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1.
BMC Psychol ; 11(1): 421, 2023 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-38041168

RESUMO

INTRODUCTION: To date, there are no known studies that have investigated the new need for volunteer services among cancer patients during the Covid-19 pandemic. However, it is essential for volunteer associations to heighten such knowledge to best guide their offer in this challenging period. AIM: The present study aims to provide a mapping of the cancer patients' needs for volunteer services followed at Istituto Nazionale dei Tumori in Milan (Italy) during the Covid-19 pandemic. Since there are no specific questionnaires for this purpose, we created an ad hoc tool for which we report the preliminary result. METHOD: We used a mixed-method multiphase approach. PHASE I: in April-May 2020 40 ad hoc paper questionnaires were distributed at the entrance of the aforementioned hospital, with the aim of investigating patients' needs through two open-ended questions then analyzed through thematic analysis. PHASE II: the contents that emerged from Phase I were transformed into items and submitted to the judgment of a small group of "peers" (patients) and "experts" (professionals) in November-December 2020 to evaluate their comprehensiveness, representativeness and intrusiveness. Phase III: in January-February 2021 paper questionnaires, containing the items reviewed in Phase II, were distributed within the hospital to a representative sample of cancer patients. We applied descriptive statistics, Exploratory Factor Analysis (EFA) and Cronbach's Alpha. RESULTS: 32 patients completed Phase I, 3 "peers" and 9 "experts" participated in Phase II, 214 patients completed the questionnaire in Phase III. EFA highlights five kinds of needs during the Covid-19 pandemic, in order of priority: (1) need to be supported at the hospital; (2) need for emotional support; (3) need for daily errands; (4) need for practical support to family members; (5) need to share free time. Preliminary results on the tool are encouraging, although further studies are needed. These results will allow local volunteer associations to adapt their services during the pandemic.


Assuntos
COVID-19 , Neoplasias , Humanos , Pandemias , Neoplasias/terapia , Neoplasias/psicologia , Inquéritos e Questionários , Itália
2.
Int J Colorectal Dis ; 38(1): 249, 2023 Oct 07.
Artigo em Inglês | MEDLINE | ID: mdl-37804449

RESUMO

PURPOSE: Colorectal adenomatous polyposis is characterized by the onset of tens to thousands of adenomas in the colorectal epithelium and, if not treated, leads to a lifetime increased risk of developing colorectal cancer compared to the general population. Thus, prophylactic surgery is recommended. This study aims to investigate the quality of life of colorectal adenomatous polyposis patients following prophylactic surgery and indirectly compares these findings with those of healthy adults of the normative sample. METHODS: All patients who underwent prophylactic surgery for polyposis and were in follow-up at the hereditary digestive tract tumors outpatient department of our institute were eligible for the study. The Short Form-36 questionnaire and 21 ad hoc items were used at the time of clinical evaluation. RESULTS: A total of 102 patients were enrolled. For the SF-36 domains, mean values ranged from 64.18 for vitality to 88.49 for physical functioning, with the highest variability for role-physical limitations; the minimum value of functioning was reached for role-physical limitations, role-emotional limitations, and social functioning. The maximum value of functioning was reached for role-emotional limitations (73.96%) and role-physical limitations (60.42%). In total, 48.96% and 90.63% of patients reported no fecal or urinary incontinence episodes, respectively; 69.79% of patients did not have problems in work/school resumption or the personal sexual sphere. CONCLUSION: Quality of life following prophylactic surgery for these patients seems to be good when indirectly compared to HP-normative samples'. Young adult patients appear to quickly manage and adapt to changes in bowel functioning. A minority of patients may experience social and sexual issues.


Assuntos
Polipose Adenomatosa do Colo , Neoplasias Colorretais , Proctocolectomia Restauradora , Humanos , Qualidade de Vida , Polipose Adenomatosa do Colo/cirurgia , Polipose Adenomatosa do Colo/patologia , Neoplasias Colorretais/prevenção & controle , Neoplasias Colorretais/cirurgia , Colectomia
3.
J Multidiscip Healthc ; 16: 1845-1855, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37404961

RESUMO

Background: The multidisciplinary approach is considered "best practice" in oncology. Multidisciplinary Teamwork (MDTW) can be broadly classified into Multidisciplinary Team Meetings (MDTM) and Multidisciplinary Cancer Clinics (MDCC; involving also patients), yet both models are heterogeneously implemented. Purpose: This study aims at describing the different MDTW implemented models in a Comprehensive Cancer Center. Methods: All clinical unit directors of the hospital were contacted to identify any MDTW activities the personnel of the unit were involved in. Structured interviews were carried out to collect MDTWs information, ie, type (MDTM vs MDCC), team composition, aims, disease phase, use of Patient Reported Outcome Measures (PROMs). Descriptive analyses and Social Network Analysis (SNA) were performed. Results: Among 38 structured interviews, 25 concerned MDTMs and 13 in MDCCs. Responders were mainly surgeons (35%) and oncologists (29%), 35% of them were team leaders. Teams were mostly composed of physicians only (64% in MDTMs, 69% in MDCCs). Case managers (8% and 31%), palliative care specialists (12% and 23%) and psychologists (20% and 31%) were involved to a lesser extent, mainly when dealing with advanced disease. MDTWs were mainly aimed at integrating the skills of the different specialists (respectively 72% for MDTMs and 64% for MDCCs) and offering the best overall patient care pathway (64%, 61.5%). MDTWs were directed at patients in both diagnostic (72%, 61.5%) and locally advanced/metastatic (32%, 38.4%) disease. PROMs were seldom used (24%, 23%). SNA shows a similar density in the two MDTWs, but in the MDCCs two nodes remain isolated (pathologists and radiologists). Conclusion: Despite a high number of MDTWs for advanced/metastatic disease, there is limited involvement of palliative care specialists, psychologists, and nurses.

5.
Aesthetic Plast Surg ; 47(1): 30-39, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36018329

RESUMO

BACKGROUND: The literature that has explored differences between direct-to-implant (DTI) and expander-based (EB) breast reconstruction has mainly focused on complications, with results not always unambiguous. Moreover, there are limited data 1) comparing DTI and EB breast reconstruction after nipple-sparing mastectomy (NSM) and 2) from the patient's perspective. AIM: The aim of this study was to compare satisfaction and well-being in patients undergoing DTI and EB reconstruction after NSM in a Comprehensive Cancer Center, exploring what factors can be related to satisfaction and well-being. METHOD: The study design is monocentric, observational and retrospective. The participants completed an online questionnaire containing the Breast-Q and some socio-demographic variables (year of birth, level of education, civil status). Clinical information was obtained from the institutional database. Surgical techniques in the two branches of NSM were similar: all skin incisions, lateral to the areola; all implants, subpectoral (EB: conventionally submuscular; DTI: dual-plane pocket); all without synthetic mesh or acellular tissue matrix. RESULTS: A total of 120 patients (45% with EB and 55% with DTI) completed the questionnaire. We found that there are no differences between EB and DTI concerning the satisfaction and well-being of NSM patients, except for satisfaction with information, which is greater in the DTI group. In EB patients, no variables among those explored are related to satisfaction and well-being. In DTI patients, level of education is positive related to satisfaction with implants and physical well-being, Tumor-Node-Metastasis (TNM) and body mass index (BMI) are negative related to satisfaction with information and TNM also with satisfaction for plastic surgery. CONCLUSION: EB and DTI do not differ in terms of patient well-being, but EB requires a more careful counselling by the surgeon. LEVEL OF EVIDENCE III: This journal requires that authors assign a level of evidence to each article. For a full description of these Evidence-Based Medicine ratings, please refer to the Table of Contents or the online Instructions to Authors   www.springer.com/00266 .


Assuntos
Implantes de Mama , Neoplasias da Mama , Mamoplastia , Humanos , Feminino , Mamilos/cirurgia , Estudos Retrospectivos , Mastectomia/métodos , Neoplasias da Mama/cirurgia , Mamoplastia/métodos , Satisfação Pessoal , Resultado do Tratamento , Satisfação do Paciente
6.
BMC Womens Health ; 22(1): 492, 2022 12 03.
Artigo em Inglês | MEDLINE | ID: mdl-36463143

RESUMO

BACKGROUND: Chemotherapy-induced alopecia (CIA), although generally reversible, is felt as extremely distressing by patients with breast cancer. A certified medical device (Capelli Naturali a Contatto®-CNC®) was produced to provide patients with a personalized scalp prosthesis, reproducing the patient's original hair, resistant to any type of everyday or sporting activity, and hairdressing. AIMS: The present study aimed to evaluate the impact of the CNC® device on the patient's perception of their body image, psychological wellbeing, satisfaction, strengths and weakness of the CNC® device. METHOD: A pilot study was carried out on 21 patients affected by CIA due to recurrent breast cancer. A mixed quantitative/qualitative method was used, including administering a questionnaire and a focus group. RESULTS: Based on the Body Image Scale, body image perception improved after 3 and 6 months using the device in the 20 patients who answered the questionnaire. No significant change over time emerged for the six dimensions investigated by the Italian version of the Psychological Well-Being Scale. The thematic analysis of the focus groups showed six themes: definition of the prosthetic device, acceptance of the proposal, experience with the conventional wig, strengths, weaknesses, economic issues. CONCLUSION: Compared to the previous experience of CIA and the standard wig, the use of the CNC® device improved everyday life and may be proposed to women undergoing chemotherapy and expecting alopecia to prevent discomfort, social embarrassment, and compromised body image.


Assuntos
Antineoplásicos , Neoplasias da Mama , Humanos , Feminino , Projetos Piloto , Neoplasias da Mama/tratamento farmacológico , Alopecia/induzido quimicamente , Imagem Corporal , Antineoplásicos/efeitos adversos
7.
BMC Psychol ; 10(1): 226, 2022 Sep 27.
Artigo em Inglês | MEDLINE | ID: mdl-36167563

RESUMO

BACKGROUND: Despite the numerous tools built ad hoc to investigate the effects of the CoViD-19 pandemic on people, to date there are no known questionnaires that investigate the emotional experiences of cancer patients. This work aims to start a process of construction and validation of a tool that captures these aspects (Pandemic Emotions Questionnaire in Cancer Patients-PEQ-CP). METHOD: A mixed method approach was used through three phases, each on a different sample: Phase 1: creation of items and checking of internal validity, through unstructured interviews and verification of the validity of content by "peers" and "experts"; Phase 2: exploration of the factorial structure of the scale through an exploratory factor analysis (EFA); Phase 3: confirmation of the factorial structure of the scale through a confirmatory factor analysis (CFA). RESULTS: Phase 1 revealed 26 items that can be grouped into 4 theoretical dimensions. "Peers" and "experts" rated all items as understandable and relevant except one, which was reformulated. The EFA in the Phase 2 revealed a factorial structure with 14 items and three dimensions (Emotional Understanding, Communication of Emotions, Feelings the same as others), confirmed by the CFA in Phase 3. CONCLUSION: Although further validation steps are required, the PEQ-CP showed good psychometric properties.


Assuntos
COVID-19 , Neoplasias , Emoções , Análise Fatorial , Humanos , Pandemias , Psicometria/métodos , Reprodutibilidade dos Testes , Inquéritos e Questionários
8.
BMC Cancer ; 22(1): 161, 2022 Feb 10.
Artigo em Inglês | MEDLINE | ID: mdl-35144569

RESUMO

BACKGROUND: Despite evidence of the positive impact of routine assessment of patient-reported outcome measures (PROMs), their systematic collection is not widely implemented in cancer care. AIM: To assess the knowledge, use and attitudes of healthcare professionals (HCPs) towards PROMs and electronically collected PROMs (ePROMs) in clinical practice and research and to explore respondent-related factors associated with the above dimensions. METHOD: An ad hoc developed online survey was administered to all HCPs employed in clinical activity in an Italian comprehensive cancer center. The survey investigated which PROMs were known and used, as well as HCPs' opinions on the advantages and drawbacks of routine PROM assessment, including electronic assessment (ePROM). Linear and logistic regression models were used for association analyses. RESULTS: Five Hundred Eleven of nine hundred ninety-two invited HCPs (52%) provided analyzable responses. 68% were women, 46% were nurses and 42% physicians, and 52.5% had > 20 years seniority. The average number of PROMs known was six among 17 proposed. All proved to be under-used (< 28%) except unidimensional and multidimensional pain scales (77 and 36%). Respondents expressed an overall positive attitude towards PROMs, with strengths outweighing weaknesses (mean overall scores 3.6 and 2.9, respectively, on a 1-5 scale). 67% of respondents preferred electronic collection over paper and pencil. Profession was associated with knowledge and use (physicians reported knowing more PROMs than other professionals) and with a preference for electronic collection (nurses were less likely to prefer the electronic format than physicians). Senior HCPs were slightly more critical about both PROMs and electronic administration. CONCLUSIONS: This survey indicates an acceptable level of knowledge of common PROM tools but low usage in practice. Based on the generally positive attitude of HCPs, routine implementation of ePROMs can be promoted as long as adequate resources and training are provided. TRIAL REGISTRATION: Not registered.


Assuntos
Atitude do Pessoal de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/psicologia , Neoplasias/terapia , Medidas de Resultados Relatados pelo Paciente , Adulto , Institutos de Câncer , Feminino , Humanos , Itália , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Inquéritos e Questionários
9.
Support Care Cancer ; 30(3): 1911-1921, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34618238

RESUMO

PURPOSE: The aim of the present study was to explore (1) informed consent (IC) representations, level of understanding, needs, and factors that influence the willingness of cancer patients to participate in randomized controlled trials (RCTs) (phase I) and (2) representations, experiences, and critical issues of physicians involved in the same process (phase II). METHODS: Semi-structured interviews were conducted with 20 cancer patients who had been asked to enroll in a phase II/III RCT (phase I). Two focus groups were conducted with 13 physicians enrolled in the same process (phase II). The content produced was analyzed through a thematic analysis. RESULTS: The themes that emerged in the first phase I were grouped into six categories: IC representation, randomization, experimentation, meeting with the physician, factors that influence the willingness to participate, and trial participants' needs. The themes emerged in the phase II were grouped into four: IC representation, critical issues of the IC, relationship, and recruitment of trial participants. Each theme is articulated into sub-themes and deeply discussed. CONCLUSION: This study highlights (1) the gap between what is ethically demanded in a RCT consultation and the reality of the situation and (2) the difference in perceptions between patients and physicians with reference to the meaning, objectives, and level of understanding of IC.


Assuntos
Motivação , Médicos , Humanos , Consentimento Livre e Esclarecido , Oncologia , Projetos de Pesquisa
10.
Qual Life Res ; 31(4): 1105-1115, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-34424486

RESUMO

PURPOSE: The coronavirus 2019 (COVID-19) pandemic has had profound consequences also for non-infected patients. This study aimed to evaluate the impact of the pandemic on the quality of life of a population with hereditary gastrointestinal cancer predisposition syndromes and on the surveillance/oncological care program of patients enrolled in a dedicated registry. METHODS: The study was conducted by means of an online self-report survey during the first Italian national lockdown. The survey comprised four sections: demographics; perception/knowledge of COVID-19; impact of the COVID-19 pandemic on surveillance and cancer care; health status (SF-12 questionnaire). RESULTS: 211 complete questionnaires were considered. 25.12% of respondents reported being not at all frightened by COVID-19, 63.98% felt "not at all" or "a little" more fragile than the healthy general population, and 66.82% felt the coronavirus to be no more dangerous to them than the healthy general population. 88.15% of respondents felt protected knowing they were monitored by a team of dedicated professionals. CONCLUSION: Patients with hereditary gastrointestinal cancer predisposition syndromes reported experiencing less fear related to COVID-19 than the healthy general population. The study results suggest that being enrolled in a dedicated registry can reassure patients, especially during health crises.


Assuntos
COVID-19 , Neoplasias Colorretais , COVID-19/epidemiologia , Controle de Doenças Transmissíveis , Humanos , Pandemias , Qualidade de Vida/psicologia , Sistema de Registros , SARS-CoV-2 , Inquéritos e Questionários , Síndrome
11.
J Cancer Educ ; 37(5): 1322-1331, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-33486712

RESUMO

Few studies have investigated the needs of patients with metastatic breast cancer (MBC), and none have been conducted in Italy. Three categories of needs have been identified from the literature: information, support, and practical resources. The present study aims to achieve an in-depth understanding of the patients' needs related to the MBC care pathway. In-depth interviews were conducted and analyzed by thematic analysis. The participants were 9 women with MBC (age range 36-74) who were enrolled at the Fondazione IRCCS Istituto Nazionalde dei tumori, in Milan. The analysis enabled us to identify four themes (which reflect the needs of the participants), each divided into numerous sub-themes: (1) the need for clinical recognition, (2) the need for more attention from healthcare professionals, (3) the need for more and better services to be available at the hospital, (4) the need for specific public health policies. Since the metastatic phase of breast cancer seems to elicit additional, specific needs and multi-level management, changes in attitudes and multidisciplinary practices should be tested in order to ascertain how these needs can be met.


Assuntos
Neoplasias da Mama , Adulto , Idoso , Neoplasias da Mama/patologia , Neoplasias da Mama/terapia , Feminino , Humanos , Itália , Pessoa de Meia-Idade , Pesquisa Qualitativa
12.
Oncology ; 99(2): 84-95, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-32992318

RESUMO

BACKGROUND: Aromatase inhibitors (AIs) as adjuvant therapy after breast cancer (BC) surgery have demonstrated to reduce the risk of disease recurrence, to lower the risk of contralateral BC, and to improve survival when compared to tamoxifen in patients with limited-stage hormone receptor-positive (HR+) BC. However, AIs are associated with adverse events that can have a significant impact on patient quality of life (QoL). AIM: This study aimed to identify profiles of psychological symptoms and QoL in HR+ BC patients undergoing AI therapy. METHOD: Data were collected with questionnaires administered at three time points: AI initiation (t0); 3 months after AI initiation (t1); and 6 months after AI initiation (t2). The FACT-G, FACT-B, and FACT-ES questionnaires were used to assess QoL; psychological symptoms were assessed using the SCL-90-R. RESULTS: 43 women were enrolled in the study (t0), and 37 completed the t1 evaluation and 29 the t2 evaluation. We found (1) a progressive decrease over time in FACT-G and FACT-ES scores, in particular in the Physical, Emotional, and Endocrine subscales, and an increase in the SOM (somatization) subscale of the SCL-90-R; (2) the presence of 4 clusters related to different psychological symptoms and QoL evolution over time; (3) that patients belonging to the cluster characterized by worsening symptoms and QoL during time differed from the others in the Emotional subscale of the FACT-B and in the GSI (Global Score), OCD (obsessive-compulsive), DEP (depression), ANX (anxiety), and SLP (sleep disorders) dimensions of the SCL-90-R and had significantly higher BMI levels; and (4) that 3 items from the SCL-90-R and 2 items from FACT Emotional Well-Being subscale were predictive of the "worst" cluster. CONCLUSIONS: Although larger studies are needed to confirm these results, our data open up new ways of investigation into the effects of AIs on QoL in HR+ BC patients.


Assuntos
Inibidores da Aromatase/uso terapêutico , Neoplasias da Mama/tratamento farmacológico , Pós-Menopausa/psicologia , Qualidade de Vida/psicologia , Idoso , Idoso de 80 Anos ou mais , Inibidores da Aromatase/efeitos adversos , Neoplasias da Mama/patologia , Neoplasias da Mama/psicologia , Neoplasias da Mama/cirurgia , Quimioterapia Adjuvante , Feminino , Humanos , Estudos Longitudinais , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Inquéritos e Questionários , Resultado do Tratamento
13.
Health Qual Life Outcomes ; 18(1): 252, 2020 Jul 28.
Artigo em Inglês | MEDLINE | ID: mdl-32723341

RESUMO

BACKGROUND: Listening to "patient voices" in terms of symptoms, emotional status and experiences with care, is crucial for patient empowerment in clinical practice. Despite convincing evidence that routine patient reported outcomes and experience measurements (PRMs) with rapid feed-back to oncologists can improve symptom control, patient well-being and cost effectiveness, PRMs are not commonly used in cancer care, due to barriers at various level. Part of these barriers may be overcome through electronic PRMs collection (ePRMs) integrated with the electronic medical record (EMR). The PATIENT VOICES initiative is aimed at achieving a stepwise integration of ePRMs assessment into routine cancer care. The feasibility project presented here is aimed at assessing the knowledge, use and attitudes toward PRMs in a comprehensive cancer centre; developing and assessing feasibility of a flexible system for ePRM assessment; identifying barriers to and developing strategies for implementation and integration of ePRMs clinical practice. METHODS: The project has been organized into four phases: a) pre-development; b) software development and piloting; c) feasibility assessment; d) post-development. A convergent mixed method design, based on concurrent quantitative and qualitative data collection will be applied. A web-survey on health care providers (HCPs), qualitative studies on patients and HCPs (semi-structured interviews and focus groups) as well as longitudinal and cross-sectional quantitative studies will be carried out. The quantitative studies will enroll 600 patients: 200 attending out-patient clinics (physical symptom assessement), 200 attending inpatient wards (psychological distress assessment) and 200 patients followed by multidisciplinary teams (patient experience with care assessment). The Edmonton symptom assessment scale, the Distress Thermometer, and a tool adapted from existing patient reported experience with cancer care questionnaires, will be used in quantitative studies. A multi-disciplinary stakeholder team including researchers, clinicians, health informatics professionals, health system administrators and patients will be involved in the development of potentially effective implementation strategies in the post development phase. DISCUSSION: The documentation of potential advantages and implementation barriers achieved within this feasibility project, will serve as a starting point for future and more focused interventions aimed at achieving effective ePRMs routine assessment in cancer care. TRIAL REGISTRATION: ClinicalTrials.gov ( NCT03968718 ) May 30th, 2019.


Assuntos
Oncologia/métodos , Participação do Paciente/métodos , Medidas de Resultados Relatados pelo Paciente , Institutos de Câncer/organização & administração , Estudos Transversais , Estudos de Viabilidade , Humanos , Pesquisa Qualitativa , Qualidade de Vida , Projetos de Pesquisa , Avaliação de Sintomas
14.
Psychooncology ; 28(9): 1871-1878, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31264307

RESUMO

OBJECTIVE: Female carriers of BRCA1/BRCA2 mutations (BRCAm) are at increased risk of developing breast and ovarian cancer. The main prevention options currently available consist in either clinical-radiological surveillance or risk-reducing surgery. This study investigated factors that might influence the choice of risk-reducing mastectomy (RRM) and/or salpingo-oophorectomy (RRSO) over surveillance in high-risk women. METHODS: One hundred twenty-eight BRCAm women, 75 (58.60%) cancer affected (C-A) and 53 (41.40%) cancer-unaffected (C-UN), completed a baseline questionnaire concerning socio-demographic factors, personal medical history, cancer family history, and psychological dimensions. Preferences about prevention strategies were evaluated after 15 months. Multivariate logistic regression was used to analyse the relationship between these factors and the choice of RRSO or RRM in the whole cohort and the choice of surgery (RRM and/or RRSO) in C-A and C-UN women. RESULTS: The analyses on the whole cohort highlighted factors associated with the choice of both RRM and RRSO ("cancer concern," "previous therapeutic mastectomy," and "number of cancer-affected family members"), but also a few specifically associated with either RRM (age) or RRSO ("health" and "energy" perception and "number of children"). Surgery was more likely to be chosen by C-A (76%) than C-UN women (34%). With the exception of "cancer concern," factors associated with the choice of surgery were different between C-A ("number of deaths for cancer in the family" and "feeling downhearted and blue") and C-UN ("number of children" and "health perception") women. CONCLUSION: This study highlights potential drivers underlying the choice of preventive surgery, which should be considered when supporting the decision-making process in these women.


Assuntos
Proteína BRCA1/genética , Proteína BRCA2/genética , Neoplasias da Mama/cirurgia , Neoplasias Ovarianas/cirurgia , Comportamento de Redução do Risco , Adulto , Neoplasias da Mama/genética , Comportamento de Escolha , Estudos de Coortes , Feminino , Heterozigoto , Humanos , Mastectomia/psicologia , Pessoa de Meia-Idade , Mutação , Neoplasias Ovarianas/genética , Salpingectomia/psicologia , Inquéritos e Questionários , Conduta Expectante
15.
PLoS One ; 13(7): e0200532, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30001423

RESUMO

BACKGROUND: We performed a qualitative study to investigate the experiences of participants in a multicentre randomized controlled trial on a home-based palliative approach (HPA) for adults with severe multiple sclerosis (MS) and their caregivers. Our aim was to explore the strengths and challenges of the intervention, and circumstances that may have influenced its efficacy. METHODS: Participants to the qualitative study were the patients, their caregivers, patient referring physicians, and the teams who delivered the HPA intervention. We performed semi-structured one-on-one interviews with 12 patients and 15 informal caregivers chosen using a maximum variation strategy, two focus group meetings with patient referring physicians (4 participants each), and one with the HPA teams (9 participants). RESULTS: From data analysis (framework method) 38 sub-categories emerged, which were grouped into 10 categories and 3 themes: 'expectations,' 'met and unmet needs', and 'barriers'. Intervention benefits were improved control of symptoms and reduced sense of isolation of the patient-caregiver dyads. Limitations were: factors related to experimental design (difficulty of dyads in identifying examiner and team roles, additional burden for caregivers); team issues (insufficient team building /supervision, competing priorities); limitations of the intervention itself (insufficient length, lack of rehabilitation input); and external factors (resource limitations, under-responsive services/professionals). The referring physician focus groups provided little experiential data. CONCLUSIONS: The HPA reduced patient symptoms and sense of isolation in patients and caregivers. The indirect role of the HPA teams, and insufficient length of the intervention were key limitations. The experimental design imposed additional burdens on the dyads. Key barriers were the paucity of available services, the demanding administrative procedures, and lack of networking facilities. These findings suggest that two major requirements are necessary for home palliative care to be effective in this patient population: HPA teams well-connected with MS rehabilitation services, and care delivered over the long-term, with variable intensity. TRIAL REGISTRATION: Current Controlled Trials ISRCTN73082124 (Registered 19/06/2014).


Assuntos
Serviços de Assistência Domiciliar , Esclerose Múltipla/terapia , Cuidados Paliativos , Índice de Gravidade de Doença , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pacientes
16.
Mult Scler ; 24(5): 663-674, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-28381133

RESUMO

BACKGROUND: Evidence on the efficacy of palliative care in persons with severe multiple sclerosis (MS) is scarce. OBJECTIVE: To assess the efficacy of a home-based palliative approach (HPA) for adults with severe MS and their carers. METHODS: Adults with severe MS-carer dyads were assigned (2:1 ratio) to either HPA or usual care (UC). At each center, a multi-professional team delivered the 6-month intervention. A blind examiner assessed dyads at baseline, 3 months, and 6 months. Primary outcome measures were Palliative care Outcome Scale-Symptoms-MS (POS-S-MS) and Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW, not assessed in severely cognitively compromised patients). RESULTS: Of 78 dyads randomized, 76 (50 HPA, 26 UC) were analyzed. Symptom burden (POS-S-MS) significantly reduced in HPA group compared to UC ( p = 0.047). Effect size was 0.20 at 3 months and 0.32 at 6 months, and statistical significance was borderline in per-protocol analysis ( p = 0.062). Changes in SEIQoL-DW index did not differ in the two groups, as changes in secondary patient and carer outcomes. CONCLUSION: HPA slightly reduced symptoms burden. We found no evidence of HPA efficacy on patient quality of life and on secondary outcomes.


Assuntos
Serviços de Assistência Domiciliar , Esclerose Múltipla/patologia , Esclerose Múltipla/terapia , Cuidados Paliativos/métodos , Atividades Cotidianas , Assistência ao Convalescente , Idoso , Cuidadores , Progressão da Doença , Feminino , Pacientes Domiciliares , Humanos , Itália , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/mortalidade , Análise Multivariada , Qualidade de Vida , Índice de Gravidade de Doença , Resultado do Tratamento
17.
Tumori ; 2016(3): 244-51, 2016 Jun 02.
Artigo em Inglês | MEDLINE | ID: mdl-27079902

RESUMO

PURPOSE: Tobacco control guidelines recommend all healthcare professionals to ask patients about their smoking status and to offer them at least minimal cessation advice. However, few data are available about the daily practice of hospital clinicians who work with smoking cancer patients. This study assesses, in a comprehensive cancer center, the physicians' smoking habit, their clinical practice in offering a smoking cessation intervention to patients who smoke, and the training they received in this field. METHODS: A Web-based survey was sent to 285 physicians. RESULTS: The survey response rate was 75%. Sixty-two percent, 24%, and 14% of responders were never, former, and current smokers, respectively. Six percent of all responding physicians have already participated in smoking cessation training and 43% of them declared their willingness to be trained. Eighty-six percent of all responding physicians asked about the patients' smoking status, 50% routinely advised patients to quit smoking, and 32% assessed their motivation to do so. Smoking cessation guidelines were not followed mostly for lack of time, fear to increase patients' stress, and lack of smoking cessation training. Ninety-four percent of responding physicians knew the smoking cessation service for outpatients and 65% referred at least one patient, 66% of responding physicians knew the service for inpatients, and 36% of them asked for at least one intervention in the ward. CONCLUSIONS: This study pointed out partial adherence of the physicians working in a leading cancer center to the smoking cessation guidelines. The clinicians' smoking habits did not influence the training and the clinical practice in offering patients smoking cessation interventions.


Assuntos
Atitude do Pessoal de Saúde , Promoção da Saúde , Médicos Hospitalares/estatística & dados numéricos , Papel do Médico , Padrões de Prática Médica , Abandono do Hábito de Fumar , Fumar , Institutos de Câncer , Feminino , Pesquisas sobre Atenção à Saúde , Promoção da Saúde/métodos , Humanos , Itália , Masculino , Motivação , Padrões de Prática Médica/normas
18.
Support Care Cancer ; 24(1): 147-155, 2016 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-25957011

RESUMO

PURPOSE: This study examines the development and feasibility of a quality improvement strategy for the translation of evidence-based psychosocial care into clinical practice. METHODS: The project involved all staff (oncologists, psychologists, and nurses) of the participating centers. Recommendations concerned: improvement of clinician communication skills; use of a patient question prompt list; assignment of a specialist nurse to each patient; screening for psychological distress and social needs; opportunity to attend a Point of Information and Support. The implementation strategy hinged on context analysis and problem solving. Four to six visits were held in each center by the project team to assist staff in identifying obstacles, finding solutions, and strengthening motivation. The primary variable was the adherence percentage to the recommendations (proportion of subjects receiving each intervention). The number of centers that failed to reach the objective was also reported (adherence percentage <75%). RESULTS: Twenty-seven of twenty-eight centers completed the study. Lack of resources was the most commonly perceived barrier preimplementation. Five-hundred-forty-five clinicians were actively involved in the project and completed training. The adherence percentage for each recommendation was greater than 85% except for the question prompt list (78%; 95% CI, 73-83%), where seven centers did not reach the objective. CONCLUSIONS: Our findings demonstrate that evidence-based interventions to improve the psychosocial care of people with cancer can be implemented in a diverse range of oncology wards. This requires the involvement and motivation of the entire staff of the ward, support by an expert team, and promotion by policymakers.


Assuntos
Neoplasias/psicologia , Psicoterapia/métodos , Adulto , Comunicação , Estudos de Viabilidade , Feminino , Humanos , Pessoa de Meia-Idade , Melhoria de Qualidade
19.
Tumori ; 101(6): 650-6, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26045105

RESUMO

AIMS AND BACKGROUND: To evaluate postoperative pain (PoP) and quality of life (QoL) in patients undergoing open (O-) or laparoscopic (L-) retroperitoneal lymph node dissection (RPLND) for clinical stage I (CS I) and normal markers CS IIA nonseminomatous germ cell tumors. METHODS: Since March 2010, a prospective nonrandomized trial evaluated dynamic and rest (R) numeric pain scale (NPS) following patient-controlled analgesia and baseline (T0), 3-month (T3), and 6-month (T6) QoL status assessed by Functional Assessment of Cancer Therapy-General (FACT-G) questionnaire and the Italian-validated Functional Assessment of Chronic Illness Therapy (FACT-T-SG) at T6. Secondary endpoints included length of hospital stay (LHS), interval to recovery (ItR), complications, and oncologic outcomes. RESULTS: In March 2012, 69 (64 CS I) patients were enrolled. Five patients only chose O-RPLND. The PoP and complete QoL data are available in 41 and 56 patients, respectively. The R-NPS significantly improved in days 1-2 vs day 0 (p<0.0008). The FACT-G scores improved from baseline: the emotional well-being scale was the most relevant at T3 (+7.0, p = 0.0001) and T6 (+6.9, p = 0.0002). The FACT-TS-G indicated high satisfaction levels. Median LHS and ItR were 3 and 15 days. Six complications required an intervention. Nodal metastases were found in 14 (20.3%) patients. Following a median follow-up of 36 months, 6 (8.9%) patients relapsed (2/12 among pN+), and 8 patients (11.9%) underwent chemotherapy. All patients maintained antegrade ejaculation and are alive and disease-free. CONCLUSIONS: Almost all patients chose L-RPLND, which is associated with a rapid improvement of postoperative pain; QoL scores improved up to 6 months. The L-RPLND may be considered as an alternative only when performed in highly experienced centers.


Assuntos
Laparoscopia , Excisão de Linfonodo/métodos , Neoplasias Embrionárias de Células Germinativas/patologia , Neoplasias Embrionárias de Células Germinativas/cirurgia , Manejo da Dor , Dor Pós-Operatória/terapia , Qualidade de Vida , Neoplasias Testiculares/patologia , Neoplasias Testiculares/cirurgia , Idoso , Humanos , Excisão de Linfonodo/efeitos adversos , Linfocele/etiologia , Masculino , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Dor Pós-Operatória/etiologia , Estudos Prospectivos , Espaço Retroperitoneal
20.
Trials ; 16: 184, 2015 Apr 23.
Artigo em Inglês | MEDLINE | ID: mdl-25899519

RESUMO

BACKGROUND: Preliminary evidence suggests that palliative care may be useful for people with severe multiple sclerosis (MS). The aim of this study is to determine the effectiveness of a home-based palliative approach (HPA) for people with severe MS and their carers. METHODS/DESIGN: This is a single-blind randomized controlled trial with a nested qualitative study. Seventy-five severe MS-carer dyads are being randomized (at three centers, one in each area of Italy) to HPA or usual care (UC) in a 2:1 ratio. Each center has a specially trained team consisting of four professionals (physician, nurse, psychologist, social worker). The team makes a comprehensive assessment of the needs of the dyads. HPA content is then agreed on, discussed with the patient's caring physician, and delivered over six months. The intervention is not intended to replace existing services. At later visits, the team checks the HPA delivery and reviews/modifies it as necessary. HPA and UC dyads are assessed at home by a blind examiner at baseline, and three and six months later; they also receive monthly telephone interviews. Dyads assigned to UC receive the examiner's visits and telephone interviews, but not the team visits. Primary outcome measures are changes in symptoms (Palliative care Outcome Scale-Symptoms-MS, POS-S-MS), and quality of life (the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), not assessed in patients with severe cognitive compromise) at three and six months. Other outcomes are changes in patient functional status and mood; changes in carer quality of life, mood and caregiving burden; costs; incorporation with standard care; unplanned hospital admissions; referrals to hospice; and deaths. The experience of participants will be evaluated qualitatively by individual semi-structured interviews (HPA patients and carers) and focus group meetings (HPA patients' caring physicians). DISCUSSION: The results of our study will show whether the HPA is feasible and beneficial to people with severe MS and their carers living in the three Italian geographic areas. The nested qualitative study will add to the understanding of the strengths and limitations of the intervention. TRIAL REGISTRATION: The trial was registered with Current Controlled Trials (identifier: ISRCTN73082124) on 19 June 2014.


Assuntos
Protocolos Clínicos , Serviços de Assistência Domiciliar , Esclerose Múltipla/terapia , Cuidados Paliativos , Cuidadores , Humanos , Método Simples-Cego
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