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OBJECTIVE: To determine whether or not decision aid (DA) use influences treatment decisions in patients with low and intermediate risk prostate cancer (PC). PATIENTS AND METHODS: In a cluster randomized controlled trial, patients were randomized to either DA use (DA group) or no DA use (control group). Between 2014 and 2016, newly diagnosed patients with low or intermediate risk PC were recruited in 18 hospitals in the Netherlands. DA users had access to a web-based DA that provided general PC information, PC-treatment information, and values clarification exercises to elicit personal preferences towards the treatment options. Control group patients received care as usual. Differences in treatment choice were analysed using multilevel logistic regressions. Differences in eligible treatment options between groups were compared using Pearson Chi-square tests. RESULTS: Informed consent was given by 382 patients (DA group N = 273, control group N = 109). Questionnaire response rate was 88% (N = 336). Active surveillance (AS) was an option for 38%, radical prostatectomy (RP) for 98%, external beam radiotherapy (EBRT) for 88%, and brachytherapy (BT) for 79% of patients. DA users received AS significantly more often than control group. Patients (29 vs 16%, p = 0.01), whereas the latter more often chose BT (29 vs 18%, p < 0.01). No differences were found between groups regarding RP and EBRT. DA users who were not eligible for AS, received surgery more often compared to the control group (53 vs 35%, p = 0.01). Patient and disease characteristics were evenly distributed between groups. CONCLUSION: DA-using PC patients chose the AS treatment option more often than non-DA-using patients did.
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Tomada de Decisões , Técnicas de Apoio para a Decisão , Preferência do Paciente , Neoplasias da Próstata/terapia , Idoso , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias da Próstata/psicologia , Medição de RiscoRESUMO
BACKGROUND: Given the major changes in internet use for health communication, the objective of the current study was to compare the internet use and wishes of cancer survivors between 2005 and 2017. METHODS: The authors drew a sample of 390 patients in 2005 and 539 patients in 2017 who were diagnosed with breast (128 patients in 2005 and 143 patients in 2017), prostate (96 patients in 2005 and 126 patients in 2017), or gynecologic (89 patients in 2005 and 188 patients in 2017) cancer or lymphoma (77 patients in 2005 and 82 patients in 2017) in 4 different hospitals for the periods 2002 through 2004 and 2014 through 2016. These patients were sent a paper-based questionnaire that contained 45 questions regarding demographics and 4 functions of internet use: content, communication, community, and e-health. RESULTS: The response in 2017 (53%) was lower than that in 2005 (75%). Survivors browsed the internet most frequently to search for information regarding cancer shortly after being diagnosed and while waiting for treatment. There was little change noted with regard to the relative importance attached to the various subjects. In 2017, significant increases were evident with regard to finances (+33%), health care insurance (+29%), and genetics and/or heritability (+27%). The wishes expressed in 2005 by patients were realized in part in 2017. CONCLUSIONS: A significant sample of cancer survivors in the Netherlands have indicated that the internet is an important source of information regarding their illness. However, little change was evident over the past 15 years with regard to patients' priorities regarding their wishes for internet use. The wishes of users in 2005 were found to accurately reflect the internet use of the majority of patients in 2017. The results of the current study support the belief that health care professionals should expand their online services and tailor them toward the needs and wishes of their patients.
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Sobreviventes de Câncer/psicologia , Comunicação em Saúde/tendências , Comportamento de Busca de Informação , Internet/tendências , Neoplasias/terapia , Idoso , Sobreviventes de Câncer/estatística & dados numéricos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/mortalidade , Neoplasias/psicologia , Países Baixos , Inquéritos e Questionários/estatística & dados numéricosRESUMO
OBJECTIVES: To evaluate the effectiveness of a web-based decision aid (DA), with values clarification exercises compared with usual care, for men with lower urinary tract symptoms due to benign prostatic hyperplasia (LUTS/BPH). PATIENTS AND METHODS: Between July 2016 and January 2017, all new patients with LUTS/BPH who consulted the urologist were invited to use the DA and participate in this prospective questionnaire study. Patients who consulted the urologist between December 2015 and February 2016 served as controls. The DA was designed to support patients in making a well-informed treatment decision, corresponding with their personal preferences and values. Well-informed decision was measured by using a knowledge questionnaire. Value congruent decision was measured by the correspondence between responses on nine value statements and chosen treatment. The primary outcome, decision quality, was defined as the combination of well-informed decision and value congruent decision. Secondary outcomes were decisional conflict, involvement and received role in shared decision-making, decisional regret, and treatment choice. RESULTS: A total of 109 DA-users and 108 controls were included. DA-users were younger (68.4 vs 71.5 years; P = 0.003) and their education level was higher (P = 0.047) compared with the controls. Patients who used the DA made a well-informed and value congruent decision more often than the control group (43% vs 21%; P = 0.028). DA-users had less decisional conflict (score 33.2 vs 46.6; P = 0.003), experienced a less passive role in decision-making (22% vs 41%; P = 0.038), and reported less process regret (score 2.4 vs 2.8; P = 0.034). Furthermore, DA-users who had not used prior medication chose lifestyle advices more often than the control group (43% vs 11%; P = 0.002). Outcomes were adjusted for significantly different baseline characteristics. CONCLUSION: The LUTS/BPH DA seems to improve the decision quality by supporting patients in making more well-informed and value congruent treatment decisions. Therefore, further implementation of this DA into routine care is suggested.
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Técnicas de Apoio para a Decisão , Internet , Sintomas do Trato Urinário Inferior/etiologia , Sintomas do Trato Urinário Inferior/terapia , Hiperplasia Prostática/complicações , Hiperplasia Prostática/terapia , Idoso , Tomada de Decisões , Humanos , Masculino , Pessoa de Meia-Idade , Participação do Paciente , Preferência do Paciente , Estudos Prospectivos , Inquéritos e QuestionáriosRESUMO
PURPOSE: To compare patients' evaluation of the treatment decision-making process in localized prostate cancer between counseling that included an online decision aid (DA) and standard counseling. METHODS: Eighteen Dutch hospitals were randomized to DA counseling (n = 235) or the control group with standard counseling (n = 101) in a pragmatic, cluster randomized controlled trial. The DA was provided to patients at, or soon after diagnosis. Decisional conflict, involvement, knowledge, and satisfaction with information were assessed with a questionnaire after treatment decision-making. Anxiety and depression served as covariates. RESULTS: The levels of decision involvement and conflict were comparable between patients in both groups. Patients with a DA felt more knowledgeable but scored equally well on a knowledge test as patients without a DA. Small significant negative effects were found on satisfaction with information and preparation for decision-making. A preference for print over online and depression and anxiety symptoms was negatively associated with satisfaction and conflict scores in the DA group. DISCUSSION: The DA aimed to support shared decision-making, while outcomes for a majority of DA users were comparable to patients who received standard counseling. Patients, who are less comfortable with the online DA format or experience anxiety or depression symptoms, could require more guidance toward shared decision-making. To evaluate long-term DA effects, follow-up evaluation on treatment satisfaction and decisional regret will be done.
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Tomada de Decisões , Técnicas de Apoio para a Decisão , Internet , Satisfação do Paciente , Assistência Centrada no Paciente , Neoplasias da Próstata/terapia , Idoso , Idoso de 80 Anos ou mais , Análise por Conglomerados , Conflito Psicológico , Tomada de Decisões/fisiologia , Dinamarca/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados da Assistência ao Paciente , Participação do Paciente/métodos , Participação do Paciente/psicologia , Participação do Paciente/estatística & dados numéricos , Medidas de Resultados Relatados pelo Paciente , Satisfação do Paciente/estatística & dados numéricos , Assistência Centrada no Paciente/métodos , Assistência Centrada no Paciente/organização & administração , Assistência Centrada no Paciente/estatística & dados numéricos , Neoplasias da Próstata/epidemiologia , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: The objective of this study is to test if patients' health-related quality of life (HRQoL) declines after prostate biopsy to detect Pca, and after subsequent treatment decision-making in case Pca is confirmed, and to test whether personality state and traits are associated with these potential changes in HRQoL. METHODS: Patients who were scheduled for prostate biopsy to detect Pca (N = 377) filled out a baseline questionnaire about HRQoL (EORTC QLQ-C30 and PR25), "big five" personality traits (BFI-10), optimism (LOT-r), and self-efficacy (Decision Self-efficacy Scale) (t0). Patients with confirmed Pca (N = 126) filled out a follow-up questionnaire on HRQoL within 2 weeks after treatment was chosen but had not yet started (t1). RESULTS: HRQoL declined between t0 and t1, reflected in impaired role and cognitive functioning, and elevated fatigue, constipation, and prostate-specific symptoms. Sexual activity and functioning improved. Baseline HRQoL scores were unrelated to the selection of a particular treatment, but for patients who chose a curative treatment, post-decision HRQoL showed a greater decline compared to patients who chose active surveillance. Optimism was associated with HRQoL at baseline; decisional self-efficacy was positively associated with HRQoL at follow-up. No associations between HRQoL and the "big five" personality traits were found. CONCLUSION: Patients who have undergone prostate biopsy and treatment decision-making for Pca experience a decline in HRQoL. Choosing treatment with a curative intent was associated with greater decline in HRQoL. Interventions aimed at optimism and decision self-efficacy could be helpful to reduce HRQoL impairment around the time of prostate biopsy and treatment decision-making.
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Tomada de Decisões , Neoplasias da Próstata/diagnóstico , Neoplasias da Próstata/psicologia , Qualidade de Vida/psicologia , Idoso , Biópsia/psicologia , Fadiga/etiologia , Fadiga/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias da Próstata/terapia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The best practice for the organization of follow-up care in oncology is under debate, due to growing numbers of cancer survivors. Understanding survivors' preferences for follow-up care is elementary for designing patient-centred care. Based on data from prostate cancer and melanoma survivors, this study aims to identify: 1) preferences for follow-up care providers, for instance the medical specialist, the oncology nurse or the general practitioner; 2) characteristics associated with these preferences and 3) the preferred care provider to discuss cancer-related problems. MATERIAL AND METHODS: Survivors diagnosed with prostate cancer (N = 535) and melanoma (N = 232) between 2007 and 2013 as registered in The Netherlands Cancer Registry returned a questionnaire (response rate was 71% and 69%, respectively). A latent class cluster model analysis was used to define preferences and a multinomial logistic regression analysis was used to identify survivor-related characteristics associated with these preferences. RESULTS: Of all survivors, 29% reported no preference, 40% reported a preference for the medical specialist, 20% reported a preference for both the medical specialist and the general practitioner and 11% reported a preference for both the medical specialist and the oncology nurse. Survivors who were older, lower/intermediate educated and women were more likely to have a preference for the medical specialist. Lower educated survivors were less likely to have a preference for both the medical specialist and the general practitioner. Overall, survivors prefer to discuss diet, physical fitness and fatigue with the general practitioner, and hereditary and recurrence with the medical specialist. Only a small minority favored to discuss cancer-related problems with the oncology nurse. CONCLUSION: Survivors reported different preferences for follow-up care providers based on age, education level, gender and satisfaction with the general practitioner, showing a need for tailored follow-up care in oncology. The results indicate an urgency to educate patients about transitions in follow-up care.
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Assistência ao Convalescente , Melanoma/mortalidade , Neoplasias da Próstata/mortalidade , Sobreviventes , Idoso , Estudos Transversais , Feminino , Pessoal de Saúde , Humanos , Masculino , Melanoma/terapia , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Preferência do Paciente , Neoplasias da Próstata/terapia , Sistema de RegistrosRESUMO
OBJECTIVE: To determine the satisfaction with information received by prostate cancer survivors and associations with health-related quality of life (HRQoL) and illness perception. METHODS: A cross-sectional study was performed among 999 patients diagnosed between 2006 and 2009. All patients received a questionnaire on HRQoL (EORTC QLQ-C30), illness perception (B-IPQ) and satisfaction with information provision (EORTC QLQ-INFO-25). Multivariate regression analyses were performed to assess the association between satisfaction with information provision and HRQoL as well as illness perception. RESULTS: Response rate was 70% (N = 697), 34% (N = 222) indicated to be dissatisfied with the information received. Multivariate linear regression analyses showed a significant positive association between satisfaction with information provision and global health (P = <0.001), emotional functioning (P = 0.004), social functioning (P = 0.027), physical functioning (P = 0.002) and role functioning (P = 0.001). Satisfaction was negatively associated with illness perception subscales on consequences (P = 0.020), timeline (P = 0.031), personal control (P = 0.013), treatment control (P < 0.001), illness concern (P < 0.001), coherence (P = 0.001) and emotional representation (P = 0.004). Hence, more satisfied patients reported fewer consequences of disease, illness concern and emotional representation, but higher personal and treatment control and coherence. CONCLUSIONS: A third of all prostate cancer survivors reported to be dissatisfied with the information received and scored worse on HRQoL and illness perception. A prospective randomized study is needed to study the effect of an intervention that improves information provision on HRQoL and illness perception outcomes. Copyright © 2015 John Wiley & Sons, Ltd.
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Educação de Pacientes como Assunto , Satisfação do Paciente , Neoplasias da Próstata/psicologia , Qualidade de Vida/psicologia , Sobreviventes/psicologia , Idoso , Estudos Transversais , Emoções , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: Additional insight in the occurrence and number of positive surgical margins (PSM) and the potential consequences is needed, since earlier studies show divergent results. This study aims at investigating the effect of the presence and number of PSM on oncological outcomes. METHODS: Retrospective population-based cohort study including 648 consecutive prostate cancer patients who underwent RP in the Southern Netherlands in 2006-2008. The effect of PSM on risk of treatment failure, defined by either biochemical recurrence or necessity of any additional therapy (Cox regression), was evaluated. RESULTS: PSM were observed in 39%; 11% had multiple PSM. Treatment failure was observed in 26% of all patients. Multivariably, the presence (hazard ratio 2.5) and number of PSM (hazard ratios: single 2.3; multiple 3.1) were independently associated with higher treatment failure rates, unlike location of PSM. CONCLUSIONS: Treatment failure rates are high among patients with PSM, especially in those with multiple PSM. This needs to be taken into account when decisions are made on the applicability of the adjuvant and salvage therapy.
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Vigilância da População/métodos , Prostatectomia/métodos , Neoplasias da Próstata/diagnóstico , Medição de Risco/métodos , Idoso , Intervalo Livre de Doença , Seguimentos , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Invasividade Neoplásica , Estadiamento de Neoplasias , Países Baixos/epidemiologia , Valor Preditivo dos Testes , Prognóstico , Neoplasias da Próstata/epidemiologia , Neoplasias da Próstata/cirurgia , Estudos Retrospectivos , Fatores de Risco , Taxa de Sobrevida/tendências , Fatores de TempoRESUMO
Our study assessed whether rising age, socioeconomic status (SES) and the presence of serious comorbidity affected treatment choice and survival in a population-based series of patients with muscle-invasive bladder cancer (MIBC) in The Netherlands. Therefore, a consecutive series was studied, including all patients diagnosed with MIBC between 1995 and 2009 in the Eindhoven Cancer Registry, preceding centralization of cystectomy. The independent effects of age, SES and serious comorbidity on therapy choice and their effects on overall survival were estimated by multivariate logistic regression and multivariate Cox proportional hazard analyses, respectively. Out of the 2,445 patients, 38% were aged ≥ 75 years at diagnosis and 63% had at least one serious comorbid condition. Higher age and serious comorbidity were independent predictors for abstaining from cystectomy, where SES was not (61-74 vs. ≤ 60: odds ratio [OR], 0.8; 95% confidence interval [CI], 0.6-1.0; ≥ 75 vs. ≤ 60: OR, 0.1; 95% CI,0.1-0.2; one comorbid condition vs. none: OR, 0.7; 95% CI, 0.5-0.9; two vs. none: OR, 0.6; 95% CI, 0.5-0.8). Patients undergoing cystectomy, external beam radiotherapy or interstitial radiotherapy survived longer independent of age, SES and serious comorbidity (hazard ratio [HR]: 0.4; 95% CI: 0.4-0.5; HR: 0.8; 95% CI: 0.7-0.9; HR: 0.4; 95% CI: 0.3-0.5, respectively). Consequently, preceding centralization of cystectomy, higher age and serious comorbidity were independent predictors for abstaining from cystectomy owing to an expected high rate of short-term medical problems. As cystectomy is associated with a better survival, independently of age, SES and serious comorbidity, it can be questioned whether cystectomy has been underutilised in elderly and in patients with serious comorbidity. Centralization might be a solution for this suggested underutilisation.
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Neoplasias da Bexiga Urinária/complicações , Neoplasias da Bexiga Urinária/mortalidade , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Comorbidade , Cistectomia/métodos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Músculo Liso/patologia , Invasividade Neoplásica , Países Baixos , Razão de Chances , Prognóstico , Modelos de Riscos Proporcionais , Classe Social , Resultado do Tratamento , Bexiga Urinária/patologia , Neoplasias da Bexiga Urinária/epidemiologiaRESUMO
PURPOSE: The purpose of this study was to measure patient-reported outcomes (PROs) for patients with muscle-invasive bladder cancer (BC) before the diagnosis of BC was known, thus before cystectomy, and until 1 year postcystectomy. The differences in outcomes between a health status (HS) and quality of life (QoL) questionnaires were examined. METHODS: From July 2007 to July 2010, 598 patients with primary hematuria were enrolled in this prospective, multi-centre case-control (CC) study. Patients undergoing radical cystectomy (RC; N = 18) were compared with patients with other causes of hematuria (CC, N = 20). Measurement points were before diagnosis as well as 3, 6 and 12 months postcystectomy. Questionnaires used were the WHOQOL-BREF, SF-12, International Index of Erectile Function, and 10-item STAI-Trait scale. RESULTS: Prediagnosis patients who later appeared to have BC had the same QoL compared to CC patients. The prediagnosis physical component scale of HS and sexual function were significantly lower for RC vs. CC patients. RC patients had a better prediagnostic QoL and HS than postcystectomy at all time points. CONCLUSIONS: This is the first case-control study with a baseline measurement of PROs before the diagnosis of BC was known. It shows lower physical health and sexual function for RC vs. CC before diagnosis is known. Until 1 year postcystectomy, QoL does not return to baseline level. Future studies including comorbidity and smoking history are needed to examine the generalizability of our results.
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Neoplasias da Bexiga Urinária/psicologia , Neoplasias da Bexiga Urinária/cirurgia , Idoso , Idoso de 80 Anos ou mais , Estudos de Casos e Controles , Comorbidade , Cistectomia/efeitos adversos , Cistectomia/psicologia , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Qualidade de Vida , Autorrelato , Resultado do TratamentoRESUMO
PURPOSE: To examine quality of life (QoL), health status, sexual function, and anxiety in patients with primary hematuria who later appear to have bladder cancer (BC) and patients with other diagnoses. METHODS: From July 2007 to July 2010, 598 patients with primary hematuria were enrolled in this prospective, multicenter study. Questionnaires (WHOQOL-BREF, SF-12, IIEF, STAI-10-item Trait) were completed before cystoscopy. Diagnosis was subsequently derived from medical files. BC patients were compared with patients with other causes of hematuria. RESULTS: Cancer was diagnosed in 131 patients (21.9 %), including 102 patients (17.1 %) with BC. No differences were found in the WHOQOL-BREF versus SF-12 psychological or physical health domains. The erectile function was significantly worse in the BC group (9.3 vs. 14.6 for OC, p = 0.02). Patients with muscle-invasive BC (MIBC) had the lowest percentage anxious personalities of all BC patients (p = 0.04). CONCLUSIONS: Cancer was found in 21.9 % of the patients with hematuria. Pre-diagnosis patients with BC have comparable QoL and HS to patients with OC. Erectile dysfunction was highest in patients with BC. MIBC patients had the lowest percentage anxious personalities of the patients with BC.
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Ansiedade/psicologia , Nível de Saúde , Hematúria/psicologia , Qualidade de Vida , Disfunções Sexuais Fisiológicas/psicologia , Neoplasias da Bexiga Urinária/psicologia , Adulto , Idoso , Ansiedade/diagnóstico , Cistoscopia , Disfunção Erétil/etiologia , Disfunção Erétil/psicologia , Hematúria/diagnóstico , Hematúria/etiologia , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Avaliação de Resultados em Cuidados de Saúde , Estudos Prospectivos , Escalas de Graduação Psiquiátrica , Disfunções Sexuais Fisiológicas/etiologia , Fatores Socioeconômicos , Inquéritos e Questionários , Neoplasias da Bexiga Urinária/diagnósticoRESUMO
UNLABELLED: Study Type - Prognosis (cohort). Level of Evidence 2a. What's known on the subject? and What does the study add? The subject of mortality and survival rates after radical cystectomies in high-volume hospitals in comparison to low-volume hospitals has been extensively studied. Postoperative mortality is known to be significantly lower with high-volume providers, but for survival rates there was only a trend forwards this finding. For this reason, we performed this Dutch population-based study on survival rates, to see if we had enough power to support this trend with significant findings. To our knowledge, this is the first study of good quality showing a significant beneficial effect for survival in high-volume hospitals. OBJECTIVE: ⢠To examine the volume-outcome relationship for carcinoma invading bladder muscle (MIBC) with respect to differences in survival rates among all hospitals in the Netherlands as a guide for regionalization initiatives. MATERIALS AND METHODS: ⢠This population-based retrospective study included all patients (n= 13 033) newly diagnosed with MIBC during the period 1999-2008 in the Netherlands, selected from the Netherlands Cancer Registry. ⢠Data were collected on demographics, morphology, stage at diagnosis and after surgery, primary treatment, vital status and date of follow-up or death. ⢠The relative survival rate (RSR) per treatment was analysed for age, stage and hospital surgical volume. RESULTS: ⢠Overall 5 and 10-year RSR for all treatments of MIBC was 32% and 25%, respectively. ⢠Although 71.7% of the patients featured stages II and III, radical cystectomy was only performed in only 42% and 44% of these patients, respectively. ⢠Relative survival for MIBC remained unchanged in the two consecutive time periods (1999-2003 and 2004-2008). ⢠In all, 34% of patients diagnosed in low-volume hospitals (<10 cystectomies/year) underwent cystectomy vs 42% of those diagnosed in high-volume hospitals (P= 0.000). ⢠In a multivariate analysis long-term survival (>30 days after surgery) was significantly lower in patients after cystectomy for stage II/III in low-volume hospitals (hazard ratio [HR] 1.17, P= 0.036). A high lymph node count (>20) was associated with a lower risk of death (HR 0.52, P= 0.000). CONCLUSIONS: ⢠The 10-year RSR for patients with MIBC in the Netherlands was modest (25%) and has remained unchanged in the last decade. ⢠The chance of undergoing cystectomy is significantly higher in high-volume hospitals. Long-term survival after cystectomy is higher in high-volume hospitals. ⢠Regionalization of bladder cancer treatments could improve overall outcomes.
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Carcinoma/mortalidade , Tamanho das Instituições de Saúde/estatística & dados numéricos , Neoplasias da Bexiga Urinária/mortalidade , Adulto , Idoso , Idoso de 80 Anos ou mais , Antineoplásicos/uso terapêutico , Braquiterapia/mortalidade , Carcinoma/terapia , Cistectomia/mortalidade , Feminino , Humanos , Estimativa de Kaplan-Meier , Masculino , Pessoa de Meia-Idade , Músculo Liso , Invasividade Neoplásica , Países Baixos/epidemiologia , Estudos Retrospectivos , Neoplasias da Bexiga Urinária/patologia , Neoplasias da Bexiga Urinária/terapia , Adulto JovemRESUMO
OBJECTIVE: To define a set of quantifiable quality of care indicators (QIs) to measure the standard of care in our institute given to patients with muscle-invasive bladder cancer (MIBC). PATIENTS AND METHODS: Possible QIs were defined and selected by a multidisciplinary project group from recent literature, guidelines, and/or consensus within the project group. In a retrospective study a baseline for each QI was assessed and compared to a predefined benchmark. RESULTS: Four categories of QIs were selected: (1) care management, (2) accessibility and time management, (3) professional competence, and (4) patient factors. A list of 26 QIs was created. In the retrospective study, it became evident that 22 QIs failed to reach their benchmark, because of (1) an inadequate process of care (n = 5), (2) insufficient care given (n = 14), and (3) data not retrievable in retrospective study design (n = 2). Adjustments were made in the different processes of care in order to improve quality of care. CONCLUSIONS: In the face of a complete lack of a QoC registration system for MIBC, we listed 26 quantifiable QIs, to measure QoC in our own institute. Our process of care did not meet 22 of the benchmarks, after which adjustments were made. This QoC registration method is a first step in defining applicable quality of care indicators, for implementation in the clinical practice.
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Neoplasias Musculares/terapia , Garantia da Qualidade dos Cuidados de Saúde/métodos , Indicadores de Qualidade em Assistência à Saúde , Padrão de Cuidado , Neoplasias da Bexiga Urinária/terapia , Idoso , Competência Clínica , Feminino , Acessibilidade aos Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias Musculares/secundário , Estudos Retrospectivos , Resultado do Tratamento , Neoplasias da Bexiga Urinária/patologiaRESUMO
OBJECTIVE: To assess and identify factors associated with the long-term health-related quality of life (HRQL) of prostate cancer survivors managed expectantly, as patients with low-risk prostate cancer can be managed with active surveillance (AS), but research on associated long-term HRQL is scarce. PATIENTS AND METHODS: From the population-based Eindhoven Cancer Registry, 71 men managed with AS were matched with 71 survivors who had similar demographic and clinical characteristics but treated with external beam radiotherapy (RT). All were diagnosed between 1994 and 1998. HRQL data were collected 5-10 years after diagnosis. Patients completed generic- (Short Form-36) and cancer-specific (Quality of Life - Cancer Survivors) HRQL instruments, and symptom burden (Expanded Prostate Cancer Index, Sexual Activity) questionnaires. RESULTS: Patients on AS were comparable to those treated with RT for most generic- and disease-specific HRQL dimensions. Patients treated with RT had poorer mean (sd) bowel function scores, of 87.1 (13.1) vs 92.8 (10.7) (P < 0.001), more bother with bowel function, at 85.0 (16.4) vs 93.7 (10.1) (P < 0.001), and more problems with getting an erection (68% vs 47%, P = 0.005). Multivariate regression analyses (corrected for comorbidity and clinical disease progression) indicated that the management strategy independently predicted differences in physical functioning, bodily pain, spiritual and total well-being, and bowel function and bowel bother. CONCLUSIONS: Patients managed expectantly at initial diagnosis (AS) have comparable HRQL and a lower symptom burden than patients treated with RT up to 10 years after the diagnosis.
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Nível de Saúde , Neoplasias da Próstata/radioterapia , Qualidade de Vida , Idoso , Idoso de 80 Anos ou mais , Métodos Epidemiológicos , Indicadores Básicos de Saúde , Humanos , Impotência Vasculogênica/etiologia , Impotência Vasculogênica/fisiopatologia , Masculino , Pessoa de Meia-Idade , Doenças Retais/etiologia , Doenças Retais/fisiopatologia , Reto/fisiopatologia , Sobreviventes , Bexiga Urinária/fisiopatologia , Doenças da Bexiga Urinária/etiologia , Doenças da Bexiga Urinária/fisiopatologiaRESUMO
PURPOSE: With the increasing interest in treatment decision-making based on risk prediction models, it is essential for clinicians to understand the steps in developing and interpreting such models. METHODS: A retrospective registry of 20 Dutch hospitals with data on patients treated for castration-resistant prostate cancer was used to guide clinicians through the steps of developing a prediction model. The model of choice was the Cox proportional hazard model. RESULTS: Using the exemplary dataset several essential steps in prediction modelling are discussed including: coding of predictors, missing values, interaction, model specification and performance. An advanced method for appropriate selection of main effects, e.g. Least Absolute Shrinkage and Selection Operator (LASSO) regression, is described. Furthermore, the assumptions of Cox proportional hazard model are discussed, and how to handle violations of the proportional hazard assumption using time-varying coefficients. CONCLUSION: This study provides a comprehensive detailed guide to bridge the gap between the statistician and clinician, based on a large dataset of real-world patients treated for castration-resistant prostate cancer.
Assuntos
Sistemas de Apoio a Decisões Clínicas , Modelos Estatísticos , Neoplasias de Próstata Resistentes à Castração/terapia , Tomada de Decisão Clínica , Humanos , Masculino , Países Baixos , Modelos de Riscos Proporcionais , Sistema de Registros , Análise de Regressão , Estudos RetrospectivosRESUMO
OBJECTIVE: To evaluate treatment preferences of patients with lower urinary tract symptoms suggestive of benign prostatic hyperplasia (LUTS/BPH) before and after using a web-based decision aid (DA). PATIENTS AND METHODS: Between July 2016 and January 2017 patients were invited to use a web-based LUTS/BPH DA. Treatment preferences (for lifestyle advices, medication or surgery) before and after DA use and responses on values clarification exercises were extracted from the DA. RESULTS: In total, 126 patients were included in the analysis. Thirty-four percent (43/126) had not received any previous treatment and were eligible for (continuation of) lifestyle advices or to start medication, as initial treatment. The other 66% (83/126) did use medication and were eligible, either for continuing medication or to undergo surgery. Before being exposed to the DA, 67 patients (53%) were undecided and 59 patients (47%) indicated an initial treatment preference. Half of the patients who were initially undecided were able to indicate a preference after DA use (34/67, 51%). Of those with an initial preference, 80% (47/59) confirmed their initial preference after DA use. Five out of 7 values clarification exercises used in the DA were discriminative between final treatment preferences. In 79%, the treatment preferred after DA use matched the received treatment. Overall, healthcare providers were positive about DA feasibility. CONCLUSION: Our findings suggest that a LUTS/BPH DA may help patients to confirm their initial treatment preference and support them in forming a treatment preference if they did not have an initial preference.
Assuntos
Tomada de Decisões , Técnicas de Apoio para a Decisão , Intervenção Baseada em Internet , Sintomas do Trato Urinário Inferior , Preferência do Paciente/estatística & dados numéricos , Hiperplasia Prostática , Qualidade de Vida , Idoso , Tratamento Conservador/métodos , Tratamento Conservador/psicologia , Humanos , Estilo de Vida , Sintomas do Trato Urinário Inferior/etiologia , Sintomas do Trato Urinário Inferior/psicologia , Sintomas do Trato Urinário Inferior/terapia , Masculino , Pessoa de Meia-Idade , Países Baixos , Avaliação de Resultados em Cuidados de Saúde , Hiperplasia Prostática/patologia , Hiperplasia Prostática/fisiopatologia , Hiperplasia Prostática/psicologia , Hiperplasia Prostática/terapia , Procedimentos Cirúrgicos Operatórios/métodos , Procedimentos Cirúrgicos Operatórios/psicologia , Inquéritos e Questionários , Conduta ExpectanteRESUMO
OBJECTIVE: The aim of this study was to evaluate the value of urodynamic investigation in the preoperative workup of midurethral sling surgery and to identify risk factors for failure after 3 different midurethral sling procedures. STUDY DESIGN: Retrospective cohort study. 437 women who underwent a tension-free vaginal tape, Monarc, or tension-free vaginal tape-obturator procedure without other simultaneously performed urogynecological surgery were included. Preoperative data were collected from the medical files. Patients who reported any amount of leakage were considered failures. The mean follow-up of the study population was 14 months. RESULTS: After multivariate analysis, mixed urinary incontinence (P = .04), previous incontinence surgery (P = .022), and detrusor overactivity (P = .02) were significantly related to failure of midurethral sling procedures. There were no predictive urodynamic parameters for failure in patients with mixed urinary incontinence or previous incontinence surgery. CONCLUSION: The standard use of urodynamic investigation in the preoperative workup of midurethral sling surgery needs to be revisited.
Assuntos
Slings Suburetrais , Incontinência Urinária por Estresse/fisiopatologia , Incontinência Urinária por Estresse/cirurgia , Urodinâmica , Feminino , Humanos , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Estudos Retrospectivos , Resultado do TratamentoRESUMO
OBJECTIVE: To evaluate perspectives of the multidisciplinary team concerning shared decision-making (SDM) in treatment decisions for older patients with metastatic castration-resistant prostate cancer (mCRPC). MATERIALS AND METHODS: A survey among Dutch healthcare providers was conducted to assess healthcare providers' perspectives on patient involvement in decision-making and the value of a decision aid (DA) in the decision-making process. Treatment recommendations were assessed using hypothetical cases in which providers were asked to evaluate their likelihood of pursuing listed treatment options. RESULTS: In total, 170 Dutch healthcare providers, including 82 urologists, 31 oncologists, and 57 oncology nurses completed the survey. Sixty-two percent of urologists, 65% of oncologists, and 51% of oncology nurses found that mCRPC patients take a passive role in decision-making and delegate treatment decisions to doctors due to advanced age (pâ¯=â¯.45). Yet, 70% of urologists, 71% of oncologists, and 63% of oncology nurses agreed that mCRPC patients should be always involved in decision-making (pâ¯=â¯.91). Fifty-two percent of urologists and 55% of oncologists stated that they are inadequately trained to apply SDM in clinical practice. Conversely, only 20% of oncology nurses believed that oncology nurses are inadequately trained. Fifty-four percent of all providers considered a DA suitable to support these patients and their healthcare providers in the decision-making process. All hypothetical cases showed variation in treatment recommendations among providers, with each of the five treatments ranging from extremely likely to extremely unlikely. CONCLUSIONS: The wide variation of treatment recommendations observed among the multidisciplinary team suggests that mCRPC patients and their healthcare providers may benefit from implementation of informed SDM. Given the perceived passive role of older patients with mCRPC in decision-making, interventions to engage them are needed. With slightly more than half of respondents finding DAs useful to facilitate the decision-making process, development and implementation of a DA would be an interesting field of research.
Assuntos
Atitude do Pessoal de Saúde , Carcinoma/terapia , Tomada de Decisão Compartilhada , Técnicas de Apoio para a Decisão , Neoplasias de Próstata Resistentes à Castração/terapia , Adulto , Fatores Etários , Carcinoma/secundário , Humanos , Masculino , Pessoa de Meia-Idade , Metástase Neoplásica , Países Baixos , Enfermeiras e Enfermeiros , Oncologistas , Enfermagem Oncológica , Equipe de Assistência ao Paciente , Participação do Paciente , Neoplasias de Próstata Resistentes à Castração/patologia , UrologistasRESUMO
OBJECTIVE: To investigate the effect of including an online decision aid (DA) during prostate cancer treatment counseling on decisional regret and information satisfaction in a one-year follow-up. METHODS: Within a cluster RCT, 18 Dutch hospitals were randomized to DA counseling or care-as-usual, patients (n = 382) initially completed questionnaires directly after treatment decision making. Six and twelve months later regret (Decisional Regret Scale) and information satisfaction (SCIP-B) were assessed. Anxious and depressive symptoms (HADS) was included as possible covariate. RESULTS: After 12 months, 43 participants (15%) regretted their treatment choice and 105 participants (36%) were dissatisfied with the information that was received at the time of decision-making, regardless of being exposed to the DA. Anxious and depressive symptoms at follow-up were associated with regret and information dissatisfaction. CONCLUSION: No long-term benefical effects emerged from DA usage compared to patients who underwent standard counseling. PRACTICE IMPLICATIONS: During PCa treatment counseling, healthcare providers should be aware of anxious and depressive symptoms.
Assuntos
Tomada de Decisões , Técnicas de Apoio para a Decisão , Emoções , Participação do Paciente/psicologia , Satisfação do Paciente , Satisfação Pessoal , Neoplasias da Próstata/terapia , Idoso , Ansiedade/psicologia , Depressão/psicologia , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Avaliação de Resultados da Assistência ao Paciente , Medidas de Resultados Relatados pelo Paciente , Neoplasias da Próstata/psicologia , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To assess the health-related quality of life (HRQoL) of long-term, disease-free prostate cancer survivors and compare it with that of prostate cancer survivors with diabetes mellitus (DM), and a Dutch normative population, as comorbidity can have a major impact on HRQoL in cancer survivors. PATIENTS AND METHODS: The Eindhoven Cancer Registry was used to select all men diagnosed with prostate cancer from 1994 to 1998. Questionnaires on HRQoL (Short Form 36) and prostate specific problems (University of California, Los Angeles Expanded Prostate Cancer Index) were sent to 964 patients, and 780 (81%) responded. Excluding patients with disease progression, the sample comprised 525 with prostate cancer and 65 with both prostate cancer and DM. Survivors with DM were more likely to have other comorbid conditions at the time of survey besides DM than were those without DM (74% vs 60%, P = 0.05). At 5-10 years after diagnosis, patients with DM reported worse General Health Perceptions than patients without DM or the normative population (means 52, 61 and 63; P < 0.001). Patients with DM also reported worse Vitality scores (59 vs 63; P < 0.001) than the normative population. Regression analysis indicated that DM was negatively associated with General Health Perceptions (beta = -0.13; P < 0.01) and Vitality (beta = -0.12; P < 0.01). Survivors with DM did not report worse urinary and bowel function or bother, nor more sexual problems than those without DM. CONCLUSIONS: Except for general health perceptions and vitality, the HRQoL of prostate cancer survivors with or without DM was comparable to a normative population. Survivorship selection can possibly explain, in part, why patients with DM did not report worse generic or disease-specific HRQoL than those without DM, as had been expected.