Keywords

Psychosocial Factors in Diabetes Self-Management

Pancreas transplantation is mostly performed in people with type 1 diabetes and end-stage renal disease (ESRD), most often caused by diabetic nephropathy [1]. The development of diabetic complications, such as diabetic nephropathy, is usually preceded by long-standing phases of impaired glycemic control. Various studies demonstrated that enduring suboptimal glycemic control affects around 25% of the adult type 1 diabetes population and has heterogeneous and multifactorial causes [2].

General Psychosocial Factors Related to Diabetes Self-Management

Apart from medical problems that may hinder optimal glycemic control, such as reduced hypoglycemia awareness, obesity, gastrointestinal neuropathy, lipohypertrophy, and other comorbidity, various psychosocial factors are known to relate to glycemic control. Psychosocial causes for persistent hyperglycemia and inadequate glycemic control appear multifactorial and heterogeneous of character [2]. The relationship between psychosocial factors and glycemic outcomes is mediated by diabetes self-management behaviors. Diabetes self-management refers to various self-care behaviors aiming at optimization of glucose levels and reduction of the risk of long-term complications [3, 4]. For people with type 1 diabetes self-management consists of managing insulin administration, nutrition, physical exercise, and self-monitoring of blood glucose levels with either finger pricks, intermittently scanned, or continuous glucose monitoring ((is)CGM). Additionally, healthy coping, problem solving, and risk reduction behaviors are considered important self-management behaviors for people with diabetes [3, 4]. Various factors can serve as either enablers or barriers of diabetes self-management [5]. In a review, Ahola and Groop [6] summarized psychosocial factors related to diabetes self-management, and distinguished between individual and environment-related factors (Table 25.1). Individual barriers to diabetes self-management include general factors, such as knowledge and health literacy, as well as psychological factors, such as motivation or self-efficacy (one’s confidence in the ability to self-manage) and distinct psychological disorders (e.g., depression and anxiety).

Table 25.1 Psychosocial factors related to diabetes self-management
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Environmental factors related to self-management include socio-economic factors, social support, and factors relating to the availability of good health care [6,7,8].

Given that a variety of psychosocial factors are correlated with self-management and glycemic control, it is likely that these separate factors lead to even more detrimental effects, when combined [9]. This combination of effects explains the least optimal health outcomes in people with socio-economic, educational, and psychological vulnerability [8,9,10,11].

Diabetes Distress: The Burden of Having Diabetes

Long-lasting optimal self-management is challenging, as diabetes is considered one of the most psychologically and behaviorally demanding chronic medical illness [12]. For many people with diabetes, the high and continuous demands of having to manage this chronic condition are an emotional burden [5, 13]. This emotional burden of living with and managing diabetes is also referred to as “diabetes distress” [14], and is known to negatively influence diabetes self-management [5] and glycemic control [15]. People experiencing high levels of diabetes distress in general experience diabetes to be a heavier burden than others. Many struggle with balancing the demands for optimal self-management and other personal goals in life, related to, for example, work, family life, sports, or social activities. Diabetes distress is a generic, overall term for a variety of psychosocial problems related to diabetes. Increased diabetes distress may be the result of perceived interference of diabetes in various life domains, or may be the result of more specific diabetes-related psychological issues, such as diabetes-related fears or diabetes-related problems in social interactions [14].

The Role of Mental Health Problems

In addition to experiencing diabetes distress, people with type 1 diabetes are faced with a higher risk of mental health problems [16, 17]. Mental health problems can refer to distinct psychological or psychiatric disorders (e.g., depressive disorder, anxiety disorder, eating disorder) as defined by DSM (Diagnostic and Statistical Manual of Mental Disorders) criteria, as well as to milder psychological problems (e.g., decreased mood, fears, eating problems, acceptance problems) that not meet full diagnostic criteria for disorders (yet). Furthermore, mental health problems can refer to more generic problems that may also exist in non-diabetes populations, e.g., mood, personality, as well as to diabetes-specific problems, such as fear of hypoglycemia or insulin omission to control weight (“diabulimia”). Prevalence rates of mental health problems in people with type 1 diabetes have been found to range between 11 and 84% for mood disorders [17, 18], between 30 and 80% for anxiety disorders [17, 19], and between 5 and 50% for eating disorders [20, 21] depending on the definition, cut-offs, or DSM criteria for disorders being used. It is suggested that the prevalence of mental health problems in people with type 1 diabetes is often under-reported, under-diagnosed, and under-treated [16]. Mental health problems in adults with type 1 diabetes have been associated with suboptimal self-management [6] and glycemic control [8, 16].

The impact of depressive symptoms or disorders on diabetes self-management, glycemic control, and quality of life has been studied most. Depressive symptoms in people with diabetes are known to have a major impact on overall functioning, diabetes self-management, health care utilization, and glycemic control [18, 22].

The Role of Psychosocial Factors in Developing Diabetes-Related Complications

Given the association of mental health problems, self-management, and impaired glycemic control, it is not surprising that people with diabetes and comorbid mental health problems present with higher rates of complications [8, 9, 23]. This relationship between mental health and diabetes-related complications is bidirectional. Experiencing hindering, exhausting, or painful diabetes-related complications deteriorates quality of life and increases the risk of diabetes distress, mood-related disorders, or other mental health problems [22, 24]. Inversely, diabetes-related complications can also result from pre-existing psychological or psychiatric problems that negatively affected self-management and glycemic control. In a long-term follow-up of women with type 1 diabetes, Goebel-Fabbri [25] and colleagues found insulin restriction in the context of eating disorders at baseline to relate to nephropathy and foot problems at follow-up. A review on the longitudinal relationship between depression and diabetes complications found baseline depression to be related to long-term micro- and macrovascular damage [22].

Contrary to what may be assumed, being confronted with complications or feeling anxiety about declining health does not necessarily lead to positive changes in diabetes self-management. When anxiety levels are too high, or not combined with increased self-efficacy (feeling confident in being able to optimize self-management), being confronted with increasing complications may even lead to avoidance and a decrease of self-management [26]. Additionally, several studies show that people’s understanding of the severity of developing complications and the necessary self-management changes is lower than expected. A study on self-management interventions for people with diabetes at high risk of progressive kidney disease showed that although most people had some understanding of the risk of kidney failure, they reported to have insufficient knowledge of what they could do to prevent progression themselves [27]. A systematic review on patients’ experiences after chronic kidney disease (CKD) diagnosis identified “disbelief” and “uncertainty about the permanence of CKD” to be commonly expressed barriers in understanding CKD, especially in asymptomatic patients [28]. An additional and commonly shared feeling among patients was that they had received insufficient information about CKD and what they could do to prevent progression [28].

Knowing the relationships between psychosocial factors, diabetes self-management, glycemic control, and diabetes-related complications, it is most likely that many simultaneous pancreas-kidney (SPK) or solitary pancreas transplant recipients have struggled with psychosocial factors of diabetes, at least during some time in their lives. Following the increased prevalence rates of mental health problems in people with (complicated) diabetes, the number of mental health problems in pancreas transplant candidates is assumed to be relatively high.

How Psychosocial Factors Relate to Transplantation Outcomes

Increasingly, psychosocial factors have been acknowledged to play a role in both pretransplant health and posttransplant outcomes [29, 30]. Within the general field of solid organ transplantation, there is growing awareness that psychosocial factors strongly influence posttransplant outcomes. Numerous prospective studies and systematic reviews have been able to identify psychosocial risk factors relating to important posttransplant clinical endpoints [31,32,33,34,35,36,37,38]. Psychosocial factors have shown to relate to adverse transplant outcomes, such as infection, graft rejection/loss, hospital readmissions, and mortality [37, 39].

The link between preoperative psychosocial factors and postoperative adherence to the immunosuppressant regimen is most studied and best described. Prevalence rates of non-adherence in transplant recipients hugely diverge (2–67%) depending on definitions and assessment methods of non-adherence [35, 38]. A literature review on the prevalence of non-adherence in adult kidney transplant patients reported a weighted mean prevalence of 27.7% [38]. A meta-analysis on rates of non-adherence after solid organ transplantation reported a calculated non-adherence rate of 35.6 cases per 100 kidney transplants (per year) not being adherent to immunosuppressant medication [36].

Specific psychosocial factors have been identified as high risk factors for posttransplant non-adherence including psychological and psychiatric disorders [38], negative personality traits [37], pretransplant non-adherence [37, 38], and active substance use [38, 40]. Personality disorders are associated with adherence problems in a variety of forms, i.e., not keeping appointments, misusing other drugs, and violating medical treatment regimens [41].

Apart from the negative impact of psychological and psychiatric disorders on posttransplant adherence, such disorders also increase the risk of pre- or posttransplant psychological decompensation [42]. Depression is increasingly recognized as a common phenomenon in organ transplant recipients and is associated with increased risk of mortality [43]. Having a history of pretransplant psychological trauma has been found associated with an increased risk of posttransplant posttraumatic stress disorder (PTSD). Reactivation of old psychological trauma by invasive medical procedures or life events is a common phenomenon in hospital settings [44]. PTSD symptoms in transplant recipients have been found associated with an increased risk of treatment non-adherence and mortality [43].

To our knowledge, no studies on psychosocial risk factors for non-adherence or adverse transplant outcomes in pancreas transplant recipients are available. However, our study on psychological symptoms and quality of life in SPK recipients supports the assumption that the prevalence of mental health problems in pancreas candidates is high [45]. In this study SPK recipients reported higher scores of psychological symptoms (pre- and posttransplant), with posttransplant scores still being higher compared to a reference group of people with type 1 diabetes. Psychological symptoms were found to contribute to limited quality of life posttransplant, which underscores the importance of identification of psychological symptoms pre- and posttransplant.

The Psychosocial Evaluation of Pancreas Recipients

The assumed higher prevalence of mental health problems among pancreas transplant recipients validates a profound assessment of past and current mental health, as well as barriers of past and current self-management (see Table 25.1). While medical screening of transplant recipients is well established and has been shown to relate to better clinical endpoints, such as decreases in mortality, graft loss, infections, and hospitalization [46] so far, no clinical guidelines for psychosocial diagnostics or treatment are available. This absence of standards and guidelines is likely to have resulted in great variance between transplant centers regarding psychosocial factors that are taken into account in the psychosocial screening of transplant recipients.

In this paragraph we describe relevant domains and topics in the psychosocial evaluation of transplant recipients. In addition, we suggest the inclusion of pancreas-specific domains and topics, based on our ample experience with pancreas transplantation at Leiden University Medical Center (LUMC) in the Netherlands. Since 1984, more than 500 pancreas transplantations (approximately 450 SPK and 50 solitary pancreas transplantations) have been performed in our center (during the past 10 years approximately 20 transplantations per year—17 SPK and 3 solitary pancreas transplantations). In the past few years the psychosocial evaluation and care of pancreas transplant recipients has become increasingly important and is considered an essential part of the multidisciplinary treatment of pancreas transplant recipients at LUMC. In this paragraph we share our vision on relevant pancreas-specific domains, instruments and goals for the psychosocial evaluation of pancreas candidates.

Which Factors to Assess?

Despite this lack of standards and guidelines, there is more general consensus on relevant life domains and topics that should be addressed in pretransplant evaluation [30, 47, 48]. Summarizing current literature on psychosocial factors related to adverse transplant outcomes, Table 25.2 describes domains that are considered relevant in the psychosocial screening of transplant recipients.

Table 25.2 General domains in the psychosocial screening of transplant recipients
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In addition to identifying psychosocial risk factors for adverse transplant outcomes, a psychosocial evaluation of pancreas candidates should also address psychosocial factors related to diabetes self-management and glycemic control. Identifying psychosocial barriers to diabetes self-management and glycemic control serves two goals. First, it may enable candidates and health care professionals in optimization of glucose regulation while on the transplantation waiting list. In people with long-term impaired glycemic control and advanced retinopathy, improving glycemic control prior to transplantation is important to halt progression of complications, especially when there is a long-waiting list time. In general, rapid improvement in glycemic control in some patients with advanced diabetic retinopathy may lead to acute worsening of diabetic eye disease although the mechanisms are not known [49]. Second, having insight in candidates’ psychosocial barriers to diabetes self-management and glycemic control is helpful in identifying those who may need help and guidance in maintaining glycemic control, when full insulin independence after transplantation is not achieved.

Psychosocial and diabetes-specific domains that are considered relevant in the screening of pancreas candidates are as follows:

  • Past and current psychosocial barriers to diabetes self-management,

  • Diabetes distress,

  • Mental health problems related to diabetes self-management/poor glycemic control.

Differentiating Screening Strategies for SPK, PAK, and PTA

Although the need for a psychosocial assessment of pancreas recipients might be considered identical to other transplant patients, the purpose of a psychosocial assessment in pancreas transplantation is twofold. One is to detect patients at high risk for posttransplant non-adherence, adverse medical outcomes, and decompensation, similar to other transplant patients. Secondly, psychosocial screening may detect patients in whom psychosocial factors led to suboptimal diabetes self-management and glycemic outcomes, that could still be improved during work-up, or would redirect a patient to alternative (psychological) interventions, other than transplantation.

In practice, the purposes of psychosocial assessment in pancreas transplant recipients differ, depending on the type of transplant (SPK, pancreas after kidney (PAK), or pancreas transplant alone (PTA)).

Simultaneous Pancreas-Kidney

The primary goal of a psychosocial screening of patients potentially eligible for SPK is to detect people at high risk for posttransplant non-adherence, adverse medical outcomes, and psychological decompensation, similar to the psychosocial screening of other organ transplants. This primary goal also includes pancreas-specific topics relating to expectations and anticipated coping regarding insulin independence (“what it is like to live without diabetes,” “trusting your body,” “decreasing monitoring”), as well as the psychological resilience to cope with a potential pancreas transplantectomy shortly after the transplant, usually due to thrombosis or bleeding, or re-initiation of insulin usually due to rejection (“having to live with diabetes again”).

Secondary goals of the psychosocial screening of SPK candidates are to understand psychosocial factors relating to past and current glycemic control. People referred for SPK are characterized by end-stage renal disease. Often, kidney failure is the result of diabetic nephropathy and preceded by long-term phases of suboptimal diabetes self-management, either intentional or non-intentional [50]. For some people, who were diagnosed with type 1 diabetes several decades ago, suboptimal self-management was the non-intentional consequence of suboptimal insulin regimens, monitoring tools, and lack of self-management support [51, 52]. For many others, long-term phases of suboptimal self-management relate(d) to psychological struggles with having diabetes, such as problems of acceptance, eating problems, fears of hypoglycemia, problems with disclosure/showing diabetes, or other non-DM-specific psychopathology.

In some cases, people referred for SPK will follow a two-way trajectory. When the urgency of treating kidney failure is high, a candidate may be put on the waiting list for SPK as well as on the list for a living donor kidney transplantation alone (KTA). In this latter case, a KTA will prevent dialysis, and could be followed by a pancreas transplant within months after the kidney transplantation.

The goals of a psychosocial assessment of people in this two-step trajectory are considered identical to the psychosocial screening of SPK candidates. After all, at the moment of screening these candidates still have ESRD and do not use immunosuppressants yet.

Ultimately, pretransplant psychological screening aims to differentiate between absolute psychosocial contra-indications of transplantation and factors that need further (psychological) interventions during work-up to optimize psychological health, self-management, or social circumstances and therewith decrease posttransplant risks. In clinical practice, however, the degree and urgency of kidney failure will be most dominant in considering SPK (or a kidney alone, followed by a pancreas transplantation at a later stage), even when psychological health, diabetes self-management, or social circumstances are suboptimal. Potentially, the urgency of kidney failure may lead to suboptimal use of pretransplant psychosocial screening, in which psychosocial risk factors are identified, but not followed up upon since they are not considered decisive for transplantation. This seems to be confirmed by studies demonstrating a relationship between higher rates of posttransplant non-adherence in kidney transplant recipients and less stringent psychosocial criteria pretransplant [36], compared to other organ transplant populations with equally complex medical regimens.

Investing in the psychosocial evaluation of transplant candidates, but not following up on risk factors is a missed opportunity. Some suggest that pretransplant screening should be considered a means to intervene in the transplantation process, rather than a way to in- or exclude patients from transplantation [53]. From this perspective, pretransplant screening aims to answer the question: “what is needed to improve this candidate’s chances of long-term transplant success?” Psychosocial screening then evolves from a primarily diagnostic tool to a first step in (multidisciplinary) treatment. Next to acquiring information on psychosocial risk factors, screening can be used to inform candidates about the relationship between psychosocial risk factors and adverse transplant outcomes, as well as treatment options. Consecutively, identified psychosocial risk factors for transplantation should be included in a personalized treatment plan that helps candidates optimize mental health, self-management, or social circumstances. In the whole process of psychosocial evaluation and development of the personalized treatment plan, the relationship between transplant candidates and health care professionals ideally is a strong alliance, that pursues mutual goals regarding optimizing transplant circumstances.

Pancreas Transplant Alone

Different than in people who are referred for SPK or PAK, the primary goal of psychosocial screening of people referred for pancreas transplantation alone (PTA) is to identify psychosocial factors that may explain current suboptimal glycemic control and that may be responsive to other less invasive and costly interventions than transplantation and the lifelong use of immunosuppressants. In the absence of kidney failure, this group of people is characterized by severe problems in glucose regulation that have not responded to medical, technological, or psychological interventions so far. Key in the psychosocial screening of this group is to understand potential underlying psychological mechanisms that may be related to potential suboptimal self-management and glycemic control and to evaluate best treatment options. Understanding psychosocial barriers to optimal self-management is an important step in deciding for which patients PTA is the only and final therapy in optimizing glycemic control.

Although exact numbers are lacking, in clinical practice, the prevalence of mental health problems in this group is higher than in the group of people opting for SPK/PAK. The relationship between mental health problems and glycemic control in people referred for PTA appears to be bidirectional. On one hand, having to deal with excesses in glycemic control (either at high or low glucose concentrations) may hinder people in living a normal life, reduce their quality of life, and increase the risk of mental health problems. On the other hand, mental health problems, either diabetes related or non-diabetes related, can also to play a role in the maintenance of extremes in their glucose regulation.

In addition to understanding psychosocial factors in glycemic control, psychosocial screening of people opting for PTA focuses on factors relating to an increased risk of non-adherence, complications, or psychological decompensation, similar to the screening of people opting for SPK or PAK, or other organs.

Pancreas After Kidney

Many candidates for PAK involve patients who had either had a recent living donor kidney transplant or have undergone a recent pancreas transplantectomy shortly after SPK. In these patients a recent psychological evaluation had already taken place. In case of a recent pancreas transplantectomy or a kidney transplant with a traumatic course, psychological consultation could be useful when the recent psychosocial evaluation identified risk factors for psychological decompensation (e.g., a history of depression, anxiety, or PTSD) or when symptoms of anxiety, depression, or trauma are already present.

For other patients that are screened for PAK, most questions regarding high risk factors of problems relating to adherence, complications, and decompensation will be answered by recipients’ current status. In clinical practice, people who struggle with adherence to immunosuppressants, high-risk lifestyle problems, or have psychologically decompensated after kidney transplantation will probably not be referred (yet) for PAK. Psychosocial screening will then mostly focus on mapping the current status and potential changes in relevant psychosocial factors, as well as a candidate’s experiences with kidney transplant and life thereafter. Current negative emotions, such as anxiety, disappointment, low mood, as well as struggles with body image, sexuality, or re-engaging in social or work life (see also section “Life after transplantation: the importance of psychosocial factors”), are topics that could be discussed and weighed against the advantages of an additional pancreas transplant. Patients’ needs for additional education, support, or psychosocial treatment should be inventoried. Patients with PAK are already on immunosuppressive agents and with a functioning kidney have already shown therapy adherence. However, it is important to determine whether there were previous rejection episodes and whether they were related to inadequate therapy adherence. This can be a topic of discussion during evaluation.

In some specific cases, with high medical or surgical risks of an additional pancreas transplant, psychosocial screening could help inventory behavioral and psychological options to optimizing glycemic control that can help in shared decision making on whether or not to go ahead with a pancreas transplant.

Given the scarcity of studies on psychosocial factors in pancreas transplantation, the field clearly is in need of more research exploring relationships between psychosocial factors and (medical and psychological) transplant outcomes. Until then, existing knowledge on psychosocial screening of general transplant recipients will give best directions to clinicians and researchers in pancreas transplant teams. Following the general consensus on life domains that should be addressed during pretransplant evaluation [30, 47, 48], Table 25.3 proposes relevant domains for the psychosocial screening of pancreas recipients, distinguishing between SPK/PAK and PTA.

Table 25.3 Psychosocial factors in the screening of pancreas candidates
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Screening Methods and Instruments

Knowing that standards and guidelines for the psychosocial evaluation of transplant recipients are absent, it is generally assumed that the variation in psychosocial criteria and assessment methods used in pretransplant evaluation is high [29]. The psychosocial evaluation of transplant recipients in most centers will rely on psychometric (self-report) questionnaires combined with (structured) clinical interviews by a psychologist or psychiatrist [30, 54]. In addition to clinical interviews and psychometric questionnaires an evaluation of past medical and psychological or psychiatric records can provide further important data, especially in more complex cases where a one-time evaluation by definition is inadequate [54]. In cases of active psychological or psychiatric treatment, consultation with current mental health care professionals is helpful and a first step in bridging the gap between external mental health care professionals and the transplant team.

Questionnaires

Psychometric questionnaires can provide baseline measures of psychological and behavioral risk factors, as well as objective cut-off scores for interpretation. A variety of validated and widely used questionnaires is available to assess general psychological concepts, such as well-being, mood, anxiety, or other psychological symptoms. Table 25.4 describes general psychometric questionnaires that have been used in the psychological screening of transplant recipients [55,56,57,58,59,60,61].

Table 25.4 Psychometric tools that may be used in the psychosocial evaluation of pancreas recipients
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Disease-specific questionnaires may be used to assess disease-specific quality of life, distress, and self-management. In the case of screening for pancreas transplantation, a variety of diabetes-specific questionnaires is available to assess diabetes-related quality of life, diabetes distress, diabetes self-management, and common psychological barriers in diabetes self-management. Table 25.4 includes diabetes-specific questionnaires that could be useful in the psychosocial screening of pancreas recipients [62,63,64,65,66,67,68].

Dobbels and colleagues [69] performed a systematic review of self-report medication adherence instruments that may be useful for detecting non-adherence in a transplant setting. Three instruments fulfilled the criteria of (a) being short and easy to score, (b) assessing both the taking and timing of medication intake, (c) having established reliability and validity. The Basal Assessment of Adherence Scale for Immunosuppressives (BAASIS), the Brief Antiretroviral Adherence Index (AACTG), and the Medication Adherence Self-Report Inventory (MASRI) met aforementioned criteria. However, the authors emphasize that validity of all of these instruments has only been established in patients with HIV and that further validation in transplant populations is required [69].

In addition to psychological, disease-specific, and adherence questionnaires, transplant screening tools are available to evaluate general psychosocial factors relevant to transplantation. The Psychological Assessment of Candidates for Transplantation (PACT) scale [70], the Transplantation Evaluation Rating Scale (TERS) [70], and the Stanford Integrated Psychosocial Assessment for Transplantation (SIPAT) are general transplant screening tools [47].

The PACT is a semi-structured, eight-item, clinician-rated instrument that assesses patients’ social support, psychological health, lifestyle factors and medication compliance, and patients’ understanding of transplantation. Overall composite scores are calculated, with higher scores representing better candidacy for transplantation [70]. In a study on identification of high-risk patients in pediatric kidney transplantation, PACT scores were found to be associated with lower odds of acute rejection, after adjusting for HLA mismatch [71].

The TERS is an expert-rated instrument to assess ten different biopsychosocial variables (psychiatric history, substance use/abuse, compliance, health behaviors, social support, history of coping, coping with disease and treatment, quality of effect, and past and current mental status). Composite overall scores result in three categories: good, moderate, and insufficient. The TERS has been found useful in the psychosocial evaluation of lung transplant candidates. However, in a study on the relationship between TERS scores and medical outcomes in living donor kidney transplant recipients, TERS categorizations were not found to relate to medical outcomes at one-year posttransplant [72].

SIPAT is an assessment tool for the psychosocial evaluation of solid organ transplant candidates, evaluating 18 psychosocial risk factors for transplantation, divided into four domains: (a) Patient’s Readiness Level and Illness Management, (b) Social Support System Level of Readiness, (c) Psychological Stability and Psychopathology, and (d) Lifestyle and Effect of Substance Use. Based on these 18 factors, a total psychosocial risk score (from 0 to 115) can be calculated [47]. A recent study examined the relationship between SIPAT scores and demographic data with medical transplant outcomes within a diverse kidney/kidney-pancreas transplant population [73]. SIPAT scores were found to relate to support system instability and the development and/or relapse of substance use. Trends were found for a relationship between demographic variables and psychopathology, graft loss, rejection, infection, and medical rehospitalizations [73].The authors suggest that inclusion of additional demographic variables in the SIPAT may lead to improved prediction of kidney/kidney-pancreas transplant outcomes.

At Leiden University Medical Center self-report standardized questionnaires are sent to pancreas transplant candidates prior to a clinical interview with a psychologist. The self-report questionnaires assess current well-being, quality of life, general anxiety, psychological symptoms, diabetes distress, diabetes self-management, fear of hypoglycemia, and diabetes-related eating problems. The most noticeable results from these questionnaires are discussed in the interview.

In the choice of questionnaires we have focused on current well-being/mental health, (diabetes) distress and self-management. Although we recognize that assessing other psychological concepts, such as personality could be of additional value, we think that assessing past and current mental health and self-management (including health care and lifestyle behaviors) provides more direct and relevant relationships with pancreas transplant outcomes as well as indications for treatment.

In addition to the assessment of current well-being/mental health, (diabetes) distress, and self-management in the questionnaires, past and current psychological problems/disorders are discussed comprehensively in the clinical interview(s) (see also section “Clinical Interviews”).

Although it is helpful to learn about patients’ well-being, distress, and self-management prior to the interview, it is noted that some people present with very socially desirable responses, not reporting any problems. In this population with often serious problems with glycemic control and/or diabetes-related complications, the absence of any problems relating to well-being, distress, or self-management should be considered remarkable. These people may need the clinical interview first to gain their trust, and make them feel more at ease with presenting their problems and barriers (see also sect Interpretation of Questionnaires and Interviews).

Clinical Interviews

Psychometric questionnaires facilitate efficient assessment of psychosocial factors and warrant the use of cut-offs and norm scores for most objective interpretation, but should always be combined with a clinical interview [30, 40, 54]. Given the high comorbidity of mental health problems within the transplant population, it is recommended that affiliated transplant psychologists or psychiatrists administer such clinical interviews. Having expertise on (complex) psychological or psychiatric disorders as well as on diabetes and transplantation is a prerequisite for a sound and all round clinical judgement on the interaction between a patient’s mental and physical health. In more complex cases, additional psychodiagnostic evaluation (by clinical psychologists or psychiatrists) may be needed, before reliable estimates of psychosocial risk factors can be made. As is common in psychodiagnostic interviews, it is recommended that the interview involves both the candidate and his or her partner/family [54].

The clinical interview should address psychosocial factors related to adverse transplant outcomes as well as psychosocial factors related to diabetes self-management and glycemic control. Final questions to be answered, specific for SPK, PAK, and PTA, are described in Table 25.3. Since evaluation of all psychosocial factors related to adverse transplant outcomes and glycemic control is hardly possible in one (or even multiple) clinical psychological/psychiatric interview, it is recommended to distinguish between factors that need psychological or psychiatric expertise (e.g., psychological barriers in diabetes self-management, psychological and psychiatric disorders, and treatment) and social factors that could be addressed by social workers or transplant nurses in additional interviews or consultations (e.g., social situation, finances, support).

In clinical practice it can be challenging to find a balance between collecting sufficient information, available time, and not overloading patients. In patients without (a history of) mental health problems, a one-time interview with a psychologist/psychiatrist will probably be sufficient. However, in more complex cases an extended intake may be needed, with additional (telephone/video) interviews or even consultation with (previous) mental health care professionals.

Naturally, it is difficult to provide absolute and definitive answers to the question for which patients pancreas transplantation is considered a high- or low-risk procedure in terms of mental health or health behavior. However, we think that the questions as presented in Table 25.3 provide a helpful framework and focus in the psychosocial evaluation of pancreas candidates.

Interpretation of Questionnaires and Interviews

When interpreting psychometric questionnaires and interview responses transplant team members should keep in mind the possibility of patients minimizing problems and barriers, as a consequence of the desire to be seen as an eligible transplant candidate [30]. This tendency to socially desirable responses in transplant candidates has been confirmed by Putzke and colleagues [74] who found that candidates who were given anonymous self-report measures reported much higher levels of anxiety than those who were not evaluated anonymously. On the other hand, being psychologically evaluated for a long-waited and life-changing event can also cause nervousness and anxiety for patients and their relatives, that should also be taken into account when interpreting evaluation results [54, 75]. The use of objective norms and cut-off scores, multiple sources of information, and structured interviews with candidates and significant others may help guarantee that conclusions are based on most truthful and relevant responses [30].

To reduce patients’ nervousness as well as to prevent socially desirable answers, we think the clinical interviews should be preceded by a friendly introduction of the “why” and “how” of the interview. In our experience, gaining patients’ confidence in the clinical interviews is an important prerequisite for patients to present their situation as open and honest as possible. This prerequisite is best realized by explaining that the goal of the interview is to optimize personal circumstances that may be of influence on transplant outcomes. This is in line with previously mentioned suggestions that pretransplant screening should be considered a means to intervene in the transplantation process, rather than a way to in- or exclude candidates from transplantation [53]. The psychosocial screening then is the first step in (multidisciplinary) treatment, rather than a primarily diagnostic tool, and the first step in building a strong alliance between candidates and health care professionals.

Who Performs the Assessment

In clinical practice, screening methods and instruments used in transplant recipients will strongly depend on the availability of multidisciplinary team members or consultants entitled and trained to administer and interpret specific methods or instruments. Similar to the suspected high variation in screening factors and methods, it is likely that the variation in the availability of multidisciplinary health professionals in transplant teams is high. Psychiatrists, psychologists, social workers, behavioral scientists, and specialized nurses have all been found to administer (parts of) psychosocial screening of transplant recipients [30]. Many transplant centers use a stepwise screening approach, with social workers evaluating transplant candidates, only referring them to psychologists or psychiatrists on indication. Contrary, other transplant centers require all candidates to be evaluated by affiliated clinical psychologists or psychiatrists [54].

At Leiden University Medical Center (the Netherlands) we adopt a multidisciplinary psychosocial screening approach with all pancreas transplant candidates being interviewed by both social workers and clinical psychologists. The clinical psychology service is integrated in the diabetes and transplantation center. Affiliated psychiatrists are available for consultation or additional psychodiagnostic evaluation on indication.

In the interview with social workers candidates’ social situation, social support, work, finances, and substance use are evaluated. The interview with the clinical psychologist focuses on past and present psychological barriers of diabetes self-management, past and present mental health problems, past and present psychological/psychiatric treatment, and expectations of transplantation and life thereafter. Psychiatrists are consulted for questions on pharmacological treatment of psychiatric disorders, or in cases of severe and active psychiatric disorders that need psychiatric treatment.

In the absence of clear guidelines, mental health care professionals involved in the psychosocial screening of pancreas candidates find themselves confronted with a multitude of choices regarding assessment methods and instruments. Despite the lack of guidelines, more general consensus on relevant topics and domains in the psychosocial screening of transplant patients is available. By presenting Table 25.3 and the discussion in this paragraph, we hope to have added relevant pancreas-specific topics and domains and to have shed more light on the underexposed field of psychosocial screening of pancreas transplant recipients.

Deciding on Eligibility and the Waiting List: Which Psychosocial Factors Play a Role?

Deciding on Eligibility

After medical and psychosocial screening, transplant team members will need to decide on a patient’s (current) eligibility for transplantation. Deciding on a candidate’s eligibility ideally is a multidisciplinary process, with every team member advocating different transplant domains (e.g., medical, surgical, social, psychological/psychiatric). When psychosocial screening has identified potential barriers to successful transplant, a distinction should be made between modifiable risk factors and actual contra-indications. Regarding the psychological domain, screening for pancreas transplant may lead to the following conclusions:

  • Transplant is a good treatment option, and there are no indications for further psychosocial assessment or psychological/psychiatric treatment;

  • Transplant is a good treatment option; identified psychosocial risk factors are part of a personalized treatment plan that aims at optimizing risk factors during time on the waiting list and/or after transplantation;

  • Psychosocial factors indicate that pancreas transplantation is not the best treatment option (at this moment).

For people referred for SPK (or KTA followed by PAK), most psychosocial barriers will prove to be modifiable with (psychological or psychiatric) treatment and should not be considered hard contra-indications for transplantation. After all, ESRD will leave little alternative treatment options other than (kidney) transplant. Only acute and severe psychiatric problems that most definitely hinder medical treatment (e.g., active substance abuse, active suicidality) and that have not responded to psychiatric treatment yet may lead the transplant team to decide not to (yet) list the patient for SPK transplant. Most other identified psychosocial barriers in people who are screened for SPK should be considered modifiable risk factors that must be addressed while on the waiting list.

Depending on the available psychosocial treatment within the transplant setting, people listed for SPK could be referred for social, psychological, or psychiatric monitoring and/or treatment, either in the transplanting or referring hospital or in general mental health care.

For people referred for PTA the first question to be answered after the psychosocial evaluation is whether mental health problems are thought to relate to the excesses in glucose regulation. If so, a distinction then needs to be made between mental health problems that are modifiable by (psychological/psychiatric) treatment, and mental health problems that are not expected to change by (psychological/psychiatric) treatment. If mental health problems are not related to glucose regulation or not expected modifiable by (psychological/psychiatric) treatment, PTA should be considered a relevant treatment in optimizing glycemic control.

On the Waiting List

For many people, being on the waiting list for pancreas transplantation marks the beginning of a new phase in coping with diabetes, both physically and emotionally. This new phase not only represents feelings of hope on improved physical health in the long term, but can also induce fear of risks of surgery, feelings of uncertainty [76], and anticipated worries about changes in identity or personality, when living with someone else’s organs [54, 76]. In addition, many people will experience further decline of health while on the waiting list, which is likely to reduce quality of life and increase the risk of developing mental health problems [77, 78].

Within the general field of transplantation, the preoperative waiting list period has been acknowledged the most stressful time in the transplantation process [75]. Apart from mental health problems that may have been present before and during psychosocial screening, some people will only develop mental health problems while on the waiting list. Transplant candidacy has been shown to relate to increased risks of psychological distress, fatigue, depression, and anxiety [75, 78]. In part, these negative emotions can be explained by declining physical health as a result of decreasing kidney function [78]. But other factors have also been found to contribute to decreasing psychological health while waiting for transplantation. Myint and colleagues [79] studied quality of life of patients waiting for SPK, comparing them to kidney transplant alone (KTA) candidates and a general dialysis population. Although SPK candidates had better physical function and less pain than a general dialysis population, SPK candidates were more vulnerable to the effects of their illness in areas of social, emotional, and physical interactions. Furthermore, patients about to undergo SPK transplantation were younger than waitlisted kidney only patients, had a shorter time on dialysis, but reported poorer energy, social support, and social function [79].

Psychological support or treatment can promote and improve psychological health of transplantation candidates before transplantation [30, 75]. Support groups could promote healthy coping and realistic expectations by educating on strategies to deal with feelings of uncertainty, fear, and hope and prepare for posttransplant life [78, 80].

For eligible transplant candidates with identified psychosocial risk factors that require psychological or psychiatric treatment, their personalized treatment plan should contain (multidisciplinary) treatment goals while on the waiting list. However, the average time on the waiting list varies per country from months to years and will influence the nature of the treatment plan. Affiliated transplant psychologists and/or psychiatrists can play an important role in pretransplant preparation of candidates. Pretransplant treatment of psychological/psychiatric disorders has been shown to result in a relevant remission of symptoms [54] that will decrease the risk of adverse posttransplant outcomes. Depending on the availability of psychological and psychiatric care in the transplantation center, as well as the distance of patients’ homes to the center, transplant psychologists and/or psychiatrists can either treat patients themselves, or fulfill a consulting role in the treatment led by other psychologists/psychiatrists. Having expertise on both mental health care, diabetes, and transplantation, affiliated psychologists/psychiatrists can help develop a strong alliance between candidates, the pancreas transplant team, and mental health professionals [75]. In the pretransplant treatment of psychological and/or psychiatric problems, pancreas candidates and transplant psychologists/psychiatrists will usually benefit from patients’ increased motivation to optimize well-being, diabetes self-management, and lifestyle changes for transplantation [40]. Likewise, psychologists and psychiatrists can modify motivational problems during treatment when apparent. For people with severe, chronic mental health problems, intensifying psychological or psychiatric treatment can help improve diabetes self-management and necessary lifestyle changes while on the waiting list [54]. Ideally, health care professionals and candidates aim to develop a long-term (life-long) psychiatric treatment plan, that takes into account risk factors and patients’ needs before, during, and after pancreas transplant [40].

Treatment of psychological or psychiatric disorders in transplant candidates in essence is similar to treatment of other patients with comorbid mental and physical health problems. Treatment options include various forms of psychotherapy, individually or group-based or pharmacological interventions. Group-based psychotherapeutic interventions have been found to decrease depression and anxiety and to improve social and emotional role functioning in both pre- and posttransplant patients [30]. Intervention components included emotional support, cognitive behavioral strategies, and psychoeducation [30]. Specific groups have been developed to meet specific needs in various stages of the transplantation process and have shown to increase compliance and rehabilitation of transplant recipients [75].

Apart from treatment of mental health problems, transplant social workers, psychologists, and psychiatrists may play a role in monitoring psychosocial factors of candidates on the waiting list. Knowing that many pancreas recipients present with premorbid mental health problems, and that others may develop mental health problems while on the waiting list, it is recommended to monitor psychosocial factors during the entire waiting period. Similar to the psychosocial screening, monitoring can be facilitated by means of psychometric questionnaires that are filled out preceding follow-up consultations, or with regular intervals independent from follow-up.

Life After Transplantation: The Importance of Psychosocial Factors

Postoperative Recovery

Posttransplant life is characterized by major physical and emotional changes [75]. Waking up after surgery marks the beginning of a new psychological process, getting to know one’s renewed body and slowly stepping into (re)new(ed) life activities. In general, having experienced a long-awaited transplant can cause a mixture of emotions, both positive and negative [54]. Experiencing postoperative pain, being in an unfamiliar setting, and fully depending on help of others can easily lead to emotional distress [54]. In this postoperative stage, some patients express emotional confusion, having expected feelings of gratitude and joy, not feeling entitled to feel sad or depressed after having received such an enormous “gift” and opportunity. Transplant team members can help by normalizing emotional distress after surgery and explain that negative emotions can co-exist with positive feelings of joy, curiosity, or gratitude.

When transplantation has been successful, most recipients will experience insulin independence for the first time in many years. Again, this can cause a mixture of positive and negative emotions. In our experience at Leiden University Medical Center, some patients express that they find it hard to believe that euglycemia will remain without administering insulin. Disbelief, uncertainty and fear are common psychological responses to experiencing renewed insulin-independence. While disbelief, uncertainty and fear are common in other organ transplant recipients as well, for pancreas recipients they may lead to frequent/obsessive monitoring of blood glucose, as a “measure” of graft functioning, (unconsciously) “testing” the hypothesis that “this can’t be true.” For many, gradually decreasing glucose monitoring frequencies is a posttransplant treatment goal, reflecting the increasing trust in graft functioning.

Logically, adverse medical outcomes, such as surgical complications or infections can hinder posttransplant psychological recovery. Developing trust in graft functioning may be delayed, and feelings of distress, fear and uncertainty will probably be prolonged. Anxiety may also occur because of anticipated concerns about losing day-to-day support of the transplant team after discharge [40].

Delirium is a common phenomenon after surgery. Delirium can be caused by a variety of reasons, such as infections, narcotics, immunosuppressants or rejection. Treatment of delirium in transplant recipients is similar to that of non-transplant patients, focusing on identification and reversal of the underlying causes [54].

When Transplantation “Fails”

As described, fear of graft failure is an omnipresent emotion in pancreas recipients [76]. In some unfortunate cases this fear becomes reality and a pancreas transplantectomy is needed. So far, only few studies have described the impact of graft loss on quality of life and mental health. Ouellette and colleagues [81] described patients’ experiences after kidney graft loss, with a strong emphasis on the burden of being dependent on dialysis again. Fortunately, pancreas graft loss usually is independent from kidney graft functioning, which means that re-starting dialysis is not indicated. However, insulin dependence will re-occur and recipients will be faced with having to manage diabetes again. In our experience, pancreas graft loss is indeed perceived as a major loss, as most pancreas candidates hope to enjoy full insulin dependence and a diabetes-free life after transplantation. However, in our opinion most SPK recipients report kidney graft functioning to be more important than pancreas graft functioning and still report a pretransplant–posttransplant improvement of quality of life with improved kidney functioning and not being dependent on dialysis. This is in line with previous studies reporting maintained quality of life after pancreas graft loss in SPK recipients [82].

Life After Transplantation

Living a posttransplant life implies significant adaptation by the transplant recipient and support system [54]. After the initial postoperative recovery in the hospital, further rehabilitation will continue from a home environment. Here, the psychological journey continues, discovering the renewed balance between energy and daily activities and implementing new posttransplant behaviors and structures regarding medications, diet, and medical appointments [54]. Strict medical surveillance in this phase is still needed, as well as intense social support [54].

For many SPK recipients, transplantation will most likely lead to increased energy as a result from improved kidney functioning [83]. For those who have been on dialysis while waiting for SPK, the absence of this highly interfering and limiting therapy will probably contribute to posttransplant well-being most.

For those experiencing full insulin independence, increasing trust in graft functioning will most likely develop as a result of (gradual) exposure to carbohydrates with remaining euglycemia, without administering insulin. As trust in graft functioning increases, anxiety levels may drop and decrease the need for (too) intensive monitoring of glucose levels.

It is noted that transplant recipients may report improved physical and social functioning with return to daily activities, without a subsequent improvement in quality of life [75]. Some studies report remaining posttransplant anxiety levels and suggest that the omnipresent fear of graft failure appears to replace pretransplant anxiety about surgery or dialysis [84]. In addition, immunosuppressant regimens are known for potentially severe side effects, that can also strongly influence quality of life [85]. These findings have been confirmed by pancreas-specific studies demonstrating improved physical health after transplant, but stable pre- and posttransplant quality of life [86]. In our study on psychological symptoms and quality of life in SPK recipients, total scores on physical and mental quality of life remained stable from pretransplant assessment to posttransplant follow-up [45]. We found a high prevalence of psychological symptoms in post-SPK patients, compared to a reference group of patients with type 1 diabetes. A strong relationship between psychological symptoms and quality of life after transplantation was found. We assume that psychological symptoms can partly explain the lack of improvement in quality of life, despite improved health outcomes after transplantation. However, additional studies are needed to unravel which (psychological) mechanisms are related to quality of life of pancreas recipients. Contrary to our study, other studies do report improvements in quality of life after pancreas transplant, in both the physical and emotional domain [86]. Since QoL after pancreas transplant is extensively discussed in Chap. 74, we will not further elaborate on quality of life after pancreas transplant in this chapter.

Depression, Anxiety, PTSD

Transplant recipients appear at increased risk of developing posttransplant psychological disorders, which may be caused by a variety of factors, such as stress, medication, or post-surgical complications [54]. Psychiatric history, female gender, prolonged periods of hospitalization, impaired physical functioning, and lack of social support have been found high risk factors for developing posttransplant psychological disorders [75]. Unfortunately only few and mostly qualitative studies are available on mental health problems after pancreas transplantation [76, 87, 88]. Although there are indications of issues relating to energy levels, mood problems, social interactions, and identity issues [88], we lack studies giving us more insight in the prevalence of such problems in this specific population.

Within the general field of transplantation, depressive symptoms appear the most common mental health problem after transplantation. Approximately 50%–80% of transplant patients have reported increased levels of depression [30]. The prevalence of depressive disorders after transplantation has been found to range from 5% to 25%, as assessed 8 to 36 months after surgery [75].

Apart from the psychological impact of depressive symptoms on quality of life, depression increases the risk of behavioral changes that may ultimately lead to adherence problems, i.e., smoking, drinking alcohol, incompliance with medication. Posttransplant depression therefore has been found associated with an increased risk of morbidity and mortality [54]. Monitoring of posttransplant depressive symptoms is advised, to timely identify changes in mood and behavior that may negatively impact medical outcomes. As is common in hospital settings, monitoring and identifying depressive symptoms can be complicated by frequently encountered posttransplant physical changes (e.g., changes in appetite, sleep, or libido) that resemble diagnostic criteria for depression. A careful evaluation of current mood, symptoms of anhedonia, and history of depressive symptoms should help distinguish depressive symptoms from other medical problems/symptoms [54].Transplant team members should be aware of the fact that depression and anxiety may also be a side effect of immunosuppressant medication [40]. Neuropsychiatric adverse effects of immunosuppressants are well described by Heinrich and Marcangelo [54] and Fireman [89].

Feelings of uncertainty, disbelief, and fear of organ failure may be present long after successful transplantation. Over 30% of transplant recipients report increased levels of anxiety compared to non-transplant populations [30]. A qualitative study of Isla Pera and colleagues [76] showed that fear of graft loss is an omnipresent phenomenon in SPK recipients, which appears to co-exist with optimal quality of life.

Within a general transplantation population, prevalence rates of posttransplant anxiety disorders range from 17% to 28% [54], as assessed 8–36 months after surgery. For both pancreas transplant recipients and transplant team members it can be hard to find a balance between (communication about) necessary alertness for physical symptoms that may be a signal for medical complications (e.g., fever, pain, increasing glucose levels), and not overinterpreting physical symptoms and sensations, which will increase anxiety. Initially, many pancreas recipients struggle to find that balance, not knowing when or when not to communicate about or accept physical symptoms. For transplant team members it is important to realize that finding this balance is a learning process, that is best facilitated by accessible contact and frequent communication short after transplantation, slowly decreasing contact and communication in the months thereafter. Doing so, pancreas transplant recipients’ self-efficacy may develop, as well as trust in one’s own judgement, and dependency of health care professionals can slowly be decreased.

The prevalence of PTSD in transplant recipients is increasingly recognized [43, 54]. PTSD has been found prevalent in 17% of transplant recipients in the first year after transplantation, most of them having a history of pretransplant psychological trauma [75]. PTSD after transplantation can be the consequence of re-activated psychological trauma, as is seen more often after invasive medical procedures [44]. Flash backs, nightmares, persistent alertness, and physical arousal are accompanying symptoms that should be identified as prompt as possible. People with post-surgical complications or memory of delirium may be at increased of developing PTSD [40]. A qualitative analysis on psychological needs after pancreas transplantation revealed the presence of trauma-related symptoms, such as intrusive memories, avoidance, and emotional arousal among pancreas transplant recipients. Although these qualitative results are no evidence of PTSD in pancreas transplant recipients, the results indicate that psychological trauma may also be prevalent in pancreas recipients [88].

Body Image and Sexuality

Posttransplant changes in physical appearance, such as weight gain, hair growth, or surgical scarring, may cause some recipients to feel more negatively about their body image and sexuality [75]. Transplantation can lead to physical changes that either improve or decline libido and sexual activity [75, 90]. The Transplant Learning Center (TLC), a large multicenter transplant study [91], reported 61% of respondents (men and women) experiencing adverse effects related to loss of interest or the ability to be sexually active. More than 50% identified adverse effects related to physical appearance, such as changes in body shape and unusual hair growth [91]. Since both diabetes and ESRD are related to erectile dysfunction [90], many male pancreas recipients already experience sexual problems before transplantation. In a study on sexual dysfunction after transplantation in 101 male SPK recipients, 41% of patients reported subjective overall improvement in erectile functioning compared with their pretransplant status, 7% reported worse erectile functioning, and 51% did not report any changes in erectile functioning [90].

Adherence

All transplant recipients are expected to adhere to medication and lifestyle regimens, as well as to medical appointments. Unfortunately, posttransplant non-adherence is a common phenomenon that poses great health risks. Non-adherence to immunosuppressants has been shown to affect both quality of life and life expectancy, and to relate to late acute rejections, graft loss, and mortality [36, 54, 75].To our knowledge, no studies on posttransplant adherence after pancreas transplant are available.

In a contextual inquiry study examining self-management of transplant recipients home visits were performed to see how patients implemented recommended immunosuppressive regimens, physical activity, and healthy eating in their daily lives [92]. A variety of barriers to optimal self-care was found. Although most participants understood the importance of immunosuppressive medication in general, the importance of timing was underestimated. Inaccurate health beliefs and lack of knowledge appeared to trigger this underestimation [92]. Insufficient knowledge was also found regarding physical activity, as well as lack of motivation for physical exercise.

People with a history of mental health problems as well as people with current mental health problems are faced with an increased risk of posttransplant non-adherence. Pre- and posttransplant depression and anxiety have been found to relate to posttransplant non-adherence. As with depression and anxiety, transplant recipients with personality disorders face an increased risk of posttransplant complications due to non-adherence, substance misuse, and interpersonal problems [54]. As previously discussed, these patients require a personalized long-term (lifelong) treatment plan aiming at optimizing transplant circumstances, before, during, and after transplantation [54].

Monitoring of Symptoms, Behaviors, and Risk Factors

Given the high prevalence of posttransplant mental health problems, continued psychosocial monitoring of transplant recipients is recommended, even after successful transplantation. This is in line with results of the qualitative study of Isla Pera and colleagues [76] in SPK recipients, showing that psychological problems are present even after successful transplantation and with co-existing optimal quality of life. Knowing their relationship with adverse medical outcomes. Factors to be monitored include (changes in): well-being, lifestyle and self-care behaviors, and social support/situation. Transplant team members should be aware of any changes in these factors, since they may prelude adverse medical outcomes. Monitoring of these factors can be facilitated by means of standard questionnaires that are filled out by pancreas recipients before consultations, and briefly discussed during standard follow-up consultations.

In a systematic review on patient-reported outcomes (PRO) following islet or pancreas transplantation, Speight and colleagues [87] discussed available PRO measures assessing (diabetes)-specific quality of life, well-being, general health, and posttransplant symptoms (e.g., fatigue). The authors emphasized the lack of transplant-specific instruments with sufficient sensitivity to detect posttransplant changes. They underscored the fact that the few available studies in this field leave us with many remaining questions on which instruments could adequately assess patient reported outcomes after pancreas transplantation [87].

In a review Kuypers provides diagnostic tools to detect medication non-adherence after transplantation, as well as suggestions on setting up dedicated transplant programs to treat medication non-adherence [93]. A combination of interventions to detect and treat medication non-adherence is suggested, such as educational tools, electronic monitoring systems, and including clinical pharmacists in the transplant team.

Ideally, psychologists, psychiatrists, and social workers within transplant teams are available for consultation whenever questionnaire outcomes, assays, and/or anamneses during medical follow-up indicate that psychosocial evaluation or treatment is needed.

Treatment

With only few studies available on mental health after pancreas transplantation, we have little insight in effective treatment strategies for treating mental health problems after pancreas transplantation. It is evident that future studies on psychosocial aspects of pancreas transplantation are needed, as well as studies on effective treatment strategies. Despite the lack of studies, we have strong reasons to assume that treatment of identified problems in well-being, mental health, lifestyle, self-care, and social support/situation is important to prevent adverse transplant outcomes and maintain or improve quality of life. This assumption is based on studies in other organ transplant recipients, showing that psychological and psychiatric problems after transplantation relate to adverse transplant outcomes and quality of life and can be treated effectively [30, 40].

In essence, the treatment of mental health problems in transplant recipients is not different from treatment of mental health problems in patients with other chronic medical illness. Treatment will be based on regular guidelines for treating mental health problems (e.g., depression, anxiety) in a medical setting, using psychotherapeutic and/or psychopharmacological interventions [54].

Psychotherapeutic Interventions

Various psychological interventions have demonstrated improvements regarding distress and mental health problems in transplant recipients. Cognitive behavioral interventions or other forms of psychotherapy, either individual or group based, have shown to increase adherence and quality of life after transplant [30]. Cognitive behavioral therapy (CBT) has been demonstrated to reduce anxiety and depression as well as to improving adjustment to illness and posttransplant compliance [30].

Group-based interventions offer the advantage of efficiency for health care providers, as well as the opportunity for transplant recipients to meet and interact with other transplant recipients. Posttransplant support groups can provide education and support as well as modeling of successful adaptation after transplantation, thereby increasing patient empowerment [30]. Given the importance of social support in adherence and preventing adverse medical outcomes, it is strongly recommended to include the patient’s support system in any psychological intervention. Interventions targeting transplant recipients and their families have been shown to improve adherence, social support, and the patient’s sense of control [54].

Baines and colleagues studied individual versus group psychotherapy in kidney transplant recipients [94]. Both individual and group psychotherapy showed significant improvements in depression scores; however, improvement was more significant in the individual therapy arm.

Gross and colleagues assessed the efficacy of a mindfulness-based stress reduction (MBSR) training in reducing symptoms of posttransplant anxiety, depression, and poor sleep, compared to a health education program [95]. Compared to the health education program, MBSR was more successful in reducing symptoms of anxiety and sleep, as well as improving quality of life and benefits were more durable (1 year) than in the health education group [95]. Stonnington and colleagues developed a 6-week mindfulness-based resilience training (MBRT) for transplant recipients (including SPK) and their caregivers [96]. At 6 weeks and 3 months, significant decreases were found in perceived stress, depression, anxiety, and negative affect. Most participants adhered to the program and reported improved well-being [96].

In addition to face-to-face interventions, e-health interventions offer an increasing range of opportunities for support and counseling in a patient’s home environment. Knowing the long distance between specialized transplant centers and the homes of many patients, online consultations and interventions may be a way to provide candidates with specialized knowledge and support, without the burden of traveling. Doing so, more continuity in the multidisciplinary treatment of pancreas recipients could be facilitated.

Vanhoof and colleagues studied willingness to use interactive health technology (IHT) in solid organ transplant patients. It was found that most transplant recipients generally are open to using IHT, and that computers and the Internet (not smartphones) are the most suitable IHT platforms [97]. Clear preferences were reported regarding IHT features, that should be taken into account when developing e-health interventions for transplant recipients [92]. Examples of studies on e-health interventions in transplant recipients demonstrate the options of online access to therapists who discuss and treat psychosocial problems in life after transplantation [75].

Pharmacological Interventions

Psychopharmacological treatment of psychological and psychiatric disorders in transplant recipients requires careful consideration of the impact of psychotropics on kidney and metabolic functioning, drug–drug interactions, and side effects. Since an in-depth discussion of the use of psychotropics in transplant recipients is beyond the scope of this chapter, we refer to previous studies that examined and summarized this important topic. Surman, Cosimi and DiMartini [40], Heinrich and Marcangelo [54], and Crone and Gabriel [98] provide with in-depth overviews of psychopharmacological treatment options in transplant recipients with comorbid psychological and psychiatric disorders.

Conclusions and Gaps in Knowledge

Psychosocial factors play an important role in diabetes self-management, glycemic control, and the development of diabetes-related complications, among which diabetic nephropathy. A variety of studies demonstrated relationships between mental health problems and diabetic outcomes. Consequently, pancreas transplant candidates present with higher rates of comorbid mental health problems.

In addition to the relationship with diabetes self-management and glycemic control, psychosocial factors relate to transplant outcomes. Knowing the relationship between psychosocial factors and adverse transplant outcomes, transplant guidelines recommend a psychosocial evaluation of transplant candidates. However, guidelines on which factors and methods to include in the psychosocial screening of transplant candidates are absent.

Although the psychosocial screening of pancreas transplant candidates highly resembles the screening of other organ recipients, additional goals are to examine psychosocial factors that relate to past and current glycemic control, especially when screening for pancreas transplant alone (PTA). Treatment of psychosocial factors influencing diabetes self-management during work-up can lead to improved glycemic control before transplantation which is relevant for all pancreas transplant options (SPK, PAK, and PTA) or, in case of PTA and possibly PAK, could even lead to postponement or cancellation of the transplantation procedure.

Given the impact of psychosocial factors on pre- and posttransplant outcomes, pancreas transplant teams should include health care professionals with expertise on mental health, diabetes and transplantation. Affiliated social workers, clinical psychologists, and psychiatrists can play an important role in the psychosocial assessment of pancreas candidates, the psychosocial preparation of eligible candidates, and posttransplant follow-up. Various studies demonstrated that pre- and posttransplant treatment of psychosocial risk factors by means of support groups, psychotherapy, or psychotropics improves adherence, mental health, and transplant outcomes.

The importance of psychosocial factors, diagnostics, and treatment in pancreas transplantation is being increasingly acknowledged, but many questions remain to be answered. Most available knowledge and insight in pretransplant psychosocial screening, psychosocial work-up and posttransplant treatment are derived from studies in the context of other organ transplants. Although there is great similarity between pancreas transplant and other organ transplants, there is a strong need for pancreas-specific studies on the impact of psychosocial factors pre- and posttransplant, as well as (multidisciplinary) treatment options. Different from other solid organ transplants, the psychosocial evaluation and treatment of pancreas candidates comes with highly specific topics, such as identifying psychosocial factors that may explain excesses in glycemic control and may respond to alternative treatment than pancreas transplant alone (PTA). Future studies could provide more insight as to which psychological mechanisms relate to excesses in glycemic control in PTA candidates. Additionally, studies are needed on which psychosocial factors can or cannot be modified by psychological/psychiatric treatment, and when alternative treatment options for PTA should be considered.

Similar to the psychosocial evaluation of other solid organ transplants, the psychosocial evaluation of pancreas transplant candidates is in need of studies on adequate assessment methods and instruments, ideally leading to more consensus and guidelines on what should be considered high-risk psychosocial factors for adverse transplant outcomes.

In addition, future studies on psychological and psychiatric interventions in the treatment of psychosocial factors in pancreas transplants are welcomed, hopefully leading to specialized pre- and post-pancreas transplant educational programs.