IN-DEPTH REVIEW OF RESEARCH

Study background

Hormone therapy is an important part of treatment for many patients with hormone receptor-positive breast cancer.  For early-stage breast cancer patients, adjuvant hormone therapy may reduce the risk of local and distant recurrence. Current guidelines recommend that hormone therapy be continued for 5 years. However, recent research indicates that patients benefit from continuing adjuvant hormone therapy for up to 10 years (see Guidelines). Hormone therapy is also a common part of treatment for patients who are diagnosed with metastatic hormone receptor-positive breast cancer.

Despite the known benefits of hormone therapy, many breast cancer patients either do not begin therapy or do not complete treatment due to concern about side effects. Not beginning treatment or stopping it early is known to increase breast cancer-related deaths and associated medical costs.
 

Researchers of this study wanted to:

Understand why patients do not begin hormone therapy, to describe side effects and how patients manage them, and understand how healthcare providers impact patient adherence to hormone therapy.
 

Populations looked at in this study

More and more breast cancer patients participate in online groups where they find support and often discuss medical care, particularly treatment side effects and healthcare providers’ attitudes. The researchers tapped into this online community to gather data.

Study design

Advocates were closely involved in the study design.  Nine patient advocates (6 women and 3 men) contributed to the study design. They were selected based on their personal breast cancer history, hormone therapy use, advocacy and research experience, and participation in online breast cancer groups.

Advocates and medical experts designed a novel survey of 33 questions based on decision-making and decision needs regarding hormone therapy. A link to the survey was posted on the personal blog, Facebook and Twitter accounts of the senior author (FORCE advisory board member, Deanna Attai, MD) and was shared by the Dr. Susan Love Research Foundation Army of Women email newsletter and social media accounts. The researchers relied on those who were interested to share the survey with others.  The survey was open from May 12, 2019 to July 14, 2019.
 

Study findings

Of the 2,518 respondents, 111 (4%) reported that they did not begin hormone therapy that was recommended.

The primary reason reported was concerns about potential side effects. Other reasons included:

• the impact of hormone therapy on overall health.
• a belief that the perceived benefits did not outweigh the risks.
• concerns about the risk of secondary cancers.
• not wanting to take prescription medications.
• cost.

Of the 2,407 participants who began treatment, 2,353 were women and 54 were men. Aromatase inhibitors were the most common treatment, followed by tamoxifen. Of participants who began treatment:

• 2,194 (91%) reported side effects related to hormone therapy.
  • Side effects were more often reported by women than men. These included:    
    • cardiovascular issues
    • cognitive/mood changes
    • eye problems
    • general physical changes
    • gastrointestinal (stomach and digestive tract) problems
    • genitourinary (genital and urinary organs) issues
    • muscle/skeletal changes
    • sexual complications
    • vasomotor (blood vessels) changes
    • the high cost of medication
• 799 participants (33%) stopped taking hormone therapy before completing the entire regimen. 
  • This included 722 (31%) of the women and 27 (50%) of the men.
    • 213 (9%) of all participants who began hormone therapy reported that they took a break from treatment or stopped treatment early, either against the advice of their healthcare providers or without telling their healthcare providers.
• 642 participants (31%) said that their hormone therapy side effects were not taken seriously by their health care providers.
  • This does not include the 145 patients (7%) who reported side effects but did not discuss or attempt to talk to their healthcare providers about them.
• When patients were asked what information their healthcare providers shared with them to support them and help them manage side effects, responses included:
  • referral to a website with information about side effects and how to manage them.
  • specific office visits (in person or virtual) to discuss side effects.
  • access to an oncology social worker.
  • peer support.
  • an app that tracks side effects and reports them to health care providers.
  • access to a financial counselor.
• Participants reported on what helped them manage side effects from hormone therapy. These included:
  • a healthy diet, exercise and physical therapy.
  • other therapies such as yoga, acupuncture and meditation.
  • vitamins, other dietary supplements and herbs, including medical marijuana.
     

Strengths and limitations

Strengths:

• The survey was designed with significant patient input.  
• This study included many respondents. Most were in their first 5 years of hormone therapy. Thus, these reflect current, modern-day patient experiences of taking hormone therapy. This also reduces the likelihood of recall bias (when past events are remembered incorrectly).
• The population studied openly discussed their healthcare and related experiences in online forums.

Limitations:

• As with any survey, results are likely biased by those who responded.  These participants may be more likely to share their experiences.  As such, they may not reflect the experiences of other patients about hormone therapy.
• Participants in this study were more likely to be white women who are younger, college educated and of higher socioeconomic status than the general population. The findings of this study may not apply to a diverse population that is more representative of the US population.
• The researchers do not know if participants stopped treatment early because of the severity of their side effects, their ability to manage side effects or other reasons.
   

Context

While this study found that most participants understood the goals of hormone therapy, this understanding was not correlated with patients who were starting or continuing therapy.  Understanding the importance of hormone therapy may not enough to ensure that patients begin and continue therapy given that most of them experience side effects that impact quality of life.
 

Conclusions

Most breast cancer patients who begin hormone therapy have treatment-related side effects. The majority of patients did not experience relief from these side effects. This suggests that more effective tools to manage side effects and strategies to communicate these concerns to healthcare providers are needed. 
 

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posted 1/19/20