Patients and Doctors see it Differently
This won't come as a surprise to anyone. Patients and their doctors tend not to see the side effects and general treatment experience the same way. In general, doctors seem to minimize troubles (although they, I am sure, would disagree) and patients are all too aware of symptoms and side effects. To be more fair, I think that we as patients often try to present our best and cheeriest selves to our doctors. When dress nicely, put on make up, comb our wigs or tie on a bright scarf and look pretty darn well. We may not mention that this is the first time in two weeks that we have had on anything but sweats.
I remember my husband, who is an oncologist, telling me that the experience of living with me through chemo in 1993 changed his practice. He learned to ask very specific questions to get at the details that otherwise he likely would not hear. "Can you stay awake past 8 PM?" "What did you have for dinner last night and could you keep your head off the table?"
This article from CA talks about the difference in reports between doctors and patients who are on clinical trials. There are strict reporting guidelines in trials; the researchers needs to know what actually happens to people on the drugs. If the side effects are too severe, doses must be lowered or, sometimes, trials stopped. I a not suggesting that anyone tries to fudge the results in these cases, but I do think that the perspectives are different. Remember, too, that most people who have enrolled in trials want very much to stay on them and may not be fully honest about how poorly they are feeling.
Disparities found in perception of symptoms between patients and oncology team
Mary Kay Barton MD
The prevalence and importance of pain and fatigue in patients with cancer continue to be underestimated by oncology physicians and nurses.
Clinicians need to assess symptoms of fatigue and pain carefully at each encounter.
An increased awareness of patient-reported outcomes and education for HCPs is needed to improve patients' QOL.
A recent study has demonstrated that oncology physicians and nurses underestimate the prevalence and impact of fatigue and pain in their patients with cancer (Support Care Cancer. 2016;24:4357–4363). In previous studies, fatigue has been shown to have a major impact on the quality of life (QOL) of patients with cancer, and multiple studies have indicated that there is a poor correlation between clinician perceptions and patient-reported symptoms, including fatigue and pain.
The objective of the current study was to investigate whether these disparities persisted despite the recent increase in attention that supportive care issues and patient-reported outcomes have received in modern oncology practice.
“Fatigue continues to be an important issue for patients with cancer,” says Lori Williams, MSN, PhD, lead author and assistant professor in the department of symptom research at The University of Texas MD Anderson Cancer Center in Houston. “It should be assessed routinely. Patients with cancer-related fatigue can be encouraged to begin programs of physical activity and referred to rehabilitation services. Routine assessment by the clinician can assess the effectiveness of interventions for each patient.”
Read more: http://onlinelibrary.wiley.com/doi/10.3322/caac.21311/full