Patient Compliance for Transplant Caregivers

A huge factor in having a successful, long-living transplant is compliance.

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Patient compliance with transplants can dictate whether a transplant will survive. Bad compliance could even prevent someone from receiving a transplant. There are many different factors that go into a successful transplant: medication compliance, compliance with nutrition, doctors appointments, insurance, finances, etc. You may wonder how you can help with the patient’s compliance. You may also feel stress due to monitoring the compliance of the patient in addition to providing so much other care. These are valid feelings, but compliance is such a large component in transplant survival that without good adherence the patient could lose their transplant or become very sick.

In 1980 Beck and colleagues completed a study about medication compliance in pediatric renal transplant patients. The study found that initially 26 percent of participants were non-compliant with their medication regimen post-transplant, and after extensive counseling and education 19 percent remained non-compliant with their medication regimen. Factors they found associated with non-compliance were adolescence, female sex, and family instability. Though this study was completed over 30 years ago, it still shows that with family stability, transplant medication compliance may improve.

A different study completed in 1999 by Dew and colleagues found that after heart transplants, focusing on patients’ psychosocial status improved medication compliance which will further improve physical health outcomes. This study helps show that by working with the patient and family post-transplant to ensure their psychosocial status is stable may assist in prolonging their life. This can be done in many ways, including counseling for mental health illnesses, assistance with insurance and financial issues, and even assisting in family issues.

Transplant Eligibility Factors

A patient must meet specific criteria to be eligible for a transplant. Many times, the same criteria is expected to be followed after transplant surgery to increase the longevity of the transplant as well. Each patient’s situation is different, but the criteria may include following a prescription medication regimen and nutrition guidelines, being adherent with medical appointments, abstaining from any drug or alcohol use, and maintaining mental health stability through counseling or medication. Medication, nutrition and appointment adherence are required practically for every transplant. Substance use is never recommended pre- or post-transplant, and counseling for mental health issues may be required depending on the patient’s mental health history.

If a patient is non-adherent to their transplant hospital’s guidelines, it could prevent the patient from receiving a transplant at that hospital. For many people, not receiving a transplant could result in death, which is why adherence is such a large factor for patients and their caregivers. A study by Harper and colleagues (2010) found that almost half of liver transplant candidates failed to meet listing expectations because they failed to remain abstinent from drugs, alcohol or smoking during the time when they required a life-sustaining transplant. Additionally after a transplant is received, if the patient is non-adherent with their medication, nutrition, or drugs or alcohol it could shorten the life of the transplant resulting in rejection.

Simply asking or forcing a person to be compliant with their medical guidelines is not always possible. Medical teams may do what they can to encourage compliance, but ultimately it is the patient’s’ decision and medical right (if they are able to medically make their own decisions) to be non-compliant. At the point of continual non-compliance the medical team can decide to discontinue their relationship with the patient by not listing them at their center for a transplant. It can be very stressful and difficult for the caregiver because the caregiver is on the front line dealing with the compliance issues.

It is hard to identify just one intervention for non-compliance because non-compliance is different in all patients. In 1998 Roter and colleagues found that no one strategy (intervention) showed any clear benefit over another to address non-compliance. A combination of cognitive, behavioral and emotional mechanisms were more effective than one single-focus intervention. Because one intervention for compliance may not be beneficial alone, it is important to have a team of professionals and family or friends to assist in the large issue of non-compliance, such as counselors, social workers, financial experts, etc. Contact the transplant team to discuss different interventions for the patient.

Compliance Factors

Many different factors can play a role in non-compliance, which can make it very complicated to determine why a patient is non-compliant. Financial distress plays a large role in a patient being unable to afford their medication or insurance copays. Emotional distress, or depression, may also make it difficult for a patient to follow their medication or nutrition regimen, or abstain from drugs or alcohol. Many times caregivers are the first to know causes for non-compliance, and are the most continually involved when it comes to encouraging compliance and treating issues resulting in non-compliance in transplant patients. The following are some suggestions that may be helpful for caregivers to better help the patients with adherence issues.

1- Identify reasons for non-adherence

As a caregiver you may have a better chance of identifying exactly what the issue is that is causing the patient to be non-compliant. You can simply ask the patient the cause, but they may not be truthful about the real reason. An example of non-compliance due to financial issues is the patient does not get their medication from the pharmacy on time or at all because the co-pay is too costly. We could guess that the reason for non-compliance with their medication is because they are still getting their medication, but they may not have the funds available when it is time to refill. Another example is regarding insurance premiums: if the patient is paying their premiums late, it may be due to lack of financial stability at the time they are due. As the caregiver, you may see situations similar to this that the transplant team would not see, giving you the opportunity to help address the issue with the support of the transplant team.

Financial issues can largely affect patient adherence. One failed kidney transplant patient, who was on dialysis awaiting a second kidney transplant, once stated that he had to decide whether he would actually eat three meals a day or buy his anti-rejection medication because his funds were so limited. Many transplant patients and their families are faced with situations like this often. Transplants not only cost in medication or premiums, but it can also be costly driving to and from the hospital, or taking a leave from work to help care for a transplant patient. It is important to always seek support from the transplant social worker when financial issues arise so they can provide resources for assistance.

Compliance issues are sometimes also due to depression or lack of effective coping skills. The patient may be less likely to disclose mental health issues or coping issues to a transplant team member. A caregiver may see the patient in their home setting, which can reveal more information than may be revealed to the transplant team who only may see the patient once a month for an hour. For instance, the caregiver notices the the patient sleeps 16 hours a day, or eats much less than they used to- these can be symptoms of depression. Please see Emotional Health for Transplant Caregivers for more information on depression and counseling that can also be beneficial for patients.

Ultimately, it is a person’s right to refuse medical treatment or care, and that includes taking medication or following nutrition or substance abuse guidelines. A transplant caregiver can only do so much to encourage good compliance, and it is important to consider your own frustrations when trying to help another person so you do not become burned-out or depressed. Sometimes the best, and only option, as a caregiver is to report what you see and hear to the transplant team and allow them to provide their assistance because they are the professionals and may know the best options.

2 – Seek an intervention for non-adherence

You may not be able to provide an intervention on your own, so at this step you may need to work with the patient and the transplant team to address the issues causing non-compliance. One single treatment for non-adherence may not be beneficial, and a combination of interventions may work best, as suggested by Roter and Colleagues (1998). If medication non-compliance is the issue and it is due to forgetfulness, then a cognitive, behavioral and emotional intervention may work best together. The patient may be forgetful so an alarm of some sort when medication is due may help. They may be forgetful though due to extreme stress or anxiety from their illness, so some counseling may also be needed. A combination of these interventions may be what is needed to help with the issue.

The transplant social worker and other team members know of treatment options or resources that you may not be aware of, so it is important to allow them to help. For caregivers, it can be physically and emotionally draining trying to encourage the patient to be adherent to their transplant regimen. You might not be able to force the patient to do something they do not want to, which could cause you more stress. Do not forget your own needs when it comes to the stress associated from compliance issues. Read other sections to find ways to help yourself and happy.

3 – Call the transplant team

Informing the transplant team of issues is mentioned in the above sections often, however it is extremely important to remember that the transplant team are the professionals and they are available to help the patient and family through the transplant process before and after the transplant surgery. It is imperative the transplant team be aware if the patient is not taking their medication, paying their insurance premiums, etc. You may feel like a “tattle-tale” by telling the transplant team, but if there is a chance of transplant rejection due to non-compliance then the transplant team must be aware of the situation. To avoid the patient from being surprised or feeling betrayed that you spoke with the transplant team, it may be beneficial to inform the patient prior that you will be contacting the transplant team about the compliance issues. For instance, one way to inform the patient is to tell them you are extremely worried about their health and there are things you cannot help with on your own and you need the assistance from professionals like the transplant team. You can also tell the patient that the transplant team knows many more resources to address the issue and it is important they are contacted. Another option is to offer to the patient that you talk to the transplant team together about the issues that are causing the non-compliance, or that the patient talk to the transplant team about the issues themselves. This may help the patient feel as though you are all on the same team and you are working together. The patient may still be upset with you for talking to the transplant team, but if it means the organ is going to fail and the patient potentially be hospitalized or die, it is more important for the transplant team to be informed.

 

References:

  1. Beck, D.E., Fennell, R.S., Yost, R.L., Robinson, J.D., Geary, D., Richards, G.A., et al. (1980). Evaluation of an educational program on compliance with medication regimens in pediatric patients with renal transplants. Journal of Pediatrics, 96, 1094-1097.
  2. Dew, M.A., Kormos, R.L., Roth, L.H., Murali, S., DiMartini, A., Griffith, B.P. (1999). Early post-transplant medical compliance and mental health predict physical morbidity and mortality one to three years after heart transplantation. The Journal of Heart and Lung transplantation, 18, 549-562.
  3. Harper, R.G., Wager, J., Chacko, R.C. (2010). Psychosocial factors in noncompliance during liver transplant selection. Journal of Clinical Psychology in Medical Setting, 17, 71-76.
  4. Roter, D.L., Hall, J.A., Merisca, R, Nordstrom, B., Cretin, D., & Svarstad, B. (1998). Effectiveness of interventions to improve patient compliance: A meta-analysis. Medical Care, 36, 1138-1161.

 

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