Over the last 20 years there has been a surge of oral chemotherapy drugs that have come to the market, and it is estimated that over half of the current drugs being researched and trialed now are oral agents. The push to provide more effective oral anti-cancer drugs has been largely positive: consumers generally require fewer visits to the cancer center, there are fewer hours spent in a chemotherapy infusion chair there is greater flexibility and convenience with minimal disruption of normal routines, and consumers (at least on paper) prefer it. But concerns over oral chemotherapy remain, including: consumer ability to adherence to often complex regimens, cost to access such medications, and tolerance and reporting of side effects to the healthcare team.
The purpose of this page is to:
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provide a review of internet resources that provide the best information on the topic of adherence to oral chemotherapy and,
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provide a reliable list of resources for consumers to obtain information and helpful tips on the importance and difficulties of adhering to oral chemotherapy schedules.
The intended audience is people who are actively undergoing cancer treatment with an oral chemotherapy agent. If this describes you, I invite you to come along and explore the resources below. Make yourself an informed consumer on this cancer journey that no one wants to be on, and find practical tips and tools to help you along the way. I have summarized each resource below with what the site/page provides, and given it my own rating of 1-5 hearts (♥♥♥♥♥) based on its accuracy of information, authority to provide such information, objectivity (i.e. commercial bias or shameless promotion of certain products), currency (how recently posted was it?), and ease of navigation and readability.
Full disclosure: This page was created by me, an intermediate in the field of oncology, and a University of Virginia graduate nursing student for a class on health care. It should by no means be used to replace the advice and information offered to you by your personal health care provider.
Alright, then…let’s get to it.
- Oncology Nursing Society
Tools for Oral Adherence Toolkit
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https://www.ons.org/sites/default/files/ONS_Toolkit_ONLINE.pdfHailing from the Oncology Nursing Society (www.ons.org), the professional organization which serves oncology nurses, this is a comprehensive overview of oral chemotherapy which includes a set of “tools” to help understand some of the barriers and issues surrounding the difficulties with such treatments. The toolkit includes: a list of approved drug agents and their indications, common side effects of the different drug classes, information on insurance coverage and drug company reimbursement, information on the types of pharmacies that may be involved in distributing medications, barriers to adherence, techniques for providers to assess adherence to administration schedules, sample treatment calendars, and other tools. Though this toolkit was designed for healthcare providers, there is a wealth of information that consumers will find beneficial as well. It was developed in partnership with Takeda Oncology, and there is great objectivity of all of the information presented. The toolkit is updated annually with current resources, and is easy to navigate. It can also be easily printed. - American Cancer Society
Oral Chemotherapy: What you need to know
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http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/chemotherapy/oral-chemotherapyThe American Cancer Society is the nationwide, community-based, voluntary organization which is dedicated to eliminating cancer as a major health problem through prevention, research, education, advocacy and service. This particular information page on their website is designed specifically for consumers of oral chemotherapy, which addresses the basics of what oral chemotherapy is, how it is taken, expected side effects, and a list of questions which may be asked of the healthcare team. The page is updated at least yearly, and remains objective and unbiased in the information they present. The page is brief, informative, and well-organized. - Leaders in Pharmaceutical Business Intelligence Group
Can mobile health apps improve oral chemotherapy adherence? The benefit of gamification.
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https://pharmaceuticalintelligence.com/2014/06/17/can-mobile-health-apps-improve-oral-chemotherapy-adherence-the-benefit-of-gamification/This is a blog post from Leaders in Pharmaceutical Business Intelligence Group, in which they present an array of information pertaining to technologies designed for consumers to aid adherence to oral chemotherapies. They highlight the scope of the problem with adherence, and some of the contributing factors, with an impressive number of links to scholarly articles and publications. There is no sponsorship listed on their blog, and the information appears to be objective. The point in writing the post seems to be to serve as a point of dialogue of the benefits/drawbacks of particular technologies. Though the information was well-referenced at the time of its post (June 17, 2014), it was a single post, and there hasn’t been a follow-up post since the original. Though the article itself reads easily, the blog itself is rather busy and does not allow for the easiest of reading. - Conquer, the patient voice
Oral Chemo Challenges of and Tools for Adherence
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https://conquer-magazine.com/oral-chemo-challenges-of-and-tools-for-adherence/This is an article posted in the online magazine, Conquer, “the premier forum for patients with cancer, initiated by the Academy of Oncology Nurse & Patient Navigators.” In this article from 2015, the author presents the current realities of oral chemotherapy prescribing and use, the advantages and challenges to administration, and does a nice job highlighting the barriers to consumer adherence to therapy. She offers several suggestions for improving adherence, and highlights the role of the oncology care team in assessing and encouraging best practices. - Go Ask Alice!
How do you prepare your body for chemotherapy?
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http://www.goaskalice.columbia.edu/answered-questions/how-do-you-prepare-your-body-chemotherapyGo Ask Alice! is a team of Columbia University health promotion specialists, health care providers, and other health professionals, research specialists, and writers who come together to address a variety of healthcare related questions posed by their readership. In this post, a writer asks the question of how her friend who will be undergoing chemotherapy and radiation may keep her body in the best condition possible. Though this comment is not directly related to oral chemotherapy, specifically, it addresses consumer management of their overall health while undergoing chemotherapy treatment. It specifically highlights ways to maximize proper nutrition, managing stress, and getting enough rest. It also has links to reputable cancer support organizations and websites. Though there is no date on the information published, it is fairly timeless, and contains no commercial biases. It is written in simple, easy-to-read format, and is succinct. - YouTube
What is oral chemotherapy? | Dana-Farber Cancer Institute
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https://www.youtube.com/watch?v=hTjURxuNPAQ
https://www.youtube.com/watch?v=vzVDafn3iHA
https://www.youtube.com/watch?v=DgSEL7_5J5A
https://www.youtube.com/watch?v=qduLKXzN5CQ&list=PLPLXayOtubE0c-HLipDB_HopLCiOjSDZe&index=4Provided by the Dana-Farber Cancer Institute, this is a set of three short videos that highlight what oral chemotherapy is, safe and practical home handling practices, and managing symptoms and side effects, and tips for remembering to take oral chemotherapy pills. The last video is especially helpful as it offers practical suggestions on how to remember to take the pills at the same time for the correctly prescribed duration. The total length of these videos is 6 minutes, making them an easy, comprehensive, attainable way to glean information. Published in 2015, the videos are of high-quality, professional production, and show no product bias, other than the creating institution (Dana-Farber Cancer Institute). - Fight Colorectal Cancer
Get behind a cure: My experience with oral chemotherapy
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http://fightcolorectalcancer.org/research-treatment/my-experience-with-oral-chemotherapy/In this blog post by Pam Seijo, a stage IV colon cancer survivor and advocate, she relays her experience in taking oral chemotherapy at home, highlighting her fears, successes, and longevity with the treatment. The page does disclose that they have received educational grant funding from Genentech, a drug company which manufactures capecitabine, and oral chemotherapy agent. The transparency of this disclaimer is appreciated, and there is no mention of which specific oral agent the author takes. The post is simple, short, and easy to read. It was written in March 2015. It is highlighted by Health on the Net Foundation, a non-governmental organization which vets websites for trustworthy medical information. - National Institute of Health
Medication Adherence: Resources for patients
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https://www.niddk.nih.gov/health-information/health-communication-programs/ndep/health-care-professionals/medication-adherence/resources-patients/Pages/index.aspxThis part of the NIH website, though found on the Diabetes and Digestive and Kidney Diseases section, has multiple helpful links to resources for consumers to access to help organize and systematize tools to help take medications on time, obtain necessary resources, organize questions for the healthcare team, and even sign up for text alerts to help remember to take medications. The site is updated multiple times per year, is maintained by the US Department of Health & Human Services, and is presented without bias. This particular page is well-organized and contains seven links to helpful resources. - American Association of Community Cancer Centers
Oral Therapies – A patient-centered approach
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http://accc-oralchemo.org/home1/accc/The Association of Community Cancer Centers is an education and advocacy organization which directs its services to the multidisciplinary cancer team, and seeks to advocate for quality comprehensive cancer care for all consumers. Though this site is intended for healthcare professionals, it demonstrated evidence-based recommendations on supports that a community cancer center should have in place for consumers who are taking oral chemotherapies. An assessment is available (intended for use by an RN, but also may be useful for consumers to glance through), and a beautifully-defined process algorithm of which supports should be in place to ensure consumer success in adhering to therapy. The information provided in this site will help to produce an educated consumer, and one who may provide useful feedback to a cancer center which is not offering all the supports that are recommended by leading quality agencies. Though the information is unbiased in its presentation, it was funded by Novartis Oncology. The website is pleasant to look at, and the information engaging and thorough. - Chemotherapy.com
Chemo worksheets
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http://www.chemotherapy.com/chemotherapy_worksheets/This website offers several links to track important information for cancer treatment, including tools to adhere to oral chemotherapy. It includes a list of frequently asked questions about chemotherapy treatment, a blood cell count tracker, list of important phone numbers, medicine tracker, side effects trackers, and many more tools! This is a wealth of organizational information for consumers of oral chemotherapy, and any consumer undergoing cancer treatment. Though there is no promotional bias on this page, chemotherapy.com is maintained by Amgen, a pharmaceutical company which produces many chemotherapy drugs. The information is updated at least yearly, but the objectivity can clearly be questioned. It is organized and easy to navigate.
So there you have it. Ten quality resources all in one place for your easy access, information, organization, and empowerment.
For those who prefer a more peer-reviewed quality to their information-gathering, here is a great article highlighting the important role that nurses play in promoting consumer adherence to oral chemotherapy treatment. The article highlights the common pitfalls to oral chemotherapy treatment, but instead of placing all the responsibility onto the consumer, it highlights the success of a nurse-led intervention to provide close follow-up, counseling, and empowerment to consumers initiating new oral treatment regimens.
Source:
Schneider, S. M., Adams, D. B., & Gosselin, T. (2014). A Tailored Nurse Coaching Intervention for Oral Chemotherapy Adherence. Journal of the Advanced Practitioner in Oncology, 5(3), 163–172.
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Last modified November 27, 2016.
A Hard Pill to Swallow 