RESUMEN
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.
Asunto(s)
Poliposis Adenomatosa del Colon , Neoplasias Colorrectales , Proctocolectomía Restauradora , Humanos , Calidad de Vida , Poliposis Adenomatosa del Colon/cirugía , Poliposis Adenomatosa del Colon/patología , Neoplasias Colorrectales/prevención & control , Neoplasias Colorrectales/cirugía , ColectomíaRESUMEN
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 .
Asunto(s)
Implantes de Mama , Neoplasias de la Mama , Mamoplastia , Humanos , Femenino , Pezones/cirugía , Estudios Retrospectivos , Mastectomía/métodos , Neoplasias de la Mama/cirugía , Mamoplastia/métodos , Satisfacción Personal , Resultado del Tratamiento , Satisfacción del PacienteRESUMEN
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.
Asunto(s)
Actitud del Personal de Salud , Conocimientos, Actitudes y Práctica en Salud , Personal de Salud/psicología , Neoplasias/terapia , Medición de Resultados Informados por el Paciente , Adulto , Instituciones Oncológicas , Femenino , Humanos , Italia , Modelos Logísticos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Encuestas y CuestionariosRESUMEN
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.
Asunto(s)
Motivación , Médicos , Humanos , Consentimiento Informado , Oncología Médica , Proyectos de InvestigaciónRESUMEN
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.
Asunto(s)
COVID-19 , Neoplasias Colorrectales , COVID-19/epidemiología , Control de Enfermedades Transmisibles , Humanos , Pandemias , Calidad de Vida/psicología , Sistema de Registros , SARS-CoV-2 , Encuestas y Cuestionarios , SíndromeRESUMEN
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.
Asunto(s)
Antineoplásicos , Neoplasias de la Mama , Humanos , Femenino , Proyectos Piloto , Neoplasias de la Mama/tratamiento farmacológico , Alopecia/inducido químicamente , Imagen Corporal , Antineoplásicos/efectos adversosRESUMEN
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.
Asunto(s)
Neoplasias de la Mama , Adulto , Anciano , Neoplasias de la Mama/patología , Neoplasias de la Mama/terapia , Femenino , Humanos , Italia , Persona de Mediana Edad , Investigación CualitativaRESUMEN
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.
Asunto(s)
Inhibidores de la Aromatasa/uso terapéutico , Neoplasias de la Mama/tratamiento farmacológico , Posmenopausia/psicología , Calidad de Vida/psicología , Anciano , Anciano de 80 o más Años , Inhibidores de la Aromatasa/efectos adversos , Neoplasias de la Mama/patología , Neoplasias de la Mama/psicología , Neoplasias de la Mama/cirugía , Quimioterapia Adyuvante , Femenino , Humanos , Estudios Longitudinales , Persona de Mediana Edad , Estadificación de Neoplasias , Encuestas y Cuestionarios , Resultado del TratamientoRESUMEN
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.
Asunto(s)
Oncología Médica/métodos , Participación del Paciente/métodos , Medición de Resultados Informados por el Paciente , Instituciones Oncológicas/organización & administración , Estudios Transversales , Estudios de Factibilidad , Humanos , Investigación Cualitativa , Calidad de Vida , Proyectos de Investigación , Evaluación de SíntomasRESUMEN
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.
Asunto(s)
Proteína BRCA1/genética , Proteína BRCA2/genética , Neoplasias de la Mama/cirugía , Neoplasias Ováricas/cirugía , Conducta de Reducción del Riesgo , Adulto , Neoplasias de la Mama/genética , Conducta de Elección , Estudios de Cohortes , Femenino , Heterocigoto , Humanos , Mastectomía/psicología , Persona de Mediana Edad , Mutación , Neoplasias Ováricas/genética , Salpingectomía/psicología , Encuestas y Cuestionarios , Espera VigilanteRESUMEN
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.
Asunto(s)
Servicios de Atención de Salud a Domicilio , Esclerosis Múltiple/patología , Esclerosis Múltiple/terapia , Cuidados Paliativos/métodos , Actividades Cotidianas , Cuidados Posteriores , Anciano , Cuidadores , Progresión de la Enfermedad , Femenino , Personas Imposibilitadas , Humanos , Italia , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/mortalidad , Análisis Multivariante , Calidad de Vida , Índice de Severidad de la Enfermedad , Resultado del TratamientoRESUMEN
BACKGROUND: What does it mean to adjust to a liver transplant? Quality of life research has offered an impairment model, defining adjustment as the absence of diagnosed psychological disorder or of limitations in physical functioning. Recently emerging research on posttraumatic growth testifies the prevalence of positive life changes following the life-threatening illnesses. The present study aimed to verify the presence of the posttraumatic growth process in liver transplant patients and its relationship with traditional quality of life. METHODS: The research was a longitudinally descriptive study. A sample of 233 liver transplant patients were assessed with the Posttraumatic Growth Inventory and the Functional Assessment of Chronic Illness Therapy General. RESULTS: Over 50% of patients showed moderate-high levels in all dimensions of the Posttraumatic Growth Inventory. Further posttraumatic growth is correlated with the functional and social dimensions of quality of life construct and not with physical and emotional functioning. CONCLUSION: These results confirmed that posttraumatic growth is related to a different definition of well-being than the one traditionally used in the assessment of quality of life. Adjustment to liver transplant is a complex and systemic process, which requires a multidisciplinary approach to be able to support and encourages adaptation through all the needed functional elements. An interesting perspective is offered by the narrative medicine approach, that highlighted the importance to pay specific attention to the words and expression used by patients related to changes in life and not only to traditional words reporting physical status.
Asunto(s)
Adaptación Psicológica , Trasplante de Hígado/psicología , Crecimiento Psicológico Postraumático , Calidad de Vida/psicología , Receptores de Trasplantes/psicología , Receptores de Trasplantes/estadística & datos numéricos , Adolescente , Adulto , Anciano , Femenino , Humanos , Italia , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Adulto JovenRESUMEN
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.
Asunto(s)
Neoplasias/psicología , Psicoterapia/métodos , Adulto , Comunicación , Estudios de Factibilidad , Femenino , Humanos , Persona de Mediana Edad , Mejoramiento de la CalidadRESUMEN
OBJECTIVE: The present study is the result of theory-driven research investigating the role of the search for and presence of meaning in enhancing both mental adjustment and eudaimonic well-being in cancer patients. METHOD: A cross-sectional study involved 266 cancer patients currently in the treatment and management phase of their illness. Data were collected by a written questionnaire. The search for meaning was assessed with the Seeking of Noetic Goals Test, and the presence of meaning was assessed using the Purpose in Life Test. Mental adjustment to a cancer diagnosis was assessed by two subscales of the Italian version of the Mini-Mental Adjustment to Cancer Scale, and eudaimonic well-being was assessed with the Psychological Well-Being Scale. Correlation and mediation analyses based on five thousand bootstrapping samples were performed. RESULTS: The mediation analyses showed that the presence of meaning totally or partially mediated the effect of the search for meaning on both mental adjustment and eudaimonic well-being. Further correlation analyses showed a high negative correlation between eudaimonic well-being and hopelessness. SIGNIFICANCE OF RESULTS: Our results appear relevant from both the theoretical and clinical points of view. They support a deeper understanding of the combined contribution of the search for and presence of meaning in promoting well-being in cancer patients. Simultaneously, they are consistent with suggestions from recent studies on the clinical psychology of posttraumatic growth and emphasize the relevance of eudaimonic well-being as a protective factor for hopelessness.
Asunto(s)
Ajuste Emocional , Acontecimientos que Cambian la Vida , Neoplasias/psicología , Adaptación Psicológica , Estudios Transversales , Humanos , Neoplasias/terapia , Encuestas y CuestionariosRESUMEN
BACKGROUND: The SIMS-Trial (ISRCTN81072971) proved the effectiveness, in terms of patient's knowledge and care satisfaction, of an add-on information aid (personal interview with a physician using a navigable CD and take-home booklet) in 120 newly diagnosed patients with multiple sclerosis (MS) from five Italian centres. OBJECTIVE: To scrutinize the experience of SIMS-Trial participants in order to gain better understanding of the effectiveness of the information aid and its components. DESIGN: We performed (i) nine individual semi-structured interviews with a purposeful sample of SIMS-Trial patients who received the information aid, (ii) focus group meeting (FGM) with the physicians who conducted the personal interview, and (iii) FGM with patients' caring neurologists. RESULTS: Patients' experience with the information aid was positive as it enhanced their understanding of their disease, being viewed as a guided tour of their medical condition. The physicians who conducted the personal interviews were also positive in their overall evaluation but noted an initial difficulty in using the CD. The caring neurologists had limited direct experience of the aid, and their views were confined to utility of the information aid in general. All participants considered the combination of personal interview, CD navigation and take-home booklet essential, but urged a more flexible scheduling of the personal interview. It also emerged that some content required revision and that the aid was unsuitable for patients with primary progressive MS. CONCLUSIONS: The results of the study further support the value of the aid and also provide important indications for improving it and refining indications for use.
Asunto(s)
Esclerosis Múltiple/terapia , Educación del Paciente como Asunto/métodos , Pacientes/psicología , Médicos/psicología , Adulto , Ensayos Clínicos como Asunto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Factores de TiempoRESUMEN
The "Fondazione IRCCS Istituto Nazionale dei Tumori" ( National Tumour Institute) in Milan (Italy) offers mediation services aimed at restoring communication between patients and healthcare professionals, when their relationship has been altered by a conflict during the diagnosis or treatment process. A method derived from transformative mediation is used. The purpose of mediation is not to examine clinical aspects, nor to identify who is right and who is wrong. Individual sessions are often sufficient to reduce litigation.
Asunto(s)
Academias e Institutos , Disentimientos y Disputas , Negociación , Neoplasias/diagnóstico , Neoplasias/terapia , Humanos , Italia , Satisfacción del PacienteRESUMEN
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.
Asunto(s)
COVID-19 , Neoplasias , Humanos , Pandemias , Neoplasias/terapia , Neoplasias/psicología , Encuestas y Cuestionarios , ItaliaRESUMEN
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.
RESUMEN
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.