Marianne Rigge, Director of the College of Health, describes an innovative project to develop guidelines that are firmly centred on patients' experiences

Since 1983, the College of Health has pioneered the development of consumer audit – a range of qualitative research techniques to determine patients' experiences and views of the services they receive.

Because of the College of Health's experience in this area, the Royal College of Physicians' Research Unit invited the College to join them as partners in a project to develop a patient-focused set of national clinical guidelines on rheumatoid arthritis (RA). This would involve all the main stakeholders, but especially users, i.e. patients and their carers.1

A novel approach

The College of Health has previously worked with a number of Royal Colleges on the development of clinical guidelines in an advisory capacity. This project was unusual in that patients were not only the starting point, but at the very centre of the guideline development process.

The clinicians and others involved in the treatment and care of people with RA who will help to produce the final guidelines will be starting with a body of knowledge and expertise derived from the only people to have experienced the effects of the disease and its treatment on the quality of their lives. This is a novel approach, so how did the College go about it?

Literature review

The first stage was a literature review to identify previous work on patient views of RA.

The main lesson learnt from this exercise was that relying solely on electronic databases (MEDLINE, CINAHL etc) has very real limitations. First, there was a strong bias towards research from the US and Canada, where the healthcare systems are quite different. Second, a number of publications that were subsequently found to be highly relevant, including, for example, key journals such as the British Journal of Rheumatology, were missed.

Sources of information

Some of the most useful literature identified was 'grey' literature, for example project research papers and papers from patient-focused organisations which are rarely submitted for publication in peer-reviewed journals.

Patient organisations and research organisations with a specific interest in RA proved a particularly fruitful source of information.

Many of the papers obtained through hand searching and personal contact seemed more relevant than those identified through the formal search. This has implications for any future review of the patient perspective to inform guideline development.

Focus groups

Liaison with key patient organisations was crucial to the success of the project, not only in identifying relevant studies, but also in securing access to groups of people with RA around the country. Both national and local branches of Arthritis Care and Young Arthritis Care helped us to set up the next stage of the project, which involved a series of focus groups around the country.

We had some concerns about whether we would be able to recruit enough people with RA as opposed to osteoarthritis (which is much more common), but these proved unfounded. The willingness of patients to participate – and indeed their gratitude at being asked – suggest that many patients with other chronic or long-term conditions would willingly give up their time to ensure that their experiences inform the development of clinical guidelines.

The reason for choosing focus groups as the main method of eliciting information was that it allowed patients to talk about their experiences on their own terms, rather than asking them to respond to issues identified as important by researchers and health professionals.

A wealth of information was uncovered by the focus groups, including information on diagnosis, treatment and access to different health professionals.

Variability revealed

Early onset of RA varied. Some people reported that it started slowly and gradually, whereas others experienced a sudden and dramatic onset. There was also variability:

  • In the way patients were treated when they first presented
  • In the time it took to secure a diagnosis
  • In referrals to other health professions, including therapists
  • In patients' perceptions of the expertise and demeanour of the health professionals responsible for their care
  • In the perceived quality of communications from and between health professionals.

Some people felt that they had only received the correct care by chance, for example by seeing a different GP. Some clearly felt that they had received inappropriate care, sometimes for long periods and resulting, from their perspective, in irreversible damage.

Impact of having RA

In the past, clinical guidelines have tended to focus on issues that are important to clinicians and researchers, with the emphasis on test results and drug treatments. While there was discussion of these by patients in the focus groups, a considerable proportion of the discussions also focused on the impact of having RA.

It was clear that patients with RA have many practical and emotional needs which are currently unmet.

Participants observed that doctors tend to focus on clinical solutions such as drugs, whereas they wanted doctors to give them, in addition, advice on other services and sources of information and support.

Practical and emotional needs

Patients discussed both the practical and emotional impact of RA on their lives. Many practical needs were highlighted, including:

  • Coping with tiredness
  • Reduced mobility
  • The need for aids and gadgets
  • The costs of aids and gadgets.

Emotional problems included:

  • Loss of confidence
  • Fears for the future
  • Feelings such as frustration, anger and depression.

Patients with RA described how the disease can affect all aspects of their lives, including:

  • Jobs and careers
  • Financial security
  • Studying
  • Practical tasks such as housework and shopping
  • Social lives.

These in turn often affected their relationships and families.

Holistic approach

While these aspects are not truly clinical, many will have repercussions for patients in terms of their physical and emotional wellbeing, and for clinicians in terms of the need to develop a holistic approach and attitude.

A key theme identified throughout the focus groups was the need for up-to-date, unbiased information and advice, coupled with the need to avoid conflicting advice that patients sometimes receive from different health professionals. This is another reason why the final guidelines will need to be accessible to all those involved in the treatment of RA, including patients.

Information needs

The information needs identified by people in the focus groups included:

  • General information on RA and what is known – and not known – about the causes
  • Explicit information about the expected benefits and side-effects of different treatment options, including both drug and non-drug treatments and therapies, as well as surgical interventions
  • Lifestyle advice on coping with the practical difficulties and self-management
  • Emotional aspects of the disease
  • Sources of advice and support including national and local self-help groups
  • Financial advice and information on benefits.

Potential sources of information include not only health professionals but also the National Health Information Service and NHS Direct, support groups such as Arthritis Care and Young Arthritis Care, social workers, agencies advising on welfare benefits, and a wide range of disability-related self-help groups and voluntary organisations.

Patients' concerns

The patients who took part in this audit raised some serious issues and highlighted areas where different parameters – diagnosis, treatment, care and access to services and information – were sometimes less than satisfactory.

By urging guideline developers to address these patient-reported issues, we hope that guidelines will be produced that will reduce the incidence of some of these problems in the future.

By highlighting areas of patient concern where there is insufficient evidence to answer these concerns at present, the audit has identified future topics for research, the answers to which may inform future versions of the guideline.

Making informed choices

Clinical guidelines can provide a useful tool for helping to secure equitable standards of care for patients, while maintaining the flexibility needed to accommodate different patient circumstances and preferences.

However, if patients are to make informed choices about their care and to be confident that they are receiving the best standards of care available, they – as much as health professionals – need access to the information contained in clinical guidelines.

Patient-friendly format

For this reason the College of Health has strongly recommended that, in addition to ensuring that patient views inform the development and content of the clinical guidelines for RA, efforts should be made to ensure that the same information is also available in a patient-friendly format.

This is something which needs to be taken on board, not just by the Royal College of Physicians and the various clinical groupings involved, but also by the National Institute for Clinical Excellence once it is up and running.

Patients as partners

We recognise that there are cost implications attached to this, but firmly believe that a truly qualitydriven service, such as that envisaged in A First Class Service, must involve patients as true partners in health care, rather than just passive recipients.2 This project has demonstrated that patients are ready and willing to become involved in the process.

References

  1. Stone V, Kelson M, Rigge M. The views of people who have rheumatoid arthritis: a study to identify issues in the development of a patient-centred guideline. London: College of Health, 1998 (in press).
  2. A First Class Service: Quality in the New NHS. London: Department of Health, 1998

Guidelines in Practice, November 1998, Volume 1
© 1998 MGP Ltd
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