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Improving Patient Retention for Chronic Care in Underdeveloped Areas

By Sameer Kushwaha | 27 Feb, 2014

Hi everyone,

Since this past summer, I have been investigating ways that we can improve the follow-up rates of patients with chronic eye diseases that can cause rapid and irreversible vision loss (eg. diabetic retinopathy, glaucoma). I've been working on this project with the Aravind Eye Hospital in India, and we noticed that a large number of patients with these conditions often fail to return for scheduled follow-up treatments that must be done in a timely manner to maintain the health of the eye. Among the barriers that patients face, we found that travel time, waiting time, and the fact that patients have to give up a day's wages to come to the hospital to be major hindrances (costs are heavily subsidized by the hospital for patients who cannot pay). We also suspect that the reluctance to come to follow-up appointments for these reasons is amplified by a limited understanding of the severity of their condition. This may be due to either due to lack of health education among many of the patients, or due because in-hospital counselling time was too limited.

To address this issue, we developed a new categorization system where patients with very urgent cases would get a certain label, triggering a number of downstream changes in their care (e.g. longer counselling, more reminder phone calls prior to an appointment) and we are hoping that this will be a good starting point. However, I am curious as to whether anyone else has suggestions for how else we can work to tackle this problem? Thank you for your input!



SUJATHA RAO kanuru Replied at 9:04 PM, 27 Feb 2014

In the Indian context, given the distances, the travel and costs involved, drop out rates are nearly always high. What is emerging is village based initiatives. Maybe once a month eye clinics could be organized by Aravind Eye and those in need of inpatient care, be transported to the hospital. Now with better road networks, mobile eye clinics could also be considered so even the patient can be treated right there, of course depending on the complexity. The only other option is to to have extensive counselling. In every village there is a health worker...if they can be trained well and be paid a fixed fee to call on the patients and counsel them.......that is nother way.Options for such home level checks will depend on costs. Sujatha Rao

Subject: Improving Patient Retention for Chronic Care in Underdeveloped Areas

Bistra Zheleva Replied at 11:56 PM, 27 Feb 2014

A challenge for all people with chronic disease. Can education be done prior to discharge using the teach-back method? Ultimately, it is a question of access, so the hospital would need to build a network of referring and follow-up providers that can be educated to take care of the patients when they get back to their communities. So it all goes back to having good linkages between the different levels of care.

SUJATHA RAO kanuru Replied at 12:37 AM, 28 Feb 2014

Absolutely true...that also means building incenitves round that.Sujatha

Subject: Re: Improving Patient Retention for Chronic Care in Underdeveloped Areas

Adino Desale Lulie Replied at 6:17 AM, 28 Feb 2014

Yes! It is true.

Marwa Saleh Replied at 2:13 PM, 28 Feb 2014

Hello, Unite for Sight, a NGO mainly focused on ophthalmology work in Ghana, India and South America, has a GH online university. some resources are open and they discuss some of the barriers to GH, and touch upon the point you raise.
i think this may answer some of your concerns if you browse through the website. Goodluck!

gabriele gardenal Replied at 1:10 PM, 1 Mar 2014

Hi Sameer Kushwaha,

thank you for the interesting discussion. I am the country director of AVSI in DRC, and in these days we are writing a project about PMTCT in rural areas of eastern Congo. We are present in the specific area with another project and we are still gathering information for our project proposal. The point you mention take to my attention first of all the great job you've done working with that community the second is how did you manage to set up those solutions and secondly is that sustainable in the long term, or once the project runs out then the community is back to zero and the cost opportunity of your patient is so high that they will stop accessing the service? I say so cause it is a common pattern in DRC, in fact once NGO finishes their project that impact last very little. Talking to other friends in this sector I am innovating my thought about how something is sustainability and effective, generally it is when the population recognize that as a priority and find a propose a solution to lower the cost opportunity. Said so I have no granted solution, but I am sure as NGOs the first thing is to act and dialogue with the community without being their solution. I hope that helps you. Thanks for the interesting discussion.

Sameer Kushwaha Replied at 5:05 PM, 6 Mar 2014

Hello, thank you everyone for the thoughts and sorry for my delayed response!

Sujatha - great ideas and I am happy to say that Aravind does already operate in some of the ways that you mentioned. We do mobile eye clinics quite regularly in a number of surrounding villages, with travel accommodations for patients who need to come to the main hospital for further treatments. We also structure our clinics in a specific ways to target different problems (e.g. cataract vs. glaucoma vs. larger multi-specialtly clinics in larger villages). We also operate a number of telemedicine centers, but I think the point you mentioned about working more closely with the village health workers and using them as a local counselor for patients is something that we can look into improving on. Although we do contact local workers when we have patients who do not return, perhaps we can train them to be well versed on more high-risk issues that patients may face. I think that, on the point of incentives, we also need to do a better job of really driving the message home about the repercussions of irreversibly impaired sight (economically, socally, and in regards to their general safety).

Bistra - I think you're right about employing the teach-back method and I will see if we can work this into our counseling sessions to a greater extent. Naturally, the biggest barrier is the limited time that each counselor has to spend with a given patient, but one of the goals of our new classification system is to allow high-risk patients to have more counseling time.

Marwa - Thank you for the link! I have read about Unite for Sight in the past but there is a lot of interesting info on their website that I will have to take some time to look over.

Gabriele - We set up this new classification system by speaking with the doctors and counselors in each of the Aravind specialty clinics to get a handle on the most time-sensitive problems that patients faced, and to gather information on what aspects of our systems could be improved to enhance communication with patients. We found that doctors did not have a great way of informing counselors exactly which patients needed extensive counseling (the communication was hampered by the sheer volume of patients in some busier clinics) and counselors were working with somewhat cumbersome systems that made it difficult to retrospectively see who had returned for follow-up and who had not, as well as how many "high-risk" patients had not returned.

In terms of sustainability, I think there have been challenges, but the biggest factors that have contributed to the classification system's success so far were the promising early results that we saw from the pilot study, and our additional focus on finding ways to reduce waiting times for patients. With the classification system, there was some initial resistance from a reluctance to take the extra time to label patient files (yet another task to do) and for counselors to input this data (again, in addition to all of the data that they already had to work with). However, we showed early on that there was a large population of unreached, high-risk patients that needed attention. Further, the classification system became second nature for many people fairly quickly and the counselors found it useful to identify how to best allocate their time. The Aravind Eye Hospitals have become a fixture in their communities and do an excellent job of generating enough revenue to sustain themselves, but I think it is still premature to say that this new classification system will be sustained in the future. Currently we are working on a couple of studies to further validate its usefulness and hopefully this will help it to persist in the long-run. Hopefully I answered your question, but let me know if you want further clarification - good luck on your work!

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