Mary Amanda Dew, PhD ; Jan Manzetti, RN, PhD ; Jean R. Goycoolea, MA ; Ann Lee, RN, CRNP ; Rachelle Zomak, RN, MSN ; Judith L. Vensak, RN, BSN; Kenneth McCurry, MD ; Robert L. Kormos, MD

Disclosures

June 17, 2002

The First Posttransplant Year: The Issues

Transplant recipients and their families frequently comment that it took significantly longer than they expected to recover physically and emotionally from the transplant surgery and to fully adapt to the routine of posttransplant medications and side effects. In general, the first year is best characterized as a period of readjustment and rehabilitation, with gradual improvement in all domains of QOL (physical, emotional, and social).

Patient and Family Concerns

Numerous investigators have reported that important psychosocial issues arise during this time period.[13,17,18,19,25,32,36,42,43,44,45,46] Common psychosocial issues for patients and families relate to:

  • coping with physical changes and early complications such as acute graft rejection

  • enduring the psychological highs and lows that sometimes occur as side effects of immunosuppressive agents such as corticosteroids

  • managing a complex posttransplant regimen that encompasses: (1) multiple medications and dosing schedules, (2) monitoring vital signs, (3) exercise and dietary prescriptions, (4) regular follow-up medical evaluations and laboratory tests, and (5) lifestyle restrictions related to smoking, alcohol, and other potentially harmful substances

  • altering self-perceptions (ie, transitioning from their roles as critically ill or dying patients and family caregivers to roles and lifestyles that are less illness-focused)

  • psychological acceptance of the transplant and, for cadaver donation recipients, dealing with the fact that someone lost their life just when they regained theirs

  • coping with financial and economic issues (ie, cost of transplant surgery, hospital stay, and/or follow-up care and medications).

Given these concerns, patients and families often are very focused on staying in close contact with the transplant team after they have returned home. The complexity of their medical regimen can be daunting. Gaps in knowledge about patients' recovery and healthcare needs usually surface during this time and can lead to increased anxiety and anger. Patients and family members alike can be dismayed that relationship problems that existed before and/or during the period of critical illness and transplant surgery continue after they return home. In fact, the stress of the waiting period can actually serve to temporarily hold relationships together.

Consequently, high levels of emotional distress, as well as clinically significant depression and anxiety-related disorders, are more frequent during the first posttransplant year than during later years for all types of organ transplantation.[19,47,48,49,50,51,52,53] The occurrence of some psychiatric disorders such as transplant-related posttraumatic stress disorder (PTSD) may be limited almost exclusively to the first year after transplantation.[47] Individuals with transplant-related PTSD appear to be unable to come to terms with the transplant experience and may experience flashbacks, nightmares, and extreme distress when thinking about or reminded of stressors during the waiting period, the surgery, and/or the recovery period.[18,54] Although PTSD in transplant recipients has only recently received attention, it has been reported in other extremely ill patient populations.[55,56,57,58] There is also evidence that psychological problems during the first year influence physical health and well-being in subsequent years[59] (the reader is referred to Dew and associates[13] for a review), further suggesting the need for early intervention.

Caregiver Concerns

In order to maximize graft and patient survival during the first year, the transplant team must maintain adequate follow-up with their patients so that medical status can be monitored, and ensure that patients are compliant with the medical regimen. This challenge is greater, of course, when patients live long distances from the transplant center.

Medical compliance after transplantation, the degree to which patients' behaviors coincide with transplant team recommendations,[60] is a key concern of transplant professionals well before a patient is transplanted. Indeed, transplant teams often hope that they will be able to accurately predict posttransplant medical compliance even as early as at the medical evaluation for transplantation, and the psychosocial component of that evaluation may be largely focused on trying to establish risk for compliance difficulties.[2,12,13,61] However, such attempts have not been highly successful. Medical compliance history and demonstration of medical compliance during the waiting period have not been found to reliably predict compliance or medical outcomes after transplantation.[61] Instead, some evidence suggests that other elements (eg, early posttransplant psychological distress levels, social support, coping strategies) are better predictors of posttransplant medical compliance.[62] For recent reviews of predictors of medical compliance after transplantation, the reader is referred to Dew and colleagues[61] and Bunzel and Laederach-Hoffman.[63]

Noncompliance appears to be relatively common during the first several years after transplantation. Furthermore, compliance in most areas of the medical regimen worsens over the first year after the transplant,[62,64] just as it does for most patients who begin new medical therapies.[65,66] For example:

  • up to 20% of heart transplant recipients and 50% of kidney transplant recipients have been found to be noncompliant with prescribed immunosuppressant medications during a given 12-month period in the early posttransplant years[62,64,67,68,69,70]

  • 5% to 26% of heart transplant recipients smoke at least once after being transplanted[62,71,72,73]; no study has determined what proportion of these patients become regular smokers; the reader is referred to Collins and Beresford[74] for a recent review of smoking and heart transplantation

  • 11% to 48% of liver transplant recipients return to some level of alcohol consumption during the first year posttransplantation.[75,76,77,78]

Transplant teams' concerns are not limited to patients' compliance. The pattern of noncompliance and the tendency for noncompliance in a particular area (eg, alcohol recidivism) to affect or lead to noncompliance in another area (eg, not following the medication regimen) are also concerns. Unfortunately, there does not appear to be a particular "profile" of noncompliance after organ transplantation, so compliance and patterns of noncompliance must be evaluated on a case-by-case basis.

Potential Assessment and Intervention

There are more sources of information and personal accounts that concern the first posttransplant year than for any other phase of the transplant experience.[79,80] It is important for the transplant team to promote and encourage judicious use of these resources. However, patients and families must understand that the transplant team will continue to be the most important source of information regarding medical issues concerning the transplant, general physical and mental health concerns, and important lifestyle issues (eg, weight management, exercise and activity levels, and alcohol use, if any).

Surviving Transplantation[11] contains a number of personal accounts, as well as an extensive discussion of the worries and concerns likely to be experienced by patients and families. Coping strategies that other patients and families have found to be useful are described. Other useful resources for the layperson include organizations such as Transplant Recipients International Organization, Inc. As their health and vitality improves, patients often become involved in local and/or national organ donation awareness and transplantation initiatives. Newsletters and magazines, such as Lifetimes magazine (CVS ProCare Pharmacy, Inc.), can help patients and families stay connected to the transplant community and its activities. There are also Web sites and Internet-based support groups available, although the caveats about patient and family use noted earlier must be kept in mind.

Maintaining contact with other transplant recipients can be helpful from psychosocial and psychological perspectives. Posttransplant support groups are equally as important as pretransplant support groups. However, groups are not accessible to patients who live long distances from the transplant center except at the time of medical follow-up appointments, which generally become less frequent during the course of the first posttransplant year. A partial solution is Internet-based support groups, either in the form of real-time "chat room" discussion groups or a "bulletin board" to which individuals post messages to which others may respond at any time. It is essential, however, that patients and families who use these resources keep in mind that online groups are not the appropriate forum for handling critical medical or psychosocial issues or emergencies.

Medical compliance and the patients' and families' psychosocial characteristics that foster or impair compliance are critical concerns for the transplant team. Various strategies can be used to sensitively assess compliance, educate patients about their medical regimen, and encourage help from the family. In particular, the transplant team should consider formulating a routine posttransplant psychosocial and medical compliance assessment, with as much care as they use in developing their pretransplant assessment(s). Posttransplant psychosocial outcomes are important components of patients' overall QOL,[19,44] and an implicit goal of transplantation is to maximize QOL. However, it not possible to gauge whether this goal is being met unless systematic evaluations in this area are routinely incorporated into patient follow-up.[13] Therefore, psychosocial and medical compliance information should be collected during follow-up visits or communications. A benefit of systematically collecting and periodically analyzing this information is that it will allow for better, more accurate information to be provided to patients and their families about:

  • resources and formal and informal supports that might be beneficial

  • what to realistically expect during the first year posttransplantation and thereafter

  • common psychosocial problems and what can be done to prevent or address them.

Education is a powerful intervention for improving psychosocial and medical compliance. Patient education in these areas is routine in many transplant programs. However, greater emphasis on the formal evaluation of educational programs could be useful for identifying opportunities for improving them. Evaluation of the effectiveness of educational strategies is important to determine which patients are knowledgeable in critical areas.[60,65,81]

For transplant teams to develop educational and behavioral interventions aimed at reducing the rate and/or severity of medical noncompliance, it is important for them to be knowledgeable about typical posttransplant compliance problems, patterns of patient noncompliance behavior, and risk factors for noncompliance. For example, the fact that noncompliance in one area is not usually associated with noncompliance in other areas suggests that broad educational or self-help strategies to improve compliance "in general" may be relatively inefficient because the "generally noncompliant" patient is rare. Instead, patients vary considerably in their noncompliance behaviors. Moreover, it is unlikely that addressing noncompliance from a narrow perspective will have "carryover" effects to other problem areas. The behavioral areas in which patients have difficulty should probably be targeted on a patient-by-patient basis.

With respect to the emotional distress and episodes of depression and anxiety-related disorders that are common posttransplantation, transplant professionals have available to them a relatively wide array of effective psychopharmacologic treatments that are suitable in chronically physically ill and transplanted populations.[82,83,84] As discussed above, just as for other chronic illness populations (including transplant candidates), group and individual therapy, support services, and mentoring also appear to be beneficial after transplantation, if the long-distance communication difficulties can be overcome.[10,17,85] Finally, posttransplant maintenance of medications or other interventions that were effective pretransplantation is likely to provide the transplant recipient's best hope of having positive psychosocial outcomes. Long-term maintenance trials in the fields of psychiatry and psychology have provided important evidence relevant to this issue,[86,87] and this work suggests the need to take a similar maintenance approach across the transplant experience.

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