Emotional Empowerment

There’s no way around it, many patients with corneal disease struggle emotionally.  And how could it be otherwise, since symptoms can negatively impact many quality of life issues such as ability to work, socialize, be a family member or just enjoy general leisure time?  Ultimately, this impact can lead to some tough emotional burdens like depression and anxiety.

While some studies show that vision related mental health issues can improve over time (possibly as a result of adapting to changing health issues), patients with dry eye generally report having more mental health issues than the general population.  Swift resolution of whatever aspects of eye disease that can be managed becomes even more important in this light.  Unfortunately, the eye health system is not always being the best it can be in this department.

In A New Look at Dry Eye Disease and Its Treatment, authors suggest that “current treatment paradigms can lead to unacceptable costs in both quality of life and progressive use of healthcare resources.”  In another study, over 1000 peer-reviewed ophthalmology journals articles were reviewed to see if they dealt with a subject expected to have an impact on patients health or quality of life and they found that “there were more articles that had no relationship at all to health or quality of life than there were articles dealing directly with those issues.”  Their conclusion, “ophthalmologists do not appear to give much priority to issues of quality of life or health.”  Ouch!

So what helps?  A good doctor-patient relationship is an essential ingredient to the ability to manage vision health related emotions.  Some studies show that when health care administrators, providers, and patients and families work in partnership, the quality and safety of health care rise, costs decrease, and provider and patient satisfaction increase.  As part of her Coping 101 Series in her dry eye bulletin Keratoscoop (sign up here) Rebecca Petris has a fabulous article titled How to Find a Better Dry Eye Doctor chock-full of ideas on how to make the most of your doctor-patient relationship.  I would add the following questions to your assessment process when looking for a patient-centered care practitioner:

  • Does the provider spend time educating you and your loved ones about your eye health issues and treatment?
  • Does the provider encourage you to participate in your care, i.e., in decision-making, health-related behaviors, and self-management through goal setting, action planning, etc.?
  • Does the provider make your health information easily available to your other health care providers?
  • Does the provider work in coordination with your other care providers?
  • Does the provider treat you with dignity and respect?
  • Is the provider sensitive to your emotions?

If it’s an entire facility you are trying to assess for its patient centered/collaborative approach, consider these questions:

  • Are senior leaders engaged on the topic of collaboration with patients and families?
  • Is there a designated staff member with patient- and family-centered knowledge and skills to serve as liaison for collaborative endeavors?
  • Are there a variety of ways for patients and families to serve as advisors within an organization, ensuring they can contribute meaningfully to decision-making?
  • Are patients and families ever recruited for various terms of service to support sustainability and represent the diversity of the community served?
  • Are there professional development opportunities in patient- and family-centered care and in strategies for effective collaboration for patients, families, staff, and physicians?

While the answers to these questions alone will not ensure positive mental health for those with eye disease, it’s a step in the right direction.  I am interested to hear what wisdom there is out there about the best ways to manage the mental health challenges that can come with dry eye disease.