Threading the needle to complete the stitch: Rehabilitation—dialysis through transplant

Abstract

There are many obstacles to leap across on the road to successful rehabilitation for someone diagnosed with end-stage renal disease (ESRD). Yet, there is likely no obstacle perceived by the professional that is larger than the obstacles perceived by the patient. Life Options Rehabilitation Advisory Council (LORAC) provided the opportunity for a paradigm shift in rehabilitation thinking in the mid-1990 s.

The moments of our first encounter with patients are important. At different stages of chronic kidney disease (CKD), we may feel the need to communicate a great deal medically. If the patient can see the reflection of hope in the people they are working with, their hope endures and increases during the time(s) of crisis. With hope, we can conquer much more than without it.

In terms of employment, research has shown that it is easier to help someone stay employed than to have an interruption in employment and help them to prepare for and seek re-employment. However, whether the patient is working as they prepare for transplant or if they are on dialysis and haven't worked for some time as they prepare for transplant, planning for return to work begins prior to transplant.

If the “game plan” is not communicated to the dialysis team, the chances of executing the “play” are not good. Looking for a win-win in an ideal world, if a patient has stopped working, he or she could engage with their state rehabilitation agency to consider part-time work that would keep a resume active and build self-esteem, consider skill building while awaiting transplant, or consider volunteer work. With the transplant waiting list hovering at 90,000 for kidneys, we want to help the patient plan realistically if they do not have a living donor.

Working with state vocational rehabilitation counselors (VRC) is not without barriers. Helping VRC understand the opportunities available to them in working with patients who have kidney failure can increase the likelihood of success. Therefore, continuous education as well as building partnerships increases potential for patients and successful outcomes. A valuable resource is the 27th Institute on Rehabilitation Issues.3 This resource was developed to help vocational counselors understand the unique opportunities available to them as they work with people who have kidney failure.

Let's examine how we help patients to see that yes, it may be a difficult time when initiating dialysis; yes, there may be bumps in the road as they go through treatment. However, keeping life as much the same as it was before dialysis or transplant will help the patient feel as if chronic kidney disease is a part of their life, not all of their life.

The Medical Education Insitute's “Renal Rehabilitation: Bridging the Barriers” provided a formal definition of rehabilitation created by a multidisciplinary team of experts assembled by LORAC: “The ideal process of rehabilitation for a dialysis patient is a coordinated program of medical treatment, education, counseling, and dietary and exercise regimens designed to maximize vocational potential, functional status, and quality of life.”4 The ability to assess the complex interrelationship of psychosocial variables that impact rehabilitation is increasingly important in the era of managed care and bundled services.5 As Alt and Schatell noted, rehabilitation efforts are positioned for success: the goal of rehabilitation has been defined, data has been collected through Centers for Medicare and Medicaid Services (CMS), the Dialysis Practice Patterns Outcomes Study, and the 2008 United States Renal Data Systems Comprehensive Dialysis Study, CMS has focused policies to improve rehabilitation outcomes with a focus on measurement of health related quality of life as it relates to rehabilitation and publications over the last 20 years have urged changes in clinical practice to support renal rehabilitation.6

Additionally, helping the patient learn self-management skills will be crucial to rehabilitation and transplant success. The teams can use a common framework for supporting CKD patients in developing self-management skills and strengthening the rehabilitation process.

Newly-diagnosed patients almost always have the same questions: “How long will I live?” And, “How well will I live?”7 The dialysis and transplant team can work in unison to encourage and educate patients to know that multiple modalities, including transplantation, can be a part of a successful treatment plan for them across a long lifetime. As we encourage patients early, we can help them understand and overcome anxiety as they increase self-management of their health. Being open to home dialysis, transplantation, and in-center dialysis allows a patient to consider multiple options for school, work, volunteerism, and living life to their fullest potential. In order to accomplish this, people receiving treatment for ESRD must remain physically active—even though this may be harder than it was before dialysis. You guessed it, the third “E”, according to LORAC, to build toward employment (rehabilitation) is exercise. These building blocks can be put in place while on dialysis to keep the patient strong and focused on their goal. Measurement through a health related quality of life instrument, like the KDQOL, can assist the patient and team evaluate micro and macro outcomes.

Studies have found that patients had higher employment rates when they received treatment at facilities that offered a late dialysis shift, when home dialysis services were offered to them, when frequent HD was provided, and when at least one patient at their facility had been referred for VR services; they also found that mean Mental Component Summary (MCS) scores were significantly associated with rehabilitation activities.8, 9

Sometimes in our busy practices, rehabilitation becomes fragmented. There are so many indicators we look at to support the patient from CKD, through dialysis, to transplant, and sometimes back to dialysis and back to transplant. If rehabilitation were to become an overarching primary outcome from dialysis through transplant might we, as renal professionals, focus our time differently? What stitch would be used to pull the thread through needle?

Communication between renal professionals, throughout the dialysis and transplant waiting period, combined with an atmosphere of encouragement toward rehabilitation, can boost the long-term employment outcome for the patient and will help everyone keep their eyes on the ball!

For information on helping dialysis patients remain fit, visit www.lifeoptions.org for a free exercise booklet to download, or an exercise DVD available for purchase.