A 40-year-old female pediatrician had the unfortunate experience that adult family members and friends from different parts of the United States were diagnosed with
brain, breast, colon, gynecological and hematological cancers in the span of one year.
With each new diagnosis and different stages of treatment, her family and friends asked many questions, many of which she didn’t know the answers to herself.
She did however want to help in some way, particularly since she lives apart from her family and friends.
She went to the National Cancer Institute website to start looking for answers to their question and to learn herself.
From there she quickly was able to review an overview of the disease, treatment options, and possible prognoses which helped her to understand the cancer and be able to answer their questions better.
She also found information from the National Cancer Institute and different cancer organizations about common problems such as fatigue and nutrition.
In some cases, she e-mailed the Internet addresses of the information to her family and friends and in other cases, she printed and mailed them the information.
When her friend’s cancer returned, she searched the National Cancer Institutes’ Clinical Trials database and was able to help her friend enroll in a Phase 2 clinical trial.
As her friend died and in the weeks and months afterwards, the information from hospice and different cancer organizations helped the pediatrician to better care for herself.
Because of their knowledge, experience and a trusted relationship, health care providers (HCPs) are often asked by family, friends and acquaintances about health-related matters.
HCPs are often turned to when a serious or life-threatening, new illness or disease is first diagnosed, as treatment plans are being developed, during the ups and downs of the course of the disease, and for end-of-life matters.
HCPs have only a limited scope of practice and therefore are often asked questions about problems they do not treat or have less professional knowledge about.
Yet as humans, HCPs want to help their family and friends in some way, even if it is just finding information for them.
While this is true for almost any disease, cancer is a very prevalent disease and HCPs can expect that they may be asked cancer questions by family and friends.
- In 2005, cancer was the second leading cause of death (22.88%) after heart disease (26.6%) in the United States.
- The estimated number of cancer deaths in 2008 is ~1.4 million.
- The lifetime risk of being diagnosed with cancer is 40%.
- The lifetime risk of dying from cancer is 21%.
Rare diseases are another area that HCPs may be as asked many questions about. Each disease by itself may not affect many patients, but the > 1000 rare diseases taken together may affect as many as 25 million people in the United States.
HCPs can help themselves by using various information resources and also giving similar information to their families and friends.
The National Cancer Institute (http://www.cancer.gov/) offers a vast wealth of information itself, plus works as a clearinghouse, pointing patients and providers to other information resources.
Detailed information about specific cancer types and treatment is available (http://www.cancer.gov/cancertopics/alphalist and at http://www.cancer.gov/cancertopics/pdq).
This information is available in different degrees of detail for healthcare providers or patients and families. It is written in English or Spanish. When appropriate, the information is also stratified by age (i.e. adult versus child) or gender (e.g. prostate cancer for men, endometrial cancer for women).
The HCP information is good for understanding the overall disease process, treatment and potential outcomes.
This can assist the HCPs who are often asked many questions by their family and friends in translating or confirming the medical information understood (or misunderstood) by family and friends.
HCPs are also often asked about cancer-related problems and how to deal with them.
General cancer resources (http://www.cancer.gov/cancertopics/coping) are available for problems such as fatigue, pain, nutrition, sexuality, emotional issues, and supporting caregivers and other family members including children.
Patients may be approached at the initial diagnosis or when a cancer recurs to be part of a clinical trial. The clinical trials section (http://www.cancer.gov/clinicaltrials) includes general clinical trial information but also access to a database for searching available clinical trials.
Another clearinghouse of clinical trials for cancer and other diseases is Clinical Trials (http://www.clinicaltrials.gov/).
Other clinical trials information may be available through cancer-specific organizations (e.g. American Cancer Society®, The Leukemia & Lymphoma Society®,) research institutions and professional cancer research organizations and networks.
Many cancer-specific organization offer other information resources and may also sponsor local patient and family support groups (https://cissecure.nci.nih.gov/factsheet/FactsheetSearch.aspx?FSType=8.1).
Information about rare diseases often comes from the research community and disease specific organizations.
HCPs can use the Online Mendelian Inheritance in Man (http://www.ncbi.nlm.nih.gov/omim/) from the National Institutes of Health
Genetics Home Reference (http://www.ghr.nlm.nih.gov/).
Alternatively, authoritative medical information on the Internet for patients and families is collated by the National library of Medicines MedlinePlus® (http://www.medlineplus.org/) which indexes more than 750 health topics.
Many people consider this the most comprehensive authoritative index on the Internet.
Questions for Further Discussion
1. What cancer clinical trials are available to patients within 50 miles?
2. Your sister has just given birth and the baby is diagnosed with Shwachman Syndrome. Where can you find information to send to her?
To Learn More
To view pediatric review articles on this topic from the past year check PubMed.
To view current news articles on this topic check Google News.
To view images related to this topic check Google Images.
Ries LAG, Melbert D, Krapcho M, Stinchcomb DG, Howlader N, Horner MJ, Mariotto A, Miller BA, Feuer EJ, Altekruse SF, Lewis DR, Clegg L, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2005, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2005/, based on November 2007 SEER data submission, posted to the SEER web site, 2008.
ACGME Competencies Highlighted by Case
2. Essential and accurate information about the patients’ is gathered.
3. Informed decisions about diagnostic and therapeutic interventions based on patient information and preferences, up-to-date scientific evidence, and clinical judgment is made.
5. Patients and their families are counseled and educated.
6. Information technology to support patient care decisions and patient education is used.
9. Patient-focused care is provided by working with health care professionals, including those from other disciplines.
10. An investigatory and analytic thinking approach to the clinical situation is demonstrated.
13. Information about other populations of patients, especially the larger population from which this patient is drawn, is obtained and used.
14. Knowledge of study designs and statistical methods to appraisal clinical studies and other information on diagnostic and therapeutic effectiveness is applied.
15. Information technology to manage information, access on-line medical information and support the healthcare professional’s own education is used.
16. Learning of students and other health care professionals is facilitated.
17. A therapeutic and ethically sound relationship with patients is created and sustained.
20. Respect, compassion, and integrity; a responsiveness to the needs of patients and society that supercedes self-interest; accountability to patients, society, and the profession; and a commitment to excellence and on-going professional development are demonstrated.
25. Quality patient care and assisting patients in dealing with system complexities is advocated.
Donna M. D’Alessandro, MD
Professor of Pediatrics, University of Iowa Children’s Hospital
July 7, 2008