Patient and Family Engagement

Chronic Disease Management: Rallying Support for the Journey

Chronic diseases exact a huge toll in terms of human and financial impact.  According to the CDC, chronic diseases account for $3 of every $4 spent on healthcare — nearly $7,900 for every American with a chronic disease. What’s more, they cause 7 out of every 10 deaths.

As a woman who has been relatively responsible in managing her health, I shake my head in disbelief.  Yet, it’s hard to ignore, knowing that I lost a father to heart disease, a mother to Alzheimer’s and now I have a spouse who is dealing with diabetes and heart failure.

A Call to Action: Prevent, Intervene, Innovate

For me, this is a call to action. Following the Triple Solution for a Healthier America, I’m more keenly focused on prevention for me.  For my spouse, it’s about intervention and innovation (i.e. technology-enabled tools). Supported by a great network of providers, I’m becoming a more active participant/advocate in helping him manage the complexities of his diseases.

Mature couple with doctor and medicine

One of the most important things I do is listen and observe. Here’s what I’m finding: 

  • Bringing in diabetes educators to teach and guide him was a good beginning.  They provided insights and helped “activate” him. Sadly, this didn’t happen until years after his initial diagnosis. 
  •  An iPad® app has been beneficial in helping him record his blood levels, carbohydrate and sodium intake, calories and medication doses. It’s slick and gives him a sense of control in face of a disease that can make him feel helpless at times. At the same time, when he experiences the effects of high or low blood sugar, it gives him the means to revisit the data and adjust his regimen and behavior. 
  •  I also see that automated reminders and more interactive applications, which integrate preset goals and flag him when he goes off track, could be even more beneficial. 
  • Though my spouse is a self-described “techy,” I can see periodic one-to-one discussions with educators are also needed to review and reinforce his progress, make mid-course adjustments, clarify certain points that have been forgotten or were unclear in his mind, and to address new issues that emerge.
  • These one-to-one discussions also would be valuable to me as a patient advocate. I still have so many questions that arise outside of our physician conferences. Yet, I don’t honestly feel I have “full membership” in the care team. His physicians are great but not fully accessible and I don’t feel that I’m doing enough. 

Family-Centered Chronic Disease Management 

There are so many great methodologies and tools emerging to support people in managing chronic diseases.  However, it’s clear to me that my family (and probably others) needs a “strategic plan” that is patient- and family-centered, and sustained by on-going communication. 

 I only recently viewed a 2009 video of Don Berwick, talking about What Patient-Centered Care Really Means.  Like him, I fear the prospect of being anonymous and powerless when facing homogenized care.  Gratefully, tremendous strides are being made, but there is still a long journey ahead before patient- and family-centered care is the norm.  And for those managing chronic disease, it can’t happen soon enough.  

What are you doing to advance the cause?

 

2 Comments

  • Sandy Sanchez says:

    Christine, thank you for your article. The statistics posted regarding chronic diseases is alarming and I appreciated your sharing of information. Similarly, I have my dad who is dealing with chronic diabetes and my spouse who has borderline diabetes and we are all fearful of further development into something more worrisome . I would love to help them have a better sense of control and increased knowledge, by use of such technological apps with use of an iPAD, etc Unfortunately neither are “techies” and just knowing who I am dealing with, it’s unlikely they will be open to such ideas. As you ‘ve mentioned, the diabetes educators, had been helpful early on but with such chronic illnesses, it is the ongoing assessment and monitoring that is most important.

    My helping to prepare low carb meals, making sure they are watching thier diet and exercise and that they are administering their medicaiton as prescribed is not nearly enough. From a clinical standpoint I think there is a need for possibly outreach centers – i.e. diabetes control mobile clincs, but I recognize this is all very costly, Certainly I attend visits and conversations with the health care providers which for the most part are direcfted to that particular visit with a 3-4 wk/month follow up. The situation however, is ongoing. Your “call to action” and the need for a “strategic plan that is patient-and family-centered” is desperately needed.

    To advance the cause I am continuing to help chart and monitor (manually) the levels, also educating family members hopefully promoting awareness and prevention. I am very interested in learning and hearing from others on what methodologies are helping them.

    Thanks again for the article.

    • Thanks for your story as well. I think it underlines the importance of a truly patient-centered plan. There’s no one-size-fits-all approach that’s going to succeed. I love your idea about mobile clinics. Perhaps with the advent of accountable care organizations and payments based on outcomes, there’s hope for such a concept. I don’t know the economics related to the mobile clinics, but with the staggering costs of chronic diseases, maybe they can be cost-justified.

      I wish you well on your own journey. Thanks for sharing.

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