Clinical Case Presentation: Renal Transplantation Treatment Adherence

Case Presentation: Developing better methods for use with a family to increase the patient’s (family's) treatment adherence. 

Learning Objective/Clinical Question: What interventions can I integrate into practice that may be helpful for this family?   

Brief case description: Kane is a 5-year-old boy with End Stage Renal Disease (ESRD) secondary to Nephrotic Syndrome.  Nephrotic Syndrome is actually a treatable and curable illness and, when treatment is followed, the patient normally does not progress to ESRD; in Kane’s case, however, his family was not able to follow the treatment regimen and, as a result, Kane is now dialysis-dependent.  He lives three hours away and has to come to Mott Children’s Hospital 3 days a week to receive hemodialysis treatments—his Nephrotic Syndrome was actually being treated at another hospital—Kane did not come to Mott until he had already progressed to ESRD and needed dialysis.  Now that Kane has ESRD the only permanent “cure” for him is a kidney transplant.  In order to be listed for a kidney transplant the patient and his family need to demonstrate consistent adherence to four different treatment areas for three consecutive months (this is to ensure that the family will be able to care the patient post-transplant because the medical requirements post-transplant are even greater than those necessary for dialysis); the four treatment areas for adherence are 1) dietary goals, 2) fluid goals, 3) medication goals, and 4) dialysis goals.    

Summary of your clinical formulation or impressions: Kane has a present diagnosis of End Stage Renal Disease.  His family is, as classified by hospital neuropsychiatric testing standards, “low-functioning,” meaning that his primary caregiver’s IQ is below a certain threshold.  His mother is his primary caregiver and she does not have a great deal of social support—her father often times helps out with Kane by bringing him to treatments, however he also falls under this “low-functioning” standard.  It is very clear that Kane’s mother loves him, cares about him, and tries her best to provide proper care for him—the hospital at which Kane previously received treatment filed against his mother for medical neglect—his mother is very cognizant of the implications of being accused of medical neglect for a second time.  Kane’s mother certainly wants to get Kane on the transplant list and is aware of each of the steps that need to be taken to accomplish this goal, however she has difficulty completing some of the day-to-day tasks that make this goal possible.        

Interventions used or treatment plan goals: Through a number of interventions developed across all staff areas (social workers, the dialysis unit teacher, nurses, physicians, etc.), Kane and his mother are currently doing very well regarding his dialysis goals (i.e. never missing a treatment and arriving on time) and medication goals (i.e. following his medication regimen exactly)—the multidiscipline focus has been noted to be effective in increasing adherence for transplant candidates (De Besler et al., 2009).  Kane’s lab results, however, show that he is not following the “kidney diet” and is drinking too much during the day (these two are very related—kidney diets are characterized by low consumption of salt, phosphorous, and potassium, all of which make you thirsty).  We (social work) have worked with the dialysis teacher to develop a schedule and diet notebook for Kane’s mother (she indicated that she thought this would be most helpful, as she needs concrete goals set out in front of her).  In this notebook she can record the details of each of Kane’s meals (one sheet per day), as well as his fluid consumptions—when she comes in for her monthly clinic visit (or, if she prefers to do it earlier it can be done during a dialysis session) the dietician and social worker will meet with her to discuss the results.  Additionally, the dietician inserted (into the front of the notebook) a list of “kidney-friendly” foods separated by meal and category (i.e. meat, vegetables, fruit, grains, etc.).  With the implementation of this intervention (approximately 1.5 months now) Kane’s labs have looked a little better—his mother, however, reports that she has trouble telling him he can’t have chips or frozen meals because their schedule is so hectic (i.e. driving 3 hours to get to Ann Arbor, dialyzing for 3 hours, and driving 3 hours back home 3 times a week).  The family also is struggling financially, which makes matters a bit more complicated.     

Other Goals:

·                To increase Kane’s mother’s sense of self-efficacy (to make her feel confident  

            that she has the ability to accomplish all of the goals for Kane’s treatment)

• This is noted as being particularly important by Tong et al. (2008) based on the unique experiences of parents of children with chronic illness

·                To develop the skills necessary for Kane’s mother to accomplish her personal 

            goals for Kane (i.e. to better educate her about inexpensive, healthy foods and to             make her feel more empowered as a parent)

·                To work with Kane to develop a kidney diet that meets some of his needs

Case Presentation Question: I asked the group for any alternative interventions that can be implemented with this family to order to help them meet their own personal goals for Kane’s treatment (and ultimately, for him to be listed for transplant).

Additional Ideas from Colleagues:

·                To look into at-home services that are available to provide additional   

          social/parenting support to Kane’s mother

·                To look at literature for assessing barriers related to non-adherence

• Rushe and McGee (1998) describe two scales [The Renal Adherence Attitudes Questionnaire and the Renal Adherence Behavior Questionnaire] their role as facilitators for adherence (and adherence barrier) assessment—these could potentially be utilized for this case

·                To work on developing step-by-step instructions for Kane’s mother for handling 

            Kane’s behavior (i.e. whining) when he wants to eat non-kidney-friendly foods

·                To do a role-play with Kane’s mother pertaining to a scenario where Kane whines             about not being allowed to eat certain foods (i.e. chips or pizza); this may help  

           her to practice saying ‘no’

·                To look at the emotions/feelings behind Kane’s mother’s “behaviors”

• For example, does she give Kane chips to stop him from whining when his baby sister refuses to stop crying?  Does she potentially feel overwhelmed in certain situations?
• When using this technique, it is important to build on strengths/to emphasize the logistics of times or situations in which Kane’s mother doesn’t “give in” to his whining
• To use a point system/token economy with Kane
• To give Kane consequences for his food-seeking behaviors
• Look at his motivations and use those
• These incentives could come from both the hospital and his home
• This technique is discussed extensively in
• Magrab and Papadopoulou (1977) discuss the use of a token economy on dietary adherence for children on hemodialysis and found it to have a positive outcome on patient weight and BUN levels (a routine part of renal lab work)

References:

De Bleser, L., Matteson, M., Dobbels, F., Russell, C., & De Geest, S. (2009).             Interventions to improve medication‐adherence after transplantation: a systematic review. Transplant International, 22(8), 780-797.

Griffin, K. J., & Elkin, T. D. (2001). Non‐adherence in pediatric transplantation: A review of the existing literature. Pediatric transplantation, 5(4), 246-249.

Magrab, P. R., & Papadopoulou, Z. L. (1977). The effect of a token economy on dietary compliance for children on hemodialysis. Journal of applied behavior analysis, 10(4), 573-578.

Rushe, H., & Mcgee, H. M. (1998). Assessing adherence to dietary recommendations             for hemodialysis patients: the Renal Adherence Attitudes Questionnaire (RAAQ) and the Renal Adherence Behaviour Questionnaire (RABQ). Journal of psychosomatic research, 45(2), 149-157.

Tong, A., Lowe, A., Sainsbury, P., & Craig, J. C. (2008). Experiences of parents who             have children with chronic kidney disease: a systematic review of qualitative             studies. Pediatrics, 121(2), 349-360.