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1.
Cancer ; 129(17): 2727-2740, 2023 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-37204189

RESUMO

BACKGROUND: Health-related quality of life (HRQOL) is a critical aspect to consider when making treatment decisions for patients with non-Hodgkin-lymphoma (NHL). This international study by the European Organisation for Research and Treatment of Cancer (EORTC) tested the psychometric properties of two newly developed measures for patients with high-grade (HG)- and low-grade (LG)-NHL: the EORTC QLQ-NHL-HG29 and the EORTC QLQ-NHL-LG20 to supplement the core questionnaire (EORTC QLQ-C30). METHODS: Overall, 768 patients with HG-NHL (N = 423) and LG-NHL (N = 345) from 12 countries completed the QLQ-C30, QLQ-NHL-HG29/QLQ-NHL-LG20 and a debriefing questionnaire at baseline, and a subset at follow-up for either retest (N = 125/124) or responsiveness to change (RCA; N = 98/49). RESULTS: Confirmatory factor analysis showed an acceptable to good fit of the 29 items of the QLQ-NHL-HG29 on its five scales (symptom burden [SB], neuropathy, physical condition/fatigue [PF], emotional impact [EI], and worries about health/functioning [WH]), and of the 20 items of the QLQ-NHL-LG20 on its four scales (SB, PF, EI, and WH). Completion took on average 10 minutes. Test-retest reliability, convergent validity, known-group comparisons, and RCA find satisfactory results of both measures. A total of 31%-78% of patients with HG-NHL and 22%-73% of patients with LG-NHL reported symptoms and/or worries (e.g., tingling in hands/feet, lack of energy, and worries about recurrence). Patients reporting symptoms/worries had substantially lower HRQOL compared to those without. DISCUSSION: The use of the EORTC QLQ-NHL-HG29 and QLQ-NHL-LG20 questionnaires in clinical research and practice will provide clinically relevant data to better inform treatment decision-making. PLAIN LANGUAGE SUMMARY: The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group developed two questionnaires. These questionnaires measure health-related quality of life. The questionnaires are for patients with high-grade or low-grade non-Hodgkin lymphoma. They are called the EORTC QLQ-NHL-HG29 and QLQ-NHL-LG20. The questionnaires are now internationally validated. This study demonstrates that the questionnaires are reliably and valid, which are important aspects of a questionnaire. The questionnaires can now be used in clinical trials and practice. With the information gathered from the questionnaires, patients and clinicians can better evaluate treatments and discuss the best choice for a patient.


Assuntos
Linfoma não Hodgkin , Neoplasias , Humanos , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Inquéritos e Questionários , Psicometria
2.
Pediatr Hematol Oncol ; 40(4): 382-394, 2023 May.
Artigo em Inglês | MEDLINE | ID: mdl-36094797

RESUMO

Announcing drug resistance is complex for pediatric oncologists because they have to provide a substantial amount of medical information while taking a major emotional impact on the parents into account. This study aimed to understand how these announcements are currently conducted and how pediatric oncologists adapt the information given to each family in situations where there is resistance to treatment. Semi-structured interviews were conducted with 15 pediatric oncologists (66.7% women, aged 44.7 years on average). Interviews were audio-recorded and a thematic content analysis was conducted. Announcements of drug resistance are stressful, as they are not well codified, difficult to anticipate, and pediatric oncologists have many issues about how best to behave and which words to choose. The majority of them believe that the severity, or even the incurability of the disease, and the offer of a therapeutic alternative are essential components of the information to pass on. Pediatric oncologists describe how they adapt their communication to each family, particularly in relation to parents' questions, and also to their reactions during the announcement. They also need to adapt to the prior acquaintance they may have with the families, and to previous exchanges. Finally, pediatric oncologists acknowledge their subjectivity when estimating the parents need in terms of information. Understanding the course of these announcements gives us another point of view at the issues involved in this announcement. Proposals to support pediatric oncologists in this difficult moment can be suggested: communication support tool, work in pairs and discussion group.


Assuntos
Neoplasias , Oncologistas , Criança , Humanos , Feminino , Masculino , Relações Profissional-Família , Pais/psicologia , Neoplasias/terapia , Comunicação
3.
Br J Haematol ; 197(4): 431-441, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35255152

RESUMO

Selecting the most appropriate chronic lymphocytic leukaemia (CLL) treatment is challenging. Patient-reported health-related quality of life (HRQoL) is therefore a critical aspect to consider. This international study by the European Organization for Research and Treatment of Cancer (EORTC) tested the psychometric properties of a newly developed measure for CLL patients: the EORTC QLQ-CLL17 to supplement the core questionnaire (EORTC QLQ-C30). Patients with CLL (n = 341) from 12 countries completed the QLQ-C30, QLQ-CLL17 and a debriefing questionnaire. Sociodemographic and clinical data were recorded from medical records. A high percentage (30%-66%) reported symptoms and/or worries (e.g. aches/pains in muscles, lack of energy and worry/fears about health). Confirmatory factor analysis showed an acceptable to good fit of the 17 items on the three scales (i.e. symptom burden, physical condition/fatigue and worries/fears about health and functioning). Completion took on average 8 min. Test-retest and convergent validity was demonstrated. The QLQ-CLL17 differentiated between patients with an Eastern Cooperative Oncology group (ECOG) performance of 0 versus 1-3 (p's < 0.01 and clinically relevant). The newly developed EORTC QLQ-CLL17 will increase sensitivity of HRQoL assessment in patients with CLL. Implementation of this questionnaire both in clinical research and practice will help to generate unique clinically relevant data to better inform CLL treatment decision-making.


Assuntos
Leucemia Linfocítica Crônica de Células B , Qualidade de Vida , Humanos , Dor , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários
4.
Curr Opin Oncol ; 34(4): 265-269, 2022 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-35730518

RESUMO

PURPOSE OF REVIEW: This literature review sets out to summarize knowledge on the impact of question prompt lists (QPLs) on patient-physician communication in oncology and to provide an account of current research on the development, adaptation, and implementation of this type of communication tool. RECENT FINDINGS: Provided with a QPL, patients seem to ask more questions, in particular on sensitive issues like those around the end-of-life period and they recall the information provided better. There is a need to adapt QPLs, taking account of divergences in attitudes towards illness, participation in decision-making, and discussions about the illness prognosis across cultures. QPLs may also need to be tailored to specific concerns of patients at the different stages in the care trajectory and to the particularities of each cancer type. These adaptations contribute to the effectiveness of the tool because they make it possible to tailor it to the challenges and constraints experienced in clinical practice. SUMMARY: QPLs are designed to enhance patients' communication with their physicians. Further research is required to develop QPLs suited to each cultural and clinical setting, involving health professionals so as to facilitate the implementation of these tools in routine practice.


Assuntos
Neoplasias , Participação do Paciente , Comunicação , Humanos , Neoplasias/terapia , Relações Médico-Paciente , Inquéritos e Questionários
5.
Clin Genet ; 102(1): 30-39, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35508697

RESUMO

Counseling for familial breast cancer focuses on communicating the gene test result (GENE) to counselees, but risk prediction models have become more complex by including non-genetic risk factors (NGRF) and polygenic risk scores (PRS). We examined genetic clinicians' confidence in counseling and counselees' psychosocial outcomes, using the BOADICEA risk prediction tool with different categories of risk factors as input. A prospective observational study in Dutch, French and German genetic clinics was performed including 22 clinicians, and 406 of 460 (88.3%) eligible cancer-unaffected women at high breast cancer risk assessed at pre-test and 350 (76.1%) at post-test. We performed multilevel analyses accounting for the clinician, and counselees' characteristics. Overall, risk estimates category by GENE versus GENE+ NGRF, or GENE+NGRF+PRS differed in 11% and 25% of counselees, respectively. In multilevel analyses, clinicians felt less confident in counseling when the full model provided lower breast cancer risks than GENE (i.e., in 8% of cases). Older counselees expressed higher breast cancer risk perception and worries about the hereditary predisposition when the full model provided higher breast cancer risks than GENE only. Genetic clinicians appear confident with breast cancer risk comprehensive models, which seem only to affect perceptions of older counselees.


Assuntos
Neoplasias da Mama , Aconselhamento Genético , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/genética , Feminino , Aconselhamento Genético/psicologia , Predisposição Genética para Doença , Humanos , Estudos Prospectivos , Inquéritos e Questionários
6.
Hered Cancer Clin Pract ; 20(1): 38, 2022 Dec 19.
Artigo em Inglês | MEDLINE | ID: mdl-36536421

RESUMO

BACKGROUND: Women carrying BRCA1/2 pathogenic variants are exposed to elevated risks of developing breast cancer (BC) and are faced by a complex decision-making process on preventative measures, i.e., risk-reducing mastectomy (RRM), and intensified breast surveillance (IBS). In this prospective cohort study we investigated the effect of anxiety, personality factors and coping styles on the decision-making process on risk management options in women with pathogenic variants in BRCA1/2. METHODS: Breast cancer unaffected and affected women with a pathogenic variant in the BRCA1 or BRCA2 gene were psychologically evaluated immediately before (T0), 6 to 8 weeks (T1) and 6 to 8 months (T2) after the disclosure of their genetic test results. Uptake of RRM and IBS was assessed at T2. Psychological data were gathered using questionnaires on risk perception, personality factors, coping styles, decisional conflict, depression and anxiety, including the Hospital Anxiety and Depression Scale (HADS). We performed tests on statistical significance and fitted a logistic regression based on significance level. RESULTS: A total of 98 women were included in the analysis. Baseline anxiety levels in women opting for RRM were high but decreased over time, while they increased in women opting for intensified breast surveillance (IBS). Elevated levels of anxiety after genetic test result disclosure (T1) were associated with the decision to undergo RRM (p < 0.01; OR = 1.2, 95% CI = 1.05-1.42), while personal BC history and personality factors seemed to be less relevant. CONCLUSIONS: Considering psychosocial factors influencing the decision-making process of women with pathogenic variants in BRCA1/2 may help improving their genetic and psychological counselling. When opting for IBS they may profit from additional medical and psychological counselling. TRIAL REGISTRATION: Retrospectively registered at the German Clinical Trials Register under DRKS00027566 on January 13, 2022.

7.
Pediatr Hematol Oncol ; 39(2): 132-144, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34392770

RESUMO

Breaking bad news in pediatric oncology covers widely diverse clinical situations. The aim of this study was to highlight the specificities of the announcement of treatment resistance as perceived by pediatric oncologists, particularly in comparison with the disclosure of a cancer diagnosis. Semi-structured interviews were conducted in two pediatric oncology departments in France, with 15 pediatric oncologists (66.7% were women, aged 44.7 years on average). Interviews were audio-recorded and transcribed and a thematic content analysis was conducted. Most pediatric oncologists reported emotional difficulties in announcing treatment resistance. Some of them mentioned a personal need to accept resistance to treatment and to mourn the child's chances of recovery, and reported feelings of medical failure. This disclosure was considered more difficult than the announcement of the cancer diagnosis because it was associated with less optimism and more complex and fewer therapeutic options. The attachment bond created with families in the course of treatment seemed to exacerbate the emotional difficulties associated with this announcement. In conclusion, resistance to treatment has an impact on prognosis. It makes it more uncertain. Its announcement for pediatric oncologists is a turning point that affects their initial optimistic perspective. Their emotional difficulties are accentuated by the attachment that has been created with the families. Focusing on difficulties experienced by pediatricians could help to improve parent-pediatrician communication.


Assuntos
Oncologistas , Relações Médico-Paciente , Adulto , Criança , Comunicação , Emoções , Feminino , Humanos , Oncologia , Oncologistas/psicologia
8.
BMC Palliat Care ; 20(1): 61, 2021 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-33865379

RESUMO

BACKGROUND: Team-based and timely integrated palliative care is a gold standard of care in oncology, but issues concerning its optimal organization remain. Palliative Care in Day-Hospital (PCDH) could be one of the most efficient service model of palliative care to deliver interdisciplinary and multidimensional care addressing the complex supportive care needs of patients with advanced cancer. We hypothesize that, compared to conventional outpatient palliative care, PCDH allows the clinical benefits of palliative care to be enhanced. METHODS/DESIGN: This study is a multicentre parallel group trial with stratified randomization. Patient management in PCDH will be compared to conventional outpatient palliative care. The inclusion criteria are advanced cancer patients referred to a palliative care team with an estimated life expectancy of more than 2 months and less than 1 year. The primary endpoint is health-related quality of life with deterioration-free survival based on the EORTC QLQ-C30 questionnaire. The secondary objectives are the following: increase in patient satisfaction with care using the EORTC PATSAT-C33 and OUT-PATSAT7 questionnaires, better understanding of the prognosis using the PTPQ questionnaire and advance care planning; decrease in the need for supportive care among relatives using the SCNS-P&C-F questionnaire, and reduction in end-of-life care aggressiveness. Patients will complete one to five questionnaires on a tablet before each monthly visit over 6 months and will be followed for 1 year. A qualitative study will take place, aiming to understand the specificity of palliative care management in PCDH. Cost-effectiveness, cost-utility and, an additional economic evaluation based on capability approach will be conducted from a societal point of view. DISCUSSION: The first strength of this study is that it combines the main relevant outcomes assessing integrated palliative care; patient quality of life and satisfaction; discussion of the prognosis and advance care planning, family well-being and end-of-life care aggressiveness. The second strength of the study is that it is a mixed-method study associating a qualitative analysis of the specificity of PCDH organization, with a medical-economic study to analyse the cost of care. TRIAL REGISTRATION: Name of the registry: IDRCB 2019-A03116-51 Trial registration number: NCT04604873 Date of registration: October 27, 2020 URL of trial registry record.


Assuntos
Neoplasias , Assistência Terminal , Hospitais , Humanos , Estudos Multicêntricos como Assunto , Neoplasias/terapia , Cuidados Paliativos , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto
9.
Psychooncology ; 29(3): 550-556, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31823434

RESUMO

BACKGROUND: Increasingly complex genetics counseling requires guidance to facilitate counselees' psychosocial adjustment. We explored networks of inter-relationships among coping strategies and specific psychosocial difficulties in women tested for hereditary breast or ovarian cancer. METHODS: Of 752 counselees consecutively approached, 646 (86%) completed questionnaires addressing coping strategies (Brief-COPE) and psychosocial difficulties (PAHC) after the initial genetic consultation (T1), and 460 (61%) of them again after the test result (T2). We applied network analysis comparing partial correlations among these questionnaire scales, according to the type of genetic test - single gene-targeted or multigene panel, test result and, before and after testing. RESULTS: Overall, 98 (21.3%), 259 (56.3%), 59 (12.8%) and 44 (9.6%) women received a pathogenic variant, uninformative negative (panel testing), variant of uncertain significance (VUS) or true negative (targeted testing) result, respectively. In most networks, connections were strongest between avoidance and general negative emotions. Cognitive restructuring was inter-related to lower psychosocial difficulties. Avoidance and familial/social relationship difficulties were strongly related in women receiving a pathogenic variant. Stronger inter-relationships were also noticed between avoidance and worries about personal cancer and concerns about hereditary predisposition in women receiving a VUS result. Differences in the prominence of inter-relationships were observed by type of testing and assessment time. CONCLUSIONS: Network analysis may be fruitful to highlight prominent inter-relationships among coping strategies and psychosocial difficulties, in women tested for HBOC susceptibility, offering guidance for counseling.


Assuntos
Neoplasias da Mama/psicologia , Aconselhamento Genético/psicologia , Predisposição Genética para Doença/psicologia , Síndromes Neoplásicas Hereditárias/psicologia , Neoplasias Ovarianas/psicologia , Adulto , Ansiedade/psicologia , Neoplasias da Mama/diagnóstico , Feminino , Testes Genéticos/estatística & dados numéricos , Humanos , Pessoa de Meia-Idade , Neoplasias Ovarianas/diagnóstico , Qualidade de Vida/psicologia , Inquéritos e Questionários , Saúde da Mulher/estatística & dados numéricos
10.
Eur J Cancer Care (Engl) ; 29(6): e13306, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32902021

RESUMO

OBJECTIVE: The mechanisms associating physician empathy (PE) with patient outcomes remain unclear. PE can be considered as a whole (one process) or three subcomponents can be identified (an establishing rapport process; an emotional process; a cognitive process). The objective was to test two competitive models of PE in cancer care: a three-process model adapted from Neumann's model versus a one-process model, with the use of the Consultation and Relational Empathy measure (CARE). METHODS: The CARE was completed by 488 oesogastric cancer patients from the national French database FREGAT. A confirmatory factor analysis (CFA) and a bifactor model were performed to test the two competitive models. RESULTS: The CFA revealed that the one-factor structure showed a moderate fit to the data whereas the three-factor structure showed a good fit. However, the bifactor model favoured unidimensionality. CONCLUSION: We cannot provide a clear-cut conclusion about whether PE should be considered as on unique process or not. Further work is still needed. Meanwhile, one should not preclude the use of three subscores in cancer care if specific elements of the encounter need to be assessed.


Assuntos
Empatia , Neoplasias , Atitude do Pessoal de Saúde , Comunicação , Humanos , Neoplasias/terapia , Relações Médico-Paciente , Encaminhamento e Consulta
11.
Eur J Cancer Care (Engl) ; 29(1): e13173, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31571365

RESUMO

BACKGROUND: We performed a comprehensive assessment of the psychometrics of the "Psychosocial Aspects in Hereditary Cancer" (PAHC) questionnaire in French, German and Spanish. METHODS: Women consecutively approached in Cancer Genetic Clinics completed the PAHC, distress and satisfaction questionnaires at pre-testing (T1) and after test result disclosure (T2). In addition to standard psychometric attributes, we assessed the PAHC ability to respond to change (i.e. improvement or deterioration from T1 to T2) in perceived difficulties and computed minimal important differences (MID) in PAHC scores as compared with self-reported needs for additional counselling. RESULTS: Of 738 eligible counselees, 214 (90%) in France (Paris), 301 (92%) in Germany (Cologne) and 133 (77%) in Spain (Barcelona) completed the PAHC. A six-factor revised PAHC model yielded acceptable CFA goodness-of-fit indexes and good all scales internal consistencies. PAHC scales demonstrated expected conceptual differences with distress and satisfaction with counselling. Different levels of psychosocial difficulties were evidenced between counselees' subgroups and over time (p-values < .05). MID estimates ranged from 8 to 15 for improvement and 9 to 21 for deterioration. CONCLUSION: The PAHC French, German and Spanish versions are reliable and valid for evaluating the psychosocial difficulties of women at high BC risk attending genetic clinics.


Assuntos
Neoplasias da Mama/psicologia , Aconselhamento Genético/psicologia , Predisposição Genética para Doença/psicologia , Síndrome Hereditária de Câncer de Mama e Ovário/psicologia , Angústia Psicológica , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/genética , Análise Fatorial , Feminino , França , Testes Genéticos , Alemanha , Humanos , Pessoa de Meia-Idade , Diferença Mínima Clinicamente Importante , Avaliação das Necessidades , Psicometria , Reprodutibilidade dos Testes , Espanha , Inquéritos e Questionários , Traduções , Adulto Jovem
12.
Eur J Cancer Care (Engl) ; 28(6): e13145, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31433533

RESUMO

OBJECTIVE: The EORTC QOL Group has recently completed the cross-cultural development and validation of a standalone measure of spiritual well-being (SWB) for cancer patients receiving palliative care: the EORTC QLQ-SWB32. The measure includes four scales: Relationships with Others, Relationship with Self, Relationship with Someone or Something Greater, and Existential, plus a Global-SWB item. This paper reports on further research investigating relationships between sex, age and SWB for patients receiving palliative care for cancer-adjusting for other socio-demographic, clinical and function variables, including WHO performance status and EORTC QLQ-C15-PAL emotional and physical function scores. METHODS: Cross-sectional data from the validation study were used, and chi-square, independent t tests, Mann-Whitney U tests and multiple regression analyses applied. RESULTS: The study included 451 participants with advanced and incurable cancer, from 14 countries. Adjusted analyses found better scores for female participants than males on three of the four EORTC QLQ-SWB32 subscales; Relationship with others, Relationship with Someone or Something Greater and Existential plus Global-SWB. Older age was positively associated with better Relationship with Self. CONCLUSION: The findings from our participants suggest that it might be beneficial if healthcare providers seeking to address patients' spiritual needs pay particular attention to male patients, younger patients and those with poor emotional functioning.


Assuntos
Neoplasias/psicologia , Cuidados Paliativos , Espiritualidade , Inquéritos e Questionários/normas , Fatores Etários , Idoso , Estudos Transversais , Emoções , Existencialismo , Feminino , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Neoplasias/terapia , Qualidade de Vida , Autoimagem , Fatores Sexuais , Fatores Socioeconômicos
13.
Health Qual Life Outcomes ; 16(1): 228, 2018 Dec 11.
Artigo em Inglês | MEDLINE | ID: mdl-30537955

RESUMO

BACKGROUND: Interpretation of differences or changes in patient-reported outcome scores should not only consider statistical significance, but also clinical relevance. Accordingly, accurate determination of the minimally important difference (MID) is crucial to assess the effectiveness of health care interventions, as well as for sample size calculation. Several methods have been proposed to determine the MID. Our aim was to review the statistical methods used to determine MID in patient-reported outcome (PRO) questionnaires in cancer patients, focusing on the distribution- and anchor-based approaches and to present the variability of criteria used as well as possible limitations. METHODS: We performed a systematic search using PubMed. We searched for all cancer studies related to MID determination on a PRO questionnaire. Two reviewers independently screened titles and abstracts to identify relevant articles. Data were extracted from eligible articles using a predefined data collection form. Discrepancies were resolved by discussion and the involvement of a third reviewer. RESULTS: Sixty-three articles were identified, of which 46 were retained for final analysis. Both distribution- and anchor-based approaches were used to assess the MID in 37 studies (80.4%). Different time points were used to apply the distribution-based method and the most frequently reported distribution was the 0.5 standard deviation at baseline. A change in a PRO external scale (N = 13, 30.2%) and performance status (N = 15, 34.9%) were the most frequently used anchors. The stability of the MID over time was rarely investigated and only 28.2% of studies used at least 3 assessment timepoints. The robustness of anchor-based MID was questionable in 37.2% of the studies where the minimal number of patients by anchor category was less than 20. CONCLUSION: Efforts are needed to improve the quality of the methodology used for MID determination in PRO questionnaires used in oncology. In particular, increased attention to the sample size should be paid to guarantee reliable results. This could increase the use of these specific thresholds in future studies.


Assuntos
Oncologia/métodos , Neoplasias/psicologia , Medidas de Resultados Relatados pelo Paciente , Humanos , Psicometria , Qualidade de Vida
14.
Support Care Cancer ; 26(8): 2551-2560, 2018 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-29732482

RESUMO

PURPOSE: The EORTC IN-PATSAT32 is a patient-reported outcome measure (PROM) to assess cancer patients' satisfaction with in-patient health care. The aim of this study was to investigate whether the initial good measurement properties of the IN-PATSAT32 are confirmed in new studies. METHODS: Within the scope of a larger systematic review study (Prospero ID 42017057237), a systematic search was performed of Embase, Medline, PsycINFO, and Web of Science for studies that investigated measurement properties of the IN-PATSAT32 up to July 2017. Study quality was assessed, data were extracted, and synthesized according to the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology. RESULTS: Nine studies were included in this review. The evidence on reliability and construct validity were rated as sufficient and of the quality of the evidence as moderate. The evidence on structural validity was rated as insufficient and of low quality. The evidence on internal consistency was indeterminate. Measurement error, responsiveness, criterion validity, and cross-cultural validity were not reported in the included studies. Measurement error could be calculated for two studies and was judged indeterminate. CONCLUSION: In summary, the IN-PATSAT32 performs as expected with respect to reliability and construct validity. No firm conclusions can be made yet whether the IN-PATSAT32 also performs as well with respect to structural validity and internal consistency. Further research on these measurement properties of the PROM is therefore needed as well as on measurement error, responsiveness, criterion validity, and cross-cultural validity. For future studies, it is recommended to take the COSMIN methodology into account.


Assuntos
Neoplasias/terapia , Satisfação do Paciente/estatística & dados numéricos , Psicometria/métodos , Europa (Continente) , Humanos , Neoplasias/patologia , Medidas de Resultados Relatados pelo Paciente , Pesquisa Qualitativa , Inquéritos e Questionários
15.
Qual Life Res ; 27(2): 333-345, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-29127596

RESUMO

PURPOSE: This paper describes the international, cross-cultural development of four disease-specific EORTC QoL questionnaires, to supplement the EORTC QLQ-C30, for patients with Hodgkin lymphoma (HL), high- or low-grade non-Hodgkin lymphoma (HG/LG-NHL), and CLL. METHODS: Questionnaire development was conducted according to guidelines from the EORTC Quality of Life Group. Phase I comprised generation of QoL issues relevant to patients. Phase II included operationalization and assessment of item relevance. In phase III, items were pretested in a cross-cultural sample. RESULTS: In Phase I, 75 issues were identified through focus groups and systematic literature searches. Interviews with 80 health-care professionals and 245 patients resulted in a provisional module of 38 items (phase II) representing items relevant for all or at least one of the four malignancies. In Phase III, this was tested in 337 patients from five European countries and resulted in a questionnaire with 27 items for HL (EORTC QLQ-HL27), 29 items for HG-NHL (EORTC QLQ-NHL-HG29), 20 items for LG-NHL (EORTC QLQ-NHL-LG20) and 17 items for CLL (EORTC QLQ-CLL17). CONCLUSIONS: This study provides four new EORTC modules for use in clinical research and routine practice in conjunction with the EORTC QLQ-C30 for assessing QoL in patients with lymphoma and CLL.


Assuntos
Doença de Hodgkin/epidemiologia , Leucemia Linfocítica Crônica de Células B/epidemiologia , Linfoma não Hodgkin/epidemiologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos de Pesquisa , Inquéritos e Questionários , Adulto Jovem
17.
Support Care Cancer ; 25(5): 1485-1494, 2017 05.
Artigo em Inglês | MEDLINE | ID: mdl-28025709

RESUMO

PURPOSE: Communication between patients and professionals is one major aspect of the support offered to cancer patients. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group (QLG) has developed a cancer-specific instrument for the measurement of different issues related to the communication between cancer patients and their health care professionals. METHODS: Questionnaire development followed the EORTC QLG Module Development Guidelines. A provisional questionnaire was pre-tested (phase III) in a multicenter study within ten countries from five cultural areas (Northern and South Europe, UK, Poland and Taiwan). Patients from seven subgroups (before, during and after treatment, for localized and advanced disease each, plus palliative patients) were recruited. Structured interviews were conducted. Qualitative and quantitative analyses have been performed. RESULTS: One hundred forty patients were interviewed. Nine items were deleted and one shortened. Patients' comments had a key role in item selection. No item was deleted due to just quantitative criteria. Consistency was observed in patients' answers across cultural areas. The revised version of the module EORTC QLQ-COMU26 has 26 items, organized in 6 scales and 4 individual items. CONCLUSIONS: The EORTC COMU26 questionnaire can be used in daily clinical practice and research, in various patient groups from different cultures. The next step will be an international field test with a large heterogeneous group of cancer patients.


Assuntos
Comunicação , Pessoal de Saúde/psicologia , Pacientes/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Inquéritos e Questionários
18.
Oncology ; 90(3): 151-9, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-26882537

RESUMO

OBJECTIVE: We assessed whether breast cancer survivors' (BCSs) supportive care needs, posttraumatic growth (positive psychological changes) and satisfaction with doctors' interpersonal skills could be related to physical activity (PA). METHODS: A total of 426 BCSs were approached during the last week of treatment. Eight months later, 278 (65%) provided information on their PA levels. Ordinal logistic multiple regressions were performed. RESULTS: PA levels included no PA (n = 68), some PA (n = 83), high PA levels more than twice or more than 2 h per week (n = 127). The multivariate model significantly explained 13% of PA variance (p = 0.001). An increase in posttraumatic growth total scores (proportional OR = 1.310; p < 0.05) and a decrease in physical and daily living supportive care needs subscale scores (proportional OR = 0.980; p < 0.001) and in satisfaction with doctors' interpersonal skill scores (proportional OR = 0.898; p < 0.05) were significantly associated with an increase in the likelihood of performing higher levels of PA. A lower educational level was associated with a decrease in the likelihood of performing PA. CONCLUSION: The prevalence of PA in BCSs should be improved. Positive psychological changes after a breast cancer experience might contribute to performing PA. Encouraging PA needs to be accompanied by the alleviation of physical symptoms.


Assuntos
Neoplasias da Mama/psicologia , Comunicação , Atividade Motora , Satisfação do Paciente , Relações Médico-Paciente , Sobreviventes/psicologia , Adulto , Idoso , Ansiedade/etiologia , Ansiedade/prevenção & controle , Neoplasias da Mama/terapia , Depressão/etiologia , Depressão/prevenção & controle , Escolaridade , Feminino , Humanos , Modelos Logísticos , Pessoa de Meia-Idade , Estudos Prospectivos , Fatores de Tempo
19.
Rev Infirm ; 222: 24-6, 2016.
Artigo em Francês | MEDLINE | ID: mdl-27317818

RESUMO

All cancers have psychological and social repercussions which can impact on the patient's sexual quality of life. While the subject is still taboo, support care, which involves different professionals working together, is increasingly offering patients the opportunity to talk and become informed about these issues.


Assuntos
Neoplasias/fisiopatologia , Neoplasias/psicologia , Disfunções Sexuais Fisiológicas/terapia , Disfunções Sexuais Psicogênicas/terapia , Apoio Social , Humanos , Qualidade de Vida , Disfunções Sexuais Fisiológicas/etiologia , Disfunções Sexuais Psicogênicas/etiologia
20.
BMC Cancer ; 15: 394, 2015 May 12.
Artigo em Inglês | MEDLINE | ID: mdl-25963161

RESUMO

BACKGROUND: A care pathway is defined as patient-focused global care that addresses temporal (effective and coordinated management throughout the illness) and spatial issues (treatment is provided near the health territory in or around the patient's home). Heterogeneity of the care pathways in breast cancer (BC) is presumed but not well evaluated. The OPTISOINS01 study aims to assess every aspect of the care pathway for early BC patients using a temporal and spatial scope. METHODS/DESIGN: An observational, prospective, multicenter study in a regional health territory (Ile-de-France, France) in different types of structures: university or local hospitals and comprehensive cancer centers. We will include and follow during 1 year 1,000 patients. The study consists of 3 work-packages: - Cost of pathway The aim of this WP is to calculate the overall costs of the early BC pathway at 1 year from different perspectives (society, health insurance and patient) using a cost-of-illness analysis. Using a bottom-up method, we will assess direct costs, including medical direct costs and nonmedical direct costs (transportation, home modifications, home care services, and social services), and indirect costs (loss of production). - Patient satisfaction and work reintegration Three questionnaires will assess the patients' satisfaction and possible return to work: the occupational questionnaire for employed women; the questionnaire on the need for supportive care, SCNS-SF34 ('breast cancer' module, SCNS-BR8); and the OUTPASSAT-35 questionnaire. - Quality, coordination and access to innovation Quality will be evaluated based on visits and treatment within a set period, whether the setting offers a multidisciplinary consultative framework, the management by nurse coordinators, the use of a personalized care plan, the provision of information via documents about treatments and the provision of supportive care. The coordination between structures and caregivers will be evaluated at several levels. Day surgery, home hospitalization and one-stop breast clinic visits will be recorded to assess the patient's access to innovation. DISCUSSION: The assessment of care pathways encourages the implementation of new payment models. Our approach could help health care professionals and policymakers to establish other cost-of-illness studies and plan the allocation of resources on a patient basis rather than a visit basis.


Assuntos
Neoplasias da Mama/terapia , Institutos de Câncer/normas , Melhoria de Qualidade , Gerenciamento Clínico , Feminino , Humanos , Estudos Multicêntricos como Assunto , Estudos Observacionais como Assunto , Assistência ao Paciente , Satisfação do Paciente , Estudos Prospectivos , Qualidade de Vida , Inquéritos e Questionários
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