for patients with dementia, numerical scales were used with caution. Numerical scores triggered action but their meaning was relative - to the patient, to the clinician, to the time of recording and to the purpose of documenting. There are implications for use of data and computerized decision support systems design. Decision support interventions should include personalized alerting cut-off scores for individual patients, display pain scores over time and integrate professional narratives, mitigating uncertainties around single pain scores for patients with dementia

Pain assessment for people with dementia: a systematic review of systematic reviews of pain assessment tools.

BACKGROUND: There is evidence of under-detection and poor management of pain in patients with dementia, in both long-term and acute care. Accurate assessment of pain in people with dementia is challenging and pain assessment tools have received considerable attention over the years, with an increasing number of tools made available. Systematic reviews on the evidence of their validity and utility mostly compare different sets of tools. This review of systematic reviews analyses and summarises evidence concerning the psychometric properties and clinical utility of pain assessment tools in adults with dementia or cognitive impairment. METHODS: We searched for systematic reviews of pain assessment tools providing evidence of reliability, validity and clinical utility. Two reviewers independently assessed each review and extracted data from them, with a third reviewer mediating when consensus was not reached. Analysis of the data was carried out collaboratively. The reviews were synthesised using a narrative synthesis approach. RESULTS: We retrieved 441 potentially eligible reviews, 23 met the criteria for inclusion and 8 provided data for extraction. Each review evaluated between 8 and 13 tools, in aggregate providing evidence on a total of 28 tools. The quality of the reviews varied and the reporting often lacked sufficient methodological detail for quality assessment. The 28 tools appear to have been studied in a variety of settings and with varied types of patients. The reviews identified several methodological limitations across the original studies. The lack of a 'gold standard' significantly hinders the evaluation of tools' validity. Most importantly, the samples were small providing limited evidence for use of any of the tools across settings or populations. CONCLUSIONS: There are a considerable number of pain assessment tools available for use with the elderly cognitive impaired population. However there is limited evidence about their reliability, validity and clinical utility. On the basis of this review no one tool can be recommended given the existing evidence

Improving the management of pain from advanced cancer in the community: study protocol for a pragmatic multi-centre randomised controlled trial

Introduction: For patients with advanced cancer, research shows that pain is frequent, burdensome and undertreated. Evidence-based approaches to support cancer pain management have been developed but have not been implemented within the context of the UK National Health Service. This protocol is for a pragmatic multi-centre randomised controlled trial to assess feasibility, acceptability, effectiveness and cost effectiveness for a multi-component intervention for pain management in patients with advanced cancer. Methods and Analysis: This trial will assess the feasibility of implementation and uptake of evidence based interventions, developed and piloted as part of the IMPACCT Programme grant, into routine clinical practice and determine whether there are potential differences with respect to patient rated pain, patient pain knowledge and experience, healthcare use, quality of life, and cost effectiveness. 160 patients will receive either the intervention (usual care plus supported self-management) delivered within the oncology clinic and palliative care services by locally assigned community palliative care nurses, consisting of a self-management educational intervention and eHealth intervention for routine pain assessment and monitoring; or usual care. The primary outcomes are to assess implementation and uptake of the interventions, and differences in terms of pain severity. Secondary outcomes include pain interference, participant pain knowledge and experience, and cost effectiveness. Outcome assessment will be blinded and patient reported outcome measures collected via post at 6 and 12 weeks following randomisation. Ethics and Dissemination: This RCT has the potential to significantly influence NHS service delivery to community based patients with pain from advanced cancer. We aim to provide definitive evidence of whether two simple interventions delivered by community palliative care nurse in palliative care that support-self-management are clinically and cost effective additions to standard community palliative care

Towards improved decision support in the assessment and management of pain for people with dementia in hospital: a systematic meta-review and observational study

This is the final version. Available from NIHR Journals Library via the DOI in this record.Background Pain and dementia are common in older people, and impaired cognitive abilities make it difficult for them to communicate their pain. Pain, if poorly managed, impairs health and well-being. Accurate pain assessment in this vulnerable group is challenging for hospital staff, but essential for appropriate management. Robust methods for identifying, assessing and managing pain are needed. Aims and objectives Two studies were undertaken to inform the development of a decision support tool to aid hospital staff in the recognition, assessment and management of pain. The first was a meta-review of systematic reviews of observational pain assessment instruments with three objectives: (1) to identify the tools available to assess pain in adults with dementia; (2) to identify in which settings they were used and with what patient populations; and (3) to assess their reliability, validity and clinical utility. The second was a multisite observational study in hospitals with four objectives: (1) to identify information currently used by clinicians when detecting and managing pain in patients with dementia; (2) to explore existing processes for detecting and managing pain in these patients; (3) to identify the role (actual/potential) of carers in this process; and (4) to explore the organisational context in which health professionals operate. Findings also informed development of health economics data collection forms to evaluate the implementation of a new decision support intervention in hospitals. Methods For the meta-review of systematic reviews, 12 databases were searched. Reviews of observational pain assessment instruments that provided psychometric data were included. Papers were quality assessed and data combined using narrative synthesis. The observational study used an ethnographic approach in 11 wards in four UK hospitals. This included non-participant observation of 31 patients, audits of patient records, semistructured interviews with 52 staff and four carers, informal conversations with staff and carers and analysis of ward documents and policies. Thematic analysis of the data was undertaken by the project team. Results Data from eight systematic reviews including 28 tools were included in the meta-review. Most tools showed moderate to good reliability, but information about validity, feasibility and clinical utility was scarce. The observational study showed complex ward cultures and routines, with variations in time spent with patients, communication patterns and management practices. Carer involvement was rare. No pain decision support tools were observed in practice. Information about pain was elicited in different ways, at different times, by different health-care staff and recorded in separate documents. Individual staff made sense of patients’ pain by creating their own ‘overall picture’ from available information. Limitations Grey literature and non-English-language papers were excluded from the meta-review. Sample sizes in the observational study were smaller than planned owing to poor documentation of patients’ dementia diagnoses, gatekeeping by staff and difficulties in gaining consent/assent. Many patients had no or geographically distant carers, or a spouse who was too unwell and/or reluctant to participate. Conclusions No single observational pain scale was clearly superior to any other. The traditional linear concept of pain being assessed, treated and reassessed by single individuals did not ‘fit’ with clinical reality. A new approach enabling effective communication among patients, carers and staff, centralised recording of pain-related information, and an extended range of pain management interventions is proposed [Pain And Dementia Decision Support (PADDS)]. This was not tested with users, but a follow-on study aims to codesign PADDS with carers and clinicians, then introduce education on staff/patient/carer communications and use of PADDS within a structured implementation plan. PADDS will need to be tested in differing ward contexts.National Institute for Health Research Health Services and Delivery Research programm