Researchers in the UK analyzed information provided directly by 625 early breast cancer survivors or through electronic patient health records to measure the type and level of the unmet physical and psychosocial needs. An unmet need generally refers to care or help you require but don’t get, for any number of reasons.
In the UK, like in other countries, breast cancer survivors represent the largest population of cancer survivors. Though many of these women fare well after initial treatment (surgery, chemotherapy, radiation, etc.), some experience long-term physical and emotional impact. The study published early 2017 in the British Journal of Cancer reviewed patient reported physical, emotional, family, practical and spiritual needs.
A LITTLE BIT ABOUT THE PATIENTS
91% of patients in the study had been diagnosed with Stage I or II breast cancer. 83% were hormone receptor positive and 81% were taking anti-estrogen treatment. About 70% of women in the study were post-menopausal, and the majority were taking an aromatase inhibitor (AI) to prevent breast cancer from coming back. In this study, the patients were identified as having been diagnosed less than or more than a year ago. Although the vast majority of the patients were diagnosed less than year ago, results from patients diagnosed more than a year ago did not vary greatly.
How would you respond? 61% of the survivors had at least one need and 18% had at least 5 needs. Physical and emotional needs were the most frequent categories mentioned. See the top ten responses below.
|4.||Worry, fear, anxiety||16%|
|7.||Dry, itchy, sore skin||11%|
|9.||Change in weight||10%|
WHAT’S NOT A SURPRISE
Many previous studies have shown that up to 60% of cancer survivors, regardless of diagnosis, have at least one unmet need, and that breast cancer survivors typically have more needs after treatment than do other survivors. Women diagnosed with breast cancer and previously treated with chemotherapy or anti-estrogen therapy were more likely to report unmet needs – likely due to the side effects of these treatments. In this study, for example, over ½ of the women taking AI reported unmet needs. This is a problem that is widely recognized and many credible organizations have developed techniques and tips for helping minimize side effects. See resources provided by Breastcancer.org at www.breastcancer.org/treatment and other blogs like these Quality of Life on Anti-Estrogen Therapy for help.
The authors of the study agree that it is important for breast cancer survivors with unmet needs to be able to access help and resources to address the need. In the US, many facilities that treat women diagnosed with breast cancer patients have put comprehensive survivorship programs in place to coordinate care for this very reason. See our blog on this Survivorship.
OTHER INTERESTING TIDBITS FROM THE STUDY
It appears the patient questionnaire was a better source of information for identifying needs than the electronic patient record. In addition to the questionnaire incorporating more topics, the theory is that a patient, when completing a checklist independently, may take more time to reflect on the question than when being asked questions by a health care provider.
If you are feeling “not quite right” to “this is really bothering me,” you are not alone. The resources provided here are meant to be helpful, but only you and your treatment team can identify a plan that is right for your specific needs. “IF YOU BE SOMETHING, SAY SOMETHING.”
- Capelan, et al, British Journal of Cancer (2017), 1–8 | doi: 10.1038/bjc.2017.283
This material was created or sponsored by Biotheranostics, Inc. The content, products and services discussed are offered to educate consumers on health care and medical issues that may affect their daily lives and should not be considered, or used as a substitute for, medical advice, diagnosis or treatment. You should always talk to your health care provider for diagnosis and treatment information, including your specific medical needs, and to answer any questions regarding personal health or medical conditions.
For Breast Cancer Index Intended Use and Limitations, visit www.answersbeyond5.com.