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National Clinical Guideline Centre (UK). Drug Allergy: Diagnosis and Management of Drug Allergy in Adults, Children and Young People. London: National Institute for Health and Care Excellence (NICE); 2014 Sep. (NICE Clinical Guidelines, No. 183.)

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Drug Allergy: Diagnosis and Management of Drug Allergy in Adults, Children and Young People.

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10Providing information and support to patients

Patients are often left bewildered following a suspected allergic reaction to a drug. Many questions are asked and too often few are answered: Was the reaction predictable? Should I have been prescribed the drug? Will I have a more severe reaction next time? Which drugs do I need to avoid? Am I at risk when taking a new drug in future? How will this impact on my future treatment?

Fear of experiencing a further reaction can be heightened by a lack of information and worsened if the original reaction was severe. If the patient's record of the details of the allergic reaction is incomplete or the patient is not provided with written information, then the patient may either remain at risk of inappropriately receiving the same or a cross-reacting drug again, sometimes with catastrophic consequences, or a different drug may be incorrectly and unnecessarily avoided in the future, compromising the quality of future medical treatment. A drug allergy may not have been responsible for the original reaction, and so if drug allergy is excluded it is equally important that this information is conveyed to the individual in order to provide reassurance and enable optimal treatment to be prescribed in future.

Written information given to the patient at the time of the reaction, with details of drug, number of doses and the nature and severity of the reaction will avoid uncertainty and in many cases allow prescription of an alternative drug not known to cross-react with the original compound. Details of the drug and reaction are invaluable if the same drug is needed again and will also increase the accuracy of diagnosis if the patient requires referral for specialist drug allergy investigation.

10.1. Review question 1: What information and support should individuals with suspected drug allergy or their parents and carers receive?

10.2. Review question 2: What information and support should individuals who have had specialist investigations or their parents and carers receive?

Table 24. Summary of protocol characteristics of review question.

Table 24

Summary of protocol characteristics of review question.

A single search was conducted for the 2 review questions relating to patient information. The studies identified are presented in a single review, as the information was applicable to both questions.

Qualitative studies were identified as the main source of evidence for this review. The analysis of qualitative studies involves a search for common themes in participants' discourse. The themes from each study were extracted and it was then investigated how many studies identified the same theme or different themes. This evidence is summarised in Table 26.

For full details see the review protocol in Appendix C and study selection flow chart in Appendix E.

10.3. Clinical evidence

Eight qualitative studies were identified.6,21,22,50,68, 88,90,101 Studies which addressed adverse drug reactions were included if they discussed patients with drug allergies as a subgroup of the study population. Of the 8 studies, 16 directly applies to children; all other studies refer to adults with drug allergies. Summaries of study characteristics are presented in Table 25. In Table 26 common and individual themes are identified and summarised. Study quality is assessed according to criteria specific to qualitative research methods. These include clearly specified aims, study design, data collection and rigour of analysis. The complete list of quality characteristics is provided in the footnote to Table 25.

10.3.1. Study summary and quality

In Table 25 the included studies are briefly described. See Appendix H for full details of the studies. The numbers in the quality characteristics column refer to those characteristics, from a list of 14 items, which were assessed to be adequate or good.

Table 25. Summary of studies included in the review: study quality

10.3.2. Summary of themes

All themes identified by the authors of the included studies were extracted. Adverse drug reactions were not always separated from the subset ‘drug allergy’ but were included if the theme could be extrapolated to allergy. Nine themes are summarised in Table 26 below.

Table 26. Summary of themes and related studies

Table 26 indicates that the most frequently reported themes were ‘non-medical sources of information’, ‘implications of poor communication’, and ‘how to communicate’.

10.4. Economic evidence

Published literature

No relevant economic evaluations were identified.

See also the economic article selection flow chart in Appendix F.

10.5. Evidence statements

Clinical

  • Moderate quality evidence from 8 qualitative studies (n=1927) using semi-structured interviews, web posts, surveys and focus groups, identified 9 themes relating to patients' concerns about their own information sourcing, what their information requirements are and the consequences of poor communication. The 9 themes were:
    1. Poor explanations of possible adverse events or side effects of medications.
    2. Non-medical sources of information.
    3. Management and communication with regards to ADRs.
    4. Implications of poor communication for patients and carers.
    5. Feelings about the experience of having an ADR.
    6. Information needs.
    7. Communication skills.
    8. Linking signs and symptoms to a possible ADR.
    9. Problems with patient information literature.
    The themes that were identified by 4 out of 8 studies were ‘non-medical sources of information’, ‘implications of poor communication’, and ‘communication skills’. All other themes were reported in only 1 or 2 studies.

Economic

  • No relevant economic evaluations were identified.

10.6. Recommendations and link to evidence

Recommendations
17.

Discuss the person's suspected drug allergy with them (and their family members or carers as appropriate) and provide structured written information (see recommendation 10). Record who provided the information and when.

18.

Provide information in line with the recommendations in Patient experience in adult NHS services (NICE clinical guideline 138).

19.

Ensure that the person (and their family members or carers as appropriate) is aware of the drugs or drug classes that they need to avoid, and advise them to check with a pharmacist before taking any over-the-counter preparations.

20.

Advise people (and their family members or carers as appropriate) to carry information they are given about their drug allergy at all times and to share this whenever they visit a healthcare professional or are prescribed, dispensed or are about to be administered a drug.

Providing information and support to people who have had specialist drug allergy investigations

  • For recommendations on referral to specialist services see Chapter 12.

  • 21.

    Allergy specialists should give the following written information to people who have undergone specialist drug allergy investigation:

    • the diagnosis - whether they had an allergic or non-allergic reaction
    • the drug name and a description of their reaction (see recommendation 1)
    • the investigations used to confirm or exclude the diagnosis
    • drugs or drug classes to avoid in future
    • any safe alternative drugs that may be used.
    22.

    Explain to people in whom allergy to a drug or drug class has been excluded by specialist investigation that they can now take this drug or drug class safely and ensure that their medical records are updated.

    Relative values of different outcomesThe outcomes identified by the GDG as most important for decision-making were examples of information or support that led to an improvement in care and the management of drug allergy.
    The studies included in the review examined many different types of interventions and describe a variety of resulting outcomes. However some common themes emerged around information needs and methods of communication which demonstrated both good and bad practice. The GDG considered both the positive and negative outcomes reported in the studies when drawing up recommendations on what information should be given to support patients and the method of communication.
    Trade-off between clinical benefits and harmsThe GDG agreed that information about drug allergy given to patients is often ad hoc, and written information is rarely given.
    Providing information that would result in prescribing errors prevented and inappropriate medication being avoided would enable patients to avoid future drug allergic reactions and reduce the number of visits to their GP and emergency admissions to hospital.
    Providing information on details of the drug taken and the reaction along with any subsequent specialist investigations undertaken would improve communication between healthcare professionals and both help to prevent people without a drug allergy being incorrectly labelled as having an allergy, and ensure that people with a drug allergy avoid drugs to which they may be allergic. The gathering of this information is necessary in order to complete the patient's medical record (see Documentation, Chapter 9), but once collected it should also be shared with the patient.
    The importance of communication with patients who have had a suspected or confirmed drug allergy was highlighted by studies which described the fear of having a repeat reaction and the anxiety experienced by parents of children with a suspected drug allergy. The group agreed that a dialogue between the healthcare professional and the patient who has had a suspected or confirmed allergic reaction, or their carer, is important to ensure that opportunities are given to ask questions and to provide reassurance as well as practical advice.
    Economic considerationsNo relevant economic evidence was identified. The GDG did not prioritise this question for original economic analysis.
    The GDG expected that the impact on time and resource use of providing information to patients would be very small, and would be likely to be offset by an improvement in quality of life. Specifically, provision of information will help people to avoid the suspected allergen in the future, thereby reducing future costs to the health service and future impacts on quality of life through inadvertent repeat exposure. Good provision of information and discussion with a patient at the first opportunity may also reduce time spent by healthcare professionals in providing additional information and explanation to people on future occasions.
    Quality of evidenceAll of the included studies were qualitative research studies. The quality of each study was assessed in terms of confidence in the study, measured against 14 quality criteria specific to qualitative studies. Seven of the 8 included studies were given a ‘moderate’ level of confidence and 1 was given ‘low’ confidence. The 3 most frequently reported themes were non-medical sources of information, the implications of poor communication and how to communicate. The GDG acknowledged the implications of poor communication with patients, especially the fear felt by patients, and stressed the importance of providing clear and comprehensive information at both non-specialist and specialist visits. The GDG also referred to the recommendations given in NICE clinical guideline138 ‘Patient experience in adult NHS services’122 to emphasise good patient experience. Recommendations on checking to ensure that patients have the necessary knowledge, and on giving patients the responsibility to carry and share their drug allergy information are intended to minimise patients' fear, enhance communication between patients, clinicians and pharmacists, and enable the patient to better manage their confirmed or suspected drug allergy.
    Other considerationsThis review is closely connected with the review on documentation strategies (see Chapter 9). The quality of patient information can be improved through better documentation strategies and vice versa. The recommendations given here therefore advocate completion and maintenance of drug allergy documentation by healthcare professionals, provision of information to patients with effective communication and retention of that information by the patients.
    Copyright © National Clinical Guideline Centre, 2014.
    Bookshelf ID: NBK274145

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