Cancer cachexia: A scoping review on non-pharmacological interventions.

Objective: Cancer cachexia occurs in 30%-80% of patients, increasing morbidity and mortality and impacting the health-related quality of life also for caregivers. Pharmacological interventions have been studied but have shown inconsistent effects on patients' lives in terms of relative outcomes and poor adherence to pharmacological treatment. We provide an overview of the evidence on non-pharmacological interventions for cancer cachexia. Methods: We conducted a scoping review based on Preferred Reporting Items for Systematic Reviews and Meta-Analyses-extension for scoping review (PRISMA-ScR). On September 21, 2022, plus an update on January 10, 2024, we searched MEDLINE, Embase, CINAHL, Cochrane, PsycINFO, and Scopus for 2012-2024. We excluded pharmacological interventions defined as "any substance, inorganic or organic, natural or synthetic, that can produce functional modifications, through a chemical, physicochemical or physical action." Results: The search retrieved 9308 articles, of which 17 were eligible. Non-pharmacological interventions included nutritional counseling, complementary therapies (acupuncture), rehabilitation, and psychoeducational/psychosocial support. The data showed small and heterogeneous samples and different disease localization and stages. Thirty-nine percent were multimodal interventions and aimed at patients, not families. The common primary outcomes were body weight and composition, biomarkers, quality of life, psychological suffering, and muscular strength. Only three studies focus on the patient-caregiver dyad. Conclusions: Interventions on cancer cachexia should be multimodal and multiprofessional, proposed early, and aimed at quality of life outcomes. The caregiver's involvement is essential. Nurses can play an active role in managing cancer cachexia. More well-designed studies are needed to understand the efficacy and contents of non-pharmacological interventions. Systematic review registration: The review protocol has been registered in the OSF registry (DOI: 10.17605/OSF.IO/H4A29).

Exacerbation Burden in COPD and Occurrence of Mortality in a Cohort of Italian Patients: Results of the Gulp Study.

Objective: To describe the burden of moderate to severe exacerbations and all-cause mortality; the secondary objectives were to analyze treatment patterns and changes over follow-up. Design: Observational, multicenter, retrospective, cohort study with a three year follow-up period. Setting: Ten Italian academic secondary- and tertiary-care centers. Participants: Patients with a confirmed diagnosis of COPD referring to the outpatient clinics of the participating centers were retrospectively recruited. Primary and Secondary Outcome Measures: Annualized frequency of moderate and severe exacerbations stratified by exacerbation history prior to study enrollment. Patients were classified according to airflow obstruction, GOLD risk categories, and divided in 4 groups: A = no exacerbations; B = 1 moderate exacerbation; C = 1 severe exacerbation; D = ≥2 moderate and/or severe exacerbations. Overall all-cause mortality stratified by age, COPD category, and COPD therapy. A logistic regression model assessed the association of clinical characteristics with mortality. Results: 1111 patients were included (73% males), of which 41.5% had a history of exacerbations. As expected, the proportion of patients experiencing ≥1 exacerbation during follow-up increased according to pre-defined study risk categories (B: 79%, C: 84%, D: 97.4%). Overall, by the end of follow-up, 45.5% of patients without a history of exacerbation experienced an exacerbation (31% of which severe), and 13% died. Deceased patients were significantly older, more obstructed and hyperinflated, and more frequently active smokers compared with survivors. Severe exacerbations were more frequent in patients that died (23.5%, vs 10.2%; p-value: 0.002). Chronic heart failure and ischemic heart disease were the only comorbidities associated with a higher odds ratio (OR) for death (OR: 2.2, p-value: 0.001; and OR: 1.9, p-value: 0.007). Treatment patterns were similar in patients that died and survivors. Conclusion: Patients with a low exacerbation risk are exposed to a significant future risk of moderate/severe exacerbations. Real life data confirm the strong association between mortality and cardiovascular comorbidities in COPD.

Experiential training course on spirituality for multidisciplinary palliative care teams in a hospital setting: a feasibility study.

BACKGROUND: There is widespread agreement about the importance of spiritual training programs (STPs) for healthcare professionals caring for cancer patients, and that reflecting on one's spirituality is the first step. Health professionals (HPs) working in hospitals must develop this dimension to guarantee the quality of life as well as spiritual and emotional support. In this paper, we propose a possible training format for hospital professionals and assess its implementation. METHODS: This is a phase 0-I study that follows the Medical Research Council (MRC) framework. The program was implemented for hospital palliative care specialists. The program included one theory lesson, three spiritual interactions, four pieces of reflective writing, and two individual follow-up sessions for each participant. The evaluation was performed quantitatively according to the MRC framework and qualitatively according to Moore's framework with data triangulation from interviews, reflective writings, and indicators. RESULTS: The program was implemented for palliative care physicians, nurses, psychologists, and bioethicists according to the plan, and the program components were highly appreciated by the participants. The results suggest the feasibility of a training course with some corrections, regarding both the components of the training and organizational issues. The qualitative analysis confirmed a shift in the meaning of the themes we identified. The trainees went from intrapersonal spirituality to interpersonal spirituality (engagement with the other person's spirituality, acknowledging their unique spiritual and cultural worldviews, beliefs, and practices), with colleagues, patients, and people close to them. The training had an impact on Moore's Level 3b. CONCLUSIONS: Spiritual training for hospital professionals working in palliative care is feasible. Having time dedicated to spirituality and the ongoing mentorship of spiritual care professionals were suggested as key elements. The next step is increasing awareness of spirituality from our hospital reality and creating a stable competent group (with nurses, chaplains, nuns, counselors, etc.) with the support of the management.

The meaning of dignity in care during the COVID-19 pandemic: a qualitative study in acute and intensive care.

BACKGROUND: The pandemic Era has forced palliative care professionals to use a dignity-in-care approach in different settings from the classic ones of palliative care: acute and intensive care. We explored the meanings of dignity for patients, their family members, and clinicians who have experienced COVID-19 in the acute and intensive care setting. METHODS: A qualitative, prospective study by means of semi-structured interviews with patients hospitalized for COVID-19, family members, and clinicians who care for them. FINDINGS: Between March 2021 and October 2021, we interviewed 16 participants: five physicians, three nurses, and eight patients. None of the patients interviewed consented for family members to participate: they considered it important to protect them from bringing the painful memory back to the period of their hospitalization. Several concepts and themes arose from the interviews: humanity, reciprocity, connectedness, and relationship, as confirmed by the literature. Interestingly, both healthcare professionals and patients expressed the value of informing and being informed about clinical conditions and uncertainties to protect dignity. CONCLUSIONS: Dignity should be enhanced by all healthcare professionals, not only those in palliative care or end-of-life but also in emergency departments.

A qualitative study with Italian patients exploring the spiritual dimension during a chronic disease.

BACKGROUND: Spirituality is a vast dimension influenced by cultural and personal differences. Little is known about the spirituality of patients suffering from a chronic disease in Italy from palliative care hospital settings. AIM: To investigate patients' perspectives about their spirituality during their illness. METHOD: The research question was: 'How does living with chronic disease inform/shape the spiritual dimension of patients?'. To address it, we conducted a qualitative interview study with thematic analysis. RESULTS: We enrolled 21 participants among patients suffering from rheumatic, haematologic, neurodegenerative and respiratory chronic diseases. Participants generally had great difficulty answering the questions researchers posed and often could not define 'spirituality'. We found different topics grouped under four main themes: definition of spirituality, internal dialogue, expression of spirituality in everyday life and take stock. Religion is not reported as an answer to spiritual suffering, even in a country that is felt religious-driven like Italy. DISCUSSION: Patients are generally not cognizant of this dimension even living with a chronic disease; consequently, they cannot express spiritual needs because they can't recognise them. Health professionals should identify this dimension and its characteristics to recognise potential spiritual suffering.

Doing palliative care research on hematologic cancer patients: A realist synthesis of literature and experts' opinion on what works, for whom and in what circumstances.

Background: Research in PC (Palliative Care) is frequently challenging for patient's frailty, study design, professional misconceptions, and so on. Little is known about specificity in PC research on Hematologic cancer patients, who have distinct characteristics that might influence the enrollment process. Aims: What works, how and for whom, in increasing enrollment in studies in PC on patients with hematologic malignancies? Methods: Realist review: a qualitative review whose goal is to identify and explain the interaction between Contexts, Mechanisms, and Outcomes (CMOs). The theory was informed by a narrative, theory-based literature research, including an initialsystematic research, and the addition of papers suggested by experts of the field. We also used 7 interviews with experts in PC about patients with hematologic malignancies research and our own experience from a PC pilot study on patients with hematologic malignancies to refine the initial theory. Results: In our initial theory we hypothesize that: - Access to palliative care could be beneficial to hematologic patients, even in early stages - Hematologists tend to under-use palliative care services in general, due to unpredictable disease trajectories and cultural barriers. - These factors may negatively impact the patients' enrollment in PC researchWe included secondary literature as narrative reviews, if they presented interesting propositions useful for our theoretical construction. 23 papers met our inclusion criteria.We also searched for relevant CMOs impacting referral in palliative care, and we selected a list of CMOs that could be relevant also in hematology. We accordingly theorized a group of interventions that could increase the enrollment in PC research and presented them using "social exchange theory" (SET) as a theoretical framework.Prominent researchers in PC in hematologic malignancies were interviewed on their opinion on our results, and additional CMOs. Conclusions: Before conducting research in PC on patients with hematologic malignancies, it's probably advisable to assess: - The perception of the different actors (physicians, nurses, other professionals involved), in particular the hematologists, in terms of pros and cons of referral to PC and enrollment in PC trials - The existing relationship between PC and the Hematology departmentAccordingly, it's possible to tailor different interventions on the various actors and choose a model of trial to increase the perception of benefits from PC and, consequently, enrollment.

Psycho-Educational and Rehabilitative Intervention to Manage Cancer Cachexia (PRICC) for Advanced Patients and Their Caregivers: Lessons Learned from a Single-Arm Feasibility Trial.

BACKGROUND: Key elements in cancer cachexia (CC) management are personalized and multimodal interventions, but it is hard for some patients to follow programs based on several components. We examined the feasibility of a bimodal intervention, including a psycho-educational component and exercises, to support patients and their caregivers in managing CC; Methods: Prospective mixed-methods pilot study explored feasibility data, changes in patient-reported outcomes, and performance outcomes over time in a convenient sample of 30 consecutive CC patients and their caregivers. RESULTS: Twenty-four dyads consented to participate. Twenty dyads received at least two psycho-educational sessions, so the psycho-educational component was feasible for 83.3% of the sample. Six dyads participated in at least fourteen out of twenty-seven rehabilitation sessions, so the exercise program was feasible for 25.0% of the sample. Six dyads showed compliance greater than 50% for both components of the bimodal intervention. CONCLUSIONS: While we did not meet our primary feasibility endpoint and had mixed acceptability, our experience provides insight into the challenges and lessons learned in implementing a primary palliative care intervention for CC. More robust studies are needed to help clinicians understand the best exercise program for CC patients, to be included in a multimodal intervention.

AI-based clinical decision-making systems in palliative medicine: ethical challenges.

BACKGROUND: Improving palliative care (PC) is demanding due to the increase in people with PC needs over the next few years. An early identification of PC needs is fundamental in the care approach: it provides effective patient-centred care and could improve outcomes such as patient quality of life, reduction of the overall length of hospitalisation, survival rate prolongation, the satisfaction of both the patients and caregivers and cost-effectiveness. METHODS: We reviewed literature with the objective of identifying and discussing the most important ethical challenges related to the implementation of AI-based data processing services in PC and advance care planning. RESULTS: AI-based mortality predictions can signal the need for patients to obtain access to personalised communication or palliative care consultation, but they should not be used as a unique parameter to activate early PC and initiate an ACP. A number of factors must be included in the ethical decision-making process related to initiation of ACP conversations, among which are autonomy and quality of life, the risk of worsening healthcare status, the commitment by caregivers, the patients' psychosocial and spiritual distress and their wishes to initiate EOL discussions CONCLUSIONS: Despite the integration of artificial intelligence (AI)-based services into routine healthcare practice could have a positive effect of promoting early activation of ACP by means of a timely identification of PC needs, from an ethical point of view, the provision of these automated techniques raises a number of critical issues that deserve further exploration.

Negotiating the Beginning of Care: A Grounded Theory Study of Health Services for Amyotrophic Lateral Sclerosis.

A range of professional figures are needed to preserve the quality of life of people with amyotrophic lateral sclerosis. This study aimed to explore the beginning of the care process as negotiated by people with amyotrophic lateral sclerosis, their caregivers, and healthcare professionals. We designed the study according to the constructivist Grounded Theory method, collecting data through open-ended, semi-structured interviews, employing theoretical sampling and constant comparison, and performing conceptual coding as data analysis. By naming the core category "off-beat interfacing", we were able to show how the demands of the professionals concerned did not correspond to the ability of people with ALS and their proxies to process information, deal with requests, and be at ease in making decisions at the beginning of the shared care pathway. Three categories were generated: (i) navigating different paths, (ii) offering and experiencing a standard, non-personalized pathway, and (iii) anticipating decisions. The network of services must be organized according to guidelines, but must also contemplate a patient-family-centered approach that permits more personalized assistance.

Dignity Therapy Training for the Healthcare Professionals: Lessons Learned From an Italian Experience.

Introduction: Dignity therapy (DT) is brief psychotherapy targeting psychological and existential suffering among patients with a life-limiting illness. Studies have been conducted on the use of DT by healthcare professionals. In Italy, the current legislation defines that any form of psychotherapy may be performed exclusively by psychotherapists. Consequently, this intervention is unlikely to be used by other healthcare professionals. Herein, we will describe a training on DT not as a psychotherapy intervention but as a narrative intervention for non-psychotherapists health care professionals. Finally, we will explore the potential enablers/barriers as experienced by palliative care physicians and nurses. Methods: The study was conducted in the Psycho-Oncology Unit within the Cancer Research Hospital of Reggio Emilia (Italy). It consisted of an exploratory qualitative case study. Data were collected employing observations and interview data and thematically analyzed. Results: The training was attended by six physicians and ten nurses and took place during two-afternoon sessions for 10 h. Two participants put their training into practice and administered DT under the supervision of a psychotherapist. Data analysis highlighted five overarching themes relating to the training experience and direct use of DT, namely, (i) time required, (ii) psychological skills, (iii) patient's disease awareness, (iv) patient's life history, and (v) distinguishing DT from Advance Care Planning. Conclusion: Palliative care professionals found DT to be a valuable non-pharmacological hospital-based intervention to address the person beyond the patient and his clinical conditions. In our experience, considering that in Italy, psychotherapy is an intervention that psychotherapists can only perform, it can help organize different training on DT for psychotherapists and other healthcare professionals.

Translation and Cultural Adaptation of the <i>Go Wish Game</i>: Thinking About Personal Values to Promote Advance Care Planning.

<b><i>Background:</i></b> The Go Wish Game (GWG) is a practical tool developed to ease advance care planning (ACP) conversations regarding end-of-life (EOL) issues. The game consists of a guide and 35 cards to help persons think about their personal values and priorities in the context of care and to discuss and share those concerns with families and health care professionals (HPs). <b><i>Objectives:</i></b> To promote ACP conversations in the Italian context, we developed an Italian version of the GWG by linguistic translation and cultural adaptation. <b><i>Design:</i></b> Cross-cultural adaptation process developed by Beaton et al. <b><i>Measurements:</i></b> We started with a back-and-forth translation to guarantee linguistic appropriateness. A prefinal Italian version was developed and then qualitatively evaluated by two focus groups (FGs) to assess content validity and cultural appropriateness. Participants' suggestions were discussed by the research groups and included in the final Italian version. <b><i>Data analysis:</i></b> The FGs' transcripts were analyzed by thematic analysis. <b><i>Sample:</i></b> One FG included HPs potentially involved in ACP, the second FG involved representative from local patient associations (RLPAs) with chronic, degenerative, and potentially terminal disease. Participants were purposefully selected. The two FGs involved eight HPs and five RLPAs, respectively. <b><i>Results:</i></b> Fewer explicit statements concerning EOL choices and a broader emphasis on the role of HPs in this discussion characterized the prefinal version. Our analysis identified three themes and five subthemes: (1) <i>improving translation</i>: linguistic redefinition and practical clarification; (2) <i>how to play the GWG</i>: needs and suggestions; and (3) <i>more than a game</i>. <b><i>Conclusion:</i></b> The Italian version developed in this study presents several cultural peculiarities. The rigorous translation and cultural adaptation process applied can enrich the existing literature by spreading a practical tool for initiating ACP in other languages and cultures. Further studies are needed to evaluate this tool's effectiveness in supporting ACP and training HPs to promote the ACP process.

Lesson Learned From Hospital Palliative Care Service in a Cancer Research Center in Italy: Results of 5 Years of Experience.

Background: International studies have documented that over a third of all hospital beds are occupied by patients with palliative care needs in their last year of life. Experiences of Palliative Care Services that take place prevalently or exclusively in hospital settings are very few in Italy. Objective: Describe clinical, educational and research activities performed by a hospital PCS and discussing opportunities and critical issues encountered in an Italian Cancer Center. Method: Retrospective data regarding adults with advanced stage diseases referred from January 2015 to December 2019. Results: Clinical activity - The PCS performed 2422 initial consultations with an average of 484 initial consultations per year. A majority of patients had advanced cancer, from 85% to 72%, with an average of 2583 total consultations per year and an average of 4.63 consultations per patient. The penetrance has increased over time from 6.3% to 15.75%. Educational and research activity - Since 2015, PCS has provided training to health professionals (HPs) of different departments of our hospital. Most of the educational projects for HPs were part of research projects, for example the communication training program, management of pain and end-of-life symptoms and the training program for PC-based skills. Conclusion: Our data suggests that a PCS able to provide palliative care to inpatients and outpatient and continuous training support to other hospital specialists can relatively quickly improve the level of its penetrance in hospital activities.

Consultations' demand for a hospital palliative care unit: how to increase appropriateness? Implementing and evaluating a multicomponent educational intervention aimed at increase palliative care complexity perception skill.

BACKGROUND: Planned, multidisciplinary teams' discussions of cases are common in cancer care, but their impact on patients' outcome is not always clear. Palliative care (PC) needs might emerge long before the last weeks of life. Many palliative care patients could be managed from the usual care staff, if appropriately trained; specialist palliative care should be provided to patients with more complex needs. Staff needs adequate training, so that only patients presenting a higher complexity are properly referred to the second level ("specialized") PC services. In the considered hospital setting, "tumour boards" (multidisciplinary discussions) refer often to a low number of patients. Overall complexity of patients' needs is hardly considered. METHODS: A mixed method pilot study with data triangulation of professionals' interviews and an independently structured evaluation of complexity of referred patients, before and after the intervention, using the PALCOM instrument. We trained four teams of professionals to deliver first-level palliation and to refer patients with complex needs detected in multidisciplinary discussions. A multicomponent, first level PC educational intervention, including information technology's adaptation, a training course, and bedside training was offered from the specialized PC Services, to all the HPs involved in multidisciplinary pancreas, lung, ovarian, and liver tumour boards. RESULTS: While the level of complexity of referred patients did not increase, trainees seemed to develop a better understanding of palliative care and a higher sensitivity to palliative needs. The number of referred patients increased, but patients' complexity did not. Qualitative data showed that professionals seemed to be more aware of the complexity of PC needs. A "meaning shift" was perceived, specifically on the referral process (e.g., "when" and "for what" referring to specialist PC) and on the teams' increased focus on patients' needs. The training, positively received, was adapted to trainees' needs and observations that led also to organizational modifications. CONCLUSIONS: Our multicomponent intervention positively impacted the number of referrals but not the patients' complexity (measured with the PALCOM instrument). Hospital staff does not easily recognize that patients may have PC needs significantly earlier than at the end of life.

Behavioral Patterns in Breaking Bad News Communication: An Ethnographic Study with Hematologists.

Hematologists adequately disclosing bad news is a critical point precluding patient-centered communication. Specific courses on communication for hematologists seem to be rare, as well as research exploring their communicative skills and patterns. We aim at describing the hematologists' behavior during difficult conversations to account for behavioral patterns in communication and provide new insights regarding teaching skills to communicate bad news. We employed a focused visual ethnography to answer the following research: "what are hematologists' behavioral patterns in communicating bad news to patients and families?" The collected data included (1) video recordings, (2) observational field notes, (3) interviews with hematologists. The analysis highlighted four patterns: (1) a technical-defensive pattern, (2) an authoritative pattern, (3) a relational-recursive pattern, and (4) a compassionate sharing pattern. Hematologists seem to have difficulty expressing compassionate caring and empathetic comprehension. Communication skills remain a challenge for hematologists. The study of behavioral patterns can lead to increasingly targeted training interventions for this specific learner population.

Self-Care as a Method to Cope With Suffering and Death: A Participatory Action-Research Aimed at Quality Improvement.

Introduction: Palliative care is an emotionally and spiritually high-demanding setting of care. The literature reports on the main issues in order to implement self-care, but there are no models for the organization of the training course. We described the structure of training on self-care and its effects for a Hospital Palliative Care Unit. Method: We used action-research training experience based mostly on qualitative data. Thematic analysis of data on open-ended questions, researcher's field notes, oral and written feedback from the trainer and the participants on training outcomes and satisfaction questionnaires were used. Results: Four major themes emerged: (1) "Professional role and personal feelings"; (2) "Inside and outside the team"; (3) "Do I listen to my emotions in the care relationship?"; (4) "Death: theirs vs. mine." According to participants' point of view and researchers' observations, the training course resulted in ameliorative adjustments of the program; improved skills in self-awareness of own's emotions and sharing of perceived emotional burden; practicing "compassionate presence" with patients; shared language to address previously uncharted aspects of coping; allowing for continuity of the skills learned; translation of the language learned into daily clinical practices through specific facilitation; a structured staff's support system for emotional experiences. Discussion: Self-care is an important enabler for the care of others. The core of our intervention was to encourage a meta-perspective in which the trainees developed greater perspicacity pertaining to their professional role in the working alliance and also recognizing the contribution of their personal emotions to impasse experienced with patients.

Do guidelines influence breathlessness management in advanced lung diseases? A multinational survey of respiratory medicine and palliative care physicians.

BACKGROUND: Respiratory medicine (RM) and palliative care (PC) physicians' management of chronic breathlessness in advanced chronic obstructive pulmonary disease (COPD), fibrotic interstitial lung disease (fILD) and lung cancer (LC), and the influence of practice guidelines was explored via an online survey. METHODS: A voluntary, online survey was distributed to RM and PC physicians via society newsletter mailing lists. RESULTS: 450 evaluable questionnaires (348 (77%) RM and 102 (23%) PC) were analysed. Significantly more PC physicians indicated routine use (often/always) of opioids across conditions (COPD: 92% vs. 39%, fILD: 83% vs. 36%, LC: 95% vs. 76%; all p < 0.001) and significantly more PC physicians indicated routine use of benzodiazepines for COPD (33% vs. 10%) and fILD (25% vs. 12%) (both p < 0.001). Significantly more RM physicians reported routine use of a breathlessness score (62% vs. 13%, p < 0.001) and prioritised exercise training/rehabilitation for COPD (49% vs. 7%) and fILD (30% vs. 18%) (both p < 0.001). Overall, 40% of all respondents reported reading non-cancer palliative care guidelines (either carefully or looked at them briefly). Respondents who reported reading these guidelines were more likely to: routinely use a breathlessness score (χ2 = 13.8; p < 0.001), use opioids (χ2 = 12.58, p < 0.001) and refer to pulmonary rehabilitation (χ2 = 6.41, p = 0.011) in COPD; use antidepressants (χ2 = 6.25; p = 0.044) and refer to PC (χ2 = 5.83; p = 0.016) in fILD; and use a handheld fan in COPD (χ2 = 8.75, p = 0.003), fILD (χ2 = 4.85, p = 0.028) and LC (χ2 = 5.63; p = 0.018). CONCLUSIONS: These findings suggest a need for improved dissemination and uptake of jointly developed breathlessness management guidelines in order to encourage appropriate use of existing, evidence-based therapies. The lack of opioid use by RM, and continued benzodiazepine use in PC, suggest that a wider range of acceptable therapies need to be developed and trialled.