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Personalizing Behavior Change Technologies: Improving Outcomes for Children with Chronic Disease

Ari Pollack Seattle Childrens Hospital University of Washington Seattle, WA apollack@uw.edu


factors and/or utilize pharmacological therapy. This places a significant burden on both the child as well as their family. In addition as I have discussed non-adherence has the potential to lead to significant morbidity and mortality. Addressing non-adherence, whether proactively or reactively, is an important aspect of modern clinical medicine. Clinicians often try a variety of motivational strategies to improve adherence. However, children have different motivators from adults. In addition, given the normal developmental progression children encounter, their intrinsic and extrinsic motivators are also likely to change over time as well. Therefore understanding developmental changes and how they influence the motivation of children and adolescents with a chronic illness has the potential to inform future personalization opportunities.
PERSONAL EXPERIENCE

INTRODUCTION

Medication and lifestyle non-adherence is common in adolescent populations with chronic disease processes. A 2003 World Heath suggests only 50% adherence to longtern therapy for chronic illnesses in developed countries[9]. Addressing this issue in adolescents is even more challenging as a result of developmental, social and familial factors[6]. It has been estimated that medication nonadherence is a significant problem in 15-30% of American children with a chronic disease. Pediatric nephrology, the field of medicine that takes care of children and adolescents with kidney disease, follows a variety of different populations at risk for non-adherence including patients with hypertension, those on dialysis or status post kidney transplant. Multiple studies have shown that improved medication adherence in all three populations leads to improved outcomes [2, 3, 7]. In addition, the costs for nonadherence can be extremely high, especially for the transplant population where non-adherence to immunosuppressive therapy can lead to acute rejection and ultimately the loss of the transplanted kidney. Technology has the potential to play a significant role in helping to improve adherence to therapy for pediatric patients with chronic disease. However, as the sponsors have mentioned understanding the drivers for success is critical before implementing successful interventions. Health care practitioners see the potential for technology to improve clinical outcomes, but have less exposure and experience with persuasive technology not to mention how best to tailor these interventions towards individual needs. Therefore it is critical that practitioners from both the healthcare and CHI communities work together to understand, develop and implement effective persuasive technologies.
CHRONIC HEALTH ISSUES IN CHILDREN

As a practicing pediatrician I have seen first hand the impact of adherence on clinical outcomes. There are tremendous benefits of modern medicine in reducing the burden of disease. However, the age of paternalistic medicine has long passed, and physicians no longer can recommend treatments without some degree of partnership and commitment from their patients. When patients are engaged and buy into the plan, they are more likely to adhere to therapy. However, in situations where the patients either havent accepted their illness or the treatment plan, the likelihood of non-adherence is much higher. As a physician, it is critical that I partner with my patients and ensure they understand their disease as well as the reasoning behind their therapy. Therefore I need to understand their values, concerns, and motivations when providing care. With this knowledge I can tailor my treatment strategies and approach to address their needs and when I am successful, my patients are also successful. Even when the patient/physician relationship is based on a solid foundation, the relatively small amount of time spent in direct contact limits its effectiveness. Therefore, applying the patients values and motivations to tools that can continue to lead to positive changes should further strengthen the patient/physician relationship as well as lead to improved adherence and ultimately improved clinical outcomes. This is where personalization and tailoring come

While most of the disease burden faced by children is acute and self-limited, there has been a rise in the number of children impacted by chronic disease. Recent estimates have suggested that the rate of children with a chronic illness has increased from 12.8% in 1984 up to 26.6% in 2006 in the United States[8, 11]. Many of those with a chronic illness are required to either modify behavioral

into play. Understanding the unique needs of individuals and then tailoring the therapeutic approach to meet these needs should also improve clinical outcomes. However, it requires a lot of effort to determine which method or methods work best for a specific individual. Therefore having easily accessible and usable tools that quickly assess the needs of patients should hopefully reduce this burden. In addition, once clinicians have this understanding, they will require appropriately tailored methods for providing care. Given that I frequently work with adolescent patients, I am interested to see if social competition is one approach that can be used to motivate this population.
SOCIAL COMPETITION: A NOVEL APPROACH TO BEHAVIOR CHANGE IN PEDIATRIC DIALYSIS PATIENTS

social comparison influences self-efficacy is an important point, especially for adolescents who are highly influenced by their peers. In 1954, Festinger presented a series of hypotheses describing the theory of social comparison and how groups can influence individuals[4]. He described how individuals are constantly evaluating their own abilities and that they often turn to groups of similar individuals to validate their findings and expectations. In addition, he writes that groups can also be used to push these expectations in both positive and negative directions under different circumstances. Given the complexities faced by pediatric patients with ESRD on dialysis and the serious consequences as a result of non-adherence, clinicians are constantly trying to develop new and innovative ways to make positive changes. Understanding how social cognitive and social comparison theories influence adolescents might prove to be an important factor in improving adherence for this population. Patients on in-center hemodialysis spend a significant amount of time in a single dialysis unit, between 12-16 hours each week for months to years while they await a suitable kidney transplant. During this time, patients develop significant relationships with other patients in their dialysis unit, creating strong group identities. To the best of our knowledge no studies published have explored how these group dynamics could be used to influence medication adherence. I plan to test whether these two theories can be leveraged to positively influence healthy behaviors in the ESRD population through social competition. I plan to explore how competition between two different pediatric dialysis units affects adherence for adolescents with ESRD maintained on hemodialysis. These patients have strict limits on their daily fluid intake and diet. They are asked to minimize the amount fluid they drink each day, as well as restrict foods that are high in sodium, potassium, and phosphorous. Therefore, we plan to investigate if social comparison, through competition, can influence individual behavior in a positive way by increasing adherence. It is our hope that by identifying with their dialysis unit, patients will work together, forming a team and ultimately increasing adherence. By doing this, we expect that they will be inspired to improve their individual metrics to better those of the entire groups. This will be the first known study to explore how social comparison and social cognitive theories can be utilized to improve adherence to medical treatment plans through a social competition. This innovative approach could have broad implications in the management of certain chronic diseases. We have not encountered a previous study that leverages the competitive nature of individuals, especially adolescents to generate changes in health behaviors. The intervention is simple and inexpensive, but has the potential to have a large impact.

According to the United States Renal Data System (USRDS), close to 8,000 children and adolescents in the United States have been diagnosed with end stage renal disease (ESRD) requiring renal replacement therapy (RRT) such dialysis [10]. In its latest report, the USRDS focused on some of the issues faced by the pediatric ESRD population including high rates of infection, hospitalization and increasing cardiovascular related mortality. Cardiovascular mortality has increased for all pediatric patients regardless of age or dialysis modality, though those on hemodialysis have higher rates compared to those on peritoneal dialysis. We know that improving volume control as well as regulating calcium and phosphorous balance should improve clinical outcomes by reducing cardiovascular disease in patients with ESRD maintained on hemodialysis. However, this requires strict control of both dietary and fluid intake by individual patients and adherence to this regimen is difficult for many patients. Over the past 30 years, the medical literature has explored the issue of adherence and compliance detailing the problem though making little inroads in solving it. It is well known that as the complexity of medical regimens increases the adherence to those regimens decreases. There are many factors that affect adherence, Fielding and Duff have divided them into two main classes: regulatory behavior and barriers with the latter consisting of both individual and social barriers[5]. Age plays an important role as well, and for patients on dialysis adolescents were significantly more likely to have lower adherence rates than younger children[2]. There are both individual and social factors that impact adherence to medical regimens. Understanding these factors first is necessary before one can implement interventions designed to improve adherence. One way to view these challenges is from the perspective of social cognitive theory, which incorporates self-efficacy beliefs with outcome expectations as well as social barriers and facilitators in regulating behavior[1]. Understanding how

It will also be important to understand how this intervention impacts different patients, capturing the differences in the personal characteristics and attributes between those patients who respond and those who do not respond. This will then provide insight into how we can generalize this intervention and apply it to other patients and as well as other conditions.
PERSONAL BIOSKETCH

REFERENCES

[1] [2]

[3]

I am a pediatric nephrologist at Seattle Childrens Hospital and will be completing my clinical fellowship in June of 2014. In addition, I am obtaining a Masters of Science in Information Management (MSIM) from the Information School at the University of Washington. I have long enjoyed combining clinical care and informatics, with the goal of improving clinical outcomes, especially through information visualization. Over the past year and a half my research has focused on understanding the information needs of physicians. Utilizing information visualization I am working to develop novel interfaces designed to improve how physicians obtain, interpret, and apply clinical data stored within the medical record. I am also interested in understanding how patient directed technology could improve clinical outcomes. I have begun some preliminary study designs investigating how persuasive technologies can influence patient adherence. In addition to the social competition study mentioned above, I would like to explore how alternative reality games as well as self-tracking devices can influence patients. I would be honored to participate in this workshop, as it would allow me to partner and network with others in the community. Given my strong domain expertise in the healthcare field, especially dealing with chronic disease, I bring an important perspective to the discussion. In addition, my pediatric experience allows me to understand the developmental stages of children and how to leverage it for positive gain. Thank you for your consideration.

[4] [5]

[6]

[7] [8] [9] [10]

[11]

Bandura, A. 2004. Health Promotion by Social Cognitive Means. Health Education & Behavior. 31, 2 (Apr. 2004), 143164. Brownbridge, G. and Fielding, D.M. 1994. Psychosocial adjustment and adherence to dialysis treatment regimes. Pediatric Nephrology. 8, 6 (Dec. 1994), 744749. Eakin, M.N. et al. 2013. Disparities in antihypertensive medication adherence in adolescents. Pediatric Nephrology. 28, 8 (Aug. 2013), 12671273. Festinger, L. 1954. A Theory of Social Comparison Processes. Human relations. (1954). Fielding, D. and Duff, A. 1999. Compliance with treatment protocols: interventions for children with chronic illness. Archives of disease in childhood. 80, 2 (Feb. 1999), 196200. Fotheringham, M.J. and Sawyer, M.G. 1995. Adherence to recommended medical regimens in childhood and adolescence. Journal of paediatrics and child health. 31, 2 (Apr. 1995), 7278. Osterberg, L. and Blaschke, T. 2005. Adherence to Medication. The New England journal of medicine. 353, 5 (Aug. 2005), 487497. Perrin, J.M. et al. 2007. The Increase of Childhood Chronic Conditions in the United States. JAMA. 297, 24 (Jun. 2007), 27552759. Sabat, E.World Health Organization 2003. Adherence to Long-term Therapies. World Health Organization. System, U.S.R.D. Pediatric ESRD. USRDS 2012 Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States. usrds.org. Van Cleave, J. et al. 2010. Dynamics of Obesity and Chronic Health Conditions Among Children and Youth. JAMA. 303, 7 (Feb. 2010), 623630.

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