Mapping the Patient’s Journey in Rheumatoid Arthritis

This mapping project provides the results of exploring the experiences of 22 patients’ pathways of care from first symptoms and seeking advice from their general practitioner to the first three years of their care.

Individuals were recruited from the National Rheumatoid Arthritis Society (NRAS) Membership and represent a UK-wide geographic spread.

Mapping projectA multi-professional advisory board was appointed by NRAS to oversee this project and guide the planning phase. An additional independent qualitative researcher added rigour by reviewing draft documents and data collected.

The data was collected using two forms of enquiry: Qualitative research interviews and process mapping. In addition, a researcher for the London School of Economics carried out an economic analysis based upon data collected using recognised economic principles.

The data collected included:

  • Key points in the patient management that can be measured against guidelines and standards set out for Rheumatoid Arthritis. 
  • Details of pharmacological and non-pharmacological management with time frames in relation to changes in treatment or management. 
  • The costs of healthcare were calculated. These costs included costs of generalist and specialist support, costs of drugs over the times prescribed and inpatient or surgical costs. 
  • The costs to the individual – these included work related losses and costs related to support and additional needs that resulted from their inability to manage activities of daily living or costs related to frequent hospital visits and additional support required. 
  • There were specific issues related to the use of private healthcare and this was calculated as a healthcare cost. 

The results demonstrate that:

  • Delays in accessing early treatment tend to exacerbate the lay belief that there is ‘nothing that can be done for arthritis’. 
  • Current standards and guidelines need to be more rigorously implemented. 
  • People presenting with joint pain remain unaware of the standards they should expect, leaving them vulnerable to sub-optimal care. 
  • 7 of 11 participants seen within 12 weeks of symptoms in this study were seen as a result of a private referral. 
  • 16/22 participants received treatment with a disease modifying drug (e.g. methotrexate) within 6 months of first presentation. 
  • Delays in referral or receiving a definitive diagnosis/treatment can result in significant costs (personal costs for 3 individuals in this study averaged £1,990.27. 
  • The indirect costs are high and borne silently by the individual with RA (e.g. job losses). 7 participants had to take early retirement or job losses directly attributed to the RA within the time of this study. 
  • Individuals who have aggressive disease are heavy users of healthcare. 
  • For those calculating the direct costs of RA the assumptions of healthcare costs fail to adequately capture the wide use of healthcare resources – patients are admitted and often managed through a range of medical specialities. 
  • Early, more proactive management will reduce healthcare use and enable individuals to remain in work. 
  • Some individuals could be identified as heavy consumers of healthcare resources early on in their disease, regardless of costs of drug therapies. 
  • Half of the participants eligible for biologic therapies (anti-TNF a inhibitors – adalimumab, etanercept or infliximab) experienced delays before accessing treatment (delays ranged from 2-10 months). 

This project has revealed some important insights that may help to inform Primary Care Trusts and commissioners and enable them to identify key issues in their local services. This process of exploring patient journeys in the local community could be repeated to identify specific issues in healthcare provision.

The limitations of this study are that these results could be seen as representing a broadly proactive and able population of individuals who were members of NRAS and therefore had the ability to seek support themselves. This study did not represent areas of deprivation or those who have specific learning needs, cultural or ethnic minority needs. However, it is likely in these areas the needs and the results outlined will demonstrate a much greater need than reflected in this study.

This work will be discussed at the RCN Rheumatology Forum Conference in January 2008 and you can access this report on the BSR website. In the meantime we did present a brief overview of the results at the BSR AGM Poster Presentation Oliver S and Bosworth A No: 267 Rheumatology: Volume 46: Supplement 1: April 07. Page i108

Click here to download the full version of The Mapping Project. 

11/07/07 : Authors: Susan M Oliver, RN, MSc., Nurse Consultant Rheumatology, Chief Nurse Advisor NRAS and Ailsa Bosworth, Chief Executive, NRAS

'The Mapping Project has been updated in February 2008. Some minor corrections have been made graphs (figure 9, 10 and 14) and Appendix 12 has been reprinted as some columns were missing. Table 6 the total was incorrect and this has been corrected. 

It is important to note that the pdf version published on this website represents only a small component of the complete data set generated from this project. For further information please speak to the NRAS team.'