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More Information Please: Online Patient Resources in Immuno-Oncology

Online Patient Resources in Immuno-Oncology

Sep 14, 2016

Patients undergoing cancer treatment need access to reliable cancer-related information and support to inform and empower them. This article reviews and provides links to an assortment of currently available immunotherapy-relevant resources for patients undergoing treatment with immuno-oncology (I-O) agents.

Introduction

In 2016, an estimated 1,685,210 individuals will be diagnosed with cancer, with upwards of 4,600 people newly diagnosed with cancer every day.1 A diagnosis of cancer has a profound impact on the lives of patients, as well as on the lives of countless family members and friends. The good news: five-year survival rates are continuing to increase. And as innovations in cancer prevention, diagnostics, and treatment occur, many more survivors are joining the ranks of the 14.5 million people living today with a history of cancer.1

Immuno-oncology agents, especially checkpoint inhibitors, represent this kind of game-changing innovation for many patients with cancer. These agents are associated with response rates, response patterns, and side-effect profiles that are distinct from those seen with traditional chemotherapy. In the next few years, as new I-O agents are approved by the Food and Drug Administration (FDA), currently approved I-O therapies receive new indications, and a plethora of novel I-O agents (e.g., CAR T therapies) with different mechanisms of action, response patterns and rates, side effects, and proposed indications are developed, there is an ongoing need for accurate, reliable, up-to-date, and accessible information and tools for patients and their caregivers, families, and friends.2-4 A variety of stakeholders—ranging from the pharmaceutical industry, professional societies, and cancer programs to cancer patient advocacy and support groups—have recognized the need to develop immuno-oncology patient education and support resources.

In addition to traditional print materials, media, and in-person events, the Internet has become a “go-to” source for consumers seeking healthcare information and patient education materials. Web-based information is also often a gateway to other educational and support resources (e.g., online or in-person support groups, workshops, and print materials). Patient education resources typically touch on such issues as:

  • Cancer risk factors, prevention, types, and staging;
  • Treatment options and treatment-related side effects;
  • Support and resources for emotional and practical issues (e.g., financial, insurance, access to care, day-to-day coping);
  • Survivorship support;
  • Caregiver education and support; and
  • Information about clinical trial participation.

Supporting Patients Via Information

Spotlight: Cancer Support Community’s Online Immunotherapy Survey (2014)5

  • Only 34.8% of cancer survivors knew the term immuno-oncology.
  • 64.9% had never heard of the the term immunotherapy.
  • 84% of respondents wanted to know more about these topics.


The vast majority of patients who receive a cancer diagnosis want as much information as possible. Physicians and cancer care teams are still the first and most highly trusted source for this information.6-9 Yet, according to the CancerCare 2016 Patient Access and Engagement Survey, less than 50% of respondents felt they had sufficient information to find emotional and practical support, access patient support organizations, or navigate the insurance coverage process.10 In this same survey, 67% of patients reported having caregivers who were involved in activities such as doctor visits, communicating with the medical team, providing emotional support, paying bills, dealing with insurance issues, and household chores. 10

Clearly, the need for cancer-related information and support for emotional and practical needs also extends to caregivers/family members. Numerous studies have shown patient information-seeking behavior and education can positively impact the physician-patient relationship, and empower patients to manage their healthcare through improved communication about treatment options, clinical trial participation, and shared decision-making.{Welch Cline, 2007 #905}5,7,9 Similarly, research has shown that providing education and support for caregivers of patients with cancer improves outcomes for both caregivers and patients in terms of physical health, psychosocial well-being, and quality of life.11,12

Web-Based Materials Lead the Way

Beyond cancer care teams, where do patients with cancer and their caregivers/families turn to find supplementary information and support? Across the board, the Internet has emerged as the most commonly consulted resource. An estimated 53%-63% of patients first search online to find information related to their cancer diagnoses, followed by looking to traditional print materials, media, support groups, and workshops.6,13,14 These findings are mirrored by caregiver information-seeking behaviors with 54% of caregivers typically turning to the Internet for information, followed by medical literature, family and friends, and workshops.15

Importantly, research has found that information can make a difference in clinical trial participation. Currently, fewer than 5% of cancer patients participate in cancer treatment clinical trials.16 While the reasons for this are multifactorial, a lack of exposure to clinical trial information appears to be key—only 12-18% of patients report feeling adequately informed on clinical trial opportunities.10 For instance, a 2011 study that examined cancer patient behaviors related to Internet usage reported 23.5% of patients specifically sought information on clinical trials, and 9.5% of patients said that this information influenced their views or changed their decision regarding clinical trial enrollment.13

While the Internet can be a source of health information, the sheer number of resources can be overwhelming for patients, as well as a source of misinformation. Additionally, patients may have difficulty assessing the reliability of information they come across online, they may not know how to interpret the information, or discuss it with their oncology care providers.7,9 A blended model would encourage patients and caregivers to seek supplementary information about cancer with support from the cancer care team to help them identify reliable sources, sort through the information they find online, and use it to personalize their care.7

Patient Resources

A wide assortment of patient and caregiver resources on the Internet provides variable types and quantities of information. An equally broad array of organizations hosts these websites, including general cancer care and patient advocacy/support groups, tumor-specific organizations, hospitals and cancer centers, professional organizations/societies, and pharmaceutical companies. Many of these hosts cross-promote one another in order to broaden patients’ exposure to information and support. The following section provides a snapshot of some of the online resources currently available to patients undergoing cancer treatment with immuno-oncology. While some of these sites are generalized to all types of cancer, the primary focus is on those with immunotherapy-specific information.

Resources Solely Dedicated to Immuno-Oncology

Bristol-Myers Squibb (BMS) Cancer Research Institute (CRI)
  • This organization is focused exclusively on cancer immunotherapy and provides guides on how immunotherapy works and information on coping with a cancer diagnosis, treatment, financial issues, care, etc., as well as how to locate support services. It also has a clinical trial finder tool and links to other websites.
  • CRI has also developed two additional immunotherapy websites:
    • I’m the Answer to Cancer (A2C) — designed to engage, educate, and empower patients and their caregivers/families about immunotherapy and clinical trials.
    • Inspire.com — a peer-to-peer online support community for patients and their families seeking immunotherapy information and support.
Merck
  • Merck provides telephone nurse supports and patient resources.
    • https://www.keytruda.com/keytruda-support-program/
Society for Immunotherapy of Cancer (SITC)
  • SITC provides several patient resources containing information about immunotherapy (what it is, side effects, clinical trials, shared decision making); the SITC website includes access to a digital booklet and several non-small cell lung cancer (NSCLC) videos.

General Cancer Resources with a Specific Immuno-Oncology Component

Association of Community Cancer Centers (ACCC)
  • ACCC is a leading education and advocacy organization for multidisciplinary cancer care teams. ACCC established the Institute for Clinical Immuno-Oncology (ICLIO) to provide multidisciplinary cancer care teams with I-O specific education and resources.
    • http://accc-iclio.org
American Cancer Society (ACS) American Psychosocial Oncology Society (APOS)
  • APOS provides general information on cancer, links to resources (specific cancers, coping, and financial and peer support services). APOS also staffs a helpline affiliated with the Cancer Support Community (CSC) Cancer Support Helpline that is designed to assist patients and their caregivers with finding emotional support in their own communities.
Americal Society of Clinical Oncology (ASCO) CancerCare.org
  • This site contains content on education, support groups, counseling, and financial assistance. CancerCare has also developed podcast education workshops and publications specific to immuno-oncology (the role and side effects of immuno-oncology).
Cancer Support Community (CSC)
  • CSC has free online and print educational materials about types of cancer, treatment, caregiver resources, cost of cancer, clinical trials, survivorship, etc., as well as an online support community and a cancer support helpline. CSC also offers the Frankly Speaking About Cancer series, which provides in-depth coverage of topics relevant to those affected by cancer that are often not otherwise available; the information is delivered digitally, in print, through online radio series, and through professionally-led workshops.
National Cancer Institute (NCI) Patient Access Network (PAN) Foundation
  • PAN is a co-pay foundation that provides financial assistance for qualified patients to help patients pay out-of-pocket expenses, including those receiving checkpoint I-O therapy.
Patient Resource
  • This site provides educational information about understanding cancer, cancer types, treatment and managing side effects, survivorship, up-to-date guides to treatment and facilities for patients with cancer, and financial and insurance resources. In partnership with SITC, they provide access to a guide dedicated to immunotherapy.

Cancer Care Centers

  • Many cancer care centers are developing educational information about immunotherapy for their patients. Some examples include:

General Cancer Resources

Association of Cancer Online Resources
  • This site provides access to online cancer-related communities for parents, caregivers, family members, and friends to discuss clinical and nonclinical issues and advances related to specific types of cancer.
National Coalition for Cancer Survivorship (NCCS)
  • NCCS has developed free audio program toolboxes for patients and caregivers; these toolboxes focus on taking a more active role in care from the time of diagnosis to survivorship.
National Comprehensive Cancer Network (NCCN)
  • NCCN has created a Patient Resource website section that includes information for patients about cancer type and treatment, payment assistance, clinical trials and information regarding participation, patient treatment guidelines, life with and after cancer treatment, and links to advocacy/support groups
OncoLink
  • This site has educational content about different cancer types and treatments, risk and prevention, and various aspects and types of support for patients and caregivers.

Tumor-Specific Resources

There are many tumor-specific websites designed to engage, educate, and support patients, caregivers, and families across a spectrum of issues. Below are examples of websites with information for patients receiving checkpoint inhibitor immunotherapy.

Bonnie Addario Lung Cancer Foundation Lung Cancer Alliance LUNGevity Melanoma Research Foundation Bladder Cancer Advocacy Network Kidney Cancer Association

Conclusion

Immunotherapy-specific patient and caregiver resources are still in their relative infancy compared with general cancer resources. However, the importance of providing patients with sustained educational and support resources that reflect the unique features of current and emerging immuno-oncology treatment options is being increasingly recognized. Through identifying resources that contain accurate, reliable, and useful information and tools, oncologists can help empower their patients to be active and informed participants in their care.

References

  1. American Cancer Society. Cancer Facts & Figures 2016. Atlanta.
  2. FDA approves new, targeted treatment for bladder cancer [press release]. FDA, May 18, 2016.
  3. Schieszer J. FDA Approves Nivolumab for Relapsed Classical Hodgkin Lymphoma 2016:3. http://www.oncotherapynetwork.com/hematologic-cancer-targets/fda-approves-nivolumab-relapsed-classical-hodgkin-lymphoma. Accessed Sept. 26, 2016.
  4. Juno Therapeutics. https://www.junotherapeutics.com/. Accessed July 28, 2016.
  5. Amsellem M, Suarez R, Wilson C. Informing and empowering cancer patients about immunotherapy: A psychoeducational workshop addressing needs in an emerging field. Presentation at the 2016 Annual American Psychosocial Oncology Society Meeting; 2016.
  6. Roach AR, Lykins EL, Gochett CG, Brechting EH, Graue LO, Andrykowski MA. Differences in cancer information-seeking behavior, preferences, and awareness between cancer survivors and healthy controls: a national, population-based survey. J Cancer Educ. 2009;24(1):73-79.
  7. National Cancer Institute Health Information National Trends Survey. HINTS Briefs #16: Trends in Cancer Information Seeking. http://hints.cancer.gov/briefs.aspx. Accessed July 28, 2016.
  8. Pew Research Center. Health Fact Sheet 2013; http://www.pewinternet.org/fact-sheets/health-fact-sheet/. Accessed July 28, 2016.
  9. Welch Cline R, Penner L, Harper F, Foster T, Ruckdeschel J, Albrecht T. Roles of Patients’ Internet Use for Cancer Information and Socioeconomic Status in Oncologist-Patient Communication. J Oncol Pract. 2007;3(3):5
  10. CancerCare. Patient Access & Engagement Report. 2016; http://www.cancercare.org/accessengagementreport. Accessed July 28, 2016.
  11. Griffin J, Meis L, Greer N, et al. Effectiveness of Family and Caregiver Interventions on Patient Outcomes Among Adults with Cancer or Memory-Related Disorders: A Systematic Review. Washington (DC): Department of Veterans Affairs, 2013.
  12. Northouse L, Williams AL, Given B, McCorkle R. Psychosocial care for family caregivers of patients with cancer. J Clin Oncol. 2012;30(11):1227-1234.
  13. Castleton K, Fong T, Wang-Gillam A, et al. A survey of Internet utilization among patients with cancer. Support Care Cancer. 2011;19(8):1183-1190.
  14. Harvey A, Amsellem M, Suarez R. Informational and emotional support utilization and needs of lung cancer patients and caregivers: Results from a national education program. Cancer Support Community; Washinton D.C.
  15. Harvey A, Ansellem M, Suarez R. Information and Emotional Support Utilization Among Cancer Caregivers: Results From A National Sample of Education Program Attendees. 2015 World Congress of Pyscho-Oncology; 2015.
  16. American Cancer Society. Clinical Trials: What You Need to Know. 2016; http://www.cancer.org/treatment/treatmentsandsideeffects/clinicaltrials/whatyouneedtoknowaboutclinicaltrials/index.htm, 2016.