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Shared learning for chronic conditions: a methodology for developing the Royal College of Paediatrics and Child Health (RCPCH) care pathways for children with allergies
  1. John O Warner1,
  2. Kate Lloyd2 on behalf of the Science and Research Department, Royal College of Paediatrics and Child Health
  1. 1Section of Paediatrics, Imperial College, St Mary's Hospital Campus, London, UK
  2. 2Science and Research Department, Royal College of Paediatrics and Child Health, London, UK
  1. Correspondence to Professor John O Warner, Imperial College London, Norfolk Place, London W2 1PG, UK; j.o.warner{at}imperial.ac.uk

Abstract

Aims The Royal College of Paediatrics and Child Health (RCPCH) Science and Research Department was commissioned by the Department of Health to develop national care pathways for children with allergies. The pathways focus on defining the competences to deliver the highest standard of care for such children. By defining competences rather than criteria for onward referral, the authors have sought to create flexibility in delivery of care which will be responsive to regional variations in knowledge, skills and service.

Method All pathways were developed by multidisciplinary working groups, based on a comprehensive review of evidence. The pathways were reviewed by a broad group of stakeholders and approved by the Allergy Care Pathways Project Board and the RCPCH Clinical Standards Committee.

Results The results for all pathways are presented in two sections: a pathway algorithm and the competences. The entry points for each pathway are defined at the point where symptoms first occur and the ideal management is described from self-care through complete diagnosis to monitoring of progress. From the evidence review the working groups were able to make research recommendations.

Conclusions The authors present eight national care pathways for allergic conditions based on evidence review, expert consensus and stakeholder input. They provide a guide for training and development of services to facilitate improvements in delivery as close to the patient's home as possible. The authors recommend that these pathways are implemented locally by a multidisciplinary team with a focus on creating networks between primary, secondary and tertiary care to improve services for children with allergic conditions.

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Introduction

Paediatric allergy services in the UK

Allergic conditions are the commonest cause of chronic disease in childhood and affect upwards of 40% of the UK paediatric population.1,,3 Furthermore, over the last 30 years there has been a progressively increasing prevalence of allergic diseases which some have described as an epidemic.4 While there is some evidence that the rate of increase is slowing for asthma at least in developed countries,5 this is not true of food allergy, anaphylaxis and urticaria which have resulted in sevenfold increases in hospital emergency care.6 Allergic diseases seriously impair the quality of life and health of children and occasionally can lead to death.

Comorbidity of the related allergic conditions is common, which compounds the impact on quality of life.7 8 Furthermore, as there is a paucity of comprehensive paediatric allergy services, patients often attend a succession of system specialist clinics (respiratory, ear, nose and throat, dermatology, etc) with no coordination of investigations or treatment. This is clearly not cost-effective and sometimes leads to cumulative side effects from the use of topical steroids for allergic manifestations in the skin, nose and lungs. While general practitioner (GP) practice surveys suggest that the vast majority of patients can be treated in the community, allergy care is generally poor.9 A recent audit of GP choose and book referrals to a south London hospital found that up to 18% of general paediatric referrals would have benefited from a consultation with a paediatrician with training in allergy.10 Estimates suggest direct healthcare costs for both paediatric and adult allergy in the UK exceed £1 billion (GP consultations £300 million, hospital admissions £100 million, medication £800 million, over the counter medication £80 million). Indirect costs include lost school days, lost work time and lost productivity and also exceed £1 billion. There are also many intangible costs: distress, discomfort, disability and occasionally death.11

Several reports detail the unmet need in allergy services.11,,15 Despite the publication of numerous guidelines for the care of children with allergies,16,,40 morbidity due to allergic diseases remains high. Much of this can be explained by inadequate service delivery which all too often treats the acute phase of allergy (eg, anaphylaxis, asthma exacerbation, severe eczema) but fails to address the chronic phase (eg, long term aspects of food allergy, daily prevention of asthma, daily treatment of eczema) where long lasting or recurrent bouts of the chronic illness affect quality of life.

Following reports from the Royal College of Physicians (2003) and the Parliamentary Health Committee, the 2006 Department of Health review of allergy services recognised that there was a specific need to define care pathways for children with allergic conditions.41 The Royal College of Paediatrics and Child Health (RCPCH) Science and Research Department was asked to produce a scoping document outlining how this would be achieved. This report was accepted and the College was subsequently commissioned to develop national care pathways for children with allergies.

Care pathways

The terminology relating to and format of care pathways is wide and varied.42 Critical pathways, care paths and clinical pathways are all patient focused tools that describe the sequence and timing of actions to achieve patient outcomes with the greatest efficiency.43 Integrated care pathways are important because they can help to reduce unnecessary variations in patient care and outcomes.44 The European Pathway Association defines care pathways as complex interventions that aid decision making in the care of a well-defined group in a well-defined period. Defining characteristics of care pathways include:

  • (1) goals and key elements of care based on evidence, best practice and patients' expectations;

  • (2) the facilitation of communication;

  • (3) the coordination of the care process for the multidisciplinary care team, patients and their relatives;

  • (4) the documentation, monitoring and evaluation of variances and outcomes; and

  • (5) the identification of the appropriate resources.45

Pathways have been found to lead to improvements in patient satisfaction and quality of life in chronic liver disease46 while also enhancing openness and honesty in end of life care between professionals, patients and families.47 Favourable rehabilitation outcomes and cost-effectiveness have been found for hip replacements.48 A recent Cochrane review also found that in hospitals clinical pathways were associated with reduced in-hospital complications and improved documentation without negatively impacting on length of stay and hospital costs.49 Most of the work has been done in the hospital setting and a challenge of pathway mapping is to provide a high level view that illustrates both the whole care system and the details of specific activities,50 which is particularly important when mapping outside the hospital setting.

The purposes of guidelines and care pathways are often confused. Guidelines set out the clinical care that is suitable for most patients with a specific condition by assessing both the clinical and cost effectiveness of treatments.51 In contrast, care pathways are first and foremost patient focused tools that facilitate the application of guidelines locally.52 They aim to link evidence of practice for specific health conditions and optimise patient outcomes while maximising clinical efficiency.

The Project Board, with the agreement of the Department of Health, developed the pathways around the definition of the competences that are required to deliver the highest standard of care, rather than criteria for onward referral. Thus referral would be dictated by recognition that competence to handle a clinical situation had been exceeded. The pathways would provide the information for health professionals to assess if they have the appropriate competences to provide the appropriate level of care.

The allergy pathways developed by the RCPCH are aimed at commissioners, health professionals and patients, parents and carers and provide a tool that commissioners can use to bench-mark the service for their population. In addition, the pathways provide patients, parents and carers with the information required to understand their role in empowered and supported self-care.

Method

Ultimately, eight pathways were developed by six multidisciplinary working groups who reported to the RCPCH Allergy Care Pathways Project Board chaired by JOW and coordinated by KL (table 1). The working groups included health professionals with expertise in paediatric and adult allergy, allergy and paediatric nursing, pharmacy, primary care, secondary care, immunology, dietetics and emergency care, along with the ambulance service and relevant parent/carer representatives. Where possible young people were invited to be part of the working groups The Allergy Care Pathways Project Manager (KL) led a systematic review of the evidence; all papers and guidelines were critically appraised and this was followed by an iterative mapping process. The methodology used to develop each pathway consisted of a systematic review of the evidence in the topic area led by the project manager and a critical appraisal of the identified literature followed by an iterative mapping of the pathway informed by the evidence and the expert opinion of the working group.

Table 1

Royal College of Paediatrics and Child Health care pathway working groups

Evidence review

The evidence review aimed to answer two key clinical questions: (1) What is the ideal pathway of care for children (0–18 years) from self-care to follow-up?; (2) For each stage of care within the pathway, what are the things a health professional should know, the specific skills a health professional should have and the services or facilities to which the health professional should have access?

A systematic search, with no language restriction, was conducted in the Cochrane Library, Medline, the National Guidelines Clearing House, the Scottish Intercollegiate Guidelines Network (SIGN) and the National Institute for Health and Clinical Excellence database. Searches were restricted to 1998–2009. Updated searches (2009–2010) were also run in Embase. The results of the search were compiled in a reference manager library to allow for easy identification of duplicates. There was no systematic attempt to identify grey literature but additional hand searching of reference lists of identified papers was conducted by each working group. The following criteria were used:

  • Inclusion criteria: guidelines, systematic reviews and primary research with subjects aged 0–18 with the allergic condition and/or a related allergic condition; extrapolation of evidence from adult or mixed studies was accessed where there was no evidence directly relating to children

  • Exclusion criteria: case reviews (<3 cases), all primary prevention papers and papers published before 1998.

Quality assessment

Systematic reviews and primary research papers were quality assessed by two reviewers from the working group using modified Critical Appraisal Skills Programme tools.53 Clinical guidelines (guidelines, consensus statements and position papers) were quality assessed by the RCPCH Clinical Standards Team using a modified AGREE tool.54 Evidence levels were applied using a modified SIGN methodology (tables 2 and 3).55 An extra criterion was created for those recommendations taken from guidelines; all recommendations from appraised guidelines were accepted verbatim and assigned a clinical practice guideline grade.

Table 2

Scottish Intercollegiate Guidelines Network: key to evidence statements55

Table 3

Scottish Intercollegiate Guidelines Network: modified grades of recommendation55

Mapping

Mapping of the care pathway from self-care to follow-up was undertaken iteratively at three meetings by each multidisciplinary working group, guided by the evidence review and the RCPCH56 57 and Skills for Health competence58 documents. Disagreements were resolved using informal consensus methods with the option to use formal voting where consensus was difficult to obtain. The pathway was colour coded according to a modified SIGN grading55 arising from the critical appraisal. Conflict of interest was recorded for all participants.

External peer review

Stakeholders were invited by email to review each draft pathway. This included relevant medical colleges (eg, the Royal College of General Practitioners, the College of Emergency Medicine, the Royal College of Nursing), professional associations (eg, the British Society for Allergy and Clinical Immunology) and patient support groups (eg, Asthma UK, The Anaphylaxis Campaign). The pathway document was made available on a public section of the RCPCH website for at least 2 weeks. All comments were reviewed and responses agreed by each working group. The RCPCH Council readers reviewed and commented on all the pathway documents. The pathway and methodology were also independently reviewed and approved by the RCPCH Clinical Standards Committee. The resulting pathways and competences are RCPCH copyright.

Results

The resulting eight pathways are presented separately in this supplement.59,,66

Discussion

Network approach

The goal of each pathway developed by the RCPCH was to achieve delivery of a high quality and cost effective service as close to patients' homes as possible. This supports the remit suggested in the recently published Kennedy Report which recommends building networks and ‘joining up’ services to develop a common vision in the National Health Service that is strong enough to bind all agencies while taking account of different perspectives.67

Strengths

The project has resulted in the delineation of national care pathways based on a comprehensive review and appraisal of the available evidence, expert consensus and comprehensive stakeholder input. We believe that the greatest strength of these pathways is that they do not designate where care should be undertaken, but in order to assist flexibility of service delivery they outline the competences required by healthcare professionals. We also believe that the experience gained in this project could provide a template for the introduction of care pathways for other chronic conditions.

Challenges

The evidence review identified a paucity of robust evidence for allergy care in children. As a response the working groups have developed research recommendations for improving the care of children with allergies. These research recommendations identified by the working groups are currently the subject of a Delphi consensus to determine their relative importance.

Implementation

The next step in the process is implementation of the pathways. To aid this, we are developing a range of tools, each of which is undergoing pilot assessment. These will include:

  • a set of downloadable PowerPoint presentations and video clips to aid the education of health professionals and patients/parents

  • guidance on running educational sessions, including scenario discussion guides

  • a patient reported experience measure, developed in collaboration with Picker Institute Europe, which is currently being piloted in northwest London

  • audit criteria for services wishing to measure themselves against implementation of the pathways.

Implementation of these pathways will require communication between health professionals, commissioners and a range of agencies charged with the care of children from disparate organisations (health, education, social services, etc). The changes in commissioning which are about to be introduced have the potential to create additional boundaries to effective communication. However, the recent Kennedy Report provides the ultimate directive which should ensure that the agencies do work together for the benefit of children.67 The emphasis in the report is on a holistic approach achieved by:

  • local partnerships including all agencies involved with the care of children in a locality

  • emphasis on efficient service provision.67

The future

Imperial College, in collaboration with the RCPCH, has recently been awarded funding to implement the RCPCH care pathways in northwest London and measure the patient experience across the pathways. This will be achieved by cultivating the network which the team has already started to build. The team plan to recruit a local Young Person Panel of allergy suffers that will evolve into a National Allergic Young Person Panel. This project commenced in April 2011. The experience gained from the pilot implementation in northwest London will be cascaded to all regions of the UK. As such there is already close collaboration with groups in northwest England and Northern Ireland where additional initiatives to develop services are already in progress.

Acknowledgments

We thank the RCPCH Allergy Care Pathways Project Board who provided guidance and assistance; the RCPCH Clinical Standards team for their hard work on the approval process, in particular Ms Katie Jones; Mrs Linda Haines who provided guidance and insight to project direction; and Ms Hilary Whitworth, a PhD student at the University of Southampton, who provided assistance for the evidence review.

References

View Abstract

Footnotes

  • Funding This project was funded by the Department of Health.

  • Competing interests JOW has received financial support from Novartis, Danone, Airsonette, Merck, Allergy Therapeutics, GSK, AstraZeneca and Phadia. No other authors have any financial interest.

  • Provenance and peer review Commissioned; externally peer reviewed.

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