Doctors Not Trained To Handle Chronically Ill Patients

Despite the fact that 125 million North Americans suffer from a chronic condition - Chiari or syringomyelia, for example - most doctors do not feel adequately trained to properly deal with chronically ill patients. This was the key finding of survey performed by a group of physicians at Johns Hopkins University, led by Dr. Jonathan Darer.

Given the sheer number of chronically ill people in the healthcare system, Dr. Darer and his team wanted to determine if doctors believe they have been properly trained to handle such patients. They devised a phone survey to examine issues such as career satisfaction, practice characteristics, perceived effectiveness of training regarding chronic care competencies, and the effect of medical training on attitudes towards treating chronically ill patients. They published their results in the June, 2004 issue of the journal Academic Medicine.

The chronic care competencies (see Figure 1, sidebar) were designed to be applicable to people with one or more chronic conditions, to be not specific to a single disease, and to highlight the long-term, multidisciplinary aspects of this type of care. The responses used a 3-point scale: more training than needed, right amount of training, or less training than needed. Similarly, the questions regarding attitudes towards care (see Figure 2) solicited an answer of feeling either positive, negative, or neutral about a given subject.


Figure 2
Sample Survey Questions Regarding Attitudes Toward Patient Care

Did your medical school training and residency leave you feeling positive, negative, or neutral about:

  1. Taking care of patients with a chronic illness?

  2. Your ability to care for patients even if you can't cure them?

  3. Your ability to influence patient behavior?

  4. Being able to make a difference in the lives of patients with chronic illness?


After designing the survey, the team created a sample list of over 2,000 doctors designed to be representative of the general age, gender, and regional mix of doctors in the US. The list was designed to be half general practitioners and half specialists. Doctors had to have a minimum of 20 hours of patient care per week to qualify and could not be a resident or fellow in a hospital or academic institution.

Next, the researchers employed an independent service to perform the actual phone survey. Using the sample list of doctors, the service was able to get a response from 1,236 doctors. The doctors who responded represented a variety of practices (see Figure 3), overall were very satisfied with being a physician, and represented a range of experience levels. Reinforcing the importance of this topic, 24% of the doctors reported that more than 80% of their practice consisted of chronically ill patients.

Figure 3
Selected Characteristics of Physician Respondents

Practice Type % of Physicians
Family/GP 21.8
Internal Med 18.7
Pediatrics 10.4
Nonsurgical Specialist 27.1
Surgical Specialist 21.9
Overall Satisfaction As A Physician
Very Satisfied 53.5
Somewhat Satisfied 36.1
Unsatisfied 10.4
Years Since Medical School
< 10 yrs 21.4
11-20 yrs 38.4
> 20 yrs 40.1

The major finding of the survey was that more than 60% of the surveyed doctors did not feel their training was adequate to deal with chronically ill patients. This was true across all 10 competencies. Interestingly, family practitioners - as a group - felt more prepared to deal with chronically ill patients than other types of doctors. Also, doctors who had graduated from medical school less than 10 years ago, felt better about their training than doctors who had graduated years earlier.

In contrast to the feelings about training and patient care, a strong majority of doctors responded that their training had a positive impact on their attitudes towards treating chronically ill patients. Eighty percent of the respondents reported that their training had left them feeling positive about their ability to make a difference in the lives of their patients, while 60% percent felt their training helped them feel like they can influence patient behavior. Again, family practitioners reported their training had influenced their attitudes more than other types of physicians. In contrast, this time the only difference the younger doctors (less than 10 years out of med school) reported was a more positive attitude regarding their ability to care for patients even if they can't cure them.

Given the unique needs of patients with chronic conditions - access to open appointments, pain management, nutrition counseling, patient education, coordination of services - the proper training of physicians to deal handle these patients is critical. More importantly, the attitudes doctors have towards these patients can not only influence a patient's experience, but their health, well-being, and future outlook as well.

So what does this mean for Chiari and syringomyelia patients? Clearly, there are many doctors out there who are not well equipped to deal with the unique needs of our population, especially issues such as pain management and interdisciplinary care. However, it does appear that finding a doctor - perhaps a family practitioner - who is comfortable in dealing with chronic conditions, open to learning about the disease, and is willing to coordinate care is not only necessary, but possible.

--Kathy Adams & Rick Labuda