My friend, fellow breast cancer survivor Gai Comans, has just released a new guide called “Survivor Secrets – Empower Your Life”. And, alongside some other names which will be familiar to you, I am honored to be one of the 21 inspirational survivors interviewed.
A majority of cancer patients experience some level of fatigue during their course of treatment, and approximately 30% contend with persistent fatigue for years after treatment. Fatigue is among the most common and distressing long-term effects of cancer treatment and significantly affects patient quality of life. ASCO has adapted a pan-Canadian guideline on screening, assessment, and care of cancer-related fatigue in adults with cancer, the National Comprehensive Cancer Network (NCCN) Guideline for Cancer-Related Fatigue, and the NCCN Guidelines for Survivorship for use in the screening, assessment, and management of fatigue in adult survivors of cancer.
The involvement of patients in the design and conduct of research is increasingly promoted by policy and research bodies. The experiences of individuals who become involved in research in this way are not well understood. This study aims to describe the experiences of people's participation in patient and public involvement (PPI) in supportive and palliative care research, specifically with respect to the benefits and challenges of participation for the individuals and the broader research support structures.
“No Decision About Me, Without Me” is a directive for patient care that is taking hold around the globe. The vision is for patients and clinicians to reach decisions about treatment together, with a shared understanding of the condition, the options available, and the risks and benefits of each of those. While this is the Read more
For hundreds of years, the physician-patient relationship has seen the physician as the authoritative, sometimes dictatorial, healer — the unquestioned expert on care, protocols and medical regimens. The patient assumed the role of a passive receiver of information, taking orders and instruction from the doctor.
Most research regarding fertility in young women with breast cancer has focused on long-term survivors. Little is known about how fertility concerns affect treatment decisions or fertility preservation strategies at the time of initial cancer diagnosis.
Marie Ennis-O'Connor's insight:
Among the first 620 eligible respondents included in this analysis, median age was 37 years (range, 17 to 40 years); 425 women (68%) discussed fertility issues with their physicians before starting therapy, and 319 (51%) were concerned about becoming infertile after treatment. Because of concerns about fertility, four women (1%) chose not to receive chemotherapy, 12 (2%) chose one chemotherapy regimen over another, six (1%) considered not receiving endocrine therapy, 19 (3%) decided not to receive endocrine therapy, and 71 (11%) considered receiving endocrine therapy for < 5 years; 65 (10%) used fertility preservation strategies. Greater concern about fertility was associated with younger age, nonwhite race, not having children, and receipt of chemotherapy.
Many young women with newly diagnosed breast cancer have concerns about fertility, and for some, these substantially affect their treatment decisions. Only a minority of women currently pursue available fertility preservation strategies in this setting.
From a philosophical standpoint, one of the things I hate most about cancer is the use of “war” analogies. The “battle” may mobilize patients and families, but it may also interfere with education and informed decision making. And both patients and clinicians often take recurrence or disease progression personally as a failure. Even when everything is done perfectly, the outcomes aren’t. Why compound grief with the unnecessary stigma of “losing the war”?
ASCO has adapted the Pan-Canadian Practice Guideline on Screening, Assessment, and Care of Psychosocial Distress (Depression, Anxiety) in Adults With Cancer for use in the screening, assessment, and care of anxiety and depressive symptoms in adults with cancer. The adapted guideline, reported in the Journal of Clinical Oncology by Andersen et al, applies to patients aged ≥ 18 years at any phase of the cancer continuum and regardless of cancer type, disease stage, or treatment modality, and is targeted to professional health-care providers including medical, surgical, and radiation oncologists, psychiatrists, psychologists, primary care providers, nurses, and others involved in care, as well as to patients, family members, and caregivers.
The American Society of Clinical Oncology has released a clinical practice guideline on prevention and treatment of chemotherapy-induced peripheral neuropathy in adult cancer patients, published in the Journal of Clinical Oncology. The overall incidence of chemotherapy-induced peripheral neuropathy is estimated at close to 40% in patients treated with multiple agents, with reported rates varying according to chemotherapy regimens, duration of exposure, and assessment methods; regimens associated with higher risk are those including platinum drugs, vinca alkaloids, bortezomib (Velcade), and taxanes.
Today's guest post is written by Byran Litton, Senior Director, U.S. Oncology Business Unit at Eli Lilly and Company. He shares his thoughts on the recent Eye for Pharma Oncology USA Summit in Cambridge, Massachusetts.
Marie Ennis-O'Connor's insight:
Each person with cancer has a unique experience, and every perspective provides valuable insight into how we can make our health system more patient-centered.
A number of buzz phrases in health care today describe a new focus on patients taking an active role in their health: “personal health records,” “participatory medicine,” “shared decision making,” and “patient engagement,” to name a few. Patients are demanding transparency and access to their health information, and recent initiatives from the government and private insurers are addressing these demands.
In 2014, there remain significant barriers to a broad, connected patient community, not the least of which is patients’ access to their own health information. In this article, I will address some recent developments that show these barriers are starting to come down.
The implementation of clinical trials and quality research programs by community-based investigators and research staff is one of the most effective weapons available in the fight against cancer. The ASCO Community Research Forum was designed in support of this mission and to aid these professionals in navigating and overcoming the challenges that are unique to community-based research.
“The Community Research Forum is a group that has been established to think critically about the problems and challenges to doing clinical cancer research in the community setting, identify those problems, and, with the support of ASCO staff, help to solve those problems,” said Nicholas J. Robert, MD, Chair of the Community Research Forum subcommittee and a medical oncologist with Virginia Cancer Specialists, Fairfax, Virginia.
The European Cancer Patient's Bill of Rights is the result of two years of work by the European Cancer Concord (ECC), an equal partnership between European oncology leaders and patients and their representatives who have come together to address the significant disparities that exist for European cancer patients. ECC is a patient-centered initiative, born out of the need to deliver an optimal standard of cancer care and research for Europe's citizens. Strengthening and upholding the rights of the individual cancer patient/cancer survivor are the guiding principles of this initiative.
Patient advocacy groups are an increasingly valuable resource for pharma manufacturers and FDA throughout the drug development process, since they provide, among other things, a crucial perspective, according to a New York Pharma Forum panel last...
Physical activity has been associated with improved outcomes for cancer survivors. Compared to their urban counterparts, rural Australians experience a health disadvantage, including poorer survival rates after diagnosis of cancer. The aim of this pilot feasibility study was to gain insight into the experiences of rural cancer survivors engaging in an online resource designed to increase regular walking.
Marie Ennis-O'Connor's insight:
This online pedometer-based walking intervention is feasible and effectively increases motivation for walking and enhances health-related quality of life in South Australian rural cancer survivors. A randomized controlled trial of this intervention is warranted.
Amid studies of novel targeted therapies, genetic analyses of tumors, and new ways to approach the treatment of breast cancer, a low-tech study presented at the 2013 San Antonio Breast Cancer Symposium found that a yearlong exercise program reduced joint pain associated with aromatase inhibitors in breast cancer survivors.1 This is the first study to examine the impact of exercise vs usual care on the side effects of aromatase inhibitors.