Patient-centered Palliative Care Research Articles

Ecology of End-of-life Medical Care for Advanced Cancer Patients in China.

Cancer is a leading cause of death worldwide. Approximately 30% of global cancer-related deaths occur in mainland China. However, there is a paucity of information regarding the end-of-life care-seeking behavior of patients with advanced cancer in China. Our study was to investigate end-of-life care-seeking behavior and to quantify the association between sociodemographic characteristics and the location and pattern of end-of-life care. We conducted a mortality follow-back survey using caregivers' interviews to estimate the number of individuals pre 1000 who died between 2013 and 2021 in the last 3months of life. We collected data on hospitalization, outpatient visits, cardiopulmonary resuscitation, palliative care and hospice utilization, and place of death, stratified by age, gender, marital status, household income, residential zone, insurance type, and the primary end-of-life decision-maker of the decedents. We analyzed data from 857 deceased cancer patients, representing an average of 1000 individuals. Among these patients, 861 experienced at least moderate or more severe pain, 774 were hospitalized at least once, 468 received intensive treatment, 389 had at least one outpatient visit, 270 died in the hospital, 236 received cardiopulmonary resuscitation and 99 received specialist hospice care. Our study provides insights into the end-of-life care-seeking behavior of advanced cancer patients in China and our findings serve as a useful benchmark for estimating the use of end-of-life medical care. It highlights the need for the establishment of an accessible and patient-centered palliative care and hospice system.

Top Ten Tips Palliative Care Clinicians Should Know About Physical Therapy, Occupational Therapy, and Speech Language Pathology.

This article provides guidance on the integral role of physical therapy, occupational therapy (OT), and speech language pathology (SLP) in palliative care (PC), underlining the necessity for effective communication between physicians and therapists, the importance of caregiver education and support, the application of holistic treatment modalities in OT, the underutilization of resources in PC settings, the role of SLP professionals in feeding and nutrition, and the challenges in communication during the advanced stages of illness. The article draws on various studies and expert opinions to elucidate these issues, offering a valuable resource to health care professionals in ensuring high-quality patient-centered PC.

High-quality patient-centered palliative care: interprofessional team members’ perceptions of social workers’ roles and contribution

ABSTRACT A core tenet of interprofessional collaborative practice (IPCP) is that efficient and effective teams are critical for the delivery of high-quality, patient-centered care. Although palliative care has a history of excellent care, increasing demands and larger patient loads are challenging teams to adapt and strengthen team functioning in hospital settings. The purpose of this qualitative study was to better understand the IPCP contributions of advanced palliative social workers (PSWs) through the eyes of their colleagues. Twenty-four interprofessional palliative care (IPPC) team members from other professions (i.e. nurse practitioners, physicians, physician assistants) from 16 hospitals across the U.S. participated in 20-minute semi-structured interviews. The Patient-Centered Clinical Method (PCCM) was used as a conceptual model to aid in the interpretation of the data. This model illuminated the centrality of PSWs’ role in building and sustaining a therapeutic alliance between the patient and the IPPC team, through assessing and promoting care that centers the patient’s experience with illness, creating space to initiate, process and revisit difficult healthcare conversations and helping to modulate the pace and intensity of emotionally laden discussions. PSWs also support the therapeutic relationship with the IPPC team by providing continuity and connection across and during the hospital experience and supporting the well-being of the IPPC team. This study offers novel insights into how PSWs contribute to patient-centered IPPC and furthers the articulation of the role of PSWs in hospital settings.

Telemedicine, E-Health, and Multi-Agent Systems for Chronic Pain Management.

Telemedicine, telehealth, and E-health all offer significant benefits for pain management and healthcare services by fostering the physician-patient relationship in otherwise challenging circumstances. A critical component of these artificial-intelligence-based health systems is the "agent-based system", which is rapidly evolving as a means of resolving complicated or straightforward problems. Multi-Agent Systems (MAS) are well-established modeling and problem-solving modalities that model and solve real-world problems. MAS's core concept is to foster communication and cooperation among agents, which are broadly considered intelligent autonomous factors, to address diverse challenges. MAS are used in various telecommunications applications, including the internet, robotics, healthcare, and medicine. Furthermore, MAS and information technology are utilized to enhance patient-centered palliative care. While telemedicine, E-health, and MAS all play critical roles in managing chronic pain, the published research on their use in treating chronic pain is currently limited. This paper discusses why telemedicine, E-health, and MAS are the most critical novel technologies for providing healthcare and managing chronic pain. This review also provides context for identifying the advantages and disadvantages of each application's features, which may serve as a useful tool for researchers.

Integrating Palliative Care into Oncology Care Worldwide: The Right Care in the Right Place at the Right Time.

While the benefits of early palliative care are indisputable, most of the current evidence has emerged from resource-rich settings in urban areas of high-income countries, with an emphasis on solid tumors in outpatient settings; this model of palliative care integration is not currently scalable internationally. A shortage of specialist palliative care clinicians means that in order to meet the needs of all patients who require support at any point along their advanced cancer trajectory, palliative care must also be provided by family physicians and oncology clinicians who require training and mentorship. Models of care that facilitate the timely provision of seamless palliative care across all settings (inpatient, outpatient, and home-based care), with clear communication between clinicians, are crucial to the provision of patient-centred palliative care. The unique needs of patients with hematological malignancies must be further explored and existing models of palliative care provision modified to meet these needs. Finally, care must be provided in an equitable and culturally sensitive manner, recognizing the challenges associated with the delivery of high-quality palliative care to both patients in high-income countries who live in rural areas, as well as to those in low- and middle-income countries. A one-size-fits-all model will not suffice, and there is an urgent need to develop innovative context-specific models of palliative care integration worldwide, in order to provide the right care, in the right place, and at the right time.

Development of a complex intervention (safe and secure) to support non-western migrant patients with palliative care needs and their families.

International evidence supports the benefits of early use of palliative care, although the best use of services is often under-utilised among Danish migrants. The study aims to develop a theoretically informed, evidence-based intervention to increase support in palliative care service provision among non-western migrant patients with a life-threatening disease and their families in Denmark. The overall approach was guided by the United Kingdom Medical Research Council framework for developing and evaluating complex interventions by involving stakeholders for example patients, family caregivers, and healthcare professionals. The intervention was developed iteratively by incorporating theory and evidence. Evidence was synthesized from a systematic review, semi-structured interviews, and group discussions with patients (n=8), family caregivers (n=11), healthcare professionals (n=10); and three workshops with migrants (n=5), social and healthcare professionals (n=6). The study took place in six different settings in two regions across Denmark. The safe and secure complex intervention is a healthcare professional (e.g. nurse, physiotherapist, or occupational therapist) led patient-centred palliative care intervention at the basic level. The final intervention consists of three components 1. Education and training sessions, 2. Consultations with the healthcare professional, and 3. Coordination of care. This study describes the development of a supportive palliative care intervention for non-western migrant patients with palliative care needs and their families, followed by a transparent and systematic reporting process. A palliative care intervention combining multiple components targeting different stakeholders, is expected that safe and secure is more suitable and well customized in increasing access and use of palliative care services for non-western migrant families in Denmark.

Wearable devices in palliative care for people 65 years and older: A scoping review.

The objective of this scoping review is to map existing evidence on the use of wearable devices in palliative care for older people. The databases searched included MEDLINE (via Ovid), Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Google Scholar, which was included to capture grey literature. Databases were searched in the English language, without date restrictions. Reviewed results included studies and reviews involving patients aged 65 years or older who were active users of non-invasive wearable devices in the context of palliative care, with no limitations on gender or medical condition. The review followed the Joanna Briggs Institute's comprehensive and systematic guidelines for conducting scoping reviews. Of the 1,520 reports identified through searching the databases, reference lists, and citations, six reports met our inclusion criteria. The types of wearable devices discussed in these reports were accelerometers and actigraph units. Wearable devices were found to be useful in various health conditions, as the patient monitoring data enabled treatment adjustments. The results are mapped in tables as well as a Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) chart. The findings indicate limited and sparse evidence for the population group of patients aged 65 years and older in the palliative context. Hence, more research on this particular age group is needed. The available evidence shows the benefits of wearable device use in enabling patient-centred palliative care, treatment adjustments and symptom management, and reducing the need for patients to travel to clinics while maintaining communication with healthcare professionals.

Palliative Care Nursing in Australia and the Role of the Registered Nurse in Palliative Care.

The registered nurse has crucial preventative, therapeutic, sociocultural, and advocacy roles in promoting quality holistic patient-centred palliative care. This paper examines, describes, and analyses this multifaceted role from an antipodean perspective. We conducted systematic searches using PubMed, Google Scholar, government guidelines, authoritative body regulations, quality control guidelines, and government portals pertaining to palliative care nursing in Australia. This paper relies upon the information garnered from publications, reports, and guidelines resulting from these searches and analyses. The fundamental principles and guiding values of palliative care (and nursing) and the raison d’etre for palliative care as a discipline are underscored and expanded on. Australian Clinical Practice Guidelines (CPGs) pertaining to palliative end-of-life (EOL) nursing care and associated services are discussed. The relevant NMBA nursing standards that RNs need to have to administer opioids/narcotics in palliative care are summarised. The identification of patients who need EOL care, holistic person-centred care planning for them, and consultative multidisciplinary palliative clinical decision making are discussed in the palliative care context. Several components of advance care planning apropos health deterioration and conflicts are discussed. Several aspects of EOL care, especially palliative nursing care, are analysed using research evidence, established nursing and palliative care standards, and the Australian EOL CPGs.

Integration of palliative care in oncology-the intersection of cultures and perspectives of oncology and palliative care.

Palliative care complements anti-cancer treatment, and may actually improve the therapeutic effect by optimising performance status, functioning, symptom management and quality of life, thus improving compliance to treatment. A series of randomised controlled trials investigating early integration of palliative care and oncology document clear benefits in patient-centred outcomes. Still, palliative care is often introduced late in the disease trajectory, if at all. One reason may be that that palliative care is perceived as end-of-life care only, a too common perception among healthcare providers, patients and the public alike. Another, and maybe the most important, reason is the cultural differences between the two disciplines, oncology and palliative care. While the predominant focus in oncology is treatment and cure of the disease, i.e., a tumour-centred focus, the focus in palliative care is the patient with the disease, i.e., the patient-centred approach. Integration of oncology and palliative care implies that these two cultures approach each other, collaborate and recognise that this is not an either or, but time to collaborate with the best interest of the patients. To accomplish this, an organisational model to provide optimal patient-centred palliative care is necessary at all levels. Such a model must structure the collaborations between different professions, across different levels and the patient flow between the silos in healthcare, and should describe the content of care. Using models like this is not common, and requires changes in systems and cultures on organisational, administrative, educational and individual levels. To successfully achieve profound changes is challenging. For example, it may be hampered by professional autonomy in the different disciplines and hinder collaboration and the achievement of a shared mental model. The use of standardised care pathways may be one way to integrate the tumour-centred and patient-centred approaches, reduce cultural barriers and improve patient care.

A complex communication skills training program for physicians providing advanced cancer care – content development and barriers and solutions for implementation

ABSTRACT Background: Early integration of oncology and patient-centered palliative care is the recommended clinical practice model for patients with advanced cancer. General and specific communication skills are necessary to achieve integrated patient-centered care, but require organized training to be adequately mastered. Challenges and barriers on several levels, i.e. organizational, professional and individual may, however, hamper implementation. The development, implementation, and evaluation of such an educational program focusing on communication skills contain many steps, considerations and lessons learned, which are described in this article. Methods: A multi-professional faculty developed, implemented, and evaluated an educational program through a 5-step approach. The program was part of a Norwegian cluster-randomized controlled trial aiming to test the effect of early integration of oncology and palliative care for patients with advanced cancer. Results: The result is the PALLiON educational program; a multi-faceted, evidence-based, and learner-centered program with a specific focus on physicians’ communication skills. Four modules were developed: lectures, discussion groups, skills training, and coaching. These were implemented at the six intervention hospitals using different teaching strategies. Evaluation in a subgroup of participants showed a positive appraisal of the group discussions and skills training. Conclusion:We present our experiences and reflections regarding implementation and lessons learned, which should be considered in future developments and implementations; (1) Include experienced faculty with various backgrounds, (2) Be both evidence-based and learner-centered, (3) Choose teaching strategies wisely, (4) Expect resistance and skepticism, (5) Team up with management and gatekeepers, (6) Expect time to fly, and (7) Plan thorough assessment of the evaluation and effect. Trial registration: ClinicalTrials.gov identifier: NCT03088202.

Patient-Centered Palliative Care for Patients With Advanced Lung Cancer.

The evidence base demonstrating the benefits of an early focus on palliative care for patients with serious cancers, including advanced lung cancer, is substantial. Early involvement of specialty-trained palliative care clinicians in the care of patients with advanced lung cancer improves patient-reported outcomes, such as quality of life, and health care delivery, including hospice utilization. Since the time that many of these palliative care trials were conducted, the paradigm of cancer care for many cancers, including lung cancer, has changed dramatically. The majority of patients with advanced lung cancer are now treated with immune checkpoint inhibitors or targeted therapies, both of which have had a significant impact on patient's experience and outcomes. With this changing landscape of lung cancer therapeutics, patients are facing new and different challenges, including dealing with novel side effect profiles and coping with greater uncertainty regarding their prognosis. Patients who are living longer with their advanced cancer also struggle with how to address survivorship issues, such as sexual health and exercise, and decision making about end-of-life care. Although palliative care clinicians remain well-suited to address these care needs, they may need to learn new skills to support patients treated with novel therapies. Additionally, as the experience of patients with advanced lung cancer is becoming more varied and individualized, palliative care research interventions and clinical programs should also be delivered in a patient-centered manner to best meet patient's needs and improve their outcomes. Tailored and technology-based palliative care interventions are promising strategies for delivering patient-centered palliative care.

Advantages and Challenges in Using Telehealth for Home-Based Palliative Care: Protocol for a Systematic Mixed Studies Review.

BackgroundGiven the increasing number of people in need of palliative care services and the current health care professional workforce strain, providing equitable, quality palliative care has become a challenge. Telehealth could be an innovative approach to palliative care delivery, enabling patients to spend more time or even remain at home, if they wish, throughout the illness trajectory. However, no previous systematic mixed studies reviews have synthesized evidence on patients’ experiences of the advantages and challenges of telehealth for home-based palliative care.ObjectiveThe aim of this systematic mixed studies review is to critically appraise and synthesize findings from studies that investigated patients’ use of telehealth in home-based palliative care with a focus on the advantages and challenges experienced by the patients.MethodsThis article describes the protocol for a systematic mixed studies review with a convergent design. The reporting will be guided by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in eight databases for studies published from January 2010 to June 2020. The search will be updated in 2021. Pairs of authors will independently assess eligibility, extract data, and assess methodological quality. The data will then be analyzed using thematic synthesis.ResultsWe describe the rationale and design of a systematic mixed studies review. The database searches were performed on June 25, 2020. Assessment of eligibility and further steps have not yet been performed. Results are anticipated by August 2021.ConclusionsFollowing the ethos of patient-centered palliative care, this systematic mixed studies review could lead to recommendations for practice and policy, enabling the development and implementation of telehealth applications and services that align with patients’ preferences and needs at home.International Registered Report Identifier (IRRID)PRR1-10.2196/22626

Palliative Care in High and Low Resource Countries.

Palliative Care (PC) is defined by the World Health Organization (WHO) as a support provided by multiple disciplines in order to improve the quality of life of both patients and their caregivers, throughout the disease course, from diagnosis to end-of-life. PC aims to prevent and treat symptoms and side effects of the disease and its treatment. PC is well developed in most high- -income countries; however in most low-income settings, where approximately 80% of patients with cancer requiring PC care for advanced disease live, PC services are still uncommon. Health indicators monitoring global PC development are policy, education, use of medicines, service provision and professional activity. Globally, PC development may be categorized as Group 1 (no known hospice-PC activity), Group 2 (capacity-building activity), Groups 3a Isolated PC provided, 3b Generalized PC provided, 4a hospice-PC services at a stage of integration into regular service provision, and 4b hospice-PC services at a stage of advanced integration into regular service provision. Spirituality is an essential element of patient-centered PC. The use of Complementary and Traditional Medicine (CTM) in Middle Eastern countries is widespread. There are wide discrepancies in cancer care and PC in many regions of the world. The Individualized Care Planning and Coordination (ICPC) Model is designed to facilitate the advance care planning with continuity of all the measures like symptom control or emotional, social and spiritual care of both the patient and the family during the disease steps like relapse or end of life.

Inducing a sense of worthiness in patients: the basis of patient-centered palliative care for cancer patients in Iran

BackgroundPatient-centered care is one of the main components in providing palliative care for cancer patients. This issue has been the subject of numerous studies and practices in nursing for many years. Few studies, however, have explored the perception of nurses about patient-centered treatments. This study aimed at exploring the perception of care-providers about offering patient-centered care to cancer patients.MethodFor attaining that aim, 18 care-providers were purposefully selected for an interview which allowed the researchers to explore the enriched experiences of these participants about offering patient-centered palliative care to cancer patients. After transcribing the recorded data, analysis was carried out based on Graneheim and Lundman’s method of content analysis. The research was qualitative in nature and conducted in 2019 in Iran.ResultsFrom content analysis, 3 main categories; considering patient’s spirituality, maintaining patient’s dignity during care, and reducing patient’s suffering, were found. The essence of these categories reflect on the care-providers’ consideration and effort in “inducing a sense of worthiness” in patients by providing patient-centered care. These categories also reflect on the perspective of care-providers about nurse- patient relationship for providing high qualified palliative care.ConclusionFor providing patient-centered care inducing a sense of worthiness in patients, is the most fundamental component in providing palliative care to cancer patients. Therefore, by considering the structures and settings where the care is to be provided in the healthcare system, it is possible to direct the necessary educational, research, and administrative programs related to inducing a sense of worthiness in patients towards providing a more effective palliative care.

Healthcare professionals' perceptions of advance care planning in palliative care unit: a qualitative descriptive study.

To describe healthcare professionals' perceptions of advance care planning (ACP) in palliative care unit in hospital ward or outpatient clinic. Clinical guidelines recommend timely ACP as a central component of patient-centred palliative care. However, the ACP concept and terminology have been judged to be confusing, and practices are not established. Professionals' views are needed for ACP adoption and usage. Qualitative descriptive design. The study used purposive sampling. The data were collected through focus group interviews with registered nurses and practical nurses and individual or couple interviews with physicians and social workers. The data (n=33) were analysed by inductive content analysis. The study complied with the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Three main categories emerged: Information content of ACP, coordination of care activities through ACP, and support for patients' and family members' coping. The information content of ACP included assessment of need for patient care, preparing for changes in patient's state of health and proactive medication. Coordination of care activities through ACP contained ACP care planning, cooperation and work practices between healthcare professionals. Support for patients' and family members' coping included communication between patient, family members and professionals and promoting patient self-care. ACP is a useful and proactive tool for integrating patient-centred information, care and services as well as support for patients' and family members' coping. Palliative care activities can be coordinated through ACP in a multidisciplinary manner. ACP is significant and relevant for both professionals' work and patient care throughout the service system. Results highlight the importance of proactive, concrete and holistic ACP. ACP should be up to date to reflect patient's current wishes. Raising professional awareness and implementing ACP into work processes are essential. Results can be utilised in planning and implementing interprofessional in-service training.

Exploring Herbal Medicine Use during Palliative Cancer Care: The Integrative Physician as a Facilitator of Pharmacist-Patient-Oncologist Communication.

Oncology patients frequently use herbal and other forms of complementary medicine, often without the knowledge of oncologists, pharmacists, and other healthcare professionals responsible for their care. Oncology healthcare professionals may lack the knowledge needed to guide their patients on the safe and effective use of herbal medicinal products, a number of which have potentially harmful effects, which include direct toxicity and negative herb–drug interactions. The current review addresses the prevalence and expectations of oncology patients from herbal medicine, as well as evidence for the beneficial or harmful effects of this practice (potential and actual), especially when the herbal products are used in conjunction with anticancer agents. Models of integrative oncology care are described, in which open and effective communication among oncologists, pharmacists, and integrative physicians on the use of herbal medicine by their patients occurs. This collaboration provides patients with a nonjudgmental and multidisciplinary approach to integrative medicine, echoing their own health-belief models of care during conventional cancer treatments. The role of the integrative physician is to facilitate this process, working with oncologists and pharmacists in the fostering of patient-centered palliative care, while ensuring a safe and effective treatment environment. Case scenario: W. is a 56 year old female artist who was recently diagnosed with localized hormone receptor-positive breast cancer. Following lumpectomy and sentinel node dissection, she is scheduled to begin adjuvant chemotherapy with a regimen which will include adriamycin, cyclophosphamide, and paclitaxel (AC-T protocol). She is worried about developing peripheral neuropathy and its impact on her ability to paint, and she asks about a number of dietary supplements which she heard could prevent this from happening: omega-3, vitamin E, alpha-lipoic acid, and acetyl-l-carnithine. She is concerned, however, that the supplements may negatively interact with her chemotherapy regimen.

Patient-centered palliative care in pediatric cardiology: a cardiophenomenological approach

Despite the success of pediatric cardiology and cardiac surgery in the treatment of severe heart diseases in children, a significant increase in the average life expectancy and quality of life of patients, cardiovascular diseases remain common reasons leading to the need for palliative care. A number of psychological and ethical aspects in pediatric palliative care in cardiology are not sufficiently developed. Cardiac diseases requiring palliative care affect the physiological, psychological and social aspects of patients' lives, and require special attention. It is proposed to use the second-person methods in clinical communication based on the biopsychosocial approach of cardiophenomenology in order to provide a patient-centered environment in palliative care for children with severe heart diseases. Cardiophenomenology can provide non-paternalistic relationships in palliative care for pediatric patients with cardiovascular disease to improve health-related quality of life (HRQoL).

Enhancing Palliative Care With Mindful Touch: Impact of a Manual and Movement Therapy Training Program in an International Multidisciplinary Integrative Oncology Setting

ContextManual and movement therapies (MMTs) play a central role in the integrative oncology setting, significantly improving patients' quality of life (QOL). Despite research supporting the effectiveness and safety of these modalities, most oncology health care providers (HCPs) lack any MMT training. ObjectivesIn this study, we examine the impact of an MMT-based integrative oncology training program with the participation of an international and multidisciplinary group of oncology HCPs. The feasibility of implementing these skills in palliative cancer care is examined. MethodsA three-day evidence-based hands-on teaching program was designed to train oncology HCPs working in supportive cancer care MMT modalities from traditional Chinese and anthroposophic medicine. Prequalitative and postqualitative assessments of the trainees' narratives were analyzed using ATLAS.Ti software (Scientific Software Development GmbH, Berlin, Germany) for systematic coding. ResultsThe training program was attended by 30 participants from Israel (15), Germany (7), Italy (6), Turkey (1), and Cyprus (1). The group included 13 nurses, 10 physicians, 6 complementary/integrative HCPs, and 1 psycho-oncologist. The pretraining expectations that were met at post-training included gaining knowledge and practical QOL-oriented skills, which could be implemented in the palliative and supportive care setting. A significant change in the attitude of trainees to touch therapy was also identified, with respondents seeing MMTs promoting patient-centered palliative care, including nonverbal communication. ConclusionAn MMT training program for oncology HCPs for QOL-related indications is both feasible and likely to be implemented in palliative and supportive cancer care. Nonspecific effects of MMTs were also recognized for their ability to facilitate patient-centered care.

Long-Term Outcome of LVAD in Duchenne Population with End Stage Cardiomyopathy

The aim of this study was to report the effect of long-term use of VAD in patients affected by Duchenne Muscular Distrophy and end stage cardiomyopathy. We collected data of DMD patients with end-stage cardiomyopathy implanted with LVAD in our center (group 1) and the ones in regular follow-up not eligible for LVAD implantation (group 2). Each patient of group 1 underwent extensive pre-operative assessment, in-hospital treatment and was enrolled in a dedicated DMD HF (heart failure) clinic during the post-discharge period. Patients of group 2 were followed in a dedicated DMD HF clinic or as inpatient in case of need of inotropic support. During long-term follow-up all data were recorded including echocardiography, ECG examination, laboratory blood tests, and respiratory function. Survival was represented by Kaplan Meier analysis and compared by log rank. A total of 8 DMD patients (group 1) were implanted with LVAD and treated at our center during the period from 2011 until 2018 (mean age at implantation was 16.9 ± 2.9 years)¸ whilst 4 patients (group 2) were not eligible for LVAD implantation. At the time of the last follow-up, 4 out of 8 patients were alive and 2 out of 8 patients did not have post-operative complications. The principal causes of 3 deaths at the median follow-up of 22 months were sepsis, tracheal bleeding, and cerebral hemorrhage. After 1 year from implantation we noticed a significant decrease in heart rate (p=0.002), in LV volumes and diameters (LVEDD p=0.03, LVESD p=0.02, EDV p=0.01 and ESV p=0.02) and significant increase in ejection fraction (p=0.0036). However, relative wall thickness did not change over time, showing an eccentric remodeling pattern before and after LVADs. Analysis on short and long-term follow-up showed significant improvement of survival in DMD patients treated with LVAD compared to the group that was not implanted (log rank&lt0.001), with a 5-year increase in life expectancy. Our data showed that cardiac atrophy is persistent in Duchenne cardiomyopathy despite the improvement of EF due to a significant ventricular unloading coupled with chronic therapy. LVAD improved outcomes in patients with LVAD when compared to those without. An integration of outpatient DMD HF clinic and patient-centered palliative care will most likely increase the quality of life and delivery of care for this population.

Symptom dimensions in people affected by long-term neurological conditions: a factor analysis of a patient-centred palliative care outcome symptom scale

Long-term neurological conditions (LTNCs) often cause debilitating symptoms. Better understanding of symptom dimensions in LTNCs is needed to support health professionals and improve care. This can be achieved by exploring the factor structure of a standardised measure of symptoms in LTNC patients. The symptom subscale of the Integrated Palliative Outcome Scale for LTNCs (IPOS Neuro-S24) comprises 24 items measuring symptom severity. Descriptive statistics and psychometric properties of the scale were assessed, followed by differential item functioning (DIF), exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Data from N = 238 patients were analysed. The mean IPOS Neuro S-24 score was 27.0 (possible range 0–96) and floor effects were found for 21 items. The scale had good internal consistency (Cronbach’s alpha = 0.77). Weak evidence of DIF was found for nine items. All but one item (falls) loaded onto four factors with loadings > 0.3. The factors represented four clinically meaningful symptom dimensions: fatigue, motor symptoms, oral problems and non-motor symptoms. We identified a reliable four-factor structure of symptom experience in LTNC patients. The results suggest that symptom dimensions are common across LTNCs. The IPOS Neuro S-24 is an appropriate tool to measure symptoms in LTNC patients, which may improve care.