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 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.

Pre-emptive live donor kidney transplantation-moving barriers to opportunities: An ethical, legal and psychological aspects of organ transplantation view.

Live donor kidney transplantation (LDKT) is the optimal treatment modality for end stage renal disease (ESRD), enhancing patient and graft survival. Pre-emptive LDKT, prior to requirement for renal replacement therapy (RRT), provides further advantages, due to uraemia and dialysis avoidance. There are a number of potential barriers and opportunities to promoting pre-emptive LDKT. Significant infrastructure is needed to deliver robust programmes, which varies based on socio-economic standards. National frameworks can impact on national prioritisation of pre-emptive LDKT and supporting education programmes. Focus on other programme's components, including deceased kidney transplantation and RRT, can also hamper uptake. LDKT programmes are designed to provide maximal benefit to the recipient, which is specifically true for pre-emptive transplantation. Health care providers need to be educated to maximize early LDKT referral. Equitable access for varying population groups, without socio-economic bias, also requires prioritisation. Cultural barriers, including religious influence, also need consideration in developing successful outcomes. In addition, the benefit of pre-emptive LDKT needs to be emphasised, and opportunities provided to potential donors, to ensure timely and safe work-up processes. Recipient education and preparation for pre-emptive LDKT needs to ensure increased uptake. Awareness of the benefits of pre-emptive transplantation require prioritisation for this population group. We recommend an approach where patients approaching ESRD are referred early to pre-transplant clinics facilitating early discussion regarding pre-emptive LDKT and potential donors for LDKT are prioritized for work-up to ensure success. Education regarding pre-emptive LDKT should be the norm for patients approaching ESRD, appropriate for the patient's cultural needs and physical status. Pre-emptive transplantation maximize benefit to potential recipients, with the potential to occur within successful service delivery. To fully embrace preemptive transplantation as the norm, investment in infrastructure, increased awareness, and donor and recipient support is required.

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.

Fear of graft rejection after heart transplantation - a nationwide cross-sectional cohort study.

BACKGROUND: Cellular rejection is most common 3-6 months after heart transplantation while chronic rejection, that is, cardiac allograft vasculopathy and malignancy are the most common causes of death in heart-transplant recipients beyond the third year after transplantation. However, the heart transplantation recipient's perceived threat of graft rejection has never been explored. AIM: The aim was to explore perceived threat of the risk of graft rejection and its relationship to psychological wellbeing, fatigue, health literacy, adherence and self-efficacy 1-5 years after heart transplantation. METHODS: In a nationwide, cross-sectional study that constituted part of the Self-management after thoracic transplantation project, 79 heart recipients (68% men and 32% women with a mean age of 52.6 years) were investigated after one year (n=28), two years (n=17), three years (n=11), four years (n=17) and five years (n=6). The instruments used were: the Perceived Threat of the Risk of Graft Rejection, the Psychological General Well-being, Self-efficacy for Managing Chronic Disease, the Multidimensional Fatigue Inventory, the Newest Vital Sign and the Basel Assessment of Adherence to Immunosuppressive Medication Scale. RESULTS: Twenty-eight per cent of the heart transplantation recipients perceived graft rejection as a serious threat. Intrusive anxiety was low and 37% perceived the threat of the risk of graft rejection as being beyond their control. Heart transplant recipients with high level of fatigue and low psychological well-being reported stronger intrusive anxiety and less control. CONCLUSION: A perceived threat of the risk of graft rejection is present in the everyday lives of heart transplantation recipients and is strongly related to overall psychological well-being.

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.

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.

Symptom Occurrence and Distress after Heart Transplantation-A Nationwide Cross-Sectional Cohort Study.

Experiencing symptoms after heart transplantation may hamper the heart recipient's self-management which can lead to negative effects. We know little about symptom occurrence and distress after heart transplantation, especially in relation to sociodemographic variables. The aim of the study was to explore self-reported symptom occurrence and distress after heart transplantation and their relationship with self-reported psychological well-being and sociodemographic factors. This multicenter, cross-sectional, cohort study is associated with the Swedish national Self-Management After Thoracic Transplantation study (SMATT). Two questionnaires were distributed at the heart recipients' yearly follow-up, one to five years post-transplant at three Swedish university hospitals from 2014-2017. In a total 79 heart recipients, 54 men and 25 women, with a mean age 53 years returned the questionnaires. Symptoms occurred differently depending on type and duration of follow-up. The most common symptoms, trembling hands, and decreased libido were also the most distressing. Heart recipients most burdened by symptoms were those younger than 50 years, not working, with poor psychological well-being or living alone. Fatigue explained more than 60% of the variation in transplant specific well-being. In conclusion this study points at the target groups within the heart transplant population that needs person centered symptom management support where the focus should be on side-effects of the medication i.e., trembling hands as well as the patients' sexual health.

The Meaning of Surviving Three Years after a Heart Transplant-A Transition from Uncertainty to Acceptance through Adaptation.

The rationale was to longitudinally follow-up interviews performed with heart recipients at their one-year examination in order to deepen the understanding of the meaning of surviving a heart transplant. The aim was to explore the meaning of surviving three years after a heart transplant compared to one year and to identify what constitutes the change process. A phenomenological-hermeneutic method was used. This multicenter study was carried out at the two hospitals in Sweden where heart transplants are performed. A total of 13 heart recipients who survived three years after a heart transplant were invited to participate in this three-year follow-up study and 12 accepted, 3 women and 9 men, with a mean age of 51.25 years. The naïve understanding revealed that the heart recipients strongly accepted their life situation and that time had enabled this acceptance of limitations through adaptation. The thematic structural analyses cover six themes illustrating the meaning of acceptance and adaptation, i.e., accepting life as it is, adapting to post-transplant limitations, adapting to a changed body, social adaptation, showing gratitude and trusting oneself and others. In conclusion, achieving acceptance and a solid sense of self-efficacy after heart transplantation is a time-consuming process that involves courage to face and accept the reality and adapt in every life dimension.

Chronic pain 1-5 years after heart transplantation-A nationwide cross-sectional cohort study.

Aim: To provide a multidimensional assessment of self-reported chronic pain 1-5 years after heart transplantation and its relationship with self-reported well-being, fatigue, recovery, self-efficacy and socio-economic factors and to explore differences between heart recipients and a cohort of lung recipients. Design: This multicentre, cross-sectional, cohort study is a part of the Swedish national Self-management after thoracic transplantation study. Methods: Six questionnaires were distributed at the heart recipients yearly follow-up (1-5 years) at three Swedish university hospitals 2014-2017. Results: The study group comprised of 79 heart recipients, 25 women and 54 men with a mean age of 52.68 years. Chronic pain among heart recipients was common and those not in paid employment as well as those with low psychological well-being and high general fatigue reported significantly more pain. Female heart recipients were more affected by pain. General health and vitality, general fatigue, physical fatigue and reduced activity were related to the pain intensity score. Relevance to clinical practice: As it is the duty of the healthcare system to provide adequate pain treatment, screening for pain should be a mandatory part of long-term follow-up.

Raising awareness of unspecified living kidney donation: an ELPAT view.

BACKGROUND: Living donor kidney transplantation (LDKT) is the preferred treatment for patients with end-stage renal disease and unspecified living kidney donation is morally justified. Despite the excellent outcomes of LDKT, unspecified kidney donation (UKD) is limited to a minority of European countries due to legal constraints and moral objections. Consequently, there are significant variations in practice and approach between countries and the contribution of UKD is undervalued. Where UKD is accepted as routine, an increasing number of patients in the kidney exchange programme are successfully transplanted when a 'chain' of transplants is triggered by a single unspecified donor. By expanding the shared living donor pool, the benefit of LDKT is extended to patients who do not have their own living donor because a recipient on the national transplant list always completes the chain. Is there a moral imperative to increase the scope of UKD and how could this be achieved? METHODS: An examination of the literature and individual country practices was performed to identify the limitations on UKD in Europe and recommend strategies to increase transplant opportunities. RESULTS: Primary limitations to UKD, key players and their roles and responsibilities were identified. CONCLUSIONS: Raising awareness to encourage the public to volunteer to donate is appropriate and desirable to increase UKD. Recommendations are made to provide a framework for increasing awareness and engagement in UKD. The public, healthcare professionals, policy makers and society and religious leaders have a role to play in creating an environment for change.

Living Anonymous Renal Donors Do Not Regret: Intermediate and Long-Term Follow-Up with a Focus on Motives and Psychosocial Outcomes.

BACKGROUND Living anonymous donation (LAD) of kidneys was introduced in Sweden in 2004. This study reports on outcomes of Swedish LAD experiences from 2004 to 2016, focusing on donors' motives, the care they received, psychosocial aspects, and medical status at follow-up. MATERIAL AND METHODS Donor data were collected through a physician interview, medical check-up, review of medical charts, the Hospital Anxiety Depression Scale (HADS), and a routine national questionnaire. Of the 26 LADs during the study period, 1 donor died and 1 declined to participate, leaving a study population of 24. RESULTS Half of the donors were male, which is a higher proportion than for directed living donors. The major motive detected was altruism. Of the 24 LADs, 96% were very satisfied and would donate again if possible, 46% noted increased self-esteem, and a third were happier after the donation. Sixty-two percent received anonymous information about the recipient and 40% would have liked to meet the recipient. HADS scores were normal. Two donors had antidepressant treatment, 1 of whom had received treatment before donation. Half mentioned that the pre-donation assessment took too long. At follow-up, mean eGFR was 62±12 mL/min/1.73 m², of which 16 were in CKD II and 8 were in CKD III. Four donors had developed hypertension, 1 of whom also developed type 2 diabetes. CONCLUSIONS Swedish LADs are very satisfied and medical outcomes are acceptable. We propose that the transplant community and the National Board of Health and Welfare take a more active approach to informing the general public about LAD.

Developing a Grounded Theory on Adaptation After Lung Transplantation From Intermediate-Term Patient Experiences.

BACKGROUND: Previous research revealed that it is possible for lung recipients to experience health 1 year posttransplant, despite not being fully recovered. However, an in-depth, long-term perspective on how lung recipients' health transition evolves over time is lacking. Thus, the aim of this study was to further develop a grounded theory of health transition by exploring the process of change 1 to 3 years after lung transplantation. METHODS: The grounded theory method was used prospectively to analyze the narratives of 14 adult lung recipients who were included at their 1-year follow-up and reinterviewed 2 years later. RESULTS: This novel study contributes an in-depth understanding of the adaptation process after lung transplantation. The greatest concern in the 3 years after lung transplantation was adaptation to a new normality, which was achieved by 3 main strategies: compare, accept, and adjust. Adaptation to a new normality involved understanding that one's previous life no longer exists and that a new way of living requires adaptation. Successful adaptation resulted in the experience of health and well-being, whereas too many symptoms and limitations in everyday life led to difficulties and a profound sense of illness. CONCLUSIONS: Lung recipients can experience health, despite symptoms and complications by adapting to a new normality. This individual process begins posttransplant and continues throughout life.

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.

Fear of graft rejection 1-5 years after lung transplantation-A nationwide cohort study.

AIM: To explore the perceived threat of the risk of graft rejection and its relationship to psychological general well-being and self-efficacy 1-5 years after lung transplantation. DESIGN: A nationwide, cross-sectional cohort study as a part of the Self-management after thoracic transplantation study. METHODS: A total of 117 lung transplant recipients due for their yearly follow-up 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 Perceived Threat of the Risk of Graft Rejection, the Psychological General Well-being and Self-efficacy in chronic illness. RESULTS: The lung recipients reported an overall low perceived threat of the risk of graft rejection with no gender differences. Intrusive anxiety explained 24.7% of the variance in the PGWB-sum (p ≤ 0.001) and makes a statistically significant (ß = -497; p ≤ 0.001) unique contribution to the overall psychological general well-being (95%CI 3.004-1.515).

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.

The Meaning of Being a Living Kidney, Liver, or Stem Cell Donor-A Meta-Ethnography.

BACKGROUND: Studies on living donors from the donors' perspective show that the donation process involves both positive and negative feelings involving vulnerability. Qualitative studies of living kidney, liver, and allogeneic hematopoietic stem cell donors have not previously been merged in the same analysis. Therefore, our aim was to synthesize current knowledge of these donors' experiences to deepen understanding of the meaning of being a living donor for the purpose of saving or extending someone's life. METHODS: The meta-ethnography steps presented by Noblit and Hare in 1988 were used. RESULTS: Forty-one qualitative studies from 1968 to 2016 that fulfilled the inclusion criteria were analyzed. The studies comprised experiences of over 670 donors. The time since donation varied from 2 days to 29 years. A majority of the studies, 25 of 41, were on living kidney donors. The synthesis revealed that the essential meaning of being a donor is doing what one feels one has to do, involving 6 themes; A sense of responsibility, loneliness and abandonment, suffering, pride and gratitude, a sense of togetherness, and a life changing event. CONCLUSIONS: The main issue is that one donates irrespective of what one donates. The relationship to the recipient determines the motives for donation. The deeper insight into the donors' experiences provides implications for their psychological care.

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.

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.