Complex Care Pathways Research Articles

Developing, delivering and documenting rehabilitation in a multi-centre randomised controlled surgical trial: experiences from the ProFHER trial.

Objectives A rigorous approach to developing, delivering and documenting rehabilitation within randomised controlled trials of surgical interventions is required to underpin the generation of reliable and usable evidence. This article describes the key processes used to ensure provision of good quality and comparable rehabilitation to all participants of a multi-centre randomised controlled trial comparing surgery with conservative treatment of proximal humeral fractures in adults.Methods These processes included the development of a patient information leaflet on self-care during sling immobilisation, the development of a basic treatment physiotherapy protocol that received input and endorsement by specialist physiotherapists providing patient care, and establishing an expectation for the provision of home exercises. Specially designed forms were also developed to facilitate reliable reporting of the physiotherapy care that patients received.ResultsAll three initiatives were successfully implemented, alongside the measures to optimise the documentation of physiotherapy. Thus, all participating sites that recruited patients provided the sling immobilisation leaflet, all adhered to the physiotherapy protocol and all provided home exercises. There was exemplary completion of the physiotherapy forms that often reflected a complex patient care pathway. These data demonstrated equal and high access to and implementation of physiotherapy between groups, including the performance of home exercises.Conclusion In order to increase the validity and relevance of the evidence from trials of surgical interventions and meet international reporting standards, careful attention to study design, conduct and reporting of the intrinsic rehabilitation components is required. The involvement of rehabilitation specialists is crucial to achieving this.Cite this article: Bone Joint Res 2014;3:335–40.

Concepts of 'personalization' in personalized medicine: implications for economic evaluation.

This study assesses if, and how, existing methods for economic evaluation are applicable to the evaluation of personalized medicine (PM) and, if not, where extension to methods may be required. A structured workshop was held with a predefined group of experts (n=47), and was run using a modified nominal group technique. Workshop findings were recorded using extensive note taking, and summarized using thematic data analysis. The workshop was complemented by structured literature searches. The key finding emerging from the workshop, using an economic perspective, was that two distinct, but linked, interpretations of the concept of PM exist (personalization by 'physiology' or 'preferences'). These interpretations involve specific challenges for the design and conduct of economic evaluations. Existing evaluative (extra-welfarist) frameworks were generally considered appropriate for evaluating PM. When 'personalization' is viewed as using physiological biomarkers, challenges include representing complex care pathways; representing spillover effects; meeting data requirements such as evidence on heterogeneity; and choosing appropriate time horizons for the value of further research in uncertainty analysis. When viewed as tailoring medicine to patient preferences, further work is needed regarding revealed preferences, e.g. treatment (non)adherence; stated preferences, e.g. risk interpretation and attitude; consideration of heterogeneity in preferences; and the appropriate framework (welfarism vs. extra-welfarism) to incorporate non-health benefits. Ideally, economic evaluations should take account of both interpretations of PM and consider physiology and preferences. It is important for decision makers to be cognizant of the issues involved with the economic evaluation of PM to appropriately interpret the evidence and target future research funding.

A policy-maker’s perspective on ‘ECDC and EMCDDA guidance: prevention and control of infectious diseases among people who inject drugs’

A policy-maker’s perspective on ‘ECDC and EMCDDA guidance: prevention and control of infectious diseases among people who inject drugs’

AB0732 Gendered Issues about Spondyloarthritis. Another CASE Yentl's Syndrome?

BackgroundDifferent presentation of clinic manifestations (signs and symptoms) of Spondyloarthritis (SpA) in women and, its variant in men, Ankylosing Spondylitis (AS), and the lack of specificity of the presentation in...

Economic modelling of diagnostic and treatment pathways in National Institute for Health and Care Excellence clinical guidelines: the Modelling Algorithm Pathways in Guidelines (MAPGuide) project

National Institute for Health and Care Excellence (NICE) clinical guidelines (CGs) make recommendations across large, complex care pathways for broad groups of patients. They rely on cost-effectiveness evidence from the literature and from new analyses for selected high-priority topics. An alternative approach would be to build a model of the full care pathway and to use this as a platform to evaluate the cost-effectiveness of multiple topics across the guideline recommendations. In this project we aimed to test the feasibility of building full guideline models for NICE guidelines and to assess if, and how, such models can be used as a basis for cost-effectiveness analysis (CEA). A 'best evidence' approach was used to inform the model parameters. Data were drawn from the guideline documentation, advice from clinical experts and rapid literature reviews on selected topics. Where possible we relied on good-quality, recent UK systematic reviews and meta-analyses. Two published NICE guidelines were used as case studies: prostate cancer and atrial fibrillation (AF). Discrete event simulation (DES) was used to model the recommended care pathways and to estimate consequent costs and outcomes. For each guideline, researchers not involved in model development collated a shortlist of topics suggested for updating. The modelling teams then attempted to evaluate options related to these topics. Cost-effectiveness results were compared with opinions about the importance of the topics elicited in a survey of stakeholders. The modelling teams developed simulations of the guideline pathways and disease processes. Development took longer and required more analytical time than anticipated. Estimates of cost-effectiveness were produced for six of the nine prostate cancer topics considered, and for five of eight AF topics. The other topics were not evaluated owing to lack of data or time constraints. The modelled results suggested 'economic priorities' for an update that differed from priorities expressed in the stakeholder survey. We did not conduct systematic reviews to inform the model parameters, and so the results might not reflect all current evidence. Data limitations and time constraints restricted the number of analyses that we could conduct. We were also unable to obtain feedback from guideline stakeholders about the usefulness of the models within project time scales. Discrete event simulation can be used to model full guideline pathways for CEA, although this requires a substantial investment of clinical and analytic time and expertise. For some topics lack of data may limit the potential for modelling. There are also uncertainties over the accessibility and adaptability of full guideline models. However, full guideline modelling offers the potential to strengthen and extend the analytical basis of NICE's CGs. Further work is needed to extend the analysis of our case study models to estimate population-level budget and health impacts. The practical usefulness of our models to guideline developers and users should also be investigated, as should the feasibility and usefulness of whole guideline modelling alongside development of a new CG. This project was funded by the Medical Research Council and the National Institute for Health Research through the Methodology Research Programme [grant number G0901504] and will be published in full in Health Technology Assessment; Vol. 17, No. 58. See the NIHR Journals Library website for further project information.

Identifying Patient‐Centered Quality Indicators for the Care of Adult Home Parenteral Nutrition (HPN) Patients

Previous qualitative research, aimed at eliciting the experiences and views of home parenteral nutrition (HPN) patients in daily life, revealed little information on HPN care. However, to perform patient-centered care, it is important to understand what "quality of care" means for adult HPN patients. Therefore, the aim of this study was to identify quality indicators through patients' perspectives. In-depth, face-to-face, semistructured interviews were conducted between June and November 2011 with adult patients who recently started HPN. Patients were selected by purposive sampling. Interviews were audio recorded, transcribed verbatim, and analyzed using a framework approach. Nvivo 9.0 software was used for managing transcripts. Twelve adult patients (7F/5M) were interviewed. At the time of the interview, median HPN experience was 59 days. Two structure, 31 process, and 9 outcome indicators were identified. The majority of process indicators are related to the home nurse, indicating the important role of these healthcare professionals in HPN care. In addition, all interviewees reported communication as an essential aspect of the complex care pathway. The identified outcome indicators are comparable with the indicators that were previously developed by an expert panel. For example, improvement in quality of life during HPN treatment and incidence of catheter-related infections were identified by both groups. Interviews with HPN patients revealed an interesting set of indicators that can be used to perform, evaluate, or improve current HPN care and are a starting point for a more patient-centered approach.

Short bowel syndrome: the pathophysiology and treatment

Short bowel syndrome is a complex part of intestinal failure. This group of patients have complex care pathways requiring the management from a specialist multidisciplinary team. Nutrition, fuid and electrolyte management, complex wound management, surgical interventions and psychosocial support are part of the daily treatment. If managed incorrectly, short bowel syndrome can be life threatening. In this article, Jacquie Peck, Lian Soo, Lela Boland, Al Windsor and Alec Engledow provide an explanation of the pathophysiology of short bowel syndrome and management provided by a specialist unit.

Could GP commissioning enable collaboration throughout the NHS?

Could GP commissioning enable collaboration throughout the NHS?

The role of community nurses in providing a seamless patient pathway

Every day, community nursing teams deliver evidence-based practice and use their expertise to oversee complex care pathways. However, much of the valuable work community nurses undertake remains invisible or tacit as practitioners concentrate on managing their patients' needs rather than raising the profile of the service they offer. This case study demonstrates the crucial role a community nursing team played in coordinating services, risk management and delivering evidence-based care. This enabled an individual to heal his problematic abdominal wound and quickly regain his former quality of life. When community nursing teams apply their experience and clinical expertise, they can facilitate dramatic improvements in patients' health and recovery times. Nursing teams need to highlight and promote the valuable role they play in care pathways to the commissioners of community services. Patients can then continue to be supported by professionals with the experience and skills to assist them in managing complex clinical situations.

Editorial: Developing user‐centred services

Editorial: Developing user‐centred services

An ontological approach to modelling tasks and goals

Current approaches to modelling plans and processes in AI are limited by current understanding of “goals” and “intentions”. We discuss this question in a medical context, viewing goals as clinical objectives and plans and processes as collections of tasks to achieve those objectives. The specific context for this discussion is the CREDO project, which aims to develop a comprehensive approach to supporting complex treatment plans and care pathways and provides an opportunity to carry out an extensive investigation of the key problem of formalising goals in medical informatics and AI generally. A review of 222 clinical services required in the management of breast cancer has yielded a systematic classification of tasks involved in breast cancer care and a similar classification of the clinical goals associated with these tasks. A six-component model of goal structure is proposed based on these ontological analyses. Although the model has been derived from a corpus of examples from medicine many of the issues encountered, and the solution proposed, appear to be relevant to other domains.