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Special Issue "Recent Advances in Palliative and End-of-Life Care"

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Health Care Sciences & Services".

Deadline for manuscript submissions: 31 August 2022 | Viewed by 8872

Special Issue Editor

Prof. Dr. Eliza Lai-yi Wong
E-Mail Website
Guest Editor
The Jockey Club School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, China
Interests: patient-reported health outcome (patient experience, health-related quality of life); healthcare service delivery and quality; cervical cancer screening

Special Issue Information

Dear Colleagues,

With advanced medical knowledge and technology, life expectancy has been increasing rapidly in the past decades. However, this dramatic increase in life expectancy did not come with a proportionate increase in the quality of life, particularly during the end stage of life. This leads to increasing challenges in the care journey, including patient engagement, caregiver support, hospital readmission, advocacy of advance directive, palliative and hospice care development, and policy in the fragmented medical and social care. This puts increasing pressure on the health system and social system in most countries. I suggest that the research on patient-centered care urgently needs to be refocused to include the end of life in life-limiting conditions and life-threatening diseases, thereby increasing both patients’ quality of life, caregivers’ well-being, as well as the burden on the health system. Measuring the quality of care in the end of life is done through a ranking system with international measures to facilitate comparison between countries and over time. However, there are hot debates about the value of these rankings conceptually, culturally, politically and morally which may not be applicable in different contextual settings and health systems. Thus, the value should support the analysis of factors behind the performance in both quantitative and qualitative ways so as to provide the input for action towards the improvement of end of life care. 

This Special Issue of International Journal of Environmental Research and Public Health (IJERPH) focuses on the current state of knowledge to improve the quality of care in end of life and strengthen the development of palliative and hospice care. New research papers, reviews, case reports, commentaries, and expanded conference papers are welcome to this Issue. Papers dealing with new approaches to palliative and end-of-life care are also welcome.

Prof. Dr. Eliza Lai-yi Wong
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access semimonthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • palliative care
  • end of life
  • hospice
  • life-limiting condition
  • life-threatening disease
  • patient-centered care
  • patient experience and satisfaction
  • health-related quality of life
  • caregiver’s experience
  • stakeholder views
  • care journey
  • advance directive
  • healthcare service delivery
  • health system and policy

Published Papers (11 papers)

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Research

Jump to: Review

Article
Attitude towards Euthanasia among Medical Students: A Cross-Sectional Study in Hong Kong
Int. J. Environ. Res. Public Health 2022, 19(13), 7697; https://doi.org/10.3390/ijerph19137697 - 23 Jun 2022
Viewed by 232
Abstract
Background: With an increasing aging population and heavy medical burden, euthanasia has become a controversial topic in Hong Kong (HK) in recent years. Medical students are future medical professionals who may face novel and evolving ethical dilemmas. Hence, their views on euthanasia are [...] Read more.
Background: With an increasing aging population and heavy medical burden, euthanasia has become a controversial topic in Hong Kong (HK) in recent years. Medical students are future medical professionals who may face novel and evolving ethical dilemmas. Hence, their views on euthanasia are crucial. Objective: To examine the attitudes of medical students towards euthanasia in HK and identify the factors associated with their attitude towards euthanasia. Methods: A questionnaire-based cross-sectional study among medical students in HK was conducted. The online anonymous questionnaires were distributed to all six years of students studying medicine at the Chinese University of Hong Kong (CUHK) and the University of Hong Kong (HKU), who provide medical training in HK. Attitude towards Euthanasia (ATE), measured using a five-point Likert Scale, was used to assess medical students’ attitudes towards euthanasia. Results: overall, 228 valid responses were received in 2021. The mean score of ATE was 29 (SD10.9), in which 134 (58.8%) of respondents showed a negative attitude towards euthanasia. Negative association was found between Christian (p-value = 0.003) and Catholic (p-value = 0.032) and the ATE score. Meanwhile, positive association was found between male gender (p-value = 0.011) and witnessed withdrawing of nutritional support from patient(s) (p-value = 0.011) and the ATE score. Conclusions: It is necessary for the government and schools to place more emphasis on euthanasia in the school curriculum by integrating ethical discussions and clinical attachment. Full article
(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)
Article
Anticancer Treatment Goals and Prognostic Misperceptions among Advanced Cancer Outpatients
Int. J. Environ. Res. Public Health 2022, 19(10), 6272; https://doi.org/10.3390/ijerph19106272 - 21 May 2022
Viewed by 489
Abstract
(1) Background: In the context of cancer incurability, the communication processes involving clinicians and patients with cancer are frequently complex. (2) Methods: A cross-sectional study that investigated outpatients with advanced cancers and their oncologists. Both were interviewed immediately after a medical appointment in [...] Read more.
(1) Background: In the context of cancer incurability, the communication processes involving clinicians and patients with cancer are frequently complex. (2) Methods: A cross-sectional study that investigated outpatients with advanced cancers and their oncologists. Both were interviewed immediately after a medical appointment in which there was disease progression and/or clinical deterioration, and were asked about the patient’s chance of curability and the goals of the prescribed cancer treatment. The patients were asked whether they would like to receive information about prognosis and how they would like to receive it. The analyses of agreement on perceptions were performed using the Kappa’s test. (3) Results: the sample consisted of 90 patients and 28 oncologists. Seventy-eight (87.6%) patients answered that they wanted their oncologist to inform them about their prognosis; only 35.2% (n = 31) of them said they received such information at their present appointment. Regarding how they would prefer prognostic disclosure, 61.8% (n = 55) mentioned that the oncologist should consider ways to keep the patient’s hope up; 73% (n = 65) of the patients reported odds >50% of cure. The agreement between oncologists’ and their patients’ perceptions regarding the treatment goals and curability was slight (k = 0.024 and k = 0.017, respectively). (4) Conclusions: The perceptions of patients and their oncologists regarding the goals of treatment and their chances of cure were in disagreement. New approaches are needed to improve the communication process between oncologists and patients with advanced cancer. Full article
(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)
Article
Experiences of Older Adults with Frailty Not Completing an Advance Directive: A Qualitative Study of ACP Conversations
Int. J. Environ. Res. Public Health 2022, 19(9), 5358; https://doi.org/10.3390/ijerph19095358 - 28 Apr 2022
Viewed by 518
Abstract
Advance care planning (ACP) facilitates individuals to proactively make decisions on their end-of-life care when they are mentally competent. It is highly relevant to older adults with frailty because they are more vulnerable to cognitive impairment, disabilities, and death. Despite devoting effort to [...] Read more.
Advance care planning (ACP) facilitates individuals to proactively make decisions on their end-of-life care when they are mentally competent. It is highly relevant to older adults with frailty because they are more vulnerable to cognitive impairment, disabilities, and death. Despite devoting effort to promoting ACP among them, ACP and advance directive completion rates remain low. This study aims to explore the experiences among frail older adults who did not complete an advance directive after an ACP conversation. We conducted a thematic analysis of audiotaped nurse-facilitated ACP conversations with frail older adults and their family members. We purposively selected ACP conversations from 22 frail older adults in the intervention group from a randomized controlled trial in Hong Kong who had ACP conversation with a nurse, but did not complete an advance directive upon completing the intervention. Three themes were identified: “Refraining from discussing end-of-life care”, “Remaining in the here and now”, and “Relinquishing responsibility over end-of-life care decision-making”. Participation in ACP conversations among frail older adults and their family members might improve if current care plans are integrated so as to increase patients’ motivation and support are provided to family members in their role as surrogate decision-makers. Full article
(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)
Article
Caregivers’ Experience of End-of-Life Stage Elderly Patients: Longitudinal Qualitative Interview
Int. J. Environ. Res. Public Health 2022, 19(4), 2101; https://doi.org/10.3390/ijerph19042101 - 13 Feb 2022
Viewed by 703
Abstract
Objectives: This study seeks to provide an understanding of the changing experiences in caregivers of end-of-life patients in Hong Kong through exploring their caregiving journey. Methods: Using longitudinal individual qualitative interviews, a total of 14 caregivers of community-dwelling elderly patients receiving end-of-life care [...] Read more.
Objectives: This study seeks to provide an understanding of the changing experiences in caregivers of end-of-life patients in Hong Kong through exploring their caregiving journey. Methods: Using longitudinal individual qualitative interviews, a total of 14 caregivers of community-dwelling elderly patients receiving end-of-life care were recruited between 2015 and 2016. A series of in-depth interviews and observations were conducted in 14 cases during the end-of-life journey. Results: A thematic analysis revealed four sequential experiential stages, abbreviated as “CAPE” that caregivers confronted: Stage 1 Certainty, (1a) lack of certainty regarding the progression of decline at the end-stage of life (1b) feelings of despair as patients’ function decreased; Stage 2 Ambivalence, (2a) feelings of ambivalence after decisions were made regarding EOL care, (2b) struggle over care responsibility within families; Stage 3 Perturbed, (3a) varied in quality of EOL care, (3b) depressed mood arisen from frequent exposure to the suffering of elderly patients; and Stage 4 Expectation, (4a) losing the caregiving role as patients showing signs of imminent death. Conclusions: These findings increase our understanding of caregivers’ in-depth experience over time that arise within the structural context of end-of-life care. Our data highlights the need for end of life related knowledge and information, provision of a caring atmosphere and communication, and professional-led detachment in creating caregiving-friendly service in healthcare system, thus as to provide support and alleviate stress for caregivers with their critical responsibility and role during the course of end-of-life care. Full article
(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)
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Article
Translation, Cultural Adaptation, and Content Validation of the Palliative Care Self-Efficacy Scale for Use in the Swedish Context
Int. J. Environ. Res. Public Health 2022, 19(3), 1143; https://doi.org/10.3390/ijerph19031143 - 20 Jan 2022
Viewed by 673
Abstract
The Palliative Care Self-Efficacy Scale (PCSE) is a valid instrument in English for assessing healthcare professionals’ self-efficacy in providing palliative care; it has not been translated into Swedish. The aim of this study was to describe the translation, cultural adaptation, and content-validation process [...] Read more.
The Palliative Care Self-Efficacy Scale (PCSE) is a valid instrument in English for assessing healthcare professionals’ self-efficacy in providing palliative care; it has not been translated into Swedish. The aim of this study was to describe the translation, cultural adaptation, and content-validation process of the PCSE scale. In this study, forward and backward translations, pretesting including an expert panel (n = 7), and cognitive interviewing with possible healthcare professionals (physicians, nurses, and assistant nurses) (n = 10) were performed. Experts in palliative care rated items on a Likert scale based on their understandability, clarity, sensitivity, and relevance. The item-level content validity index (I-CVI) and modified kappa statistics were calculated. Healthcare professionals were interviewed using the think-aloud method. The translation and validation process resulted in the final version of the PCSE scale. The average I-CVI for sensitivity was evaluated and approved. Most of the items were approved for clarity, some items lacked understandability, but a majority of the items were considered relevant. The healthcare professionals agreed that the items in the questionnaire evoked emotions, but were relevant for healthcare professionals. Thus, the Palliative Care Self-Efficacy scale is relevant for assessing healthcare professionals’ self-efficacy in palliative care in a Swedish care context. Further research using psychometric tests is required. Full article
(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)
Article
Key Components for the Delivery of Palliative and End-of-Life Care in Care Homes in Hong Kong: A Modified Delphi Study
Int. J. Environ. Res. Public Health 2022, 19(2), 667; https://doi.org/10.3390/ijerph19020667 - 07 Jan 2022
Cited by 1 | Viewed by 536
Abstract
Integrating the palliative care approach into care home service to address the complex care needs of older adults with frailty or advanced diseases has been increasingly recognized. However, such a service is underdeveloped in Hong Kong owing to socio-cultural and legal concerns. We [...] Read more.
Integrating the palliative care approach into care home service to address the complex care needs of older adults with frailty or advanced diseases has been increasingly recognized. However, such a service is underdeveloped in Hong Kong owing to socio-cultural and legal concerns. We adopted a modified Delphi study design to identify the key components for the delivery of palliative and end-of-life care in care home settings for the local context. It was an iterative staged method to assimilate views of experts in aged care, palliative care, and care home management. A multidisciplinary expert panel of 18 members consented to participate in the study. They rated their level of agreement with 61 candidate statements identified through a scoping review in two rounds of anonymous surveys. The steering group revised the statements in light of the survey findings. Eventually, the finalized list included 28 key statements concerning structure and process of care in seven domains, namely policy and infrastructure, education, assessment, symptom management, communication, care for dying patients, and family support. The findings of this study underscored concerns regarding the feasibility of statements devised at different levels of palliative care development. This list would be instrumental for regions where the development of palliative and end-of-life care services in care home setting is at an initial stage. Full article
(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)
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Article
What Does Economic Evaluation Mean in the Context of Children at the End of Their Life?
Int. J. Environ. Res. Public Health 2021, 18(21), 11562; https://doi.org/10.3390/ijerph182111562 - 03 Nov 2021
Cited by 1 | Viewed by 1085
Abstract
The ‘conventional framework’ of economic evaluation, the comparative public sector healthcare costs and quality adjusted life year (QALY) of two or more interventions, has become synonymous with commissioning decisions in many countries. However, while useful as a framework in guiding value-based decisions, it [...] Read more.
The ‘conventional framework’ of economic evaluation, the comparative public sector healthcare costs and quality adjusted life year (QALY) of two or more interventions, has become synonymous with commissioning decisions in many countries. However, while useful as a framework in guiding value-based decisions, it has limited relevance in areas such as end of life care in children and young people, where the costs fall across multiple stakeholders and QALY gains are not the primary outcome. This paper makes the case that the restricted relevance of the ‘conventional framework’ has contributed to the inconsistent and varied provision of care in this setting, and to the knock-on detrimental impact on children nearing the end of their lives as well as their families. We explore the challenges faced by those seeking to conduct economic evaluations in this setting alongside some potential solutions. We conclude that there is no magic bullet approach that will amalgamate the ‘conventional framework’ with the requirements of a meaningful economic evaluation in this setting. However, this does not imply a lack of need for the summation of the costs and outcomes of care able to inform decision makers, and that methods such as impact inventory analysis may facilitate increased flexibility in economic evaluations. Full article
(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)
Article
Exploring the Impact of Different Types of Do-Not-Resuscitate Consent on End-of-Life Treatments among Patients with Advanced Kidney Disease: An Observational Study
Int. J. Environ. Res. Public Health 2021, 18(15), 8194; https://doi.org/10.3390/ijerph18158194 - 02 Aug 2021
Viewed by 951
Abstract
Background: Patients with advanced kidney disease have a symptomatic and psychological burden which warrant renal supportive care or palliative care. However, the impact of do-not-resuscitate consent type (signed by patients or surrogates) on end-of-life treatments in these patients remains unclear. Objective: [...] Read more.
Background: Patients with advanced kidney disease have a symptomatic and psychological burden which warrant renal supportive care or palliative care. However, the impact of do-not-resuscitate consent type (signed by patients or surrogates) on end-of-life treatments in these patients remains unclear. Objective: We aim to identify influential factors correlated with different do-not-resuscitate consent types in patients with advanced kidney disease and the impact of do-not-resuscitate consent types on various life-prolonging treatments. Methods: This was a retrospective observational study. We included patients aged 20 years and over, diagnosed with advanced kidney disease and receiving palliative and hospice care consultation services between January 2014 and December 2018 in a tertiary teaching hospital in Taiwan. We reviewed medical records and used logistic regression to identify factors associated with do-not-resuscitate consent types and end-of-life treatments. Results: A total of 275 patients were included, in which 21% signed their do-not-resuscitate consents. A total of 233 patients were followed until death, and 32% of the decedents continued hemodialysis, 75% underwent nasogastric (NG) tube placement, and 70% took antibiotics in their final seven days of life. Do-not-resuscitate consents signed by patients were associated with reduced life-prolonging treatments including feeding tube placement and antibiotic use in the last seven days (odd ratio and 95% confidence interval were 0.16, 0.07–0.34 and 0.33, 0.16–0.69, respectively) compared to do-not-resuscitate consents signed by surrogates. Conclusions: Do-not-resuscitate consent signed by patients and not by surrogates may reflect better patients’ autonomy and reduced life-prolonging treatments in the final seven days of patients with advanced kidney disease. Full article
(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)
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Article
Assessing Medical Students’ Confidence towards Provision of Palliative Care: A Cross-Sectional Study
Int. J. Environ. Res. Public Health 2021, 18(15), 8071; https://doi.org/10.3390/ijerph18158071 - 30 Jul 2021
Cited by 1 | Viewed by 1160
Abstract
Under a surging demand for palliative care, medical students generally still show a lack of confidence in the provision in abroad studies. This cross-sectional study aims to investigate the confidence and its association with knowledge, attitude and exposure on providing palliative care among [...] Read more.
Under a surging demand for palliative care, medical students generally still show a lack of confidence in the provision in abroad studies. This cross-sectional study aims to investigate the confidence and its association with knowledge, attitude and exposure on providing palliative care among medical undergraduates with a self-administered questionnaire to improve the international phenomenon. Full-time local medical undergraduates were recruited to obtain information regarding the demographics, confidence, knowledge, attitude and exposure on palliative care; the information was collected from July 2020 to October 2020. Questions on confidence (10-items), knowledge (20-items), attitude (10-items) and exposure were referenced from validated indexes and designed from literature review. Confidence level was categorized into “Confident” and “Non-confident” as suggested by studies to facilitate data analysis and comparison. Of the 303 participants, 59.4% were “Non-confident” (95% C.I.: 53.8% to 65.0%) in providing palliative care on average. Among medical students, knowledge (p = 0.010) and attitude (p = 0.003) are significantly positively associated with the confidence to provide palliative care, while exposure to death of family/friends (p = 0.024) is negatively associated. This study begins an investigation on the research area in Hong Kong primarily. The confidence of local medical students should be enhanced to provide palliative care in their future. It thus highlights the importance of the medical curriculum and provides insights to remove barriers responsively to improve the overall confidence and the quality of palliative care. Full article
(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)
Article
The Role Complexities in Advance Care Planning for End-of-Life Care—Nursing Students’ Perception of the Nursing Profession
Int. J. Environ. Res. Public Health 2021, 18(12), 6574; https://doi.org/10.3390/ijerph18126574 - 18 Jun 2021
Cited by 1 | Viewed by 1011
Abstract
Nurses’ perceptions of being responsible for advance care planning (ACP) vary greatly across different studies. It could, however, affect their involvement in advance care planning and patients’ quality of death. Recent studies on this topic have mostly focused on advance directives but not [...] Read more.
Nurses’ perceptions of being responsible for advance care planning (ACP) vary greatly across different studies. It could, however, affect their involvement in advance care planning and patients’ quality of death. Recent studies on this topic have mostly focused on advance directives but not ACP and nurses in the ward setting. This study aimed to assess the perception of Hong Kong nursing undergraduates of the nurse’s role in advance care planning and examine its associations with knowledge, attitude, and experience. A cross-sectional 57-item survey was delivered to nursing undergraduates between June and August 2020. The chi-squared test or Fisher’s exact test were used for univariate analysis. The multiple logistic regression model was used for multivariate analysis. A total of 469 participants were assessed for eligibility; 242 of them were included in the data analysis, with a response rate of 97.6%. The majority of respondents—77.3% (95% CI: 72.0–82.6%)—perceived having a role in ACP, but large discrepancies were found between their perception of their role regarding different aspects of ACP. Participants who had a better knowledge status (p = 0.029) or supported the use of ACP (p < 0.001) were more likely to have a positive perception of their role in ACP. A negative correlation was found between the experience of life threat and positive role perception (p < 0.001). Through strengthening training, the role clarity of nursing undergraduates could be achieved, maximizing their cooperation with and implementation of ACP in their future nursing career. The enhancement of end-of-life education could also be undertaken to fill nursing undergraduates’ knowledge gap in this area and change their attitudes. Full article
(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)

Review

Jump to: Research

Review
A Systematic Review and Bayesian Network Meta-Analysis Investigating the Effectiveness of Psychological Short-Term Interventions in Inpatient Palliative Care Settings
Int. J. Environ. Res. Public Health 2022, 19(13), 7711; https://doi.org/10.3390/ijerph19137711 - 23 Jun 2022
Viewed by 303
Abstract
This paper reviews and summarises the evidence of short-term psychosocial interventions (up to 12 sessions delivered within less than eight weeks) on anxiety, depression, and emotional distress in palliative patients in inpatient settings. We screened publications from the following five databases, Embase, PubMed, [...] Read more.
This paper reviews and summarises the evidence of short-term psychosocial interventions (up to 12 sessions delivered within less than eight weeks) on anxiety, depression, and emotional distress in palliative patients in inpatient settings. We screened publications from the following five databases, Embase, PubMed, PsycINFO, Web of Science, and CINAHL, from their inception to 10 September 2021. The eligible studies included controls receiving standard palliative care, actively treated controls, and wait-list controls. Nine studies met the eligibility criteria and reported the effects of five psychosocial interventions in a total of N = 543 patients. We followed PRISMA-guidelines for outcome reporting and the Cochrane Risk of Bias Assessment Tool for assessing study quality. This paper used the network meta-analysis to compare multiple treatments by providing greater statistical power and the cross-validation of observed treatment effects, using the R package BUGSnet. Compared to control groups, the following psychosocial interventions in inpatient settings showed to be superior: life review interventions were the best ranked treatment for improving anxiety and distress, while the top ranked treatment for reducing depression was outlook intervention. The short-term psychosocial interventions investigated in this meta-analysis, especially life review intervention, are feasible and can potentially improve anxiety, depression, and distress in palliative inpatients and should therefore be offered in inpatient settings. Full article
(This article belongs to the Special Issue Recent Advances in Palliative and End-of-Life Care)
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Planned Papers

The below list represents only planned manuscripts. Some of these manuscripts have not been received by the Editorial Office yet. Papers submitted to MDPI journals are subject to peer-review.

Title: Death and Dying, End-of-Life Care Plans and Preferences: Conversation between Aging Parents and Adult Children in Singapore
Authors: Hyo Jung Lee, et al.
Affiliations: School of Social Sciences, Nanyang Technological University, Singapore; et al.

Title: Nudging in the Palliative Care Setting: “An Attractive but Misleading Concept”. A Qualitative Study
Authors: De Panfilis L., Artioli G., Peruselli C., Perin M., Bruera E., Brazil K. and Tanzi S.
Affiliations: Bioethics Unit, Azienda Unità Sanitaria Locale-IRCCS di Reggio Emilia, 42123 Reggio Emilia, Italy; et al.

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