Assessing and managing frailty in advanced heart failure: An International Society for Heart and Lung Transplantation consensus statement.

Frailty is increasingly recognized as a salient condition in patients with heart failure (HF) as previous studies have determined that frailty is highly prevalent and prognostically significant, particularly in those with advanced HF. Definitions of frailty have included a variety of domains, including physical performance, sarcopenia, disability, comorbidity, and cognitive and psychological impairments, many of which are common in advanced HF. Multiple groups have recently recommended incorporating frailty assessments into clinical practice and research studies, indicating the need to standardize the definition and measurement of frailty in advanced HF. Therefore, the purpose of this consensus statement is to provide an integrated perspective on the definition of frailty in advanced HF and to generate a consensus on how to assess and manage frailty. We convened a group of HF clinicians and researchers who have expertise in frailty and related geriatric conditions in HF, and we focused on the patient with advanced HF. Herein, we provide an overview of frailty and how it has been applied in advanced HF (including potential mechanisms), present a definition of frailty, generate suggested assessments of frailty, provide guidance to differentiate frailty and related terms, and describe the assessment and management in advanced HF, including with surgical and nonsurgical interventions. We conclude by outlining critical evidence gaps, areas for future research, and clinical implementation.

Impact of sarcopenia on daily functioning: a cross-sectional study among older inpatients.

BACKGROUND AND AIM: Geriatric patients with sarcopenia are at increased risk for functional decline with loss of independence in daily living. This cross-sectional study aims to investigate the impact of sarcopenia on different domains of functional status in hospitalized geriatric patients. METHODS: Sarcopenia was assessed at hospital admission using the recommendations of the European Working Group on Sarcopenia in Older People 2 (EWGSOP2). Body impedance analysis (BIA) was performed to determine muscle mass, and a pneumatic hand dynamometer was used to assess muscle strength. The functional independence measure (FIM) score, an 18-item tool exploring an individual's physical, cognitive and social functions, was used to measure functional status. RESULTS: In 305 included inpatients with a median age of 84.0 years (65.6% female), prevalence of sarcopenia was 22.6%. Overall, sarcopenic patients had significant lower FIM scores compared to non-sarcopenic patients (p = 0.006). An association with sarcopenia was found for the FIM items bed/chair/wheelchair transfer (p = 0.047), transfer to toilet (p = 0.048), locomotion (p = 0.001), climbing stairs (p = 0.012), comprehension (p = 0.029), and social interaction (p = 0.028). CONCLUSION: In hospitalized geriatric patients, sarcopenia was found to be associated with both cognitive and mobility domains, but not with self-care domains of the FIM score. Therefore, when addressing sarcopenia in inpatients, tailored and multi-dimensional training interventions mainly should focus on motor-cognitive abilities.

A National Survey Comparing Patients' and Transplant Professionals' Research Priorities in the Swiss Transplant Cohort Study.

We aimed to identify, assess, compare and map research priorities of patients and professionals in the Swiss Transplant Cohort Study. The project followed 3 steps. 1) Focus group interviews identified patients' (n = 22) research priorities. 2) A nationwide survey assessed and compared the priorities in 292 patients and 175 professionals. 3) Priorities were mapped to the 4 levels of Bronfenbrenner's ecological framework. The 13 research priorities (financial pressure, medication taking, continuity of care, emotional well-being, return to work, trustful relationships, person-centredness, organization of care, exercise and physical fitness, graft functioning, pregnancy, peer contact and public knowledge of transplantation), addressed all framework levels: patient (n = 7), micro (n = 3), meso (n = 2), and macro (n = 1). Comparing each group's top 10 priorities revealed that continuity of care received highest importance rating from both (92.2% patients, 92.5% professionals), with 3 more agreements between the groups. Otherwise, perspectives were more diverse than congruent: Patients emphasized patient level priorities (emotional well-being, graft functioning, return to work), professionals those on the meso level (continuity of care, organization of care). Patients' research priorities highlighted a need to expand research to the micro, meso and macro level. Discrepancies should be recognized to avoid understudying topics that are more important to professionals than to patients.

The Main Thing is to be Alive-Exploring Patients' Experiences With Weight Gain After Liver Transplantation: A Qualitative Study.

Weight gain after liver transplantation (LTx) contributes to new-onset obesity. We explored patients' experiences with gaining weight after LTx. Individual interviews were guided by open-ended questions. We analyzed transcripts with the reflexive thematic analysis approach by Braun and Clarke. The 12 participants gained 11.5 kg weight (median) over a median of 23 months after LTx. The constitutive theme "The main thing is to be alive" was a recurrent insight, captured in three facets: "The arduous path back to living" was the emotional expression of the ups and downs during a life-threatening illness to finally being grateful for the new life. "A pleasurable new phase of life" was the legitimation, reflecting the appreciation of gaining weight and returning to a healthy appearance. "I am allowed to look like this now" was the consoling facet after a time of burden due to the increased weight and frustration of being unsuccessful in losing weight. Finally, the awareness of being a LTx survivor outplayed the burden of the excess weight. Early interventions are crucial because the comforting insight "I am allowed to look like this now" may hinder further engagement in weight loss activities. Our recommendations on education and self-management support may guide clinical practice.

Experience of adult patients and professionals with a program for the prevention of alcohol withdrawal delirium in the acute care setting-A case study.

PURPOSE: To investigate the experiences of adult patients and professionals with the prevention of alcohol withdrawal delirium program DESIGN AND METHODS: A simple, descriptive case study with several units of analysis was chosen as the study design. PARTICIPANTS: Six patients, 15 nurses, one family member, and two physicians METHODS: Semi-structured interviews and observation sessions. The Braun and Clarke thematic analysis method was used for the data analysis. RESULTS: Three main themes were identified: "Talking about alcohol," "Monitoring withdrawal symptoms," and "Collaboration with the Advanced Practice Nurse for delirium management." CONCLUSION: The program is highly beneficial in this field of practice and is widely accepted by all those involved. The Advanced Practice Nurse played an important role to facilitate the processes.

Age at Time of Kidney Transplantation as a Predictor for Mortality, Graft Loss and Self-Rated Health Status: Results From the Swiss Transplant Cohort Study.

Introduction: The effect of age on health outcomes in kidney transplantation remains inconclusive. This study aimed to analyze the relationship between age at time of kidney transplantation with mortality, graft loss and self-rated health status in adult kidney transplant recipients. Methods: This study used data from the Swiss Transplant Cohort Study and included prospective data of kidney transplant recipients between 2008 and 2017. Time-to-event analysis was performed using Cox' regression analysis, and -in the case of graft loss- competing risk analysis. A random-intercept regression model was applied to analyse self-rated health status. Results: We included 2,366 kidney transplant recipients. Age at transplantation linearly predicted mortality. It was also predictive for graft loss, though nonlinearly, showing that recipients aged between 35 and 55 years presented with the lowest risk of experiencing graft loss. No relationship of age with self-rated health status was detected. Conclusion: Higher mortality in older recipients complies with data from the general population. The non-linear relationship between age and graft loss and the higher scored self-rated health status at all follow-up time-points compared to the pre-transplant status -regardless of age- highlight that age alone might not be an accurate measure for risk prediction and clinical decision making in kidney transplantation.

Clinicians and patients perspectives on follow-up care and eHealth support after allogeneic hematopoietic stem cell transplantation: A mixed-methods contextual analysis as part of the SMILe study.

PURPOSE: We report on our contextual analysis's methodology, as a first step of an implementation science project aiming to develop, implement, and test the effectiveness of an integrated model of care in SteM-cell transplantatIon faciLitated by eHealth (SMILe). METHODS: We applied an explanatory sequential mixed-methods design including clinicians and patients of the University Hospital Freiburg, Germany. Data were collected from 3/2017 to 1/2018 via surveys in 5 clinicians and 60 adult allogeneic stem-cell transplantation patients. Subsequently, we conducted 3 clinician focus groups and 10 patient interviews. Data analysis followed a 3-step process: (1) creating narrative descriptions, tables, and maps; (2) mapping key observational findings per dimension of the eHealth-enhanced Chronic-Care Model; (3) reflecting on how findings affect our choice of implementation strategies. RESULTS: Current clinical practice is mostly acute care driven, with no interdisciplinarity and weak chronic illness management. Gaps were apparent in the dimensions of self-management support and delivery-system design. Health behaviors that would profit from support include medication adherence, physical activity and infection prevention. The theme "being alone and becoming an expert" underpinned patients need to increase support in hospital-to-home transitions. Patients reported insecurity about recognizing, judging and acting upon symptoms. The theme "eHealth as connection not replacement" underscores the importance of eHealth augmenting, not supplanting human contact. Synthesis of our key observational findings informed eight implementation strategies. CONCLUSION: Stakeholders are willing towards a chronic care-focused approach and open for eHealth support. The contextual information provides a basis for the SMILe model's development and implementation.

A qualitative analysis of the Three Good Things intervention in healthcare workers.

BACKGROUND: Intensive care unit (ICU) personnel have an elevated prevalence of job-related burn-out and post-traumatic stress disorder, which can ultimately impact patient care. To strengthen healthcare workers' skills to deal with stressful events, it is important to focus not only on minimising suffering but also on increasing happiness, as this entails many more benefits than simply feeling good. Thus, the purpose of this study was to explore the content of the 'good things' reported by healthcare workers participating in the 'Three Good Things' intervention. METHODS: In a tertiary care medical centre, a sample of 89 neonatal ICU (NICU) healthcare professionals registered for the online intervention. Of these, 32 individuals eventually participated fully in the 14-day online Three Good Things intervention survey. Daily emails reminded participants to reflect on and respond to the questions: "What are the three things that went well today?" and "What was your role in bringing them about?" To analyse their responses, we applied a thematic analysis, which was guided by our theoretical understanding of resilience. RESULTS: Involving more than 1300 statements, the Three Good Things responses of the 32 study participants, including registered nurses, physicians and neonatal nurse practitioners, led to the identification of three main themes: (1) having a good day at work; (2) having supportive relationships and (3) making meaningful use of self-determined time. CONCLUSIONS: The findings show the personal and professional relevance of supportive relationships strengthened by clear communication and common activities that foster positive emotions. The Three Good Things exercise acknowledges the importance of self-care in healthcare workers and appears to promote well-being, which might ultimately strengthen resilience.

Handle with care: A systematic review on frailty in cardiac care and its usefulness in heart transplantation.

BACKGROUND: There is growing consensus that frailty, a state of vulnerability and a decline in functioning across multiple physiological body systems, is a valuable criterion to guide clinicians' risk prediction for poor outcomes in adult transplant candidates. In its 2016 listing criteria for heart transplantation the International Society for Heart Lung Transplantation recommends frailty assessment. We aimed to summarize the usefulness of frailty assessment in heart transplant candidates or recipients reported throughout the literature. METHODS: We performed a systematic literature search in PubMed to identify papers reporting on frailty in transplantation, chronic heart failure, and ventricualr assist device implantation published over the last 10 years in English. Additionally, a hand search was conducted, including manually searching the reference lists and a citation search of relevant papers. RESULTS: Eleven primary research articles were included in this systematic review. Frailty is a risk factor for morbidity, hospitalization, and mortality in patients with advanced heart failure and individuals being considered for ventricualr assist device implantation. Of the patients being considered for transplantation, 33% are frail. The Frailty Phenotype by Fried is a particularly useful tool to quickly identify higher risk patients for adverse outcomes. CONCLUSION: A lack of standardization and limited evidence on frailty in transplantation limit its use as a definitive listing criterion. Future research efforts should focus on systematic integration of frailty measures in transplant practice.

ExplorinG frailty and mild cognitive impairmEnt in kidney tRansplantation to predict biomedicAl, psychosocial and health cost outcomeS (GERAS): protocol of a nationwide prospective cohort study.

AIM: To present the rationale, design and methodology of the GERAS project, which examines whether assessment of frailty and mild cognitive impairment could enhance risk prediction for biomedical, psychosocial outcomes and foster efficient resource allocation in kidney transplantation. BACKGROUND: For the burgeoning cohort of older patients considered for kidney transplantation, evidence gaps regarding frailty and mild cognitive impairment limit clinical decision-making and medical management. As known risk factors for 'hard' clinical outcomes in chronic illness, both require further study in transplantation. Integrating these and other bio-psychosocial factors into a comprehensive pre-transplant patient assessment will provide insights regarding economic implications and may improve risk prediction. DESIGN: A nation-wide multi-centre prospective cohort study nested in the Swiss Transplant Cohort Study. METHODS: Our nationally representative convenience sample includes 250 adult kidney transplant recipients. Data sources include the Swiss Transplant Cohort Study and primary data collected at time of transplantation, 6 months, 1 and 2 years post-transplant via established measures (the Montreal Cognitive Assessment, Psychosocial Questionnaire, Fried Frailty Instrument and a blood analysis), investigator-developed instruments and datasets compiled by hospitals' management control units, sickness funds, the Swiss Federal Statistical Office and the European Renal Association. Descriptive, competing risk survival and mixed effects analyses will be performed. Research Ethics Committee approval was obtained in January 2016. DISCUSSION: This pioneering project jointly examines frailty and mild cognitive impairment from bio-psychosocial and health economic perspectives. Results may significantly inform risk prediction, care tailoring and resource optimization to improve health outcomes in the ageing kidney transplant cohort.

Grief and loss for patients before and after heart transplant.

OBJECTIVES: The purpose of the study was to examine the loss and grief experiences of patients waiting for and living with new hearts. BACKGROUND: There is much scholarship on loss and grief. Less attention has been paid to these issues in clinical transplantation, and even less on the patient experience. METHODS: Part of a qualitative inquiry oriented to the work of Merleau-Ponty, a secondary analysis was carried out on audiovisual data from interviews with thirty participants. RESULTS: Patients experience loss and three forms of grief. Pre-transplant patients waiting for transplant experience loss and anticipatory grief related to their own death and the future death of their donor. Transplanted patients experience long-lasting complicated grief with respect to the donor and disenfranchised grief which may not be sanctioned. CONCLUSIONS: Loss as well as anticipatory, complicated and disenfranchised grief may have been inadvertently disregarded or downplayed. More research and attention is needed.

Heart transplants: Identity disruption, bodily integrity and interconnectedness.

Of heart transplant recipients, 30 per cent report ongoing or episodic emotional issues post-transplant, which are not attributable to medications or pathophysiological changes. To this end, our team theorized that cardiac transplantation introduces pressing new questions about how patients incorporate a transplanted heart into their sense of self and how this impacts their identity. The work of Merleau-Ponty provided the theoretical underpinning for this project as it rationalizes how corporeal changes affect one's self and offer an innovative framework to access these complex aspects of living with a transplanted heart. We used visual methodology and recorded 25 semi-structured interviews videographically. Both visual and verbal data were analyzed at the same time in an iterative process. The most common theme was that participants expressed a disruption to their own identity and bodily integrity. Additionally, participants reported interconnectedness with the donor, even when the transplanted heart was perceived as an intruder or stranger. Finally, transplant recipients were very vivid in their descriptions and speculation of how they imagined the donor. Receiving an anonymous donor organ from a stranger often leaves the recipient with questions about who they themselves are now. Our study provides a nuanced understanding of heart transplant recipients' embodied experiences of self and identity. Insights gained are valuable to educate transplant professionals to develop new supportive interventions both pre- and post-transplant, and to improve the process of informed consent. Ultimately, such insights could be used to enable heart transplant recipients to incorporate the graft optimally over time, easing distress and improving recovery.

Preparation and Support of Patients through the Transplant Process: Understanding the Recipients' Perspectives.

Preparation for heart transplant commonly includes booklets, instructional videos, personalized teaching sessions, and mentorship. This paper explores heart transplant recipients' thoughts on their preparation and support through the transplant process. Twenty-five interviews were audio-/videotaped capturing voice and body language and transcribed verbatim. Coding addressed language, bodily gesture, volume, and tone in keeping with our visual methodology. Recipients reported that only someone who had a transplant truly understands the experience. As participants face illness and life-altering experiences, maintaining a positive attitude and hope is essential to coping well. Healthcare professionals provide ongoing care and reassurance about recipients' medical status. Mentors, family members, and close friends play vital roles in supporting recipients. Participants reported that only heart transplant recipients understood the experience, the hope, and ultimately the suffering associated with living with another persons' heart. Attention needs to be focused not solely on the use of teaching modalities, but also on the development of innovative support networks. This will promote patient and caregiver engagement in self-management. Enhancing clinicians' knowledge of the existential aspects of transplantation will provide them with a nuanced understanding of the patients' experience, which will ultimately enhance their ability to better prepare and support patients and their caregivers.

Qualitative interviews vs standardized self-report questionnaires in assessing quality of life in heart transplant recipients.

Quality of life (QoL) studies in heart transplant recipients (HTRs) using validated, quantitative, self-report questionnaires have reported poor QoL in approximately 20% of patients. This consecutive mixed methods study compared self-report questionnaires, the Medical Outcomes Study 36-item Short Form Health Survey (MOS SF-36) and the Atkinson Life Satisfaction Scale, with phenomenologically informed audiovisual (AV) qualitative interview data in 27 medically stable HTRs (70% male; age 53 ± 13.77 years; time since transplant 4.06 ± 2.42 years). Self-report questionnaire data reported poor QoL and more distress compared with previous studies and normative population samples; in contrast, 52% of HTRs displayed pervasive distress according to visual methodology. Using qualitative methods to assess QoL yields information that would otherwise remain unobserved by the exclusive use of quantitative QOL questionnaires.

What they say versus what we see: "hidden" distress and impaired quality of life in heart transplant recipients.

BACKGROUND: Quality of life (QoL) studies in heart transplant recipients generally rely on quantifiable self-report questionnaires and have shown that approximately 20% of patients undergo distress and poor QoL not clearly related to medical variables. METHODS: Building on existing qualitative research, we used a phenomenologically informed audiovisual method to explore the nature of "distress" in heart transplant recipients. Focused open-ended interviews were conducted in non-clinical settings with 27 medically stable heart transplant recipients (70% male, mean age 53 ± 13 years, range 18 to 72 years; mean time since transplant 4.1 ± 2.4 years). Interviews were audio/videotaped and transcribed verbatim. A qualitative software program (NVIVO8) was used to code interview transcripts and videotaped bodily gestures and "expressive artifacts" as well as vocal tone and volume. RESULTS: Distress was displayed by 88% of patients during the interview, and 52% displayed a profound disjunct between the words they used to describe their quality of life (e.g., "wonderful") and their embodied expressions of the same (e.g., protective body posturing, distressed facial expression). Most also expressed significant distress when discussing issues such as the donor and their "gift of life," as well as a disrupted sense of bodily integrity and identity that they felt could only be appreciated by fellow heart recipients. CONCLUSIONS: Increased awareness of this distress and disruption related to bodily integrity and identity after heart transplant may allow transplant professionals and researchers to see beyond "words" to more effectively reduce distress and improve quality of life.