Recommendations
27.

Give patients having anticoagulation treatment verbal and written information about:

  • how to use anticoagulants
  • duration of anticoagulation treatment
  • possible side effects of anticoagulant treatment and what to do if these occur
  • the effects of other medications, foods and alcohol on oral anticoagulation treatment
  • how anticoagulants may affect their dental treatment
  • taking anticoagulants if they are planning pregnancy or become pregnant
  • how anticoagulants may affect activities such as sports and travel
  • when and how to seek medical help.
Relative values of different outcomesPatient perception (including knowledge and attitude) of their condition was felt to be the most important outcome by the GDG, followed by quality of life, recurrent VTE, major bleeding, percentage time in therapeutic range and post-thrombotic syndrome.
Trade off between clinical benefits and harmsProviding education to patients about their condition could increase patient knowledge and awareness and potentially lead to improved patient outcomes. Appropriate patient information is part of good medical practice and may have positive outcomes such as increased patient satisfaction and improvement in quality of life which may not be reported in the evidence reviewed. The GDG considered this potential improvement in outcomes to outweigh any time or cost associated with providing this information. Furthermore, improved understanding of treatment has the potential to reduce anxiety and improve patient participation.

However, there is potential for harm if this information is not provided, for example, resulting in low adherence with anticoagulant treatment or delay in seeking medical help due to lack of awareness of side effects.
Economic considerationsNo economic evidence was found for this question. Providing patients with relevant information is not considered to generate significant costs and could lead to a more efficient use of resources, for example patients making the most efficient use of treatment.
Quality of evidenceIt is particularly difficult to interpret studies on the impact of information provision. Information provision could only be expected to be effective if the information is relevant, acceptable to patients and provided using an effective medium.

The only outcomes where evidence was found were; the percentage of time within target INR range, recurrent VTE, compliance and patient knowledge. The quality of evidence for these outcomes was of either low or very low quality. Many outcomes identified as important by the GDG were not reported.

The evidence was mostly from studies in patients using VKA in European countries other than the UK. Each study had different types and intensity of information provided in the control and intervention groups. It is uncertain whether the evidence is directly applicable to VTE patients in the UK. In addition, it is difficult to interpret the clinical importance of outcomes, for example, a difference in the percentage of time that INR was within target range or knowledge score (how much difference between arms would be clinically important?) There were also serious limitations in how the studies were designed and conducted.

No economic evidence was available on this question.
Other considerationsInformation should be appropriate to individual patients and be sensitive to those with visual or hearing impairment, physical or learning disabilities. Language barriers, such as difficulties with reading, understanding or speaking English should not be a reason for non-provision of information. Provision on a national basis of translated documents should be undertaken. A source of further information as required is suggested.

For patients with cancer, information that is relevant to them, such as the increased risk of recurrent VTE in people with cancer should be discussed.

The GDG were aware that there are already sources of information available for patients who take oral anticoagulation. For example, the National Patient Safety Agency have produced a booklet titled ’Actions that can make oral anticoagulant therapy safer: Information for patients and carers’ 169. Nevertheless, it is important to tailor information to the needs of individual patients.
Although the evidence found was only for patients prescribed VKA the recommendation is also applicable for patients prescribed LMWH.
The GDG discussed that it may be difficult for patients (or carers) to commence personal injections (or injecting another person) and that they may need support and training in order to do so. The GDG also discussed the importance of emphasising the safe disposal of sharps to the patient, but felt this was covered in another guideline-CG02, Infection Prevention and Control in the Community Setting 166.
This was discussed as a potential key priority for implementation as some GDG members felt that not all patients were receiving the required information.

From: 11, Patient information

Cover of Venous Thromboembolic Diseases
Venous Thromboembolic Diseases: The Management of Venous Thromboembolic Diseases and the Role of Thrombophilia Testing [Internet].
NICE Clinical Guidelines, No. 144.
National Clinical Guideline Centre (UK).
Copyright © 2012, National Clinical Guideline Centre.

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