Symptom Distress Before and After Heart Transplantation - A Longitudinal 5-Year Follow-Up.

INTRODUCTION: Symptom distress after heart transplantation (HTx) is a significant problem causing uncertainty, low self-efficacy, and psychological distress. Few studies have addressed self-reported symptoms. The aim was to explore self-reported symptom distress from time on the waiting list to 5 years after HTx and its association with self-reported psychological well-being, chronic pain, and fatigue in order to identify possible predictors of psychological or transplant specific well-being. METHODS: This multicenter, longitudinal cohort study includes 48 heart recipients (HTRs), 12 women, and 36 men, with a median age of 57 years followed from pretransplant to 5 years post-transplant. Symptom distress was explored by means of four instruments measuring psychological general wellbeing, transplant specific wellbeing, pain, and fatigue. RESULTS: Transplant specific well-being for the whole improved in a stepwise manner during the first 5 years compared to pretransplant. Heart transplant recipients with poor psychological wellbeing were significantly more burdened by symptom distress, in particular sleep problems and fatigue, for up to 5 years after HTx, and their transplant-specific well-being never improved compared to baseline. The prevalence of pain varied from 40% to 60% and explained a significant proportion of the variance in transplant-specific well-being, while psychological general well-being was mainly predicted by overall symptom distress. CONCLUSION: The presence of distressing symptoms explains a significant proportion of poor psychological wellbeing both among HTRs reporting chronic pain and those without pain.

Living Donor Kidney Transplantation in Older Individuals: An Ethical Legal and Psychological Aspects of Transplantation (ELPAT) View.

Living donor transplantation is the optimal treatment for suitable patients with end-stage kidney disease. There are particular advantages for older individuals in terms of elective surgery, timely transplantation, and early graft function. Yet, despite the superiority of living donor transplantation especially for this cohort, older patients are significantly less likely to access this treatment modality than younger age groups. However, given the changing population demographic in recent decades, there are increasing numbers of older but otherwise healthy individuals with kidney disease who could benefit from living donor transplantation. The complex reasons for this inequity of access are explored, including conscious and unconscious age-related bias by healthcare professionals, concerns relating to older living donors, ethical anxieties related to younger adults donating to aging patients, unwillingness of potential older recipients to consider living donation, and the relevant legislation. There is a legal and moral duty to consider the inequity of access to living donor transplantation, recognising both the potential disparity between chronological and physiological age in older patients, and benefits of this treatment for individuals as well as society.

Donor Autonomy and Self-Sacrifice in Living Organ Donation: An Ethical Legal and Psychological Aspects of Transplantation (ELPAT) View.

Clinical teams understandably wish to minimise risks to living kidney donors undergoing surgery, but are often faced with uncertainty about the extent of risk, or donors who wish to proceed despite those risks. Here we explore how these difficult decisions may be approached and consider the conflicts between autonomy and paternalism, the place of self-sacrifice and consideration of risks and benefits. Donor autonomy should be considered as in the context of the depth and strength of feeling, understanding risk and competing influences. Discussion of risks could be improved by using absolute risk, supra-regional MDMs and including the risks to the clinical team as well as the donor. The psychological effects on the donor of poor outcomes for the untransplanted recipient should also be taken into account. There is a lack of detailed data on the risks to the donor who has significant co-morbidities.

Fatigue after heart transplantation - a possible barrier to self-efficacy.

RATIONALE: Recovery after heart transplantation is challenging and many heart recipients struggle with various transplant-related symptoms, side-effects of immunosuppressive medications and mental challenges. Fatigue has been reported to be one of the most common and distressing symptoms after heart transplantation and might therefore constitute a barrier to self-efficacy, which acts as a moderator of self-management. AIM: To explore the prevalence of fatigue and its relationship to self-efficacy among heart recipients 1-5 years after transplantation. RESEARCH METHOD: An explorative cross-sectional design, including 79 heart recipients due for follow-up 1-5 years after transplantation. Three different self-assessment instruments were employed; The Multidimensional Fatigue Inventory-19, Self-efficacy for managing chronic disease 6-Item Scale and The Postoperative Recovery Profile. ETHICAL APPROVAL: The study was approved by the Regional Ethics Board of Lund (Dnr. 2014/670-14/10) with supplementary approval from the Swedish Ethical Review Authority (Dnr. 2019-02769). RESULTS: The reported levels of fatigue for the whole group were moderate in all dimensions of the Multidimensional Fatigue Inventory-19, with highest ratings in the General Fatigue sub-scale. Those most fatigued were the groups younger than 50 years; pretransplant treatment with Mechanical Circulatory Support; not recovered or had not returned to work. Self-efficacy was associated with the sub-dimensions Mental Fatigue (ρ = -0·.649) and Reduced Motivation (ρ = -0·617), which explained 40·1% of the variance when controlled for age and gender. STUDY LIMITATIONS: The small sample size constitutes a limitation. CONCLUSIONS: The moderate levels of fatigue reported indicate that it is not a widespread problem. However, for those suffering from severe fatigue it is a troublesome symptom that affects the recovery process and their ability to return to work. Efforts should be made to identify those troubled by fatigue to enable sufficient self-management support.

Health Literacy among patients with end-stage kidney disease and kidney transplant recipients.

MAIN PROBLEM: Self-management is essential for patients both before and after kidney transplantation and requires an adequate level of health literacy (HL), that is the ability to comprehend and process health information. Low HL is associated with poor clinical outcome and an increased risk of death. In Europe, HL has been scarcely studied. The aim of this study was to investigate the levels of HL in a Swedish cohort of kidney transplant (KTx) candidates and KTx recipients. METHODS: A single centre cross-sectional cohort study. Participants; n = 50 KTx candidates and n = 49 KTx recipients. HL was measured with the Newest Vital Sign instrument (NVS). Statistical analysis was made using the chi-square, Mann-Whitney U- or t-test. RESULTS: Study participants; n = 99, 61.6% male, mean age 52 years. Low or possible inadequate HL was seen in 20%. There was no statistical difference in the levels of HL related to sex, educational level, ability to work or between KTx candidates and KTx recipients. CONCLUSIONS: In this cohort, one fifth had low or possible inadequate HL measured by the NVS. Screening is needed to identify persons with poor HL. These persons require tailored education and person-centred care to cope with self-management.

Recovery, symptoms, and well-being one to five years after lung transplantation - A multi-centre study.

BACKGROUND: In recent years, survival after lung transplantation has remained largely unchanged despite improvements in short-and intermediate-term survival, indicating the need to identify factors associated with recovery and long-term survival. Very little is known about how lung recipients recover after lung transplantation and whether such factors are related to symptom distress and well-being. This constitutes the rationale of the study. AIM: The aim was to explore symptom prevalence and distress as well as the degree of self-reported perceived recovery and well-being 1-5 years after adult lung transplantation. METHOD: This multicentre, cross-sectional nationwide study includes 117 lung recipients due for follow-up at 1 year (n = 35), 2 years (n = 28), 3 years (n = 23), 4 years (n = 20) and 5 years (n = 11). Three different self-assessment instruments were utilised; The Postoperative Recovery Profile, the Organ Transplant Symptom and Well-Being Instrument, and the Psychological General Well-Being Instrument. Ethical approval of the study was obtained. RESULTS: Few (5.7%) lung recipients were recovered 1-5 years after lung transplantation and 27.6% were not recovered at all. No relationship was identified between present lung function and self-reported recovery or well-being. There was a strong relationship between recovery and well-being. It is possible to be partly recovered and experience good health. The most prevalent symptoms were tremor 66%, breathlessness 62%, and decreased libido 60%, while the symptoms perceived as most distressing were embarrassment about appearance, decreased libido, and poor appetite. LIMITATIONS: The cross-sectional design prevents identification of any causal relationships. Patient loss due to transplant mortality and inclusion difficulties resulted in a fairly small sample. CONCLUSION: Our findings suggest the need for changes in follow-up care such as systematic measurement of the degree of self-reported recovery and symptoms. This entails self-management support tailored to the recipients' symptom-management and health-management requirements.

Donor and Recipient Perspectives on Anonymity in Kidney Donation From Live Donors: A Multicenter Survey Study.

BACKGROUND: Maintaining anonymity is a requirement in the Netherlands and Sweden for kidney donation from live donors in the context of nondirected (or unspecified) and paired exchange (or specified indirect) donation. Despite this policy, some donors and recipients express the desire to know one another. Little empirical evidence informs the debate on anonymity. This study explored the experiences, preferences, and attitudes of donors and recipients toward anonymity. STUDY DESIGN: Retrospective observational multicenter study using both qualitative and quantitative methods. SETTING & PARTICIPANTS: 414 participants from Dutch and Swedish transplantation centers who received or donated a kidney anonymously (nondirected or paired exchange) completed a questionnaire about anonymity. Participation was a median of 31 months after surgery. FACTORS: Country of residence, donor/recipient status, transplant type, time since surgery. OUTCOMES: Experiences, preferences, and attitudes toward anonymity. RESULTS: Most participants were satisfied with their experience of anonymity before and after surgery. A minority would have liked to have met the other party before (donors, 7%; recipients, 15%) or after (donors, 22%; recipients, 31%) surgery. Significantly more recipients than donors wanted to meet the other party. Most study participants were open to meeting the other party if the desire was mutual (donors, 58%; recipients, 60%). Donors agree significantly more with the principle of anonymity before and after surgery than recipients. Donors and recipients thought that if both parties agreed, it should be permissible to meet before or after surgery. There were few associations between country or time since surgery and experiences or attitudes. The pros and cons of anonymity reported by participants were clustered into relational and emotional, ethical, and practical and logistical domains. LIMITATIONS: The relatively low response rate of recipients may have reduced generalizability. Recall bias was possible given the time lag between transplantation and data collection. CONCLUSIONS: This exploratory study illustrated that although donors and recipients were usually satisfied with anonymity, the majority viewed a strict policy on anonymity as unnecessary. These results may inform policy and education on anonymity.

Health Literacy Among Swedish Lung Transplant Recipients 1 to 5 Years After Transplantation.

INTRODUCTION: Understanding medical information and self-management ability is vital for good quality of life among transplant recipients. However, health literacy (HL) has never been investigated among lung transplant recipients. OBJECTIVE: This study investigated HL among Swedish lung transplant recipients 1 to 5 years after lung transplantation in relation to recovery, fatigue, adherence, cognitive function (CF), and relevant demographic variables. METHOD: This study was part of a cross-sectional, Swedish multicenter study 1 to 5 years post lung transplantation called Self-Management after Thoracic Transplantation. In total, 117 (57%) of 204 eligible lung recipients due for their yearly follow-up were included; 1 year (n = 35), 2 years (n = 28), 3 years (n = 23), 4 years (n = 20) or 5 years (n = 11) after transplantation. The newest vital sign (NVS) instrument was used to measure the level of HL and contained 6 interview questions. The total scores ranged from 0 to 6 with 0 to 1= inadequate/low, 2 to 3 = marginal, 4 to 6 = adequate/good HL. RESULTS: Twenty-one percent reported an NVS score of 0 to 3 indicating low or marginal HL and 79% scored 4 to 6 indicating adequate HL. Recipients scoring low or marginal were represented in all 5 years posttransplant, and the majority were not able to work. Health literacy was not related to age, sex, fatigue, adherence, recovery, marital status, or self-reported CF. DISCUSSION: Health literacy was good among Swedish lung recipients. Providers should be aware that patients with low HL might present at any time posttransplant, and screening will help identify patients who need extra support.

Pain, fatigue and well-being one to five years after lung transplantation - a nationwide cross-sectional study.

RATIONALE AND AIM: Little is known about persistent pain after lung transplantation. Therefore, the aim was to present a multidimensional assessment of self-reported pain 1-5 years after lung transplantation and its relationship with fatigue and transplant-specific well-being. METHODS: This nationwide, cross-sectional cohort study is part of the self-management after thoracic transplantation study. A total of 117 lung recipients, all White, who were due for their annual follow-up at one (n = 35), two (n = 28), three (n = 23), four (n = 20) and 5 years (n = 11) after lung transplantation were included. We used three instruments; the Pain-O-Meter (POM), which provides information about pain intensity, sensation, location and duration, the MFI-19 fatigue instrument and the Organ Transplant Symptom and Well-being Instrument (OTSWI). Permission to carry out this study was granted by the Regional Ethical Review Board in southern Sweden (D-nr 2014-124). RESULTS: The prevalence of pain was 51% after 1 year, 68% after 2 years, 69.5% after 3 years, 75% after 4 years and 54.5% after 5 years. Women experienced more pain than men. Lung recipients with pain reported lower well-being and higher symptom distress but were not more fatigued than those without pain. STUDY LIMITATIONS: The limitations of this study are due to the cross-sectional design. The recruitment of patients during the study period was probably affected by the different conditions regarding staffing at the outpatient lung transplant clinic in the two thoracic transplant centres in Sweden. The slightly different approach to the care of these patients in the pre, peri and postoperative setting contributes to the heterogeneity of the study population. CONCLUSION: Chronic bodily pain up to 5 years after lung transplantation reduces perceived well-being. Lung recipients with pain report higher symptom distress than those without pain.

Self-efficacy in the context of heart transplantation - a new perspective.

AIMS AND OBJECTIVES: An in-depth exploration of self-efficacy among heart transplant recipients by means of Bandura's self-efficacy theory. BACKGROUND: An essential component of chronic illness management is self-management, which refers to activities carried out by people to create order, structure and control in their lives. Self-efficacy is an important aspect of self-management, which seems to have become the main paradigm for long-term management after solid organ transplantation. DESIGN: A directed content analysis using Bandura's self-efficacy theory. METHODS: Open-ended, in-depth interviews were conducted with 14 heart transplant recipients at their 12-month follow-up after heart transplantation. RESULTS: This study generated the hypothesis that from the patients' perspective, self-efficacy after heart transplantation concerns balancing expectations to find the optimum level of self-efficacy. Performance accomplishment was found to have the greatest impact on self-efficacy, while its absence was the main source of disappointments. It was also revealed that the gap between performance accomplishment and efficacy expectations can be understood as uncertainty. CONCLUSIONS: It is essential to assess both expectations and disappointments from the patient perspective in order to promote an optimum level of self-efficacy among heart transplant recipients. This includes supporting the heart recipient to adopt mental and physical adjustment strategies to balance her/his expectations as a means of minimising disappointments. The understanding that uncertainty can undermine self-efficacy is crucial. RELEVANCE TO CLINICAL PRACTICE: The merging of the uncertainty in illness and self-efficacy theories provides an excellent framework for the provision of self-management support. In addition, focusing on a partnership between the transplant professionals and the recipient is essential because it minimises the use of a behavioural approach.

Recovery after lung transplantation from a patient perspective - proposing a new framework.

AIMS: The aims of this study were two-fold: to develop the concept analysis by Allvin et al. from lung recipients' perspective of their post-transplant recovery process and to identify the recovery trajectories including critical junctions in the post-transplant recovery process after lung transplantation. BACKGROUND: Lung transplantation is an established treatment for patients with end-stage lung disease. The recovery process after lung transplantation is very demanding. Today, patients are expected to play an active role in their own recovery but require ongoing support during the process. DESIGN: A deductive, retrospective interview study using directed content analysis and Allvin's recovery concept analysis. METHOD: Fifteen adult lung transplant recipients who were due their 12-month follow-up were consecutively included and interviewed during 2015. Patients who were medically unstable or had difficulties speaking Swedish were excluded from this multi-centre study. FINDINGS: Allvin's concept analysis is partly applicable to the context of lung transplantation. The recipients' experience of the post-transplant recovery process could be confirmed in the main dimensions of the concept analysis, while several sub-dimensions were contradictory and were excluded. Six new sub-dimensions emerged; symptom management, adjusting to physical restraints, achieving an optimum level of psychological well-being, emotional transition, social adaptation and reconstructing daily occupation. CONCLUSION: The concept analysis by Allvin et al. was possible to expand to fit the lung transplantation context and a new contextual definition of post-transplant recovery after solid organ transplantation was developed. Recovery and health were viewed as two different things.

Health transition after lung transplantation - a grounded theory study.

AIMS AND OBJECTIVES: To investigate lung recipients' process of transition from prior the transplantation to one year afterwards, as well as what their main concerns are and how they deal with these concerns. BACKGROUND: During the last three decades, lung transplantation has been established as an effective treatment for patients with end-stage pulmonary disease. Towards the end of the 20th century, the concept of survival expanded to also include improving health-related quality of life (HRQoL). Although many studies have been published regarding lung recipients' HRQoL, aspects of health and everyday life remain understudied. Lung transplantation demands some kind of transition. However, very little is known about this transitional process. DESIGN: A qualitative inductive approach using Grounded Theory (GT) was used. METHODS: A total of ten adult males and five adult females (n = 15) with a mean age of 55 years were included in the study and interviewed one year after transplantation. The open-ended interviews were digitally recorded and transcribed verbatim after each interview. The analysis of the material was performed consistent with Charmaz contructivistic approach of GT. RESULTS: The core category Reconstructing daily occupations summarises a process wherein the generated GT is present through four main categories: Restricting, Regaining, Reorganising and Enriching. The process of reconstructing daily occupations is necessary to regain health. CONCLUSIONS: A trajectory of health transition is evident, starting pretransplant with the lung disease and severe illness and proceeding at least up to one year after the transplantation with experienced health. RELEVANCE TO CLINICAL PRACTICE: The result enables a unique possibility to enhance the lung recipients' striving for everyday life and thereby promote health. There is a need for change in the existing multidisciplinary transplant team to also include an occupational therapist to support and guide the lung recipients in changing their occupational patterns.

The core of social function after solid organ transplantation.

BACKGROUND: Social function is a key aspect of health-related quality of life after solid organ transplantation (SOT). The focus of this study was to report how solid organ-transplanted patients change their social function after transplantation. AIM: To investigate the main concerns associated with social function after SOT and how solid organ transplant recipients (SOTRs) deal with these concerns. METHOD: Twenty SOTRs, 13 men and 7 women, with a mean age of 54 years (range 22-75 years) and due for their first-year follow-up were included in this study. The informants had received various types of solid organs. Data were collected through in-depth interviews, which were recorded and transcribed verbatim for analysis by the method of grounded theory (GT) developed by Charmaz. RESULT: The GT of this study describes the efforts by the 20 SOTRs to adapt socially in order to maintain their social functioning and leading a normal life. The efforts summaries a process wherein the generated GT is present through three main categories: deconstruction, restriction and reconstruction, showing various ways to socially adapt. Through this process, a clear path of transition through adaptation is evident, starting before transplantation and continues beyond the first year after transplantation. CONCLUSION: Social functions improved through a process of adaptation during the first year after transplantation. Working and travelling were the two most important aspects of social function. All the informants emphasised the importance of regaining a normal life, which was the outcome of a successful adaptation.

Attitudes towards organ donor advocacy among Swedish intensive care nurses.

OBJECTIVES: To explore the attitudes of Swedish intensive care nurses towards organ donor advocacy. BACKGROUND: The concept of organ donor advocacy is critical to nurses who care for potential donors in order to facilitate organ donation (OD). DESIGN: A retrospective cross-sectional study was employed. METHODS: Inclusion criteria in this survey were to be a registered nurse and to work in a Swedish intensive care unit (ICU). Participants were identified by the Swedish association of health professionals. A number of 502 Swedish ICU nurses answered the 32-item questionnaire Attitudes Towards Organ Donor Advocacy Scale (ATODAS), covering the five dimensions of organ donor advocacy: attitudes towards championing organ donation at a structural hospital level, or at a political and research level, attitudes towards actively and personally safeguarding the will and wishes of the potential organ donor, or by using a more professional approach and finally to safeguard the will and wishes of the relatives. Data were analysed with the SPSS version 18·0 and the results were assessed by using Student's t-test and post hoc test, analysis of variance (ANOVA), χ(2) , Pearson's correlation and regression analysis. RESULTS: The most favoured advocacy action was safeguarding the POD's will and wishes by a professional approach, closely followed by actively and personally safeguarding the POD's will and wishes. Nurses at local hospitals reported a more positive attitude towards organ donor advocacy overall compared with nurses at larger regional or university hospitals. Important factors leading to positive attitudes were seniority, working experience, participating in conversations with relatives, caring for brain-dead persons and private experiences from OD or organ transplantation. CONCLUSIONS: Intensive and critical care nurses with short working experience in university hospitals showed the least positive attitude towards organ donor advocacy. This is problematic because many ODs and all transplantations are performed in university hospitals. RELEVANCE TO CLINICAL PRACTICE: This study emphasizes the importance of organizing the care of PODs and their relatives in a way that promotes advocacy.

Tocilizumab in chronic active antibody-mediated rejection: rationale and protocol of an in-progress randomized controlled open-label multi-center trial (INTERCEPT study).

BACKGROUND: Chronic active antibody-mediated rejection (caAMR) in kidney transplants is associated with irreversible tissue damage and a leading cause of graft loss in the long-term. However, the treatment for caAMR remains a challenge to date. Recently, tocilizumab, a recombinant humanized monoclonal antibody directed against the human interleukin-6 (IL-6) receptor, has shown promise in the treatment of caAMR. However, it has not been systematically investigated so far underscoring the need for randomized controlled studies in this area. METHODS: The INTERCEPT study is an investigator-driven randomized controlled open-label multi-center trial in kidney transplant recipients to assess the efficacy of tocilizumab in the treatment of biopsy-proven caAMR. A total of 50 recipients with biopsy-proven caAMR at least 12 months after transplantation will be randomized to receive either tocilizumab (n = 25) added to our standard of care (SOC) maintenance treatment or SOC alone (n = 25) for a period of 24 months. Patients will be followed for an additional 12 months after cessation of study medication. After the inclusion biopsies at baseline, protocol kidney graft biopsies will be performed at 12 and 24 months. The sample size calculation assumed a difference of 5 ml/year in slope of estimated glomerular filtration rate (eGFR) between the two groups for 80% power at an alpha of 0.05. The primary endpoint is the slope of eGFR at 24 months after start of treatment. The secondary endpoints include assessment of the following at 12, 24, and 36 months: composite risk score iBox, safety, evolution and characteristics of donor-specific antibodies (DSA), graft histology, proteinuria, kidney function assessed by measured GFR (mGFR), patient- and death-censored graft survival, and patient-reported outcomes that include transplant-specific well-being, adherence to immunosuppressive medications and perceived threat of the risk of graft rejection. DISCUSSION: No effective treatment exists for caAMR at present. Based on the hypothesis that inhibition of IL-6 receptor by tocilizumab will reduce antibody production and reduce antibody-mediated damage, our randomized trial has a potential to provide evidence for a novel treatment strategy for caAMR, therewith slowing the decline in graft function in the long-term. TRIAL REGISTRATION: ClinicalTrials.gov NCT04561986. Registered on September 24, 2020.

Living organ donation practices in Europe - results from an online survey.

In Europe, living organ donation (LOD) is increasingly accepted as a valuable solution to overcome the organ shortage. However, considerable differences exist between European countries regarding frequency, practices and acceptance of donor-recipient relations. As a response, the Coordination Action project 'Living Organ Donation in Europe' (www.eulod.eu), funded by the Seventh Framework Programme of the European Commission, was initiated. Transplant professionals from 331 European kidney and liver transplant centres were invited to complete an online survey on living kidney donation (LKD) and living liver donation (LLD). In total, 113 kidney transplant centres from 40 countries and 39 liver transplant centres from 24 countries responded. 96.5% and 71.8% performed LKD and LLD respectively. The content of the medical screening of donors was similar, but criteria for donor acceptance varied. Few absolute contraindications for donation existed. The reimbursement policies diverged and the majority of the donors did not get reimbursed for their income loss during recovery. Large discrepancies were found between geographical European regions (the Eastern, the Mediterranean and the North-Western). As a result of this survey we suggest several recommendations to improve quality and safety of LOD in Europe.

Coping in relation to perceived threat of the risk of graft rejection and Health-Related Quality of Life of organ transplant recipients.

The most serious risk connected with transplantations besides infection is graft rejection. Organ transplant recipients (OTRs) perceive graft rejection as a stress factor and a threat. The primary aim of the present study was to examine types of coping used to handle the threat of the risk of graft rejection among OTRs and to investigate relations between coping and perceived threat as well as Health-Related Quality of Life (HRQoL). A second aim was to test the General Coping Questionnaire (GCQ) for reliability in relation to the threat of the risk of graft rejection. Three different questionnaires, the Perceived Threat of the Risk of Graft Rejection (PTGR), GCQ and the SF-36, were mailed to 229 OTRs between 19 and 65 years old. Patients were transplanted with a kidney, a liver or a heart and/or a lung. All patients with follow-up time of 1 year ± 3 months and 3 years ± 3 months were included. With an 81% response rate, the study comprised of 185 OTRs. The differences between the transplanted organ groups in their use of coping were small. Likewise, coping related weakly with sex, age, time since transplantation and whether they had experienced graft rejections or not. The respondents tended in general to use more of the 'positive' coping (strategies related to positive well-being). The measured coping in relation to the perceived threat of the risk of graft rejection seem to be relatively stable over time and quite independent of demographic and clinical variables.

Post-nephrectomy development of renal function in living kidney donors: a cross-sectional retrospective study.

BACKGROUND: Increasing numbers of living donor kidney transplantations calls for better knowledge about long-term donor outcomes and risks. METHODS: To explore long-term kidney donor outcomes and risks, we conducted a cross sectional retrospective study. To this end, we analysed renal function using measured glomerular filtration rate (mGFR) and estimated glomerular filtration rate (eGFR) as well as microalbuminuria, blood pressure (BP), body mass index, haemoglobin, albumin and parathyroid hormone in kidney donors nephrectomized between 1965 and 2005. RESULTS: A total number of 573 kidney donors agreed to undergo medical follow-up examinations. The mean age (standard deviation) at donation was 47 (11) years and the mean time since donation was 14 (9) years. Both mean mGFR [68 (15) mL/min/1.73 m(2) body surface; P = 0.028] and mean eGFR [71 (16) mL/min/1.73 m(2) body surface; P < 0.001], based on modified diet renal dysfunction and iohexol or Cr-EDTA clearance, respectively, were found to decrease with age and to increase with time since donation. Special multivariable regression analyses reveal that for 30-year old donors, the median eGFR typically increases during the first 17 years, then remains constant for ~8 years and slowly declines thereafter. For 50-year-old donors, the median eGFR is expected to increase during the first 15 years or so and then to enter a phase of slight progressive decline. In total, 23% (126/546) of the donors were on antihypertensive medication. An additional 22% (117/543) of the donors were found to suffer from hitherto undiagnosed hypertension (BP >140/90 mm Hg). CONCLUSION: Renal function of the remaining kidney in living donors is expected to improve for many years but will show signs of slight deterioration in the longer run.

The perceived threat of the risk for graft rejection and health-related quality of life among organ transplant recipients.

AIMS: This study was primarily aimed for developing and testing a valid and reliable instrument that measures perceived threat of the risk for graft rejection after organ transplantation. A second aim was to report descriptive data regarding graft rejection and Health-Related Quality of Life. BACKGROUND: The most serious risk connected with transplantations besides infection is graft rejection. DESIGN: Non experimental, descriptive involving instrument development and psychometric assessment. METHOD: Questionnaires about perceived threat of the risk for graft rejection and Health-Related Quality of Life were mailed to 229 OTRs between 19-65 years old. The items were formed from a previous interview study. Patients were transplanted with a kidney, a liver or a heart and/or a lung. All patients with follow-up time of one year ± three months and three years ± three months were included. RESULTS: With an 81% response rate, the study comprised of 185 OTRs, who had received either a kidney (n = 117), a liver (n = 39) or heart or lung (n = 29). Three homogenous factors of perceived threat for graft rejection were revealed, labelled 'intrusive anxiety', 'graft-related threat' and 'lack of control'. Tests of internal consistency showed good item-scale convergent and discriminatory validity. A majority of the OTRs scored low levels for 'intrusive anxiety'. The kidney transplant recipients experienced more 'graft-related threat' by acute graft rejection than those transplanted with a liver, heart or lung. CONCLUSION: In conclusion, this study suggests that it is possible to measure the perceived threat of the risk for graft rejection in three homogenous factors. Relevance to clinical practice. The instrument perceived threat of the risk for graft rejection, might be usable to measure the impact of fear of graft rejection, to predict needs of pedagogical intervention strategies to reduce fear and to improve Health-Related Quality of Life related to graft rejection.

Self-efficacy, recovery and psychological wellbeing one to five years after heart transplantation: a Swedish cross-sectional study.

BACKGROUND: Self-efficacy refers to a person´s confidence in carrying out treatment-related activities and constitutes the foundation of self-management as well as long-term follow-up after heart transplantation. Exploring the heart recipients´ experiences by means of self-report instruments provides healthcare professionals with valuable information on how to supply self-management support after heart transplantation. AIMS: The aim was to explore self-efficacy in relation to the self-reported level of recovery and psychological wellbeing, among adult heart recipients, one to 5 years after transplantation. METHODS: This cross-sectional study includes 79 heart recipients, due for follow-up one to 5 years after transplantation. Three different self-assessment instruments were employed: the self-efficacy for managing chronic disease 6-item scale; the postoperative recovery profile; and the psychological general wellbeing instrument. RESULTS: The reported level of self-efficacy was high (median 8.3, maximum score 10). Significantly higher self-efficacy was seen among those who had returned to work (P = 0.003) and those without pre-transplant mechanical circulatory support (P = 0.033). In total, 65.5% (n = 52) reported being reasonably recovered, while 18.8% (n = 12) were not recovered. The median total psychological general wellbeing score was 108 (P25 = 24, P75 = 117), suggesting overall good psychological wellbeing in the whole group of heart recipients. CONCLUSION: The heart transplant recipients in our study had an overall high level of self-efficacy. Low self-efficacy was found among those with a low self-reported level of recovery, pre-transplant treatment with mechanical circulatory support or who had not returned to work. This is important information for transplant professionals when helping heart recipients to balance their expectations about recovery.