Patients' Decision-making About Kidney Transplantation
Patients' Decision-making About Kidney Transplantation
In this issue of NDT, Calestani et al. report the results of a qualitative study in the UK. The authors interviewed 53 chronic kidney disease (CKD) stage 5 patients about their views on the transplant-listing procedure in their dialysis unit. The interviews focused on the information that patients received on transplantation and the listing assessment process. The study is part of the Access to Transplant and Transplant Outcome Measures (ATTOM) project, which aims to identify patient-specific and service delivery factors that may influence access to transplantation. Besides showing that the provision of information varied in type and purpose across UK renal units, the authors found that patients perceived the information to be suboptimal in terms of its completeness, comprehensiveness and timing. Although Calestani and colleagues are the first to explore the utility of information to support transplant-listing decisions, the pattern of their findings is consistent with several previous studies concluding that patient information for renal replacement therapy (RRT) decisions leaves room for improvement. In order to enhance patients' experiences of decision-making, health care services need to provide accurate and complete information to ensure patients' treatment preferences are informed.
Patient decision aids are information-based interventions informed by clinical evidence and psychological sciences, which help patients make more effective decisions between treatments. Their components usually include: accurate information about all options and their consequences; a structure to enhance understanding of the treatment decision, without bias; guidance to help people evaluate, and trade-off, their values about treatments in the context of their lives. For many treatment decisions, there are decision aids available; some have been designed to guide CKD stage 5 patients' choice of RRT type. Although most of them included transplantation as one of the options, only one specifically compared living versus deceased donation; none of them discussed the choice of whether to transplant pre-emptively or not. The findings from Calestani et al. seem to indicate that patient decision aids are not yet successfully integrated within renal services in the UK.
First, participants reported that the information on transplantation and listing was either too extensive or given too quickly. Especially if information is given verbally during consultations, patients need to attend to, process, store and recall the information in order to clarify their understanding. In addition, when asked to collaborate in decision-making, patients have to evaluate the treatments and consequences and assign importance to them, ask questions and formulate a set of preferences. Patient decision aids usually have a written component that acts as an aide-memoire. Having the information written down contributes to people being able to recall and reason about the options in accordance with their values and allows them to talk about the decision with others.
Secondly, Calestani et al. found that not every participant had been offered all treatment options equally. When it came to discussing pre-emptive transplantation, patients reported experiences ranging from their health care team being very positive about this option to some not being offered this alternative at all. The authors suggest that these findings reflect variation in unit-level characteristics by emphasizing that transplant units were more positive about pre-emptive transplantation than non-transplant units. There is a tendency for patient information to focus on engaging with local service delivery or disease management rather than on unbiased decision-making between options. A previous study in the UK explored reasons for between-centre differences in the proportion of dialysis patients who were on the deceased donor waiting list. Although they found no association with whether the renal unit was also a transplant unit, they did find a relationship with other unit-level characteristics, like the size of the living donor programme.
Participants also felt that their old age or presence of comorbidities had decreased their chances of a transplant-listing assessment. This is concordant with other studies suggesting that clinicians may give priority to patients who they expect to have the greatest health or social benefits from transplantation. In these times of scarce organs, assigning a kidney to an old recipient with relatively limited life expectancy or to a notorious non-complier afflicts other kidney patients on the deceased donor waiting list, some of whom may have a higher probability of a successful procedure. Here, the rights of the individual conflict with what is best for others. Within the context of this utilitarian dilemma, clinicians may refrain from offering certain options based on the (perceived) presence of clinical or social contraindications. Using a decision aid explaining and comparing all transplantation options would ensure that every patient receives complete information, independent of his characteristics or where he is treated. At the same time, it would explicitly prompt health care professionals to express and explain their views on a patient's suitability for transplantation.
There are challenges to designing a patient decision aid for the transplantation context. Few treatment decisions require another person, who you may or may not know, to undergo an operation with potential long-term health consequences in order for the choice to be implemented. In keeping with prior research, patients in the present study indicated that the donor's risk of harm influenced their decision-making, with many preferring to join the deceased donor waiting list instead of asking a family member to become a living donor. It is unclear how best to include information about the impact on another's health in the short and long term in a decision aid aiming to present balanced information about all options. The inter-dependence between the donor and recipient in this disease context suggests that both the donor and recipient would benefit from having different patient decision aids that address equally the impact on the donor's and recipient's short- and long-term health and lifestyle. Although the UK guidelines for living kidney donation recommend that this impact is discussed openly with the donor, decision aids aimed at donors are currently unavailable. For the ATTOM project, it might be of interest to explore provision of information to donors in UK renal units. Adding the donors' perspective to the recipients' and the health care professionals' views would enable drawing a more complete picture of information and decision-making needs around kidney transplantation.
In summary, Calestani et al. show that kidney patients encounter difficulties with making decisions about transplantation, as do renal units with informing and supporting these decisions. It seems likely that developing and adopting patient decision aids may meet services' needs to enhance donor and recipient experiences of transplant decision-making.
In this issue of NDT, Calestani et al. report the results of a qualitative study in the UK. The authors interviewed 53 chronic kidney disease (CKD) stage 5 patients about their views on the transplant-listing procedure in their dialysis unit. The interviews focused on the information that patients received on transplantation and the listing assessment process. The study is part of the Access to Transplant and Transplant Outcome Measures (ATTOM) project, which aims to identify patient-specific and service delivery factors that may influence access to transplantation. Besides showing that the provision of information varied in type and purpose across UK renal units, the authors found that patients perceived the information to be suboptimal in terms of its completeness, comprehensiveness and timing. Although Calestani and colleagues are the first to explore the utility of information to support transplant-listing decisions, the pattern of their findings is consistent with several previous studies concluding that patient information for renal replacement therapy (RRT) decisions leaves room for improvement. In order to enhance patients' experiences of decision-making, health care services need to provide accurate and complete information to ensure patients' treatment preferences are informed.
Patient decision aids are information-based interventions informed by clinical evidence and psychological sciences, which help patients make more effective decisions between treatments. Their components usually include: accurate information about all options and their consequences; a structure to enhance understanding of the treatment decision, without bias; guidance to help people evaluate, and trade-off, their values about treatments in the context of their lives. For many treatment decisions, there are decision aids available; some have been designed to guide CKD stage 5 patients' choice of RRT type. Although most of them included transplantation as one of the options, only one specifically compared living versus deceased donation; none of them discussed the choice of whether to transplant pre-emptively or not. The findings from Calestani et al. seem to indicate that patient decision aids are not yet successfully integrated within renal services in the UK.
First, participants reported that the information on transplantation and listing was either too extensive or given too quickly. Especially if information is given verbally during consultations, patients need to attend to, process, store and recall the information in order to clarify their understanding. In addition, when asked to collaborate in decision-making, patients have to evaluate the treatments and consequences and assign importance to them, ask questions and formulate a set of preferences. Patient decision aids usually have a written component that acts as an aide-memoire. Having the information written down contributes to people being able to recall and reason about the options in accordance with their values and allows them to talk about the decision with others.
Secondly, Calestani et al. found that not every participant had been offered all treatment options equally. When it came to discussing pre-emptive transplantation, patients reported experiences ranging from their health care team being very positive about this option to some not being offered this alternative at all. The authors suggest that these findings reflect variation in unit-level characteristics by emphasizing that transplant units were more positive about pre-emptive transplantation than non-transplant units. There is a tendency for patient information to focus on engaging with local service delivery or disease management rather than on unbiased decision-making between options. A previous study in the UK explored reasons for between-centre differences in the proportion of dialysis patients who were on the deceased donor waiting list. Although they found no association with whether the renal unit was also a transplant unit, they did find a relationship with other unit-level characteristics, like the size of the living donor programme.
Participants also felt that their old age or presence of comorbidities had decreased their chances of a transplant-listing assessment. This is concordant with other studies suggesting that clinicians may give priority to patients who they expect to have the greatest health or social benefits from transplantation. In these times of scarce organs, assigning a kidney to an old recipient with relatively limited life expectancy or to a notorious non-complier afflicts other kidney patients on the deceased donor waiting list, some of whom may have a higher probability of a successful procedure. Here, the rights of the individual conflict with what is best for others. Within the context of this utilitarian dilemma, clinicians may refrain from offering certain options based on the (perceived) presence of clinical or social contraindications. Using a decision aid explaining and comparing all transplantation options would ensure that every patient receives complete information, independent of his characteristics or where he is treated. At the same time, it would explicitly prompt health care professionals to express and explain their views on a patient's suitability for transplantation.
There are challenges to designing a patient decision aid for the transplantation context. Few treatment decisions require another person, who you may or may not know, to undergo an operation with potential long-term health consequences in order for the choice to be implemented. In keeping with prior research, patients in the present study indicated that the donor's risk of harm influenced their decision-making, with many preferring to join the deceased donor waiting list instead of asking a family member to become a living donor. It is unclear how best to include information about the impact on another's health in the short and long term in a decision aid aiming to present balanced information about all options. The inter-dependence between the donor and recipient in this disease context suggests that both the donor and recipient would benefit from having different patient decision aids that address equally the impact on the donor's and recipient's short- and long-term health and lifestyle. Although the UK guidelines for living kidney donation recommend that this impact is discussed openly with the donor, decision aids aimed at donors are currently unavailable. For the ATTOM project, it might be of interest to explore provision of information to donors in UK renal units. Adding the donors' perspective to the recipients' and the health care professionals' views would enable drawing a more complete picture of information and decision-making needs around kidney transplantation.
In summary, Calestani et al. show that kidney patients encounter difficulties with making decisions about transplantation, as do renal units with informing and supporting these decisions. It seems likely that developing and adopting patient decision aids may meet services' needs to enhance donor and recipient experiences of transplant decision-making.
