What information should be provided to patients and carers about the cancer therapy?

From Cancer Guidelines Wiki

Introduction

The provision of treatment information to patients and caregivers is an essential part of cancer therapy. Verbal and written information assists the patient and/or carer to understand the aims, possible adverse effects and likely outcomes of cancer treatment. The provision of medication information supports adherence to self-administered medication. All healthcare professionals have a role in providing the appropriate information to a patient with respect to treatment however the role of the doctor, nurse and pharmacist in providing this information may vary across institutions.


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Evidence Summary

Providing patients and their carers with verbal and written information supports the patient and their carer to comprehend the aims, effects and likely outcomes of the proposed treatment.[1][2] Provision of consumer appropriate information and discussion of a proposed treatment enables patients to ask questions about their treatment and to provide informed consent for cancer therapy. Table 3 outlines information that should be provided to patients and their carers.

Patients who understand their treatment regimen and therapy can be valuable in enhancing the medication safety process. Patients who know the name of the medication they are receiving and what it looks like may be valuable in identifying discrepancies prior to administration.[3]


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Recommendations

Consensus-based recommendationQuestion mark transparent.png

All patients should receive verbal and written information about their treatment, regardless of the treatment location. This should take place at a time when the patient and carer are able to listen and comprehend the information and ask questions about the treatment (Goldspiel et al, 2015). Information should be given on the first treatment visit and reinforced on subsequent visits. The type and content of information that has been provided and discussed with the patient should be recorded in the patient’s healthcare record.


The role the doctor, nurse and pharmacist have in providing education should be clearly defined within institutions, including who has primary responsibility for specific education tasks (Neuss et al, 2017; Goldspiel et al, 2015; Polovich et al, 2014). The legal and professional requirements of each discipline in the provision of patient information must be considered and patient education must be carried out by appropriately trained staff.


Patients receiving oral cancer therapy should be provided with additional information stated in Table 4 in accordance with the Society of Hospital Pharmacists of Australia (SHPA) Standards of Practice for the Pharmaceutical Care of Patients Receiving Oral Chemotherapy (The Society of Hospital Pharmacists of Australia Committee of Specialty Practice in Cancer Services, 2007) and with the American Society of Clinical Oncology (ASCO) and the Oncology Nursing Society (ONS) Chemotherapy Safety Standards (Neuss et al, 2017).


Consumer medication information leaflets (CMI’s) must be provided if available and appropriate, however the nature and the context in which cancer therapies are used often limits their availability or suitability. Guidance on how to use CMI’s may be found in the SHPA Standards of Practice for the Provision of Consumer Medicines Information by Pharmacists in Hospitals (The Society of Hospital Pharmacists of Australia Committee of Specialty Practice, 2007).


Information resources should be suitable to describe the treatment being provided and the patients’ health literacy level. Locally developed information sources should be reviewed and endorsed by a suitable committee that includes consumer input. Information on cancer treatment and protocols are available from established organisations such as eviQ Cancer Treatments Online (Cancer Institute NSW), the Cancer Council and community-based organisations (e.g. the Leukaemia Foundation). Some of these organisations also provide translated resources for people from culturally and linguistically diverse communities.


Patients requesting information about complementary therapies should receive adequate and unbiased information about complementary therapies and the potential impact that using complementary therapy may have on the treatment they are receiving and their disease. A number of resources are available to guide these discussions and support requests from patients for information (Cancer Council Australia, May 2015; Clinical Oncology Society of Australia, May 2013).


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It is useful to provide patients with a list of websites appropriate for them to obtain further evidence-based information on their disease and treatment.


The provision of information should be coordinated across the disciplines to ensure the patient and/or carer receives information that is consistent, appropriate and relevant to their treatment. Education should include not only the patient but also the family, caregivers or any other persons who may be involved in the care and/or support of the patient (Neuss et al, 2017; Belderson and Billett, 2017; Goldspiel et al, 2015).


Written information in languages other than English should be provided if available. Appropriately trained interpreters should be used if required when providing education/information about treatment.


Medication lists, diaries and calendars can assist with patient adherence and the recording of any adverse effects.


Patients and caregivers can play a valuable role in error prevention in the administration checking process. Explaining the checking process and what is being administered while encouraging patients to let nursing staff know if they observe anything different from the routine administration process can help identify potential errors. This needs to be balanced by the patient’s willingness and capability to support this role and provide input (Schwappach and Wernli, 2010).

(Goldspiel et al, 2015)[4] ;(Neuss et al, 2017)[1] ;(Polovich et al, 2014)[5] ;(Society of Hospital Pharmacists of Australia Committee of Specialty Practice in Cancer Services, 2007)[6] ;(Society of Hospital Pharmacists of Australia Committee of Specialty Practice, 2007)[7] ;(Cancer Institute NSW, 2016)[8] ;(Cancer Council Australia, 2015)[9] ;(Clinical Oncology Society of Australia, 2013)[10] ;(Belderson and Billett, 2017)[11] ;(Schwappach and Wernli, 2010)[12]


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Tables

Table 3: Suggested information to be provided to patients

All information should be provided as verbal and written information.
Diagnosis and goals of treatment.
  • Information regarding the patients diagnosis.
  • Goals of treatment (e.g. curative, palliative).
The treatment process:
  • Expected location of treatment (e.g. day-care, ward).
  • Expected schedule.
  • Expected duration of appointments, laboratory tests and other procedures.
  • The method of delivery of treatment (e.g. intravenous, oral) and associated delivery devices (e.g. portacath).
  • Other therapeutic modalities involved (e.g. concurrent radiation).
  • Overall treatment length and expected follow-up.
Name and purpose of each cancer medication and related supportive medication the patient will receive.
  • The generic name of the medication should be given however other common names the medication is known by (e.g. trade names) should also be provided where appropriate.
  • The phonetics of each medication can be useful for patients to aid pronunciation.
  • Where the medication forms part of a protocol, then the protocol name should also be provided.
  • Where appropriate, patients should be given information regarding potential interactions with other medications or foods.
General and specific side effects expected from the treatment to include:
  • Immediate effects (e.g. hypersensitivity reactions, extravasation).
  • Short term effects (e.g. nausea and vomiting, neutropenia, alopecia).
  • Long term effects (e.g. infertility, carcinogenesis, cardiotoxicity).
  • Where appropriate, information about potential teratogenic effect of cytotoxic agents and pregnancy precautions should be given.
The management of side effects:
  • Methods for preventing (e.g. mouth care and mucositis) and managing side effects (e.g. anti-diarrhoeals and diarrhoea).
  • When to report side-effects. Patients should be given adequate information to understand which side effects are potentially serious and require urgent medical attention.
Procedures for handling body fluid and waste.
How and when to take each medication on discharge.

It is particularly important to differentiate between those medications which are used as treatment or to prevent side effects and those which only need to be used if symptoms develop. This information should include:

  • What to do if the patient misses one or more doses.
  • What to do if the patient vomits after taking a dose.
  • The maximum daily dose for “when required” medications.
  • The appropriate safe handling of medications.
  • The appropriate temperature and safe storage conditions.
  • The potential interactions with other medications or food.
  • How to properly dispose of medication, containers and supplies.
The need for, and how to obtain, further supplies of supportive therapy and other medication.

It is essential that patients are aware of medication that can be obtained through a GP and those that need to be obtained through the treating oncologist/haematologist.

Details of appropriate and readily accessible 24 hour contact.

The patient should be given instructions on how, when and whom to contact.

A plan for monitoring and follow-up, including appointments with clinicians and/or blood tests.


Table 4: Additional information to be provided to patients receiving oral cancer medication including chemotherapy and targeted therapy

The need to swallow tablets/capsules whole and not to chew them, unless directed otherwise.
  • The risks of crushing tablets and mixing with food or emptying the contents of capsules into food or drink must be highlighted.
  • Where manipulation of the medication (e.g. halving tablets or suspending tablets or the contents of the capsule) is appropriate, the patient or their carer should be provided with clear instructions on how to safely do so.
How to take the medication with respect to food (if appropriate).
What to do if the patient misses one or more doses.
What to do if the patient vomits after taking a dose.
Possible medication/medication and medication/food interactions.
  • Information regarding common medication and medication/food interactions should be provided.
  • Patients should be advised to consult with their doctor and/or pharmacist prior to stopping or commencing any medication.
Instructions on what side effects may require an immediate suspension of therapy or urgent medical attention. e.g. severe diarrhoea with capecitabine.
Details of appropriate and readily accessible 24 hour contact to whom patients can direct queries.

This should include medical, nursing and pharmacy staff.

Principles of safe handling, storage and disposal.

Patients must be advised:

  • To store all medications including any requiring refrigeration, in a secure manner away from children.
  • To store empty containers and unused medicine in a strong designated container or bag and return these to the hospital or pharmacy for appropriate disposal.
  • To avoid or minimise the handling of tablets/capsules by family members/carers.
  • To wash hands after handling tablets/capsules.
A plan for monitoring and follow-up, including appointments with clinicians and/or blood tests.


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References

  1. 1.0 1.1 Neuss MN, Gilmore TR, Belderson KM, Billett AL, Conti-Kalchik T, Harvet BE, et al. 2016 Updated American Society of Clinical Oncology/Oncology Nursing Society Chemotherapy Administration Safety Standards, Including Standards for Pediatric Oncology. Oncol Nurs Forum 2017 Jan 6;44(1):31-43 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/28067033.
  2. Carrington C, Stone L, Koczwara B, Searle C, Siderov J, Stevenson B, et al. The Clinical Oncological Society of Australia (COSA) guidelines for the safe prescribing, dispensing and administration of cancer chemotherapy. Asia Pac J Clin Oncol 2010 Sep;6(3):220-37 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20887505.
  3. Weingart SN, Price J, Duncombe D, Connor M, Sommer K, Conley KA, et al. Patient-reported safety and quality of care in outpatient oncology. Jt Comm J Qual Patient Saf 2007 Feb;33(2):83-94. Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/17370919.
  4. Goldspiel B, Hoffman JM, Griffith NL, Goodin S, DeChristoforo R, Montello CM, et al. ASHP guidelines on preventing medication errors with chemotherapy and biotherapy. Am J Health Syst Pharm 2015 Apr 15;72(8):e6-e35 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/25825193.
  5. Polovich M, Olsen M and LeFevre KB. Chemotherapy and Biotherapy Guidelines and Recommendations for Practice (Fourth Edition). Pittsburg: Oncology Nursing Society; 2014.
  6. Society of Hospital Pharmacists of Australia. Committee of Specialty Practice in Cancer Services. Standards of Practice for the Provision of Pharmaceutical Care of Patients Receiving Oral Chemotherapy for the Treatment of Cancer. J Pharm Pract Res 2007;37,147-150.
  7. Society of Hospital Pharmacists of Australia. Committee of Specialty Practice. Standards of Practice for the Provision of Consumer Medicines Information by Pharmacists in Hospitals. J Pharm Pract Res 2007;37,56-58.
  8. Cancer Institute NSW. eviQ Cancer Treatments Online. [homepage on the internet]; 2017 Nov 24 [cited 2016 Sep]. Available from: https://www.eviq.org.au.
  9. Cancer Council Australia. Understanding Complementary Therapies. A guide for people with cancer, their families and friends.; 2015 [cited 2016 Sep] Available from: http://www.cancer.org.au/content/about_cancer/treatment/Understanding%20complementary%20therapies_booklet_May%202015.pdf.
  10. Clinical Oncology Society of Australia. Position statement. The use of complementary and alternative medicine by cancer patients.; 2013 [cited 2016 Sep] Available from: https://www.cosa.org.au/media/1133/cosa_cam-position-statement_final_new-logo.pdf.
  11. Belderson KM, Billett AL. Chemotherapy safety standards: A pediatric perspective. Pediatr Blood Cancer 2017 Jun;64(6) Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/28306217.
  12. Schwappach DL, Wernli M. Medication errors in chemotherapy: incidence, types and involvement of patients in prevention. A review of the literature. Eur J Cancer Care (Engl) 2010 May;19(3):285-92 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19708929.

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