Mind the Gap has been developed and funded by Novartis Pharmaceuticals UK Limited . This educational website is intended for UK healthcare professionals only.

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Let's close the patient knowledge gap 

Finding the right time to discuss breast cancer recurrence and the need for adjuvant treatment with your patients can be difficult. The nature and volume of this information can be overwhelming for patients to hear; however it is crucial they continue their journey with as much information as possible about potential outcomes, treatment decisions and side effects. A European survey of 547 post-menopausal women with early breast cancer showed:

41 percent icon

of patients were not involved in the decision to start adjuvant treatment2

only 57 percent

received information about possible side effects2

only 15 percent

received information about the possible long-term effects of treatment2

just 26 percent

received information about the risk of their cancer returning2

Miscommunication can have a negative effect on patient outcomes

A recent survey of oncologists, oncology nurses and HR+/HER2- patients showed that:*

56 %

of patients said their nurse never asks about quality of life during follow-up appointments
Despite 92% of nurses believing the topic is addressed7

34 %

of patients said their oncologist never asks about quality of life during follow-up appointments
However, 88% of oncologists believe this topic is addressed7

There is a need to address this patient knowledge gap and improve communication between healthcare professionals and patients, ensuring patients remain informed at every stage of their journey to reduce the risk of their breast cancer returning.


Conversations with your patients 

Each appointment with your breast cancer patients should cover, or reiterate, their risk of recurrence and the importance of adhering to their adjuvant treatment.

It has been widely demonstrated that patient–physician communication plays a primary role in adherence to any medical treatment.4

Read on below for important topics of discussion which could benefit your patients:


crucial topics conversation

The risk of recurrence 

one in five women with breast cancer experience recurrence

It’s important that all patients at any stage of breast cancer have their risk of recurrence assessed, not just those who are considered high risk. Ensure your patients are aware of the prognostic factors which influence recurrence, such as:





nodal involvement


horome receptor status


treatment of the primary tumour


Factors associated with later recurrence**

In a study from Pedersen et al. (2021), recurrences continued to occur up to 32 years after primary diagnosis. Women with high lymph node burden, large tumour size, and oestrogen receptor–positive tumours had increased risk of late recurrence.6 It is apparent that as the number of nodes that are involved increases, so too does the risk of recurrence. However, it ought to be noted that patients with N0 are also at risk of recurrence and this risk persists, continuing to increase, for many years after initial diagnosis or surgery. 

The cumulative incidence 10-25 years after diagnosis increased with increasing lymph node involvement at baseline, ranging from 12.7% (95% CI = 11.9% to 13.5%) in patients with T1N0 to 24.6% (95% CI = 20.7% to 28.6%) for patients with T2N4-9 disease.6

lymph node status
number at risk

Nonadherence and treatment discontinuation 

Low adherence to adjuvant endocrine therapy is linked with higher rates of recurrence and all-cause mortality.8

The following negative clinical effects of low and non-adherence have been demonstrated in most breast cancer studies.9

  • Increased risk of distant metastases
  • Increased risk of breast cancer recurrence
  • Decreased disease-free survival
  • Increased risk of mortality

As a healthcare provider, it has been recognised that you can have a significant effect on your patients’ adherence by delivering interventions where necessary.1


conversation topic
61% increase in the risk of a future disease free survival event for patients who have a compliance score <90%

Factors affecting adherence to adjuvant therapy1

Patient-related, therapy-related, or health care system–associated factors may affect adherence and non-adherence is usually a result of a combination of these factors.

To identify patients who are likely to be non-adherent and who may benefit from more careful monitoring and support, recognition of the factors associated with lower adherence is important. Consider how as a healthcare professional, you can address these factors to improve patient adherence to therapy: 

Healthcare provider-related factors1

  • Importance of adherence may not be emphasised
  • Potential difficulties of long-term adherence may not be discussed
  • Lack of patient support in dealing with side effects
  • Patient may not be satisfied with health care provider

Patient-related factors1

  • Remembering to take medication (older and younger age groups associated with non-adherence)
  • Poor awareness of therapeutic benefit
  • Inconvenience
  • Difficulty swallowing pills
  • Depression
  • Antidepressant use
  • Mastectomy
  • Lack of belief in treatment

Treatment-related factors1

  • Drug adverse effects
  • Side effects may be underestimated by physician
  • Unexpected effects associated with non-adherence
side effects of treatment

Side effects of treatment 

Side effects of adjuvant treatment can contribute to a patient’s decision to cease their medication, particularly if the patient is unprepared for the severity of the side effects or if they have not been educated on how best to manage them. 

In a study of 881 women on adjuvant tamoxifen, adherence was significantly lower among women who experienced side effects about which they had not been informed in advance than among women who had been informed about possible side effects (62% vs. 85%, p < 0.0001).11 Physicians may underestimate side effects or may selectively mention only side effects for which they are likely to see difficulties.1

Also, if symptoms related to the underlying disease are absent and if the patient perceives that the medication may no longer be necessary or that the perceived benefits no longer outweigh the side effects and risks experienced, then the patient may make a conscious decision not to follow the physician’s recommendation in the long term.11


Quality of Life on treatment 

A recent study showed that 1/3 of patients said their oncologist never ask about their quality of life at follow-up appointments.7 Keeping up with how your patients are feeling while on their treatment, making suggestions on how to ease the side effects and reaffirming the benefits of adjuvant therapy can help your patients understand the need to adhere to treatment.7

It has been recommended that, in order to enhance HCP-patient communication, quality of life should be regularly and formally assessed with validated, early breast cancer-specific quality of life questionnaires that closely monitor treatment side effects.7

Perceptions of quality of life often differ between patients and healthcare professionals.7 For example, a patient may think getting out of bed with a headache each day amounts to a poor quality of life, whereas HCPs might consider that to be good on a clinical scale. Open conversations with your patients can help to discern what they look for in an acceptable quality of life while undergoing treatment. This will also allow your patients to understand what you would consider an acceptable quality of life.

quality of life on treatment

Closing the patient knowledge gap: communicating the risk of recurrence

It’s important that you and your patients are aligned on the goals of treatment, potential side effects and their impact on quality of life so that your patients adhere to treatment, reducing their risk of recurrence.

External resources:

For healthcare professionals:

One Education – Develop your soft skills

The development of soft skills is vital in healthcare. These skills can help to set patients’ minds at ease, as well as help manage HCP stress and burnout. 

Cancer Research UK - Health professionals resources

Access Cancer Research UK’s evidence-based information, tools and resources to support you in delivering best practice in prevention and early diagnosis.

Cancer Focus – Cancer conversations course

An e-learning module to help healthcare professionals empower parents to communicate with their children about their cancer. You will need to register.

Breast Cancer Now

Visit Breast Cancer Now’s website for helpful resources, research updates, evidence-based information and support tools tailored for healthcare professionals. Stay up to date with the latest advancements and enhance your breast cancer care expertise to better support your patients.

For patients:

Macmillan Cancer Support – Support for your patients

Information about treatment, money, mental health and more, this guide can help you in the support of your breast cancer patients. 

OWise – The patient breast cancer app

OWise supports patients from their first diagnosis. It provides safe and reliable information while collating valuable insights about their day-to-day wellbeing to assist healthcare professionals in making informed decisions about ongoing treatment. 

*Data were collected between July 2020 and May 2021 via a cross-sectional international online survey of 277 oncologists, 225 oncology nurses and 467 patients with HR+/HER2− advanced breast cancer.
**Recurrence is considered ‘late’ when it recurs 10-32 years from the primary breast cancer diagnosis.


  1. Verma S, Madarnas Y, Sehdev S, Martin G, Bajcar J. Patient adherence to aromatase inhibitor treatment in the adjuvant setting. Curr Oncol. 2011 May;18 Suppl 1(Suppl 1):S3-9. doi: 10.3747/co.v18i0.899. PMID: 21698059; PMCID: PMC3119895. [Last accessed: February 2024]
  2. Yvonne Wengström, Matti Aapro, Susanna Leto di Priolo, Helena Cannon, Vasoulla Georgiou, Patients’ knowledge and experience of adjuvant endocrine therapy for early breast cancer: A European study, The Breast, Volume 16, Issue 5, 2007, Pages 462-468, ISSN 0960-9776, https://doi.org/10.1016/j.breast.2007.02.007. [Last accessed: February 2024]
  3. BMJ 2012; 344 doi: https://doi.org/10.1136/bmj.e4085 (Published 12 June 2012) [Last accessed: February 2024]
  4. Rosso R, D'Alonzo M, Bounous VE, Actis S, Cipullo I, Salerno E, Biglia N. Adherence to Adjuvant Endocrine Therapy in Breast Cancer Patients. Curr Oncol. 2023 Jan 21;30(2):1461-1472. doi: 10.3390/curroncol30020112. PMID: 36826073; PMCID: PMC9955792. [Last accessed: February 2024]
  5. Witteveen A, Vliegen IMH, Sonke GS et al (2015) Personalisation of breast cancer follow-up: a time-dependent prognostic nomogram for the estimation of annual risk of locoregional recurrence in early breast cancer patients. Breast Cancer Res Treat 152:627–636. doi:10.1007/s10549-015-3490-4 [Last accessed: February 2024]
  6. Rikke Nørgaard Pedersen, Buket Öztürk Esen, Lene Mellemkjær, Peer Christiansen, Bent Ejlertsen, Timothy Lee Lash, Mette Nørgaard, Deirdre Cronin-Fenton, The Incidence of Breast Cancer Recurrence 10-32 Years After Primary Diagnosis, JNCI: Journal of the National Cancer Institute, Volume 114, Issue 3, March 2022, Pages 391–399, https://doi.org/10.1093/jnci/djab202 [Last accessed: February 2024]
  7. Fatima Cardoso, Julie Rihani, Victoria Harmer, Nadia Harbeck, Ana Casas, Hope S Rugo, Peter A Fasching, Adam Moore, Joanna de Courcy, Purnima Pathak, Sina Haftchenary, Dawn Aubel, Eva Schumacher-Wulf, Quality of Life and Treatment-Related Side Effects in Patients With HR+/HER2− Advanced Breast Cancer: Findings From a Multicountry Survey, The Oncologist, Volume 28, Issue 10, October 2023, Pages 856–865, https://doi.org/10.1093/oncolo/oyad207 [Last accessed: February 2024]
  8. Smith SG, Green SMC, Ellison R, et al Refining and optimising a behavioural intervention to support endocrine therapy adherence (ROSETA) in UK women with breast cancer: protocol for a pilot fractional factorial trial BMJ Open 2023;13:e069971. doi: 10.1136/bmjopen-2022-069971 [Last accessed: February 2024]
  9. Inotai A, Ágh T, Maris R, et al. Systematic review of real-world studies evaluating the impact of medication non-adherence to endocrine therapies on hard clinical endpoints in patients with non-metastatic breast cancer. Cancer Treat Rev. 2021;100: 102264. doi: 10.1016/j.ctrv.2021.102264. [Last accessed: February 2024]
  10. Chirgwin JH, Giobbie-Hurder A, Coates AS, et al. Treatment Adherence and Its Impact on Disease-Free Survival in the Breast International Group 1-98 Trial of Tamoxifen and Letrozole, Alone and in Sequence. J Clin Oncol. 2016;34(21): 2452-9. doi: 10.1200/JCO.2015.63.8619. [Last accessed: February 2024]
  11. Fallowfield L. Acceptance of adjuvant therapy and quality of life issues. Breast. 2005;14:612–16. doi: 10.1016/j.breast.2005.08.012. [Last accessed: February 2024]

Reporting side-effects
Adverse events should be reported. Reporting forms and information can be found at www.mhra.gov.uk/yellowcard. Adverse events should also be reported to Novartis via [email protected] or online through the pharmacovigilance intake (PVI) tool at www.novartis.com/report. If you have a question about the product, please contact Medical Information on 01276 698370 or by email at [email protected]

©2024 Novartis Pharmaceuticals UK Ltd - UK | March 2024 | 304498

Mind the Gap has been developed and funded by Novartis Pharmaceuticals UK Limited 

This website is part of a programme that is funded by Novartis Pharmaceuticals UK Limited. Novartis Pharmaceuticals UK Limited is a private limited liability company registered in England and Wales under number 119006. Registered office 2nd Floor, The WestWorks Building, White City Place, 195 Wood Lane, London, W12 7FQ. Use of this website is governed by our Terms of Use and the Cookies and Privacy Policy.

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