RESUMO
Though the adjustment of bereaved children is increasingly investigated through quantitative studies, their intimate representations regarding the loss of their parent remain unknown. This qualitative study aims at exploring how they give meaning to this experience. Nondirective interviews with bereaved children were conducted and submitted to an interpretative phenomenological analysis. Fourteen children (8 boys, 6 girls, mean age = 8.5 years) were recruited. Seven major themes depicting their grief experience were identified. The importance of the surviving parent is critically highlighted. Findings suggest that the remaining parent could become a fundamental actor in providing grief support for the bereaved children.
Assuntos
Luto , Crianças Órfãs/psicologia , Neoplasias/psicologia , Relações Pais-Filho , Apoio Social , Criança , Feminino , Humanos , MasculinoRESUMO
This qualitative study aimed to explore cancer patients' perceived tolerance of side effects in phase I drug trials. Patients with solid tumours receiving molecularly targeted agents with/without chemotherapy were eligible for inclusion. In-depth semi-structured interviews were carried out with 17 patients with a median [range] age of 63 [41-72] years. Treatment was discontinued in seven patients. Verbatim transcripts of the audio-taped interviews were analysed using a constructivist grounded theory approach. Four conceptual categories emerged from data analysis, labelled "suffering from side effects" comprising a range of symptoms, psychosocial or role disturbances; "striving to cope with side effects" reflecting psychological strategies for managing side effects; "hoping" reflecting expectations about treatment efficacy and relief from side effects; and "appraisal of care." Among patients remaining in the trial, treatment was currently perceived as fairly tolerable. For most respondents, whether still in a trial or not, treatment discontinuation could not be justified by the non-tolerance of treatment side effects. These results question the adequacy of patient-perceived tolerance reports to determine an optimal drug dose for phase II trials. Confronted with patients' hopes and inappropriate beliefs, communication is challenging in phase I trials and could benefit from facilitating psychosocial interventions.
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Antineoplásicos/efeitos adversos , Ensaios Clínicos Fase I como Assunto/psicologia , Terapia de Alvo Molecular/efeitos adversos , Neoplasias/tratamento farmacológico , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Pesquisa QualitativaRESUMO
PURPOSE: This study aimed to chart patterns of simultaneous trajectories over 8 months in breast cancer survivors' (BCS) supportive care needs, psychological distress, social support, and posttraumatic growth. Clusters of BCS among these trajectories were identified and characterized. METHODS: Of 426 BCS study participants, 277 (65%) provided full assessments in the last week of primary cancer treatment and 4 and 8 months later. Latent trajectories were obtained using growth mixture modeling for patients who responded to all scores for at least one time point (n = 348). Then, classification of BCS was performed by hierarchical agglomerative clustering on axes derived from a multiple factor analysis of trajectory assignments. Self-esteem, attachment security, and satisfaction with care were assessed at baseline. RESULTS: Four trajectory clusters were identified, including two BCS subgroups (63%) with low needs and low psychological distress. Two others (37%) exhibited high or increasing needs and concerning levels of psychological distress. These latter clusters were characterized by higher insecure attachment, lower satisfaction with care, and either lower education or younger age, and having undergone chemotherapy. CONCLUSION: More than a third of BCS present unfavorable patterns in supportive care needs over 8 months after primary cancer treatment. Identified psychosocial and cancer care characteristics point to targets for enhanced BCS supportive care.
Assuntos
Neoplasias da Mama/psicologia , Apoio Social , Sobreviventes/psicologia , Atividades Cotidianas , Fatores Etários , Neoplasias da Mama/terapia , Análise por Conglomerados , Escolaridade , Feminino , Humanos , Transtornos Mentais/etiologia , Transtornos Mentais/prevenção & controle , Pessoa de Meia-Idade , Avaliação das Necessidades , Satisfação do Paciente , Qualidade de Vida , Autoimagem , Fatores de TempoRESUMO
BACKGROUND: Cancer care is increasingly provided in the outpatient setting, requiring specific monitoring of care quality. The patients' perspective is an important indicator of care quality and needs to be assessed with well designed, psychometrically sound questionnaires. We performed a systematic literature review of currently available patient satisfaction measures for use in cancer outpatient care settings. METHODS: We carried out MEDLINE/PubMed, PsycINFO, CINAHL, and Scopus searches of papers published over the past 15 years that describe cancer patient satisfaction questionnaires for use in the outpatient setting. We used the adapted COSMIN checklist to assess the quality of the questionnaires' measurement properties. RESULTS: A total of 6677 citations were identified and 76 relevant articles were read, of which 55 were found either not to be relevant or to provide insufficient psychometric information. The remaining 21 studies pertained to 14 patient satisfaction questionnaires. Continuity and transition, accessibility, and involvement of family/friends were less frequently addressed despite their relevance in outpatient oncology. Almost half of the psychometric studies did not provide information on item level missing data. Most internal consistency estimates (Cronbach's α) were satisfactory. Few studies reported test-retest assessment (n = 5), used confirmatory factor analysis (n = 2), or assessed fit to a graded response item response theory model (n = 3). Only three questionnaires were cross-culturally validated. CONCLUSION: Important aspects of care may be missed by current patient satisfaction questionnaires for use in the cancer outpatient setting. Additional evidence is needed of their psychometric performance, especially for cross-cultural comparative assessments.
Assuntos
Assistência Ambulatorial/normas , Oncologia/normas , Neoplasias/terapia , Satisfação do Paciente , Qualidade da Assistência à Saúde , Assistência à Saúde Culturalmente Competente , Humanos , Neoplasias/psicologia , Avaliação de Resultados da Assistência ao Paciente , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
BACKGROUND: This study assessed whether breast cancer (BC) patients express similar levels of needs for equivalent severity of symptoms, functioning difficulties, or degrees of satisfaction with care aspects. BC patients who did (or not) report needs in spite of similar difficulties were identified among their sociodemographic or clinical characteristics. PATIENTS AND METHODS: Three hundred and eighty-four (73% response rate) BC patients recruited in ambulatory or surgery hospital services completed the European Organisation for Research and Treatment of Cancer Quality of Life questionnaire (EORTC QLQ)-C30 quality of life [health-related quality of life (HRQOL)], the EORTC IN-PATSAT32 (in-patient) or OUT-PATSAT35 (out-patient) satisfaction with care, and the supportive care needs survey short form 34-item (SCNS-SF34) measures. RESULTS: HRQOL or satisfaction with care scale scores explained 41%, 45%, 40% and 22% of variance in, respectively, psychological, physical/daily living needs, information/health system, and care/support needs (P < 0.001). BC patients' education level, having children, hospital service attendance, and anxiety/depression levels significantly predicted differences in psychological needs relative to corresponding difficulties (adjusted R² = 0.11). Medical history and anxiety/depression levels significantly predicted differences in information/health system needs relative to degrees of satisfaction with doctors, nurses, or radiotherapy technicians and general satisfaction (adjusted R² = 0.12). Unmet needs were most prevalent in the psychological domains across hospital services. CONCLUSIONS: Assessment of needs, HRQOL, and satisfaction with care highlights the subgroups of BC patients requiring better supportive care targeting.
Assuntos
Neoplasias da Mama/psicologia , Satisfação do Paciente , Qualidade de Vida/psicologia , Ansiedade , Depressão , Feminino , França , Humanos , Pessoa de Meia-Idade , Avaliação das Necessidades , Assistência ao Paciente , Apoio Social , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The effect of BRCA1/2 gene test result on anxiety, depression, cancer-related thought intrusion or avoidance and perceived control over cancer risk was assessed in breast cancer (BC) patients, according to their perceived probability of genetic predisposition to cancer. METHODS: Two hundred and forty-three (89% response rate) women with BC completed questionnaires after an initial genetic counselling visit (T1), of which 180 (66%) completed questionnaires again after receiving the BRCA1/2 results (T2). The discrepancy between women's perceived probability of cancer genetic predisposition at T1 and the geneticist's computed estimates was assessed. RESULTS: In all, 74% of women received a negative uninformative (NU), 11% a positive BRCA1/2 and 15% an unclassified variant (UV) result. On hierarchical regression analysis, in women with a positive BRCA1/2 result (vs NU or UV), a lower perceived probability of cancer genetic predisposition than objective estimates at T1 predicted lower levels of anxiety at T2 (ß=-0.28; P<0.01), whereas in women receiving a UV result (vs NU or positive BRCA1/2), a lower perceived probability of cancer genetic predisposition than objective estimates at T1 predicted higher levels of anxiety (ß=0.20; P<0.01), depression (ß=0.19; P<0.05) and intrusion (ß=0.18; P<0.05) at T2. CONCLUSION: The type of BRCA1/2 test result differently affects distress according to women's perceived probability of genetic predisposition before testing.
Assuntos
Neoplasias da Mama/genética , Neoplasias da Mama/psicologia , Genes BRCA1 , Genes BRCA2 , Predisposição Genética para Doença , Testes Genéticos , Percepção , Adulto , Ansiedade/psicologia , Depressão/psicologia , Feminino , Aconselhamento Genético , Humanos , Pessoa de Meia-Idade , Mutação , Fatores de Risco , Estresse Psicológico/psicologia , Fatores de TempoRESUMO
This study aimed to assess the psychometric robustness of the French version of the Supportive Care Needs Survey and breast cancer (BC) module (SCNS-SF34-Fr and SCNS-BR8-Fr). Breast cancer patients were recruited in two hospitals (in Paris, France and Lausanne, Switzerland) either in ambulatory chemotherapy or radiotherapy, or surgery services. They were invited to complete the SCNS-SF34-Fr and SCNS-BR8-Fr as well as quality of life and patient satisfaction questionnaires. Three hundred and eighty-four (73% response rate) BC patients returned completed questionnaires. A five-factor model was confirmed for the SCNS-SF34-Fr with adequate goodness-of-fit indexes, although some items evidenced content redundancy, and a one-factor was identified for the SCNS-BR8-Fr. Internal consistency and test-retest estimates were satisfactory for most scales. The SCNS-SF34-Fr and SCNS-BR8-Fr scales demonstrated conceptual differences with the quality of life and satisfaction with care scales, highlighting the specific relevance of this assessment. Different levels of needs could be differentiated between groups of BC patients in terms of age and level of education (P < 0.001). The SCNS-SF34-Fr and SCNS-BR8-Fr present adequate psychometric properties despite some redundant items. These questionnaires allow for the crucial endeavour to design appropriate care services according to BC patients' characteristics.
Assuntos
Neoplasias da Mama/terapia , Avaliação das Necessidades , Apoio Social , Inquéritos e Questionários/normas , Adulto , Idoso , Neoplasias da Mama/psicologia , Análise Fatorial , Feminino , Humanos , Idioma , Pessoa de Meia-Idade , Avaliação das Necessidades/normas , Satisfação do Paciente , Qualidade de Vida/psicologia , Reprodutibilidade dos TestesRESUMO
OBJECTIVE: The objective of this study was to assess the prevalence and associated factors of sexual activity, sexual problems or sexual satisfaction in French early-stage breast cancer survivors (BCS). METHODS: Eight hundred and fifty eligible, post-treatment (6 months-5 years) female patients, aged 18-70 years, randomly selected from a consultation list, were invited to fill in questionnaires exploring quality of life (EORTC QLQ-C30 and QLQ-BR23), body image scale, and sexuality (Sexual Activity Questionnaire-SAQ; Relationship and Sexuality Scale; French Sexual Behaviour Survey-CSF). RESULTS: Fifty-three percent of BCS agreed to participate. Participating women (n=378) were younger, more often premenopausal at diagnosis and with a more recent diagnosis than non-respondents. The prevalence of sexual problems was significantly higher in BCS compared with adjusted data from a French female representative sample (p<0.0001). In logistic regression, no sexual activity (R(2) =0.37) or sexual dissatisfaction (R(2) =0.28) were associated with the feeling of emotional separation in the couple or of partner's fear of sexual intercourse, lower emotional functioning, poorer body image, or co-morbidities. In sexually active women (71% of respondents), lower frequency of sexual activity (R(2) =0.26), lower sexual pleasure (R(2) =0.22), or higher sexual discomfort (R(2) =0.22) were associated with the feeling of emotional separation in the couple or of partner's fear of sexual intercourse, lower emotional functioning, age (>50 years), nausea, or insomnia (all Hosmer-Lemeshow tests: p=NS). CONCLUSIONS: Psychological factors including the perception of the couple relationship appeared prominent in BCS women's experience of sexual problems.
Assuntos
Neoplasias da Mama/complicações , Disfunções Sexuais Psicogênicas/etiologia , Adolescente , Adulto , Idoso , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Distribuição de Qui-Quadrado , Feminino , França/epidemiologia , Humanos , Modelos Logísticos , Pessoa de Meia-Idade , Prevalência , Testes Psicológicos , Fatores de Risco , Comportamento Sexual/psicologia , Disfunções Sexuais Fisiológicas/epidemiologia , Disfunções Sexuais Fisiológicas/etiologia , Disfunções Sexuais Fisiológicas/psicologia , Disfunções Sexuais Psicogênicas/epidemiologia , Disfunções Sexuais Psicogênicas/psicologia , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto JovemRESUMO
Neglected malignant ulcerating tumours often result from failure to seek medical attention, even when the advancing tumour is visible to the patient and their friends and families. Although the appropriate wound treatment procedures are the same as for non-neglected malignant wounds, clinicians must take such neglect into account when planning the patient's care. Over a 2-year period, 25 patients at the National Cancer Centre Wound Care Unit in Paris were identified as presenting with a neglected tumour; 18 of these agreed to participate in a structured interview with a psycho-oncologist for an evaluation of their neglect behaviour. Initial results demonstrate a frequent, but not systematic, presence of a wide range of psychopathological disorders.
Assuntos
Neoplasias/psicologia , Neoplasias/terapia , Pacientes/psicologia , Ferimentos e Lesões/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Comorbidade , Gerenciamento Clínico , Feminino , Humanos , Relações Interpessoais , Masculino , Transtornos Mentais/epidemiologia , Pessoa de Meia-Idade , Neoplasias/complicações , Neoplasias/epidemiologia , Cuidados de Enfermagem , Ferimentos e Lesões/complicações , Ferimentos e Lesões/epidemiologiaRESUMO
Announcing a cancer diagnosis, but also a relapse, a progression of the disease, or transition towards palliative care constitute particularly difficult communication issues for the patient as well as for the clinician, during the trajectory of care. The objectives of this article is to present the clinical stakes of these situations, to describe the difficulties in establishing a "good" doctor-patient relationship, to provide indications or even recommendations on the ways to facilitate communication in order to ensure a optimal quality of care, responding to patients needs and ensuring the continuity of the care. Communication relates to the relation and the information delivered between patient and clinician, but also within the medical team. We analyse here the essential components of the process of "diagnosis consultation", organised in many cancer centers around France. In addition, we present the diverse training programs on communication skills that have been developed and tested in the setting of oncology, open to all professionals. Its specificity relates to its multidisciplinary character; the quality of the doctor-patient communication also depends on the quality of the communication and coordination within the team. This dimension is the subject of specific attention carried by supportive care teams.
Assuntos
Comunicação , Revelação , Neoplasias/diagnóstico , Relações Médico-Paciente , Continuidade da Assistência ao Paciente , Progressão da Doença , França , Humanos , Oncologia/educação , Neoplasias/psicologia , Neoplasias/terapia , Cuidados Paliativos , Guias de Prática Clínica como Assunto , Desenvolvimento de Programas , Recidiva , Estresse Psicológico/diagnóstico , Estresse Psicológico/psicologiaRESUMO
The medical information becomes integrated into a communications strategy, the generally admitted model of which is centered on the patient; that is in the listening of these concerns and these values. The medical quality information is facilitated by the preliminary collection of the symptoms and the needs of the patients thanks to the questionnaires of quality of life, if they are used during the consultation to direct the discussion. Satisfactory medical information includes a discussion about the questions of the patients in terms of outcomes. Patient's individual factors can influence the need of medical information, as the age and the pathology. Patient's needs can also vary with time and according to the phase of the disease. Cultural factors are essential, in particular as regards the information about prognosis. Tools to help giving the medical information are now validated as the audio cassettes or video. Those tools can take the shape of a prompt list to help patients to ask questions. The majority preference of style of participation in the medical and therapeutic decisions and is the collaborative mode. Physician's attitude is determinant to leave the patients who wish it to have an active role, what allows them a very beneficial feeling psychologically of control over the disease. Decision-making helps are successfully sometimes elaborated to support the participation of the patients. In palliative phase, the need of medical information about prognosis associated with preservation of hope is not still understood by physicians who oscillate between saying the all or none. Honest information at the right time is the majority wish of the patients, although certain patients adopt clearly a strategy of avoidance. The medical communication requires a specific training on this subject. Talking time must be opened to the doctors to approach the relational problems which they meet. The clinical research has to continue to understand better the interactions in doctors/patients communication.
Assuntos
Neoplasias/terapia , Educação de Pacientes como Assunto/métodos , Participação do Paciente , Satisfação do Paciente , Cultura , Humanos , Neoplasias/psicologia , Cuidados Paliativos , Educação de Pacientes como Assunto/normas , Participação do Paciente/psicologia , Assistência Centrada no Paciente , Papel do Médico , Relações Médico-Paciente , Prognóstico , Resultado do TratamentoRESUMO
BACKGROUND: Many women with breast cancer need psychological help to cope more effectively after treatment. Cognitive and behavioural techniques are not yet well established in France. A multi-site randomized study was conducted to evaluate the effects of a psycho-educational group intervention in this population. METHODS: Two hundred and three patients, recruited after primary treatment, were randomly assigned either to a treatment group (psycho-educational intervention) or to a waiting-list control group. The 8-week programme of 2 h sessions comprised of thematic discussions, information and training in stress management techniques. Evaluation at baseline, after 8 sessions, and 1 month after programme completion, included evaluations using the STAI, POMS, MAC, EORTC QLQ-C30 and EORTC QLQ-BR23 breast module scales. RESULTS: We observed a significant reduction in anxiety (STAI, POMS) among group participants, a reduction in anger, depression and fatigue (POMS), a significant improvement in vigor and interpersonal relationships (POMS), in emotional and role functioning, in health status and fatigue level (EORTC QLQ-C30). In contrast, coping strategies (MAC) were not significantly different between groups. No group-related negative effects were observed and the global satisfaction levels were very high. CONCLUSION: This study demonstrates the feasibility and effectiveness of a psycho-educational intervention, which can accelerate the reduction of those negative affects which are present at the end of treatment. It represents an excellent complement or an alternative to individual psycho-oncologic therapeutic support, widely proposed in France, and should now be tested in groups with other types of cancer and at other disease phases.
Assuntos
Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Educação de Pacientes como Assunto/métodos , Psicoterapia de Grupo/métodos , Adaptação Psicológica , Adulto , Idoso , Ansiedade/diagnóstico , Ansiedade/psicologia , Ansiedade/terapia , Neoplasias da Mama/patologia , Depressão/diagnóstico , Depressão/psicologia , Depressão/terapia , Fadiga/psicologia , Estudos de Viabilidade , Feminino , França , Humanos , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Inventário de Personalidade/estatística & dados numéricos , Psicometria , Qualidade de Vida/psicologia , Papel do Doente , Apoio Social , Resultado do TratamentoRESUMO
INTRODUCTION: The practices of screening and the parameters influencing these practices are not well known in France. The objectives of the Edifice study were to analyze a large cohort of patients and doctors in order to further characterize these parameters. PATIENTS AND METHODS: The study was performed by the Institute TNS Healthcare-SOFRES, and included 2 parallel studies: 1) on 1 609 healthy persons representative of the global French population and aged 40 to 75 years (N = 1 509), with an over representation of patients aged 50 to 74 years living in the 22 pilot French departments pilots; 2) on 600 generalist practitioners. Data were collected and analyzed by the expert panel... RESULTS: Ninety-three, 25, 36 and 6% of the patients in the general population declared to have performed at least one a screening exam for breast, colon, prostate, and lung carcinoma respectively. Seventy, 20, 60 and 4% of GP declare to propose systematically to a 40-75-year-old patient a screening test for breast, colon, prostate, or lung cancer. For breast cancer screening the adhesion of the GP is independent of the date of implementation of a general screening in their own regions, while for colorectal screening, 34 and 20% of the patients living in the pilot versus other departments were screened. Overall, prostate cancer screening is recommended by the GP panel for 77.1% of patients aged 50 to 75 years. CONCLUSIONS: This study shows a good adhesion of screening procedures for GP and patients, shows that screening is improved by general screening policy in colorectal cancer, but that prostate cancer screening practices exceed what is recommended according to evidence based medicine.
Assuntos
Neoplasias da Mama/diagnóstico , Neoplasias do Colo/diagnóstico , Medicina de Família e Comunidade , Neoplasias Pulmonares/diagnóstico , Neoplasias da Próstata/diagnóstico , Neoplasias Retais/diagnóstico , Adulto , Fatores Etários , Idoso , Neoplasias da Mama/epidemiologia , Neoplasias do Colo/epidemiologia , Feminino , França/epidemiologia , Humanos , Neoplasias Pulmonares/epidemiologia , Masculino , Mamografia/normas , Mamografia/estatística & dados numéricos , Pessoa de Meia-Idade , Neoplasias da Próstata/epidemiologia , Neoplasias Retais/epidemiologia , Fatores SexuaisRESUMO
BACKGROUND: The EDIFICE survey aimed to investigate the compliance of the general population to the screening tests available in France for the 4 most common cancers: breast, colorectal, prostate and lung. Implementation of breast cancer screening has been generalized in France since 2003: women aged between 50 and 74 years are systematically invited to perform a mammography every second year. Results pertaining to breast cancer are reported hereafter. METHODS: This nationwide observational survey was carried out in France from 18 January to 2 February 2005 among representative samples of 773 women aged between 40 and 75 years and 600 general practitioners (GPs). Information collected included socio-demographic characteristics, attitude towards cancer screening and actual experience of cancer screening, as well as GPs' practice regarding screening. The precision of the results is +/- 4.3% for a 95% confidence interval. RESULTS: Among the 507 participating women aged between 50 and 74 years, 92.5% (469/507) had undergone at least one mammography: 54.6% (256/469) underwent this test on their own initiative and 44.6% (209/469) of women performed it in the framework of a systematic screening plan. Most women participating in the systematic screening (89.0% i.e. 186/209) had a mammography within the last dating from less than 2 years versus 73.8% (189/256) of those who performed it outside the screening program (Chi(2) test; p<0.01). Interestingly, 422 women (61.9% i.e. 422/682 women aged between 40-75 years with at least one mammography) had performed a mammography before the recommended age for screening. There was a significant correlation (p = 0.009) between the existence of a first mammography before 50 years of age and subsequent screening on women's own initiative (54.6% of 469 screened women). Main reasons for not performing the screening test every second year (77 women aged between 50-74 years) included: feeling unconcerned and/or unmotivated (p = 0.0001), no cancer anxiety (p = 0.020) and no recommendation by the GP (p = 0.015); Of the 600 participating GPs, 68.6% (412/600) systematically recommended a mammography to their patients. GPs' perceptions of the reasons for women's avoidance of the screening test were unwillingness to be aware of mammography results (44.4% - 266/600) and the belief that mammography was painful (52.5% - 315/600). CONCLUSION: The main result of the EDIFICE survey is the high rate of women's attendance at mammography screening. The EDIFICE survey pointed out that systematic and organized screening played a major role in the regularity of screening tests for breast cancer every second year. GPs and gynaecologist are key actors in heightening public awareness.
Assuntos
Neoplasias da Mama/diagnóstico , Programas de Rastreamento/métodos , Adulto , Idoso , Atitude Frente a Saúde , Feminino , França , Ginecologia/métodos , Humanos , Mamografia/métodos , Oncologia/métodos , Pessoa de Meia-Idade , Análise Multivariada , Razão de Chances , Distribuição TecidualRESUMO
Cancer genetic counselling represents a very special situation of interaction between the geneticist and the counselee, marked by a number of specificities that account for its complexity. Cancer genetic counselling has multiple repercussions, such as identification of a deleterious genetic mutation associated with a high probability of developing breast and/or ovarian cancer, the implementation of preventive measures ranging from close surveillance to the decision to perform mutilating prophylactic surgical procedures, or the impact of the information on the other members of the counselee's family also concerned by the genetic risk. This chapter is based on a review of the literature that has been rapidly growing over recent years and on our clinical expertise as psycho-oncologists and geneticists. We will first present the reasons that make the information so critical. These reasons are both objective (complexity of the genetic information per se, difficulties of understanding the concept of risk) and subjective (information given to people with an emotionally charged family history and a perception of risks closely linked to their representation of cancer). At the same time, the counsellees are charged with the transmission of this information to members of their own family. We will then discuss the various modalities of communication in this setting. While unidirectional transfer of information from the geneticist to the counselee has been the preferred method in cancer genetics for a long time, a model based on patient-centered communication is more adequate in predictive medicine and allows shared decision making. In all cases, the different professionals involved in the process have to learn how to work in a performing cohesion. We also present the main guidelines on the subject and the various underlying objectives with regard to information delivery and the subject's personal experience. Although the psychological impact of genetic counselling consultations raises a number of questions, the results of preliminary studies are reassuring, demonstrating psychological benefits. However, a number of aspects concerning communication in predictive medicine remain to be investigated and improved.
Assuntos
Neoplasias da Mama/psicologia , Comunicação , Aconselhamento Genético/métodos , Neoplasias Ovarianas/psicologia , Feminino , Predisposição Genética para Doença , HumanosRESUMO
Patient satisfaction is now recognised as an important quality of care outcome which is particularly relevant in oncology. Adapted from the EORTC In-Patsat32, the Out-Patsat35 is a 35-item satisfaction with care questionnaire measuring cancer outpatients' perception of hospital doctors and nurses, as well as aspects of care organisation and services. This study assessed the psychometric properties of this scale. Patients undergoing ambulatory chemotherapy (CT) or radiotherapy (RT) in 7 cancer centres in France were invited to complete at home the Out-Patsat35 as well as EORTC QLQ-C30 for psychometric testing. Of 416 eligible patients recruited, 96% returned the questionnaire. Most patients (71% in CT; 69% in RT) completed this scale within 15 minutes and the mean rate of item omission was only 4.4%. Confirmatory analyses revealed good convergent validity and excellent internal consistency, although some subscales within the Out-Patsat35 were relatively highly correlated. Items and subscales of the Out-Patsat35 and of the QLQ-C30 were not significantly correlated, underlying that the two questionnaires are assessing quite distinct concepts. The subscales of the Out-Patsat35 were not related to age, gender and education, suggesting a cultural evolution in French cancer patients towards a greater homogeneity in their opinion toward care. This study supports the acceptability to patients, and the psychometric properties of the EORTC Out-Patsat35 questionnaire.
Assuntos
Assistência Ambulatorial/psicologia , Neoplasias/psicologia , Satisfação do Paciente , Inquéritos e Questionários , Assistência Ambulatorial/organização & administração , Assistência Ambulatorial/normas , Competência Clínica , Feminino , França , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/tratamento farmacológico , Neoplasias/radioterapia , Competência Profissional , Fatores SocioeconômicosRESUMO
Along with advances in medicine and social evolution, we are seeing an increase in the number of patients afflicted with cancer, and a change in the doctor-patient relationship. Patients' rights are now registered in the Hospitalised Patient's Charter, the Huriet Act and the Act of March 4, 2002. The evolution in cancer diseases is monitored by a range of imaging examinations, putting the radiologist in the front line. Lesions are typically first detected by the radiologist. This task is complicated by the fact that radiologists usually have no formal training with regards to the disclosure of cancer diagnoses to patients. There is a great risk of inappropriate responses which can have a profoundly damaging effect on the patient's state of mind. Even if we have the best of ideals and intentions, there is a great need for us to examine and improve our modes of interaction, in dealing with the patient's need for information. The radiologist possesses technical know-how, but technique alone is not enough - the right amount of information, based on clinical competence, is required; but so is empathy towards the patient, and respect for his or her wishes and rights.
Assuntos
Comunicação , Neoplasias , Relações Médico-Paciente , Radiologia , Humanos , Neoplasias/diagnóstico por imagem , RadiografiaRESUMO
Progress in medicine and changes in our society have led to an increasing number of patients with cancer and a change in the doctor-patient relationship. Patients rights are now defined in several countries by laws. The course of cancer involves numerous imaging examinations in which the radiologist is primarily involved. It is often the radiologist who discovers abnormalities and who must break the news to the patient. This task is made all the more difficult by the radiologist's lack of specific training in the management of difficult situations such as announcing bad news. There is a high risk of inappropriate responses that can have a seriously damaging effect on the patient's state of mind. Even with the best intentions, it can be very profitable to review and improve our relational modalities and to more effectively meet the patient's increasing demand for information. The radiologist's technical know-how is not sufficient, as he must also be able to give just the right amount of information based on his clinical competence, and his relationship with patients while respecting their wishes and their rights.
Assuntos
Relações Médico-Paciente , Radioterapia (Especialidade) , HumanosRESUMO
BACKGROUND: For pertinent investigation of patient satisfaction it is important to know what type of data collection procedure yields optimal results. In this study, we compared a self- versus interview administration of the European Organisation for Research and Treatment of Cancer (EORTC) patient satisfaction questionnaire (QLQ-SAT32), noting response and item omission rates. We also assessed the correlation and agreement between responses according to these modalities of questionnaire administration. METHODS: 123 patients recruited in two anti-cancer Centers in France were asked to complete the QLQ-SAT32 at home within 2 weeks of hospital discharge and were randomly allocated to participate in a telephone interview-administration of the QLQ-SAT32, either before or after self-completing the QLQ-SAT32. RESULTS: 104 patients completed both modalities of questionnaire administration. Agreement proved excellent for the doctors' and nurses' subscales and satisfactory for the services' subscale and the general satisfaction single item. However, a significant difference in response rate showed up between Centers (different interviewers) and the interview modality revealed an item omission rate higher than for the self-administration modality. CONCLUSION: Self- and interview-administration of the QLQ-SAT32 provided similar responses however different response rate between interviewers and higher item omission rate in interviews suggests a biasing effect of that modality of data collection.