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1.
BMC Palliat Care ; 23(1): 38, 2024 Feb 10.
Artigo em Inglês | MEDLINE | ID: mdl-38336683

RESUMO

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.


Assuntos
Terapias Espirituais , Espiritualidade , Humanos , Cuidados Paliativos/métodos , Estudos de Viabilidade , Qualidade de Vida/psicologia
2.
BMC Palliat Care ; 22(1): 192, 2023 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-38037061

RESUMO

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.


Assuntos
COVID-19 , Pandemias , Humanos , Respeito , Estudos Prospectivos , Cuidados Paliativos , Pesquisa Qualitativa
3.
BMC Pulm Med ; 22(1): 41, 2022 Jan 19.
Artigo em Inglês | MEDLINE | ID: mdl-35045847

RESUMO

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.


Assuntos
Dispneia , Conhecimentos, Atitudes e Prática em Saúde , Pneumopatias/complicações , Médicos/psicologia , Médicos/estatística & dados numéricos , Padrões de Prática Médica/estatística & dados numéricos , Adulto , Dispneia/complicações , Dispneia/psicologia , Dispneia/terapia , Europa (Continente) , Fidelidade a Diretrizes/estatística & dados numéricos , Guias como Assunto , Pesquisas sobre Atenção à Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Pneumologia
4.
BMC Palliat Care ; 21(1): 90, 2022 May 26.
Artigo em Inglês | MEDLINE | ID: mdl-35619110

RESUMO

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.


Assuntos
Cuidados Paliativos , Encaminhamento e Consulta , Hospitais , Humanos , Cuidados Paliativos/métodos , Percepção , Projetos Piloto
5.
Omega (Westport) ; 85(3): 753-771, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32903112

RESUMO

Little is known about health professionals first experiences of End-of-Life care in hospital. This study aims to understand the psycho-social process that occurs when hospital-based health professionals engage in caring for a dying patient for the first time. We conducted a Grounded Theory study, with 19 health professionals. Challenging professional boundaries is the core category which explains the overall process. The theoretical model we conceptualized evidenced three phases: 1) building a relationship between patient/family and professionals, 2) the disrupting impact and 3) the reaction phase. Our analysis highlighted the initial strong impact of this experience, which brought professionals to perceive emotional suffering and feelings of inadequacy. The new aspect our grounded theory revealed is that all the categories are pertinent to all the professionals involved, therefore they explain important aspects of interprofessional collaboration in End-of-Life care.


Assuntos
Assistência Terminal , Teoria Fundamentada , Pessoal de Saúde/psicologia , Hospitais , Humanos , Pesquisa Qualitativa , Assistência Terminal/psicologia
6.
BMC Palliat Care ; 20(1): 129, 2021 Aug 16.
Artigo em Inglês | MEDLINE | ID: mdl-34399737

RESUMO

BACKGROUND: Dignity is a basic principle of palliative care and is intrinsic in the daily practice of professionals assisting individuals with incurable diseases. Dignity Therapy (DT) is a short-term intervention aimed at improving the sense of purpose, meaning and self-worth and at reducing the existential distress of patients facing advanced illness. Few studies have examined how DT works in countries of non-Anglo Saxon culture and in different real-life settings. Moreover, most studies do not provide detailed information on how DT is conducted, limiting a reliable assessment of DT protocol application and of its evaluation procedure. The aim of this study was to assess the feasibility and acceptability of a nurse-led DT intervention in advanced cancer patients receiving palliative care. METHOD: This is a mixed-method study using before and after evaluation and semistructured interviews. Cancer patients referred to a hospital palliative care unit were recruited and provided with DT. The duration of sessions, and timeframes concerning each step of the study, were recorded, and descriptive statistical analyses were performed. The patients' dignity-related distress and feedback toward the intervention were assessed through the Patient Dignity Inventory and the Dignity Therapy Patient Feedback Questionnaire, respectively. Three nurses were interviewed on their experience in delivering the intervention, and the data were analyzed qualitatively. RESULTS: A total of 37/50 patients were enrolled (74.0%), of whom 28 (75.7%) completed the assessment. In 76.7% of cases, patients completed the intervention in the time limit scheduled in the study. No statistically significant reduction in the Patient Dignity Inventory scores was observed at the end of the intervention; most patients found DT to be helpful and satisfactory. Building opportunities for personal growth and providing holistic care emerged among the facilitators to DT implementation. Nurses also highlighted too great of a time commitment and a difficult collaboration with ward colleagues among the barriers. CONCLUSIONS: Our findings strongly support the acceptability, but only partially support the feasibility, of nurse-led DT in advanced cancer patients in a hospital setting. Further research is needed on how to transfer the potential benefits of DT into clinical practice. TRIAL REGISTRATION: Retrospectively registered on ClinicalTrial.gov NCT04738305 .


Assuntos
Neoplasias , Assistência Terminal , Estudos de Viabilidade , Hospitais , Humanos , Neoplasias/terapia , Cuidados Paliativos , Respeito
7.
BMC Palliat Care ; 19(1): 149, 2020 Sep 25.
Artigo em Inglês | MEDLINE | ID: mdl-32977796

RESUMO

BACKGROUND: Training in medical ethics aims to educate health care professionals in dealing with daily care ethical issues. To guarantee quality of life and spiritual and emotional support, palliative care professionals have to develop ethical and relational skills. We propose the implementation and evaluation of a specialized training programme in medical ethics dedicated to a hospital-based Palliative Care Unit. METHODS: This study is a mixed-method before-after evaluation with data triangulation. RESULTS: The results highlight that participants developed their ethical knowledge, and a deeper ethical awareness. They also felt more confident and motivated to widely apply ethical reflections and reasonings in their daily practice. CONCLUSION: The participants appreciated the innovative structure of the training, especially regarding the integration of the theoretical-interactive and practical parts. However, they recommended increasing the number of concrete occasions for ethical supervision and practical application of what they learned during the programme. The training programme also has some potential practical implications: the development of advanced ethical skills within a hospital-based PC team may improve the quality of life of the patients and their families. In addition, health care professionals with advanced ethical competencies are able to educate patients and their families towards more active participation in the decision-making process.


Assuntos
Educação Médica/métodos , Cuidados Paliativos/ética , Adulto , Currículo/normas , Currículo/tendências , Ética Médica , Feminino , Humanos , Entrevistas como Assunto/métodos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
8.
BMC Palliat Care ; 19(1): 53, 2020 Apr 22.
Artigo em Inglês | MEDLINE | ID: mdl-32321483

RESUMO

BACKGROUND: Patients with advanced haematological malignancies suffer from a very high symptom burden and psychological, spiritual, social and physical symptoms comparable with patients with metastatic non-haematological malignancy. Referral to palliative care services for these patients remains limited or often confined to the last days of life. We developed a palliative care intervention (PCI) integrated with standard haematological care. The aim of the study was focussed on exploring the feasibility of the intervention by patients, professionals and caregivers and on assessing its preliminary efficacy. METHODS/DESIGN: This is a mixed-methods phase 2 trial. The Specialist Palliative Care Team (SPCT) will follow each patient on a monthly basis in the outpatient clinic or will provide consultations during any hospital admission. SPCT and haematologists will discuss active patient issues to assure a team approach to the patient's care. This quantitative study is a monocentric parallel-group superiority trial with balanced randomisation comparing the experimental PCI plus haematological standard care versus haematological standard care alone. The primary endpoint will calculate on adherence to the planned PCI, measured as the percentage of patients randomised to the experimental arm who attend all the planned palliative care visits in the 24 weeks after randomisation. The qualitative study follows the methodological indications of concurrent nested design and was aimed at exploring the acceptability of the PCI from the point of view of patients, caregivers and physicians. DISCUSSION: In this trial, we will test the feasibility of an integrated palliative care approach starting when the haematologist decides to propose the last active treatment to the patient, according to his/her clinical judgement. We decided to test this criterion because it is able to intercept a wide range of patients'needs. The feasibility of this approach requires that we enrol at least 60 patients and that more than 50% of them be followed by the palliative care team for at least 24 weeks. The trial will include integrated qualitative data analysis; to give essential information on feasibility and acceptability. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03743480 (November 16, 2018).


Assuntos
Protocolos Clínicos , Neoplasias Hematológicas/terapia , Cuidados Paliativos/normas , Estudos de Viabilidade , Neoplasias Hematológicas/psicologia , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/tendências , Psicometria/instrumentação , Psicometria/métodos , Pesquisa Qualitativa , Inquéritos e Questionários , Resultado do Tratamento
9.
BMC Palliat Care ; 18(1): 88, 2019 Oct 26.
Artigo em Inglês | MEDLINE | ID: mdl-31655585

RESUMO

BACKGROUND: Despite the great advances in the concept of palliative care (PC) and its benefits, its application seems to be delayed, leaving unfulfilled the many needs of patients and family members. One way to overcome this difficulty could be to develop a new training programme by palliative care specialists to improve PC primary skills in healthcare professionals. The aim of this study was to evaluate the training's impact on trainees within a hospital setting using Kirkpatrick's and Moore's models. METHODS: We adopted a mixed-method evaluation with concurrent triangulation. The evaluation followed the first three steps of Kirkpatrick's and Moore's models and included a pre- and post-training evaluation through self-administered questionnaires and focus groups. We used the McNemar statistical test. RESULTS: The results highlighted the significant amount of knowledge acquired by the hospital professionals after training, in terms of increasing their knowledge of palliative care and in terms of the change in meaning that they attributed to phenomena related to chronicity and incurability, which they encounter daily in their professional practice. In both quantitative and qualitative research, the results, in synthesis, highlight: (i) the development of a new concept of palliative care, centred on the response to the holistic needs of people; (ii) that palliative care can also be extended to non-oncological patients in advanced illness stages (our training was directed to Geriatrics and Nephrology/Dialysis professionals); (iii) the empowerment and the increase in self-esteem that healthcare professionals gained, from learning about the logistical and structural organization of palliative care, to activate and implement PC; (iv) the need to share personal aspects of their professional life (this result emerges only in qualitative research); (v) the appreciation of cooperation and the joining of multiple competences towards a synergistic approach and enhanced outcomes. CONCLUSION: It is necessary to further develop rigorous research on training evaluation, at the most complex orders of the Kirkpatrick and Moore models, to measure primary PC skills in health care professionals. This will develop the effectiveness of the integration of I- and II-level palliative care competencies in hospitals and improve outcomes of patients' and families' quality of life.


Assuntos
Pessoal de Saúde/educação , Cuidados Paliativos/normas , Ensino/normas , Grupos Focais/métodos , Pessoal de Saúde/estatística & dados numéricos , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/estatística & dados numéricos , Avaliação de Programas e Projetos de Saúde/métodos , Avaliação de Programas e Projetos de Saúde/estatística & dados numéricos , Pesquisa Qualitativa , Inquéritos e Questionários , Ensino/estatística & dados numéricos
10.
BMC Palliat Care ; 18(1): 70, 2019 Aug 09.
Artigo em Inglês | MEDLINE | ID: mdl-31399094

RESUMO

BACKGROUND: Recognising and knowing how to manage ethical issues and moral dilemmas can be considered an ethical skill. In this study, ethics of care is used as a theoretical framework and as a regulatory criterion in the relationship among healthcare professionals, patients with palliative care needs and family members. This study is a part of a larger project aimed at developing and implementing a training programme on "ethical communication" addressed to professionals caring for patients with palliative care needs. The aim of this study was comprehending whether and how the ethics of care informs the way healthcare professionals make sense of and handle ethical issues in palliative care. METHODS: Qualitative study employing a theoretically driven thematic analysis performed on semi-structured interviews. The research was conducted in a clinical cancer centre in northern Italy. Eligible participants were physicians and nurses from eleven hospital wards who assisted patients with chronic advanced disease daily and had previously attended a 4-h training on palliative care held by the hospital Palliative Care Unit. RESULTS: The researchers identified five themes: morality is providing global care; morality is knowing how to have a relationship with patients; morality is recognizing moral principles; moral dimension and communication; and moral dilemmas are individual conflicts. CONCLUSIONS: Ethics of care seems to emerge as a theoretical framework that includes the belief systems of healthcare professionals, especially those assisting patients with palliative care needs; moreover, it allows the values of both the patients and professionals to come to light through the relationship of care. Ethics of care is also appropriate as a framework for ethical training.


Assuntos
Ética Médica , Obrigações Morais , Cuidados Paliativos/ética , Adulto , Idoso , Família/psicologia , Feminino , Humanos , Entrevistas como Assunto/métodos , Itália , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Médicos/psicologia , Pesquisa Qualitativa
11.
Palliat Med ; 32(1): 46-58, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-28952881

RESUMO

BACKGROUND: There is evidence that early integration of palliative care improves quality of life, lowers spending and helps clarify preferences and goals for advanced cancer patients. Little is known about the feasibility and acceptability of early integration. AIM: Assessing feasibility of early integration of palliative care, and exploring concerns perceived and problems encountered by patients, relatives and oncologists. DESIGN: A phase 2 mixed-methods study ( ClinicalTrials.Gov :NCT02078700). METHODS: Oncologists of two outpatient clinics offered a specialised palliative care intervention integrated with standard oncological care to all consecutive newly diagnosed metastatic respiratory/gastrointestinal cancer patients. We interviewed samples of patients, relatives and oncologists to explore strengths and weaknesses of the intervention. RESULTS: The intervention was proposed to 44/54 eligible patients (81.5%), 40 (90.1%) accepted, 38 (95.0%) attended the first palliative care visit. The intervention was completed for 32 patients (80.0%). It did not start for three (7.5%) and was interrupted for three patients who refused (7.5%). The Palliative Care Unit performed 274 visits in 38 patients (median per patient 4.5), and 24 family meetings with relatives of 16 patients. All patients and most relatives referred to the usefulness of the intervention, specifically for symptoms management, information and support to strategies for coping. Oncologists highlighted their difficulties in informing patients on palliative intervention, sharing information and coordinating patient's care with the palliative care team. CONCLUSION: Early integration of palliative care in oncological setting seems feasible and well accepted by patients, relatives and, to a lesser extent, oncologists. Some difficulties emerged concerning patient information and inter-professional communication.


Assuntos
Intervenção Médica Precoce/estatística & dados numéricos , Neoplasias Gastrointestinais/enfermagem , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração , Neoplasias Pulmonares/enfermagem , Cuidados Paliativos/organização & administração , Qualidade de Vida/psicologia , Assistência Terminal/organização & administração , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/estatística & dados numéricos , Inquéritos e Questionários , Assistência Terminal/estatística & dados numéricos
13.
Support Care Cancer ; 22(10): 2869-74, 2014 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-24771301

RESUMO

BACKGROUND: Missed appointments (MA) are frequent, but there are no studies on the effects of the first MA at supportive care outpatient clinics on clinical outcomes. METHODS: We determined the frequency of MA among all patients referred to our clinic from January-December 2011 and recorded the clinical and demographic data and outcomes of 218 MA patients and 217 consecutive patients who kept their first appointments (KA). RESULTS: Of 1,352 advanced-cancer patients referred to our clinic, 218 (16 %) had an MA. The MA patients' median age was 57 years (interquartile range, 49-67). The mean time between referral and appointment was 7.4 days (range, 0-71) for KA patients vs. 9.1 days (range, 0-89) for MA patients (P = 0.006). Reasons for missing included admission to the hospital (17/218 [8 %]), death (4/218 [2 %]), appointments with primary oncologists (37/218 [18 %]), other appointments (19/218 [9 %]), visits to the emergency room (ER) (9/218 [9 %]), and unknown (111/218 [54 %]). MA patients visited the ER more at 2 weeks (16/214 [7 %] vs. 5/217 [2 %], P = 0.010) and 4 weeks (17/205 [8 %] vs. 8/217 [4 %], P = 0.060). Median-survival duration for MA patients was 177 days (range, 127-215) vs. 253 days (range, 192-347) for KA patients (P = 0.013). Multivariate analysis showed that MAs were associated with longer time between referral and scheduled appointment (odds ratio [OR], 1.026/day, P = 0.030), referral from targeted therapy services (OR, 2.177, P = 0.004), living in Texas/Louisiana regions (OR, 2.345, P = 0.002), having an advanced directive (OR, 0.154, P < 0.0001), and being referred for symptom control (OR, 0.024, P = 0.0003). CONCLUSION: MA patients with advanced cancer have worse survival and increased ER utilization than KA patients. Patients at higher risk for MA should undergo more aggressive follow-up. More research is needed.


Assuntos
Assistência Ambulatorial/estatística & dados numéricos , Agendamento de Consultas , Neoplasias/terapia , Cuidados Paliativos/estatística & dados numéricos , Cooperação do Paciente/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fatores de Tempo
14.
Asia Pac J Oncol Nurs ; 11(5): 100438, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38774537

RESUMO

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).

15.
Artigo em Inglês | MEDLINE | ID: mdl-38444551

RESUMO

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.


Assuntos
Insuficiência Cardíaca , Doença Pulmonar Obstrutiva Crônica , Masculino , Humanos , Feminino , Estudos de Coortes , Estudos Retrospectivos , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/terapia , Itália/epidemiologia
16.
Front Oncol ; 13: 991791, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37051541

RESUMO

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.

17.
BMJ Support Palliat Care ; 13(2): 183-189, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-34257065

RESUMO

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.


Assuntos
Planejamento Antecipado de Cuidados , Medicina Paliativa , Humanos , Qualidade de Vida , Inteligência Artificial , Pesquisa Qualitativa , Cuidados Paliativos/métodos , Tomada de Decisão Clínica
18.
Chronic Illn ; : 17423953231178236, 2023 May 29.
Artigo em Inglês | MEDLINE | ID: mdl-37248628

RESUMO

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.

19.
Cancers (Basel) ; 15(7)2023 Mar 30.
Artigo em Inglês | MEDLINE | ID: mdl-37046724

RESUMO

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.

20.
CMAJ ; 189(23): E807, 2017 06 12.
Artigo em Inglês | MEDLINE | ID: mdl-28606980
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