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1.
Brain Cogn ; 176: 106141, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38458027

RESUMO

Elderly patients who undergo major surgery (not-neurosurgical) under general anaesthesia frequently complain about cognitive difficulties, especially during the first weeks after surgical "trauma". Although recovery usually occurs within a month, about one out of four patients develops full-blown postoperative Neurocognitive disorders (NCD) which compromise quality of life or daily autonomy. Mild/Major NCD affect approximately 10% of patients from three months to one year after major surgery. Neuroinflammation has emerged to have a critical role in the postoperative NCDs pathogenesis, through microglial activation and the release of pro-inflammatory cytokines which increase blood-brain-barrier permeability, enhance movement of leukocytes into the central nervous system (CNS) and favour the neuronal damage. Moreover, pre-existing Mild Cognitive Impairment, alcohol or drugs consumption, depression and other factors, together with several intraoperative and post-operative sequelae, can exacerbate the severity and duration of NCDs. In this context it is crucial rely on current progresses in serum and CSF biomarker analysis to frame neuroinflammation levels, along with establishing standard protocol for neuropsychological assessment (with specific set of tools) and to apply cognitive training or neuromodulation techniques to reduce the incidence of postoperative NCDs when required. It is recommended to identify those patients who would need such preventive intervention early, by including them in pre-operative and post-operative comprehensive evaluation and prevent the development of a full-blown dementia after surgery. This contribution reports all the recent progresses in the NCDs diagnostic classification, pathogenesis discoveries and possible treatments, with the aim to systematize current evidences and provide guidelines for multidisciplinary care.


Assuntos
Disfunção Cognitiva , Doenças Neuroinflamatórias , Humanos , Idoso , Qualidade de Vida , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/terapia , Biomarcadores , Cognição
2.
Neurol Sci ; 2024 Jun 04.
Artigo em Inglês | MEDLINE | ID: mdl-38833097

RESUMO

The objective of this study was to encompass current knowledge about pathophysiological mechanisms of those specific hand postures or deformities caused by central nervous system disorders. In the era of high-resolution neuroimaging and molecular biology, clinicians are progressively losing confidence with neurological examination. Careful hand observation is of key importance in order to differentiate neurological from non-neurological conditions, central from peripheral aetiologies, and organic from functional disorders. Localizing the potential anatomical site is essential to properly conduct subsequent exams. We provided a practical guide for clinicians to recognize hand patterns caused by central nervous system disorders, avoiding mimicking conditions, thus optimizing and prompting the diagnostic pathway.

3.
BMC Pregnancy Childbirth ; 23(1): 38, 2023 Jan 18.
Artigo em Inglês | MEDLINE | ID: mdl-36653738

RESUMO

BACKGROUND: Prenatal information may be obtained through invasive diagnostic procedures and non-invasive screening procedures. Several psychological factors are involved in the decision to undergo a non-invasive prenatal testing (NIPT) but little is known about the decision-making strategies involved in choosing a specific level of in-depth NIPT, considering the increased availability and complexity of NIPT options. The main aim of this work is to assess the impact of psychological factors (anxiety about pregnancy, perception of risk in pregnancy, intolerance to uncertainty), and COVID-19 pandemic on the type of NIPT chosen, in terms of the number of conditions that are tested. METHODS: A self-administered survey evaluated the decision-making process about NIPT. The final sample comprised 191 women (Mage = 35.53; SD = 4.79) who underwent a NIPT from one private Italian genetic company. Based on the test date, the sample of women was divided between "NIPT before COVID-19" and "NIPT during COVID-19". RESULTS: Almost all of the participants reported being aware of the existence of different types of NIPT and more than half reported having been informed by their gynecologist. Results showed no significant association between the period in which women underwent NIPT (before COVID-19 or during COVID-19) and the preferences for more expanded screening panel. Furthermore, regarding psychological variables, results showed a significant difference between perceived risk for the fetus based on the NIPT type groups, revealing that pregnant women who underwent the more expanded panel had a significantly higher level of perceived risk for the fetus than that reported by pregnant women who underwent the basic one. There was no statistically significant difference between the other psychological variables and NIPT type. CONCLUSIONS: Our findings indicate the paramount role of gynecologist and other health care providers, such as geneticists and psychologists, is to support decision-making process in NIPT, in order to overcome people's deficits in genetic knowledge, promote awareness about their preferences, and control anxiety related to the unborn child. Decision-support strategies are critical during the onset of prenatal care, according to the advances in prenatal genomics and to parent's needs.


Assuntos
COVID-19 , Pandemias , Gravidez , Feminino , Humanos , Adulto , COVID-19/diagnóstico , Diagnóstico Pré-Natal/métodos , Testes Genéticos/métodos , Gestantes
4.
Eur Rev Appl Psychol ; 72(6): 100671, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-36213872

RESUMO

Introduction: The COVID-19 outbreak forced Italian citizens into a generalized quarantine from March to May 2020. The quarantine is a successful measure to reduce the virus's spread through physical and social distancing, but it can also have negative psychological consequences on the population. People experience high levels of worry and anxiety and have to cope with the consequences of the health emergency. The aim of this study was to preliminarily assess the causal relations among coping, worry and state anxiety at the time of COVID-19 first wave, and the mediation role of worry between coping and state anxiety. Methods: During March 2020, 1273 Italian citizens completed an ad hoc online survey composed of sociodemographic and preoccupation-related questions, and standardized self-report questionnaire (Brief COPE, Penn State Worry Questionnaire and State-Trait Anxiety Inventory-State form). Three separate mediation models were performed. Results: The relationship between coping strategies (i.e.: problem-focused coping, emotion-focused coping and dysfunctional coping) and state anxiety resulted to be mediated by worry. Dysfunctional and problem-focused coping had a negative effect on anxiety scores and this effect was amplified by high levels of worry. Emotion-focused coping reduced state anxiety scores through its effect on reducing the levels of worry, which in turn was related to a reduction in anxiety. Conclusion: The present study offers first evidence for the mediation role of worry in the relation between coping and anxiety during quarantine caused by COVID-19 pandemic. It supports the clinical importance of investigating people's coping strategies along with the levels of (cognitive) worry and their long-term effects on the psychological well-being during the outbreak, in order to deliver adequate personalized interventions. Psychological support should enhance emotion-focused coping strategies that have a protective effect on both worry and anxiety.


Introduction: L'épidémie de COVID-19 a contraint les citoyens italiens à une quarantaine généralisée de mars à mai 2020. La quarantaine est une mesure efficace pour réduire la propagation du virus grâce à l'éloignement physique et social, mais elle peut également avoir des conséquences psychologiques négatives sur la population. Les gens éprouvent des niveaux élevés d'inquiétude et d'anxiété et doivent faire face aux conséquences de l'urgence sanitaire. Le but de cette étude a été d'évaluer de manière préliminaire les relations causales entre l'adaptation, l'inquiétude et l'anxiété d'état au moment de la première vague de COVID-19, et le rôle médiateur de l'inquiétude entre l'adaptation et l'anxiété d'état. Méthodes: Au cours du mois de mars 2020, 1273 citoyens italiens ont rempli une enquête ad hoc en ligne composée de questions concernant des données socio-démographiques et liées aux préoccupations, et d'un questionnaire d'auto-évaluation standardisé (Brief COPE, Penn State Worry Questionnaire et State-Trait Anxiety Inventory, l'échelle d'anxiété ­ État). Trois modèles de médiation distincts ont été réalisés. Résultats: La relation entre les stratégies d'adaptation (c'est-à-dire l'adaptation centrée sur le problème, l'adaptation centrée sur les émotions et l'adaptation dysfonctionnelle) et l'anxiété liée à l'état a été influencée par l'inquiétude. L'adaptation dysfonctionnelle et axée sur les problèmes a eu un effet négatif sur les scores d'anxiété et cet effet a été amplifié par des niveaux élevés d'inquiétude. L'adaptation axée sur les émotions a réduit les scores d'anxiété d'état par son effet sur la réduction des niveaux d'inquiétude, qui à son tour était liée à une réduction de l'anxiété. Conclusion: La présente étude offre une première preuve du rôle médiateur de l'inquiétude dans la relation entre l'adaptation et l'anxiété pendant la quarantaine causée par la pandémie de COVID-19. Elle soutient l'importance clinique d'étudier les stratégies d'adaptation des personnes ainsi que les niveaux d'inquiétude (cognitive) et leurs effets à long terme sur le bien-être psychologique pendant l'épidémie, afin de fournir des interventions personnalisées adéquates. Le soutien psychologique devrait améliorer les stratégies d'adaptation axées sur les émotions qui ont un effet protecteur sur l'inquiétude et l'anxiété.

5.
BMC Public Health ; 21(1): 1158, 2021 06 16.
Artigo em Inglês | MEDLINE | ID: mdl-34134663

RESUMO

BACKGROUND: During the COVID-19 pandemic, between March and May 2020, in Italy, people were asked to shelter in place and most had to put their life on hold, while news of the spread of the virus constantly were broadcasted. The change in habits and the potential exposure to a dangerous virus can be categorized as a catastrophic event, which are usually traumatic and therefore have psychological consequences for the people involved. OBJECTIVE: Assuming the COVID-19 pandemic as a possible traumatic event, this study aims to explore the contingent behavioural and psychological impact of COVID-19 spread and related lockdown on the Italian general population, through measuring anxiety and post-traumatic stress symptoms . METHODS: An ad hoc-survey was set up for the this exploratory research, including the standardized Italian versions of the Impact of Event Scale Revised (IES-R) and the Generalized Anxiety Scale (GAD-7), and ad hoc items concerning behavioural reactions due to the pandemic spread and related mass quarantine. Participants were recruited across convenient web-based and mobile app channels using a snowball sampling technique. Data was collected from March 25th to May 1st, 2020. PARTICIPANTS: One-thousand one hundred and ninety-five individuals (851 women and 342 men) completed 60% or more of the survey and were considered for analyses. Mean age was 40 years (s.d. = 14.948). Participants resided in 78 Italian provinces (out of 107 territorial divisions), with 25.7% residing in the Milan province and 9.2% from the Monza and Brianza provinces, closest to the epicentre of the Italian outbreak. RESULTS: During the worst months of the first wave of the Pandemic, the Italian population suffered high level of distress (GAD-7 m = 6.89, s.d. = 5.08; IER-R mean score = 27.86, s.d. 17.46), respectively indicating mild presence of anxiety symptoms, and high levels of PTSD symptoms. Gender seems to be a discriminating variable with women scoring significantly higher than man, both for anxiety symptoms (H (1) = 82.91, p < .001) and all dimensions of PTSD symptoms (intrusion H (1) = 71.23, p < .001, avoidance H (1) = 61.28, p < .001), and hyperarousal (H (1) = 67.348, p < .001). People from Generations Y and Z show to be at higher risk of developing PTSD (V = .746, F (3,1041) =1017.19, p = .001) and GAD symptoms (F (3,1041) = 5.113, p = .002) than older generations. CONCLUSIONS: Gender and generation appeared to be the most consistent risk factor for higher levels of generalized anxiety and PTSD symptoms in the current pandemic. Other variables - such as information seeking behaviours, parental and marriage status, chronic conditions - yielded less consistent evidence. Results indicate the need of including psychological interventions as a standard tool during the emergency management of a catastrophic events such as a pandemic.


Assuntos
COVID-19 , Transtornos de Estresse Pós-Traumáticos , Adulto , Ansiedade/epidemiologia , Controle de Doenças Transmissíveis , Surtos de Doenças , Feminino , Humanos , Incidência , Itália/epidemiologia , Masculino , Pandemias , SARS-CoV-2 , Transtornos de Estresse Pós-Traumáticos/epidemiologia
6.
Breast Cancer Res Treat ; 181(1): 221-224, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-32232699

RESUMO

PURPOSE: During the last two decades, the number of breast implants used in aesthetic, oncologic, and risk-reducing surgery has increased substantially mainly due to the improvement and confirmed safety of these devices. Since the identification of the first case of anaplastic large cell lymphoma associated with a breast implant (BIA-ALCL) 20 years ago, there has been an increase in the number of reports of this very rare disease, demonstrating a clear association with breast implants. While the majority of cases are localized and cured by implant removal and full capsulectomy, a small percentage require chemotherapy and the mortality rate is very low. Nevertheless, the evidence linking BIA-ALCL to implant surface texturing has raised concerns about the long-term safety of these devices resulting in patient and regulatory authority concerns globally. METHODS AND RESULTS: In this commentary, we report the current debate on BIA-ALCL and the main European government's actions, with a special focus on the emotional impact that media coverage has on cancer patients. We comment the emotional impact of such risk for patients with breast implant, the hard process of patient's acceptance for mastectomy and reconstructive surgery, and how this is an essential part of recovery and return to the normal living for many women. CONCLUSION: We conclude by providing guidelines for patient-physician communication and patients' psychological support on this topic of delicate actuality. Our contribution aims at guiding the medical community in managing risk communication about BIA-ALCL with a multidisciplinary approach, according to the most recently available published evidence.


Assuntos
Implantes de Mama/efeitos adversos , Neoplasias da Mama/cirurgia , Aconselhamento/normas , Linfoma Anaplásico de Células Grandes/terapia , Complicações Pós-Operatórias/terapia , Guias de Prática Clínica como Assunto/normas , Psicoterapia/métodos , Neoplasias da Mama/patologia , Neoplasias da Mama/psicologia , Feminino , Seguimentos , Humanos , Linfoma Anaplásico de Células Grandes/etiologia , Linfoma Anaplásico de Células Grandes/patologia , Linfoma Anaplásico de Células Grandes/psicologia , Complicações Pós-Operatórias/etiologia , Complicações Pós-Operatórias/patologia , Complicações Pós-Operatórias/psicologia , Prognóstico
7.
Qual Life Res ; 28(6): 1543-1553, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-30788654

RESUMO

PURPOSE: Cancer treatments often produce undesirable side-effects, such as skin toxicity, impacting on everyday functioning and health-related quality of life (HRQoL). This experimental study sought to determine whether aesthetic products and treatments could significantly decrease perceived skin symptoms, psychological distress and improve skin-related QoL (SRQoL). METHODS: An experimental group composed of 100 breast patients was enrolled for specialized aesthetic treatments at the European Institute of Oncology (IEO) and compared to a control group of 70 breast patients who did not receive any aesthetic treatment. A measure of SRQoL (i.e., Skindex-16) and a distress thermometer were administered longitudinally at three time points: at baseline (T0), at 7 days from beginning of aesthetic treatment (T1) and at 28 days from beginning of aesthetic treatment (T2). RESULTS: Results demonstrated the efficacy of aesthetic treatment in reducing distress and improving SRQoL: while the experimental group showed significant improvements in all HRQoL areas, the control group worsened. Specifically, at T1 and T2 there were significant improvements on distress and Skindex subscales in the experimental group, with an almost complete remission of perceived symptoms at T2. Moreover, all reported cutaneous reactions significantly improved after the specialized treatments, with no differences in SRQoL in skin reaction type. CONCLUSIONS: These findings demonstrate that aesthetic treatments for side-effects of cancer therapies can alleviate perceived distress and improve skin symptoms and HRQoL.


Assuntos
Neoplasias da Mama/psicologia , Estética/psicologia , Qualidade de Vida/psicologia , Cirurgia Plástica/educação , Neoplasias da Mama/patologia , Feminino , Humanos , Pessoa de Meia-Idade , Projetos Piloto
8.
Arch Ital Biol ; 154(1): 14-25, 2016 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-27548096

RESUMO

Maternal care is an essential early environment in mammals that ensures emotional regulation and adaptive fitness of progeny. Longevity and healthy aging are associated with favorable environmental factors including fitting social and behavioral features. In the present review, we discuss the findings that link rearing conditions and early maternal care with life span and aging from an evolutionary, psychological, and molecular perspective. The quality of maternal care may influence internal adaptation through a variety of parallel mechanisms including emotional regulation, stress sensitivity, coping and other behavioral strategies in response to events requiring adaptation. From a biological perspective, it regulates physiological pathways that may persist in adulthood through epigenetic mechanisms, influencing disease susceptibility and, potentially, longevity. Abnormal maternal care induces maladaptation that persists over the life span, may accelerate the onset of aging associated diseases, and shorten life span. This may have important implications in the development of preventive approaches and early interventions.


Assuntos
Longevidade , Adaptação Fisiológica , Envelhecimento , Animais , Humanos
9.
Int J Gynecol Cancer ; 25(8): 1534-40, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-26244759

RESUMO

OBJECTIVES: To text the feasibility of a psychological intervention package administered to 49 pelvic exenteration candidates, aimed at evaluating the preoperative prevalence of psychological distress and assessing the presence of any correlation between preoperative psychological distress and clinical variables such as pain and hospitalization length. METHODS: Patients were referred to the psychology unit from the very beginning of their clinical pathway and were administered the Psychological Distress Inventory (PDI) and the Mini-Mental Adjustment to Cancer (Mini-MAC) questionnaire at prehospital admission. Patients presenting with a significant level of distress received nonstandardized psychological support. Statistical analyses were performed to detect the presence of any correlation between psychological variables at prehospital admission and clinical outcomes. RESULTS: The 40% of patients had significant levels of distress at prehospital admission (PDI ≥ 30). As regards Mini-MAC, the mean value of fighting spirit attitude and fatalism was higher in our sample than in the normative sample of the Mini-MAC validation study in the Italian cancer population. Their anxious preoccupation attitude was lower. There were no correlations between clinical and psychological variables: level of postsurgery pain was higher (3.7) in the subgroup of patients with presurgery PDI < 30 compared with those with PDI ≥ 30 (3.5). However, this difference was not statistically significant (P = 1.00). Considering hospitalization length, the above described trend was similar. CONCLUSIONS: Although highly distressed, pelvic exenteration candidates show an adaptive range of coping mechanisms. This calls for a greater effort in studying the complexity of their psychoemotional status to provide them with the best multidisciplinary care. Extensive study of the real effectiveness of psychological intervention is warranted: randomized clinical trials could help in detecting the presence of any correlation between clinical and psychological variables in a multidisciplinary approach.


Assuntos
Adaptação Psicológica , Neoplasias do Endométrio/psicologia , Exenteração Pélvica/psicologia , Qualidade de Vida , Estresse Psicológico/psicologia , Neoplasias do Colo do Útero/psicologia , Adulto , Idoso , Neoplasias do Endométrio/patologia , Neoplasias do Endométrio/cirurgia , Feminino , Seguimentos , Humanos , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Prognóstico , Estudos Prospectivos , Psicometria , Inquéritos e Questionários , Neoplasias do Colo do Útero/patologia , Neoplasias do Colo do Útero/cirurgia
11.
Front Med (Lausanne) ; 11: 1356385, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38646557

RESUMO

Introduction: Prostate cancer patients (PCP) often struggle with a significant emotional, physical, and social burden during the care-flow pathway. Noteworthy, PCP should not be considered a standalone patient, but someone who is connected with a relevant social environment and that is usually supported by a beloved one, the caregiver. The involvement of the caregivers through the care pathway might bring significant benefits both on the psychological and the treatment and decision-making side. The present pilot study aimed at preliminarily assessing quantitatively the psychological impact of a prostate cancer diagnosis on the degree of agreement of PCPs and their caregivers on medical decisions, coping resources and psychological distress levels. Methods: 16 PCP and their caregivers were enrolled in the study and fulfilled a battery of standardized questionnaires. Results: Results showed low concordance in decision making styles and preferences in patients and their caregivers and that the dyads showed similar depression symptoms levels. Relevant features of the psychological needs of the analyzed dyads, such as need for information and support, also emerged. Conclusion: On the basis of these preliminary results, guidelines for the construction of tailored brief psychological support interventions for PCP dyads are provided.

12.
Games Health J ; 13(2): 75-83, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37878321

RESUMO

Background: Genomics is an integral part of medical science; however, European citizens' literacy on basic genetic concepts is still poor. The aim of this study was to evaluate the effectiveness of Serious Games (SGs) in increasing genetic literacy in laypeople and to assess the impact of SGs on participants' perceived self-efficacy (SE) in managing genetic risk implications. Materials and Methods: Two minigames and an adventure game were created, together with leaflets reporting the same information as the SGs. Sixty participants enrolled at baseline and completed a brief sociodemographic questionnaire and an ad hoc questionnaire assessing their genetic knowledge. They were assigned to the SGs group (30 subjects) or to the Leaflets group (30 subjects) by matching age and sex. Both groups had about 40 minutes to play the SGs or to read the leaflets. In the postlearning session, participants completed the same genetic knowledge questionnaires administered at baseline and five items from the Self-Efficacy Scale, whereas the SGs group also filled in the In-Game Experience Questionnaire. Results and Conclusion: Results showed that learning genetic concepts through SGs was comparable to learning through leaflets. Playing SGs was also associated with poor feelings of frustration or annoyance, good engagement in the game challenges and contents, and positive feelings, particularly in subjects under 30 years. Participants perceiving SE increased significantly in both Leaflets and SGs groups, but the effect was higher for SGs players. SGs have the potential to increase genetic literacy in the public by making the learning process more engaging, pleasant and by enhancing SE.


Assuntos
Aprendizagem , Alfabetização , Humanos , Projetos Piloto , Emoções , Inquéritos e Questionários
13.
Patient ; 17(2): 179-190, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38103109

RESUMO

BACKGROUND AND OBJECTIVE: There has been an increase in the study and use of stated-preference methods to inform medicine development decisions. The objective of this study was to identify prioritized topics and questions relating to health preferences based on the perspective of members of the preference research community. METHODS: Preference research stakeholders from industry, academia, consultancy, health technology assessment/regulatory, and patient organizations were recruited using professional networks and preference-targeted e-mail listservs and surveyed about their perspectives on 19 topics and questions for future studies that would increase acceptance of preference methods and their results by decision makers. The online survey consisted of an initial importance prioritization task, a best-worst scaling case 1 instrument, and open-ended questions. Rating counts were used for analysis. The best-worst scaling used a balanced incomplete block design. RESULTS: One hundred and one participants responded to the survey invitation with 66 completing the best-worst scaling. The most important research topics related to the synthesis of preferences across studies, transferability across populations or related diseases, and method topics including comparison of methods and non-discrete choice experiment methods. Prioritization differences were found between respondents whose primary affiliation was academia versus other stakeholders. Academic researchers prioritized methodological/less studied topics; other stakeholders prioritized applied research topics relating to consistency of practice. CONCLUSIONS: As the field of health preference research grows, there is a need to revisit and communicate previous work on preference selection and study design to ensure that new stakeholders are aware of this work and to update these works where necessary. These findings might encourage discussion and alignment among different stakeholders who might hold different research priorities. Research on the application of previous preference research to new contexts will also help increase the acceptance of health preference information by decision makers.


Assuntos
Serviços de Saúde , Projetos de Pesquisa , Humanos , Inquéritos e Questionários , Pesquisadores
14.
Curr Oncol ; 30(1): 803-823, 2023 01 06.
Artigo em Inglês | MEDLINE | ID: mdl-36661710

RESUMO

BACKGROUND: A cancer diagnosis can impact patients' and caregivers' lives, posing different challenging situations. In particular, breast cancer and prostate cancer are two types of cancer involving families and especially spouses in challenges linked with the diagnosis and treatment process. Caregivers are usually involved in the treatment decision-making (TDM) process concerning patients' clinical pathway, cancer treatment, and ongoing therapies. To date, no contributions provide an exhaustive overview of the role of caregivers in cancer care and their involvement in the TDM process related to the therapies. METHODS: We performed a systematic review of caregiver and patients experiences and perceptions of caregiver involvement in cancer TDM. Articles were searched on Public/Publisher MEDLINE (PubMed), Excerpta Medica Database (Embase), Medical Literature Analysis and Retrieval System Online (Medline), and American Psychological Association APA PsycINFO. RESULTS: 17 studies were included, 10 on prostate cancer and 7 on breast cancer. According to the reviewed studies, patients and caregivers experienced the cancer diagnosis with a sense of unity. Most patients preferred to have an active or collaborative role with caregivers in TDM, feeling it was important to consult or share the decision made with their caregivers. Caregivers preferred to collaborate with patients or let patients decide by themselves after considering their opinions. Caregiver involvement could have a positive influence on the patient's medical decisions, even if cancer diagnosis and treatments overwhelmed patients and caregivers. CONCLUSIONS: These findings highlight the importance of using a perspective that focuses on the relationship between a patient and caregivers when they receive a cancer diagnosis and have to make a treatment decision. Targeting caregiver-patient dyads, rather than individuals, is important since a supported relationship could have a protective effect on psychological distress, quality of life (QOL), and relationship satisfaction. Moreover, dyads may benefit from interventions that focus on the needs of both the patient and caregiver.


Assuntos
Neoplasias da Mama , Neoplasias da Próstata , Masculino , Humanos , Qualidade de Vida , Tomada de Decisão Compartilhada , Neoplasias da Próstata/terapia , Neoplasias da Mama/terapia
15.
Res Involv Engagem ; 9(1): 21, 2023 Apr 07.
Artigo em Inglês | MEDLINE | ID: mdl-37029449

RESUMO

BACKGROUND: There is growing recognition of the importance of patient and public stakeholder involvement (PPI) in patient preference research. However, limited evidence exists regarding the impact, barriers and enablers of PPI in preference studies. The Innovative Medicines Initiative (IMI)-PREFER project conducted a series of preference case studies which incorporated PPI. OBJECTIVE: To describe: (1) how PPI was operationalized in the PREFER case studies, (2) the impact of PPI, and (3) factors that served to impede and facilitate PPI. METHODS: We reviewed the PREFER final study reports to determine how patient partners were involved. We conducted a thematic framework analysis to characterize the impact of PPI and then administered a questionnaire to the PREFER study leads to identify barriers and facilitators to effective PPI. RESULTS: Eight PREFER case studies involved patients as research partners. Patient partners were involved in activities spanning all phases of the patient preference research process, including in study design, conduct and dissemination. However, the type and degree of patient partner involvement varied considerably. Positive impacts of PPI included improvements in the: (1) quality of the research and research process; (2) patient partner empowerment; (3) study transparency and dissemination of results; (4) research ethics, and (5) trust and respect between the research team and the patient community. Of the 13 barriers identified, the 3 most frequently reported were inadequate resources, insufficient time to fully involve patient partners, and uncertainty regarding how to operationalize the role of 'patient partner. Among the 12 facilitators identified, the two most frequently cited were (1) having a clearly stated purpose for involving patients as research partners; and (2) having multiple patient partners involved in the study. CONCLUSION: PPI had many positive impacts on the PREFER studies. Preference study leads with prior PPI experience reported a greater number of positive impacts than those with no such experience. In light of the numerous barriers identified, multi-faceted implementation strategies should be considered to support adoption, integration and sustainment of PPI within preference research. Additional case studies of patient partner involvement in preference research are needed as well to inform best practices in this area.


Research about patients' preferences for medicinal products and treatments is growing. Such research could be improved if patients were involved as 'research partners,' that is, as active members of the study team itself. To date, however, little is known about the actual experience of involving patients as partners in such research. This paper presents learnings from involving patients as partners in 8 case studies conducted as part of IMI-PREFER, a big, European-based project which aimed to develop recommendations about how to conduct preference research. Involving patients as partners led to improvements in the: (1) quality of the research and research process; (2) recruitment of participants; (3) content and design of patient-facing informational materials; and, (4) how and what study results were shared with patient communities. Our findings showed that it is important to plan for patient partners' involvement early on in the design of the preference study so as to ensure that they are fully integrated into the research team and their opportunity to contribute to all stages of the research is optimized. Such planning should address how patient partners will be paid, what their role responsibilities will include, how and when they will be trained and educated, and how they will be supported throughout the course of the study. Having a clearly stated purpose for involving patients as research partners, selecting patient partners who have had prior research experience and relationships with the researchers, and having multiple patient partners on the study team are all also helpful in supporting successful patient involvement. We need more people to share their experiences with involving patient partners in preference research so that we can continue to improve how this is done.

16.
Front Psychol ; 14: 1062830, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37425173

RESUMO

Background: In the treatment of Non-Small Cell Lung Cancer (NSCLC) the combination of Immuno- Oncotherapy (IO) and chemotherapy (CT) has been found to be superior to IO or CT alone for patients' survival. Patients and clinicians are confronted with a preference sensitive choice between a more aggressive treatment with a greater negative effect on quality of life versus alternatives that are less effective but have fewer side effects. Objectives: The aims of this study were to: (a) quantify patients' preferences for relevant attributes related to Immuno-Oncotherapy treatment alternatives, and (b) evaluate the maximum acceptable risk (MAR)/Minimum acceptable benefit (MAB) that patients would accept for treatment alternatives. Methods: An online preference survey using discrete-choice experiment (DCE) was completed by NSCLC patients from two hospitals in Italy and Belgium. The survey asked patients' preferences for five patient- relevant treatment attributes. The DCE was developed using a Bayesian D-efficient design. DCE analyses were performed using mixed logit models. Information regarding patient demographics, health literacy, locus of control, and quality of life was also collected. Results: 307 patients (158 Italian, 149 Belgian), stage I to IV, completed the survey. Patients preferred treatments with a higher 5-year survival chance as the most important attribute over all the other attributes. Preference heterogeneity for the attribute weights depended on health literacy, patients' age and locus of control. Patients were willing to accept a substantially increased risks of developing side effects in exchange for the slightest increase (1%) in the chance of surviving at least 5 years from the diagnosis of cancer. Similarly, patients were willing to accept a switch in the mode of administration or complete loss of hair to obtain an increase in survival. Conclusion: In this study, the proportion of respondents who systematically preferred survival over all other treatment attributes was particularly high. Age, objective health literacy and locus of control accounted for heterogeneity in patients' preferences. Evidence on how NSCLC patients trade between survival and other NSCLC attributes can support regulators and other stakeholders on assessing clinical trial evidence and protocols, based on patients' conditions and socio-demographic parameters.

18.
Neuropsychol Rehabil ; 22(3): 362-73, 2012.
Artigo em Inglês | MEDLINE | ID: mdl-22264119

RESUMO

This study aims to investigate relationships between the preference in use of visual-verbal cognitive representation and strategies and lesion site in patients with acquired brain injury. The Visualiser-Verbaliser Questionnaire (VVQ) and the Questionnaire on Visual and Verbal Strategies (QSVV) were administered to 48 patients by an examiner in an ambulatory setting. Data showed that the preference for verbalisation decreased in patients with a parietal focal lesion, who tended to use a mixed cognitive style. Patients with subcortical bilateral lesions verbalised more than patients with no lesion or right focal lesions. In general, damage in a specific area associated to a type of cognitive strategy may compromise its use, but does not lead to its extinction. From a neurorehabilitation perspective, findings suggest that patients can learn to use cognitive strategies to compensate for their deficits.


Assuntos
Lesões Encefálicas/psicologia , Transtornos Cognitivos/psicologia , Cognição , Adulto , Idoso , Lesões Encefálicas/complicações , Transtornos Cognitivos/complicações , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Testes Neuropsicológicos/estatística & dados numéricos , Inquéritos e Questionários , Comportamento Verbal
19.
Front Psychol ; 13: 962634, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36405193

RESUMO

Background: Caregivers may play a fundamental role in the clinical pathway of cancer patients. They provide emotional, informational, and functional support as well as practical assistance, and they might help mediate the interaction and communication with the oncologists when care options are discussed, or decisions are made. Little is known about the impact of dyadic dynamics on patient-doctor communication, patient's satisfaction, or adherence to the therapies. This study protocol aims to evaluate the efficacy of a psychological support intervention on patients-caregivers relationship and their alignment in the treatment decision-making (TDM) process and estimate related improvement in patient' compliance/adherence to treatments. Methods: A total of 102 patients-caregivers' dyads will be involved, among breast and prostate cancer patients. The study entails a pre- post- evaluation through psychological questionnaires, with a randomization of participants in two conditions, the experimental one in which subjects participate in a psychological support consultation, and the control one, where dyads do not receive any intervention. A follow up after 6 months from the enrollment is planned. Discussion: A positive impact of the psychological support intervention on patients' anxiety, depression, distress, and perceived social support is expected. Such improvements can directly affect patients' satisfaction and adherence to treatments. Data gathered from this study may inform health care providers, policy makers, and public health managers about the importance of caregiver's involvement in the cancer care pathway, and the best way to manage it. A further impact is to develop a specific intervention protocol to support caregivers' involvement in cancer care pathway, improve patient's wellbeing, the interaction with physicians and the compliance with the cancer treatment.

20.
Front Psychol ; 13: 772128, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35450337

RESUMO

The coronavirus disease 2019 (COVID-19) pandemic had a negative psychological impact on the population at scale, yet it is possible that vulnerable patient populations may experience a heavier burden with increased feelings of anxiety and distress. Cancer patients have to trade-off between the fear of exposing themselves to the virus and the need to continue life-saving medical procedures. The present study investigated the prevalence of generalized anxiety and post-traumatic stress symptoms (PTSS) in a population of Italian cancer patients and healthy participants in the months following the COVID-19 outbreak. Using standardized measures of PTSS (impact of event scale revised; IES-R) and generalized anxiety (generalized anxiety scale; GAD-7), we found that patients experienced higher levels of adverse mental health outcomes. Several variables were found to negatively affect PTSS and anxiety in this population, including the younger age of respondents, having children, and the impossibility to attend regular medical check-ups. These findings stress the importance of maintaining a clear and regular communication with patients throughout future waves of the pandemic and ensure continuity of care in this vulnerable population. Furthermore, this study indicates the need to establish psychological interventions aimed at patients with cancer, targeting especially younger generations who are more likely to experience adverse psychological outcomes.

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