There is widespread agreement that people should be informed about healthcare options and involved in decisions about their own care.
In England and Wales, the National Institute for Clinical Excellence is intent on achieving a patient focus in its work, and the NHS plan emphasises the need for patients to have more say in their own care.
Similarly, the NHS cancer plan for England and Wales emphasises the need for good communication between health professionals and patients, both for delivering high-quality care and for empowering people to be involved in decisions about their own care.
There are likely to be a number of barriers to involving patients in decision-making, including uncertainty about patients' desire for participation, the types of information needed and problems with accessing suitable patient materials. Eliciting patients' preferences and involving them in decisions requires that health professionals have excellent communication skills and that goodquality patient information is readily accessible.
Adequate resources will have to be made available to meet the costs of developing, providing, using and dealing with the consequences of initiatives to support patient participation.
The latest edition of Effective Health Care summarises current knowledge about communication, information-giving and sharing decisions between health professionals and people with cancer.
1The bulletin draws on evidence from systematic reviews produced by the Cochrane consumers group, other systematic reviews and from guidance produced by the national cancer guidance steering group.
Communicating with patients In 1993 the General Medical Council recognised the need to teach communication skills as part of British undergraduate medical education. Despite such training the most common complaints made by cancer patients are about poor communication and inadequate information. Health professionals have also reported feeling inadequately trained to communicate with patients.
For example, all consultant non-surgical oncologists working in the UK were contacted, and of the 83 per cent who responded almost half considered that they had not received sufficient training in communication skills. Generic communication skills training is advocated for health professionals as part of the NHS plan.
Training programmes should include instruction in how to elicit patients' need and readiness for information as well as their preferences for involvement in decision-making.
A recent systematic review evaluated communication training programmes for nurses. In the one study that measured effects on patients, reduced levels of anxiety were found. There was no improvement, however, in health professionals' empathy skills. The other better-quality studies found improvements in health professionals' attitudes. In another overview of training programmes for health professionals working with cancer patients, positive changes in the communication skills of some participants were found. Those health professionals who reported the most negative attitudes at the start of the training appeared to benefit most. The programmes were based around the acquisition of specific skills and/or strategies for dealing with specific situations.
Informing patients A survey of over 2,000 people currently receiving treatment for cancer in one of 34 hospital outpatient departments in the UK found that 87 per cent preferred to be given as much information about their illness as possible (both good and bad).
Information is required for different purposes;
understanding the presenting symptoms and/or disease, learning about available services and participating in decisions about treatment options.
People cannot express informed preferences about their care, choose to be involved in decisionmaking, or indeed choose not to participate, unless they are given sufficient and appropriate information.
Cancer patients often report experiencing a lack of information. Information materials often omit relevant details, fail to give a balanced view of different treatments, ignore uncertainties and rarely promote a participative approach to decision-making. Improving the quality of information materials is a key component of UK health policy and to oversee the development, content and availability of information, a cancer information advisory group is being set up.
Current sources of evidence-based cancer information include the Cancer Library which is available via the Cochrane Library. A cancer database is also being developed, and following evaluation it will be available via the NHS Direct website. The National Electronic Library for Health will also include cancer information specifically for patients.
Tailoring information to meet patients' needs has been advocated, and people with cancer have been found to prefer information based on their own medical records.
Evidence from a systematic review evaluating the effects of giving recordings or summaries of consultations to people with cancer suggests that providing a record can increase the amount of information recalled, satisfaction with the information given and might also encourage participation in subsequent consultations.
There is no clear evidence that recordings affect psychological health (either positively or negatively). Health professionals might want to consider offering either written summaries or audio-tapes of consultations to patients who have expressed a preference for this type of information.
However, the effects of such interventions will need to be carefully monitored as the evidence for their effectiveness is limited.
Health professionals are likely to need support if patients' information needs are to be met. Their learning needs are likely to include: placing a higher priority on patient information; understanding the patient's needs and the emotional aspects of learning;
helping patients to understand; learning from the patient and knowing about information sources.
Involving patients in decision-making As well as challenges to the health professional in meeting people's information needs, organisational challenges have also been recognised.
Recommendations to address these challenges include: treating patients' information needs as a core activity; ensuring adequate funding, devoting space and time to patient information; producing, Components of good-quality patient information Presents a clear statement of aims.
Is based on reliable information.
Is relevant, accurate, accessible, and comprehensible information.
Outlines uncertainties and gaps in knowledge.
Gives further sources of information.
implementing and reviewing guidelines on patient information and auditing methods of working.
The shared decision-making model is increasingly being advocated where a partnership between professionals and patients is encouraged.
However, people are likely to vary in the extent to which they want to be participate in decisionmaking.
One way to support patient involvement is through the use of decision aids. Decision aids provide information about options and outcomes which are relevant to each person's own health status and include decision boards, interactive videodiscs, computer programmes, audiotapes, and printed materials.
An overview of four trials examining the use of decision aids with cancer patients found some evidence to support their use in men with prostate cancer, but in women with breast cancer the benefits were less clear. Support for decision aids has also been found in a systematic review that included patients with a variety of different diagnoses.
The feasibility of implementing shared decisionmaking programmes has been tested in three feefor-service hospitals in the US.
Although clinicians were positive about the decision aids, referral rates were low. Time pressures were given as the main barrier to implementation and it is likely that similar barriers would exist in the UK. Although questions about the use of decision aids remain, they can provide a useful way of displaying and providing information about treatment options.
Health professionals could consider using appropriate decision aids, although further evaluation is recommended.
Effective Health Care is an independent report based on systematic reviews of the research evidence, produced by the NHS Centre for Reviews and Dissemination, York University.
REFERENCE 1Informing, Communicating and sharing decisions with people who have cancer. Effective Health Care 2000;6 (6).