Christiane Kugler

The Psychometric Properties and Practicability of Self-Report Instruments to Identify Medication Nonadherence in Adult Transplant Patients: A Systematic Review

Introduction. Nonadherence to immunosuppressive therapy is recognized as a key prognostic indicator for poor posttransplantation long-term outcomes. Several methods aiming to measure medication nonadherence have been suggested in the literature. Although combining measurement methods is regarded as the gold standard for measuring nonadherence, self-report is generally considered a central component of adherence assessment. However, no systematic review currently exists to determine which instrument(s) are most appropriate for use in transplant populations. Methodology. The transplant360 Task Force first performed a survey of the self-report adherence instruments currently used in European centers. Next, a systematic literature review of self-report instruments assessing medication adherence in chronically ill patients was conducted. Self-report instruments were evaluated to assess those which were: (a) short and easy to score; (b) assessed both the taking and timing of medication intake; and (c) had established reliability and validity. Results. Fourteen instruments were identified from our survey of European centers, of which the Basel Assessment of Adherence Scale for Immunosuppressives met the aforementioned criteria. The systematic review found 20 self-report instruments, of which only two qualified for use in transplantation, that is, the Brief Antiretroviral Adherence Index and the Medication Adherence Self-Report Inventory. Discussion. The three selected self-report scales may assist transplant professionals in detecting nonadherence. However, these scales were only validated in patients with HIV. Although HIV shares similar characteristics with transplantation, including the importance of taking and timing of medication, further validation in transplant populations is required.

Health-related quality of life and exercise tolerance in recipients of heart transplants and left ventricular assist devices: A prospective, comparative study

BACKGROUND The aim of this study was to evaluate and compare health-related quality of life (HRQoL) and physical exercise tolerance in patients after heart transplantation (HTx) or implantation of a left ventricular assist device (LVAD). METHODS A prospective, comparative design was used to characterize changes over time in HRQoL (SF-36) and exercise tolerance in patients after HTx (n = 54) and during LVAD support (n = 36). Nine LVAD patients were lost for follow-up. The majority of patients in both groups were male (97%); the LVAD cohort tended to be younger (p = 0.06). RESULTS HRQoL improved significantly in HTx patients in the SF-36 physical (p = 0.02), but not in the psychosocial (p = 0.27) component score during follow-up. In the LVAD group, HRQoL showed improvements for both the SF-36 physical and psychosocial component scores (both p = 0.04). Between-group comparisons revealed better HRQoL for the HTx cohort than the LVAD cohort for 2 of 8 SF-36 subscales. Age-, gender- and body mass index (BMI)-adjusted exercise tolerance (workload; VO(2max)) showed significant improvements for both HTx (p = 0.01) and LVAD (p = 0.01) patients. Adjusted maximum oxygen consumption was higher for HTx patients (p = 0.05) relative to LVAD patients at 8 ± 1 months after implant. CONCLUSION HRQoL and exercise capacity increased in both groups over the time-course of the study. After adjusting for relevant variables, HTx patients showed a higher exercise tolerance compared with the LVAD group during follow-up. Thus, future large-scale intervention studies should emphasize the specific needs of these patient cohorts.

Non-adherence in patients on chronic hemodialysis: an international comparison study

BACKGROUND Adherence to diet and fluid restrictions by adults on hemodialysis treatment is challenging. This study compared non-adherence (NA) to diet and fluid restrictions between adult US and German hemodialysis patients, and assessed potential predictors for NA. METHODS A cross-sectional multicenter comparative study of 456 adult hemodialysis patients was conducted in 12 outpatient-based hemodialysis centers in the United States and Germany. NA was based on self-report using the Dialysis Diet and Fluid Non-adherence Questionnaire (DDFQ). Laboratory marker, interdialytic weight gain (IDWG) and dialysis adequacy (Kt/V) information were obtained from medical records. Mean time on dialysis was 50 months (range 3-336); mean age was 62 years (range 19-91), with the majority of patients (89.7%) being white. RESULTS Self-reported frequency of NA to diet was 80.4% and to fluid 75.3% in the total sample. The degree of NA to diet and fluid differed significantly, with the US patients (68.1% vs. 61.1%) reporting less NA when compared with German (81.6% vs. 79.0%) patients (p<0.0001). Phosphorus, albumin, IDWG and Kt/V levels were higher in the US compared with the German subsample (all p<0.0001; IDWG p<0.003). Generalized regression models revealed that education (p<0.01) and smoking (p<0.01) predicted NA to diet, whereas single marital status (p<0.008) and male sex (p<0.04) were independent predictors for NA to fluid. CONCLUSIONS NA persists as one of the most challenging tasks in health care of patients with chronic conditions, including hemodialysis patients. Our findings suggest that patient, condition-related, socioeconomic and health care system-related factors may contribute to NA to diet and fluid restrictions.

Symptom experience after lung transplantation : impact on quality of life and adherence

Abstract:  Background:  Patients’ perceptions of immunosuppression‐ related symptom experience may impact on quality of life (QoL) and medication adherence.

Health-related quality of life after solid organ transplantation: a prospective, multiorgan cohort study.

Background Short-term posttransplantation survival and health-related quality of life (HRQoL) is exceptionally high for all patients after organ transplantation; however, predictors of the HRQoL outcome are not well understood. Trajectories of patients’ perceived benefit/burden ratio associated with the transplant procedure may differ when taking the organ type for transplantation into account. Methods A prospective, single-center cohort study assessed the trajectories of 354 patients after kidney (n=165), liver (n=53), heart (n=24), and lung (n=112) transplantation at 2, 6, 12, and 24 months with respect to psychosocial outcomes (HRQoL, anxiety, depression, social support, and work performance). Results Mean age was 50±13 years, and 61.6% were male in the overall sample. Demographics differed with respect to organ type. HRQoL measured by the mean SF-36 Physical Component Scale was 36.8 (95% confidence interval, 35.7–37.8) and 48.9 (95% confidence interval, 47.2–49.7) for the Psychosocial Component Scale for the entire sample at 2 months and showed a marginal decrease until 24 months after transplantation. Overall, HRQoL increased for all organ types with differing trajectories. Liver patients reported the lowest HRQoL benefit for the majority of the physical (P⩽0.01) and psychosocial (P⩽0.01) SF-36 subscales. Anxiety (17.4%) and depression (13.8%) were prevalent in the overall sample. Depression symptoms impaired HRQoL outcomes in both SF-36 components and unemployment impacted the SF-36 psychosocial outcomes. Conclusions HRQoL improved after transplantation for all four types of transplant, but the trajectories were different. Regular screening for depression symptoms may diminish psychologic disorders and distress after transplantation and thus may further improve outcomes.

Effect of adherence to home spirometry on bronchiolitis obliterans and graft survival after lung transplantation.

Background. Patient-controlled home spirometry (HS) after lung transplantation has been shown to be valid and reliable to detect the presence of graft infection and rejection at its earliest onset. Effects of nonadherence to HS on detection of the bronchiolitis obliterans syndrome (BOS) and on graft survival are unknown. Methods. A 7-year prospective cohort study assessed nonadherence longitudinally using electronic spirometry for 24 months. During follow-up, BOS, retransplantation, and survival were stratified by adherence groups. Results. Electronic monitoring of 226 patients confirmed that 123,487 measures were performed. Period prevalence was 0.76 measures per patient day and decreased significantly over time (P<0.0001). During follow-up, BOS was developed in 32% of patients; 5% received a second transplant, and mortality rate was 19%. Kaplan-Meier event-free analysis showed decreased freedom from BOS time in nonadherers (30%) compared with good (43%) or moderate adherers (19%) (log rank 6.008; P<0.014) and a tendency toward lower retransplantation rates (log rank 3.14; P<0.07). Mantel Cox regression revealed no impact of adherence on patient survival. Conclusions. This was the first study assessing nonadherence to HS based on electronic monitoring in relation to long-term outcome after lung transplantation. Nonadherers showed decreased freedom from BOS in the largest sample to date, but did not impact survival.

Significance of patient self‐monitoring for long‐term outcomes after lung transplantation

Kugler C, Gottlieb J, Dierich M, Haverich A, Strueber M, Welte T, Simon A. Significance of patient self‐monitoring for long‐term outcomes after lung transplantation.
Clin Transplant 2009 DOI: 10.1111/j.1399‐0012.2009.01197.x
© 2009 John Wiley & Sons A/S.

Health literacy in heart transplantation: Prevalence, correlates and associations with health behaviors—Findings from the international BRIGHT study

BACKGROUND Health literacy (HL) is a major determinant of health outcomes; however, there are few studies exploring the role of HL among heart transplant recipients. The objectives of this study were to: (1) explore and compare the prevalence of inadequate HL among heart transplant recipients internationally; (2) determine the correlates of HL; and (3) assess the relationship between HL and health-related behaviors. METHODS A secondary analysis was conducted using data of the 1,365 adult patients from the BRIGHT study, an international multicenter, cross-sectional study that surveyed heart transplant recipients across 11 countries and 4 continents. Using the Subjective Health Literacy Screener, inadequate HL was operationalized as being confident in filling out medical forms none/a little/some of the time (HL score of 0 to 2). Correlates of HL were determined using backward stepwise logistic regression. The relationship between HL and the health-related behaviors were examined using hierarchical logistic regression. RESULTS Overall, 33.1% of the heart transplant recipients had inadequate HL. Lower education level (adjusted odds ratio [AOR] 0.24, p < 0.001), unemployment (AOR 0.69, p = 0.012) and country (residing in Brazil, AOR 0.25, p < 0.001) were shown to be associated with inadequate HL. Heart transplant recipients with adequate HL had higher odds of engaging in sufficient physical activity (AOR 1.6, p = 0.016). HL was not significantly associated with the other health behaviors. CONCLUSIONS Clinicians should recognize that almost one third of heart transplant participants have inadequate health literacy. Furthermore, they should adopt communication strategies that could mitigate the potential negative impact of inadequate HL.

Symptom experiences in patients after heart transplantation

Patients’ perceptions of immunosuppression-related symptom experience impact on quality of life and medication adherence. Using The Modified Transplant Symptom Occurrence and Symptom Distress Scale capturing items on symptom occurrence and symptom distress, 261 heart transplant recipients reported on their symptom experiences. Symptoms occurring with the highest prevalence were tiredness, lack of energy, and nervousness. Men showed erectile dysfunction causing the most distress. Women and younger patients reported significantly higher levels of symptom distress. Distress levels increased with time after transplant. Investigating responses to immunosuppression-related symptom experiences should help develop interventional methods to support long-term outcome.

Adult cardiothoracic transplant nursing: An ISHLT consensus document on the current adult nursing practice in heart and lung transplantation

BACKGROUND The role of nurses in cardiothoracic transplantation has evolved over the last 25 years. Transplant nurses work in a variety of roles in collaboration with multidisciplinary teams to manage complex pre- and post-transplantation issues. There is lack of clarity and consistency regarding required qualifications to practice transplant nursing, delineation of roles and adequate levels of staffing. METHODS A consensus conference with workgroup sessions, consisting of 77 nurse participants with clinical experience in cardiothoracic transplantation, was arranged. This was followed by subsequent discussion with the ISHLT Nursing, Health Science and Allied Health Council. Evidence and expert opinions regarding key issues were reviewed. A modified nominal group technique was used to reach consensus. RESULTS Consensus reached included: (1) a minimum of 2 years nursing experience is required for transplant coordinators, nurse managers or advanced practice nurses; (2) a baccalaureate in nursing is the minimum education level required for a transplant coordinator; (3) transplant coordinator-specific certification is recommended; (4) nurse practitioners, clinical nurse specialists and nurse managers should hold at least a masters degree; and (5) strategies to retain transplant nurses include engaging donor call teams, mentoring programs, having flexible hours and offering career advancement support. Future research should focus on the relationships between staffing levels, nurse education and patient outcomes. CONCLUSIONS Delineation of roles and guidelines for education, certification, licensure and staffing levels of transplant nurses are needed to support all nurses working at the fullest extent of their education and licensure. This consensus document provides such recommendations and draws attention to areas for future research.