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BACKGROUND: Radical prostatectomy (RP) is one of the most common therapeutic strategies for treating localized prostate cancer (PCa). Currently, the significance of postoperative functional limitations for affected patients in the long-term course, especially in comparison to age-related comorbidities, is unclear. OBJECTIVE: The aim of this study was to quantify the prevalence of subjective health restrictions alongside functional deficits in long-term PCa survivors after RP and their relevance for subjective impairments in everyday life. MATERIALS AND METHODS: Using the German version of the Self-Administered Comorbidity Questionnaire (SCQ-D), 3173 long-term survivors after RP reported their comorbidities in 13 predefined categories and in 3 free-text fields along the dimensions "problem," "treatment," and "impairment". RESULTS: The mean age at survey was 79.5 years (standard deviation, SD⯱â¯6.4), with a mean time since RP of 17.4 years (SD⯱ 3.7). The three most frequently identified comorbidities/percentage of patients who felt impaired were: hypertension (62.2%/8.5%), back pain (44.1%/54.5%), and osteoarthritis (36.1%/54.1%). The most frequently mentioned additional health problems can be subsumed under the umbrella term "urological problems" (6.1%/72.7%): incontinence (4.8%/74.3%), bladder problems (1.1%/61.8%), and erectile dysfunction (0.5%/47.1%). CONCLUSION: In summary, non-cancer-related comorbidities in the long-term course after RP are often perceived as "problems" but rarely lead to subjective impairment. In contrast, treatment-related urological problems are rarely reported as "problems", but they very often lead to subjective impairment in everyday life.
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Because only patients can adequately assess symptoms, disability, and quality of life, concordance between a patient's and physician's assessment is often low. Accordingly, patient-reported outcomes (PROs) are increasingly used in research and routine clinical care. In daily practice, PROs are not only applied to measure the patient's perceived outcome of medical treatments, but also to assess their health status before intervention starts. Typically, several patient-reported outcome measures (PROMs), which are reliable and valid, are available for the assessment of the most important PROMs. In daily clinical practice, the integration of PROs can be useful for clinical assessment and treatment planning or for quality management. Currently, the most promising application is routine patient monitoring using digital PROMs (ePROMs). Systematic reviews have revealed that the routine use of PROMs in daily clinical care is associated with, among others, improved physician-patient communication, higher patient satisfaction, reduced symptom burden, higher quality of life, and improved survival. This effect is especially strong if health care professionals continuously receive the results of the PRO monitoring. Patients are usually inclined to disclose their health status, and the positive effects of routine patient monitoring are widely recognized. However, several barriers to using PROs and PROMs still exist.
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Medidas de Resultados Relatados pelo Paciente , Satisfação do Paciente , Humanos , Qualidade de Vida , Relações Médico-Paciente , Pesquisa BiomédicaRESUMO
BACKGROUND: Precision oncology, using comprehensive biomarker testing (cBT) to inform individual cancer diagnosis, prognosis and treatment, includes increasingly complex technology and clinical data sets. People impacted by cancer (patients and caregivers) and healthcare professionals (HCPs) face distinct challenges in navigating the cBT and personalized treatment landscape. This review summarizes evidence regarding cBT-related communication between people impacted by cancer and HCPs and identifies important avenues for future research in precision oncology. METHODS: A scoping review was conducted using records published in PubMed during January 2017-August 2022, focusing on the breadth of topics on patient-HCP communication and knowledge resources used by HCPs as guidance in cBT-related communication. Data were extracted from records meeting inclusion criteria, and findings were summarized according to main topics. RESULTS: The search identified 287 unique records and data were extracted from 42 records, including nine from expert input. Most records originated from the United States included patients with different types of cancer, and oncologists were the main HCPs. Patients' motivation for undergoing cBT and receiving results was generally high in different settings. However, patients' understanding of cBT-related concepts was limited, and their knowledge and information preferences changed based on cBT implications and significance to family members. HCPs were valued by patients as a trusted source of information. Limited evidence was available on HCPs' information-seeking behavior and factors influencing cBT-related knowledge and confidence, often self-reported as insufficient. CONCLUSIONS: Patient education by knowledgeable and confident HCPs, information management and a caring patient-HCP relationship communicating continuity of care regardless of cBT results are crucial to empower patients and shared decision-making in precision oncology. More data on the process and structure of cBT-related communication, distinction between and characterization of different timepoints of patient-HCP interactions are needed.
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Neoplasias , Humanos , Neoplasias/diagnóstico , Neoplasias/terapia , Medicina de Precisão , Biomarcadores , Comunicação , Atenção à SaúdeRESUMO
Loneliness may exacerbate poor health outcomes particularly among cancer survivors during the COVID-19 pandemic. Little is known about the risk factors of loneliness among cancer survivors. We evaluated the risk factors of loneliness in the context of COVID-19 pandemic-related prevention behaviors and lifestyle/psychosocial factors among cancer survivors. Cancer survivors (n = 1471) seen at Huntsman Cancer Institute completed a survey between August-September 2020 evaluating health behaviors, medical care, and psychosocial factors including loneliness during COVID-19 pandemic. Participants were classified into two groups: 'lonely' (sometimes, usually, or always felt lonely in past month) and 'non-lonely' (never or rarely felt lonely in past month). 33% of cancer survivors reported feeling lonely in the past month. Multivariable logistic regression showed female sex, not living with a spouse/partner, poor health status, COVID-19 pandemic-associated lifestyle factors including increased alcohol consumption and marijuana/CBD oil use, and psychosocial stressors such as disruptions in daily life, less social interaction, and higher perceived stress and financial stress were associated with feeling lonely as compared to being non-lonely (all p < 0.05). A significant proportion of participants reported loneliness, which is a serious health risk among vulnerable populations, particularly cancer survivors. Modifiable risk factors such as unhealthy lifestyle behaviors and psychosocial stress were associated with loneliness. These results highlight the need to screen for unhealthy lifestyle factors and psychosocial stressors to identify cancer survivors at increased risk of loneliness and to develop effective management strategies.
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COVID-19 , Sobreviventes de Câncer , Neoplasias , Humanos , Feminino , Solidão/psicologia , Pandemias , Fatores de Risco , Comportamentos Relacionados com a SaúdeRESUMO
BACKGROUND: Patients with localized prostate cancer (PC) are faced with a wide spectrum of therapeutic options at initial diagnosis. Following radical prostatectomy (RP), PC patients may experience regret regarding their initial choice of treatment, especially when oncological and functional outcomes are poor. Impacts of psychosocial factors on decision regret, especially after long-term follow-up, are not well understood. This study aimed to investigate the prevalence and determinants of decision regret in long-term PC survivors following RP. METHODS: 3408 PC survivors (mean age 78.8 years, SD = 6.5) from the multicenter German Familial PC Database returned questionnaires after an average of 16.5 (SD = 3.8) years following RP. The outcome of decision regret concerning the initial choice of RP was assessed with one item from the Decision Regret Scale. Health-related quality of life (HRQoL), PC-anxiety, PSA-anxiety, as well as anxiety and depressive symptoms were considered for independent association with decision regret via multivariable logistic regression. RESULTS: 10.9% (373/3408) of PC survivors reported decision regret. Organ-confined disease at RP (OR 1.39, 95%CI 1.02-1.91), biochemical recurrence (OR 1.34, 1.00-1.80), low HRQoL (OR 1.69,1.28-2.24), depressive symptoms (OR 2.32, 1.52-3.53), and prevalent PSA anxiety (OR 1.88,1.17-3.01) were significantly associated with increased risk of decision regret. Shared decision-making reduced the odds of decision regret by 40% (OR 0.59, 0.41-0.86). CONCLUSIONS: PC survivors may experience decision regret even after 16 years following RP. Promoting shared decision-making in light of both established and novel, potentially less invasive treatments at initial diagnosis may help mitigate long-term regret. Awareness regarding patients showing depressive symptoms or PSA anxiety should be encouraged to identify patients at risk of decision regret in need of additional psychological support.
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Sobreviventes de Câncer , Neoplasias da Próstata , Masculino , Humanos , Idoso , Próstata , Prevalência , Antígeno Prostático Específico , Qualidade de Vida , Prostatectomia/efeitos adversos , Emoções , Neoplasias da Próstata/cirurgiaRESUMO
Patients with cancer might be particularly prone to stress caused by the COVID-19 pandemic. The aim of this study was to investigate the impact of pandemic-related stressors on oncological patients' psychological well-being. During the second wave of the COVID-19 pandemic in Germany 122 cancer out-patients of the Comprehensive Cancer Center Munich reported on COVID-19-related stressors (information satisfaction, threat perception, and fear of disease deterioration) and answered standardized questionnaires for psychosocial distress (DT) as well as depression and anxiety symptoms (PHQ-2, GAD-2). Multiple linear regression analyses were used to identify associations of the COVID-19-related stressors with psychological symptoms, controlling for sociodemographic, psychological (self-efficacy, ASKU) and clinical (somatic symptom burden, SSS-8) variables. Initially, satisfaction with information was significantly negatively associated with all three outcome variables. Fear of disease deterioration was associated with distress and depressive symptoms. After controlling for additional variables, only satisfaction with information remained an independent determinant of anxiety (ß = -0.35, p < 0.001). All three outcomes were most strongly determined by somatic symptom burden (ß ≥ 0.40, p < 0.001). The results of this study tentatively suggest that physical well-being overrides the relevance of some COVID-19-related stressors for oncological patients' psychological wellbeing. Physical symptoms are strongly tied to personal wellbeing as they are associated with suffering from cancer, which might be more central to personal wellbeing than the possibility of getting infected with SARS-CoV-2. However, satisfaction with the information received seems to be important beyond physical wellbeing, as this emerged as an independent determinant of anxiety.
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BACKGROUND: Benefit finding (BF) - the occurrence of positive life-changes in the aftermath of traumatic live events - has been repeatedly reported in prostate cancer (PCa) survivors, but it remains unclear in which way BF might vary over time. The current study aimed to investigate the extent of BF and associated factors in different phases of the survivorship continuum. METHODS: In this cross-sectional study, men affected by PCa who were either already treated with radical prostatectomy or going to be treated with radical prostatectomy at a large German PCa center were included. These men were stratified into four groups (prior to surgery, up to 12 months after surgery, 2-5 years and ≥ 6-10 years after surgery). BF was assessed using the German version of the 17-item Benefit Finding Scale (BFS). The items are rated on a five-point Likert scale ranging from 1 to 5. A total mean score ≥ 3 was considered as moderate-to-high BF. Associations with clinical and psychological factors were assessed in men presenting before and in those who participated after surgery. Multiple linear regression was applied to identify intendent determinants of BF. RESULTS: 2,298 men affected by PCa (mean age at survey: 69.5,SD = 8.2; median follow-up: 3 years (25th -75th percentile 0.5-7)) were included. 49.6% of men reported moderate-to-high BF. The mean BF score was 2.91 (SD = 0.92). BF reported by men before surgery did not differ significantly from BF reported by men in the years after surgery (p = 0.56). Higher BF prior to and following radical prostatectomy was associated with higher perceived severity of the disease (pre-surgery: ß = 0.188, p = 0.008; post-surgery: ß = 0.161, p = < 0.0001) and higher cancer-related distress (pre-surgery: ß ? 0.155, p = 0.03; post-surgery: ß = 0.089, p < 0.0001). Post radical prostatectomy BF was also associated with biochemical recurrence during follow-up (ß = 0.089, p = 0.001), and higher quality of life (ß = 0.124, p < 0.001). CONCLUSIONS: Many men affected by PCa perceive BF already soon after diagnosis. The subjective perception of threat or severity associated with the diagnosis of PCa is an essential factor for higher levels of BF, probably more important than objective indicators of the severity of the disease. The early onset of BF and the high degree of similarity of BF reported across the different phases of survivorship suggests that BF is, to a large extent, a dispositional personal characteristic and a cognitive strategy of positively coping with cancer.
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Neoplasias da Próstata , Qualidade de Vida , Masculino , Humanos , Estudos Transversais , Neoplasias da Próstata/terapia , Próstata , ProstatectomiaRESUMO
OBJECTIVES: To investigate prevalence, course, and predictors of longitudinal decision regret in long-term prostate cancer (PCa) survivors treated by radical prostatectomy (RP). PATIENTS AND METHODS: A total of 1003 PCa survivors from the multicentre German Familial PCa Database completed questionnaires on average 7 years after RP in 2007 and at follow-up 13 years later in 2020. Patients completed standardised patient-reported outcome measures on decision regret, decision-making, health-related quality of life, and psychosocial factors. Hierarchical multivariable logistic regression was used to assess predictors of longitudinal decision regret. RESULTS: Decision regret increased significantly over time (9.0% after 6.9 years in 2007 and 12% after 19 years in 2020; P = 0.009). Favourable localised PCa (odds ratio [OR] 1.97, 95% confidence interval [CI] 1.05-3.68), decision regret in 2007 (OR 6.38, 95% CI 3.55-11.47), and a higher depression score (OR 1.37, 95% CI 1.03-1.83) were associated with decision regret in 2020. Shared decision-making (OR 0.55, 95% CI 0.33-0.93) was associated with less decision regret. CONCLUSION: The findings of the present study underline the perseverance of decision regret in long-term PCa survivors and the definitive need for involving patients in the decision-making process to mitigate regret over the long term.
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Neoplasias da Próstata , Qualidade de Vida , Masculino , Humanos , Estudos Longitudinais , Qualidade de Vida/psicologia , Tomada de Decisões , Emoções , Prostatectomia/efeitos adversos , Neoplasias da Próstata/terapia , SobreviventesRESUMO
BACKGROUND: Prostate cancer (PC)-related anxiety is associated with clinically significant declines in health-related quality of life (HRQoL) and psychological well-being. This longitudinal study investigates course and predictors of PC-related anxiety in long-term PC survivors treated by radical prostatectomy (RP). METHODS: Two thousand nine hundred and three survivors from the multicenter German Familial PC Database completed the Memorial Anxiety Scale for PC on average 11 years after RP at the initial assessment in 2015 and then 5 years later. Hierarchical multiple linear regression was used to assess predictors of PC-related anxiety at follow-up. RESULTS: PC-related anxiety remained stable over the 5 years. In hierarchical multiple linear regression, longitudinal predictors of PC-related anxiety 5 years later included a lower level of education (beta: -0.035, p = 0.019), biochemical recurrence (BCR; beta: 0.054, p = 0.002), late BCR (beta: 0.054, p < 0.001), PC anxiety at initial assessment (beta: 0.556, p < 0.001), HRQoL (beta: -0.076, p < 0.001), depression and anxiety symptoms (beta: 0.072, p = 0.001; beta: 0.165, p < 0.001). Predictors of prostate-specific antigen (PSA) anxiety 5 years later included late BCR (beta: 0.044, p = 0.019), PSA anxiety at initial assessment (beta: 0.339, p < 0.001), depression and anxiety symptoms (beta: 0.074, p = 0.008; beta: 0.191, p < 0.001), and treatment decision regret (beta: 0.052, p = 0.006). CONCLUSION: PC-related anxiety remains a burden to survivors many years after diagnosis and treatment. The respective disease-specific anxiety was the strongest predictor of this anxiety 5 years later, which emphasizes the need of screening and monitoring in a timely manner for PC-related anxiety. Treating urologists should screen, identify, and monitor patients at risk for targeted referrals to psychosocial services.
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Antígeno Prostático Específico , Neoplasias da Próstata , Masculino , Humanos , Estudos Longitudinais , Qualidade de Vida/psicologia , Neoplasias da Próstata/terapia , Prostatectomia/efeitos adversos , Ansiedade/epidemiologia , Ansiedade/etiologia , Sobreviventes/psicologia , Recidiva Local de Neoplasia/cirurgiaRESUMO
Introduction: Cancer-affected patients experience high distress due to various burdens. One way to expand psycho-oncological support is through digital interventions. This protocol describes the development and structure of a web-based psycho-oncological intervention, the Make It Training optimized. This intervention is currently evaluated in the Reduct trial, a multicenter randomized controlled trial. Methods: The Make It Training optimized was developed in six steps: A patient need and demand assessment, development and acceptability analysis of a prototype, the formation of a patient advisory council, the revision of the training, implementation into a web app, and the development of a motivation and evaluation plan. Results: Through a process of establishing cancer-affected patients' needs, prototype testing, and patient involvement, the Make It Training optimized was developed by a multidisciplinary team and implemented in a web app. It consists of 16 interactive self-guided modules which can be completed within 16 weeks. Discussion: Intervention protocols can increase transparency and increase the likelihood of developing effective web-based interventions. This protocol describes the process and results of developing a patient-oriented intervention. Future research should focus on the further personalization of web-based psycho-oncological interventions and the potential benefits of combining multiple psychotherapeutic approaches.
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INTRODUCTION: Many patients with cancer experience severe psychological distress, but as a result of various barriers, few of them receive psycho-oncological support. E-mental health interventions try to overcome some of these barriers and the limitation of healthcare offers, enabling patients with cancer to better cope with psychological distress. In the proposed trial, we aim to assess the efficacy and cost-effectiveness of the manualised e-mental health intervention Make It Training- Mindfulness-Based and Skills-Based Distress Reduction in Oncology. Make It Training is a self-guided and web-based psycho-oncological intervention, which includes elements of cognitive behavioural therapy, mindfulness-based stress reduction and acceptance and commitment therapy. The training supports the patients over a period of 4 months. We expect the Make It Training to be superior to treatment as usual optimised (TAU-O) in terms of reducing distress after completing the intervention (T1, primary endpoint). METHODS AND ANALYSIS: The study comprises a multicentre, prospective, randomised controlled confirmatory interventional trial with two parallel arms. The proposed trial incorporates four distinct measurement time points: the baseline assessment before randomisation, a post-treatment assessment and 3 and 6 month follow-up assessments. We will include patients who have received a cancer diagnosis in the past 12 months, are in a curative treatment setting, are 18-65 years old, have given informed consent and experience high perceived psychological distress (Hospital Anxiety and Depression Scale ≥13) for at least 1 week. Patients will be randomised into two groups (Make It vs TAU-O). The aim is to allocate 600 patients with cancer and include 556 into the intention to treat analysis. The primary endpoint, distress, will be analysed using a baseline-adjusted ANCOVA for distress measurement once the intervention (T1) has been completed, with study arm as a binary factor, baseline as continuous measurement and study centre as an additional categorical covariate. ETHICS AND DISSEMINATION: The Ethics Committee of the Medical Faculty Essen has approved the study (21-10076-BO). Results will be published in peer-reviewed journals, conference presentations, the project website, and among self-help organisations. TRIAL REGISTRATION NUMBER: German Clinical Trial Register (DRKS); DRKS-ID: DRKS00025213.
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Terapia de Aceitação e Compromisso , Intervenção Baseada em Internet , Atenção Plena , Neoplasias , Adolescente , Adulto , Idoso , Humanos , Pessoa de Meia-Idade , Atenção Plena/métodos , Estudos Multicêntricos como Assunto , Neoplasias/terapia , Estudos Prospectivos , Ensaios Clínicos Controlados Aleatórios como Assunto , Adulto JovemRESUMO
BACKGROUND: This study investigates current needs and psychosocial burden of out-patients with cancer during the COVID-19-Pandemic. MATERIAL AND METHODS: Between 11/2020 and 02/2021 122 cancer patients who underwent out-patient treatment at the Comprehensive Cancer Center Munich participated in the study. Based on a standardized, semi-structured interview, participants were asked about their knowledge and informational needs related to COVID-19, risk perception and concerns regarding continuing out-patient treatment, COVID-19 related distress, confidence in the national health system, and their readiness to get vaccinated against COVID-19. Additionally, patients filled out the distress thermometer (DT). RESULTS: More than a third of the patients (34,2â%, nâ=â41/120) wanted to receive more information about the effects of the coronavirus on their cancer and their treatment. 17,2â% (nâ=â21/122) had faced changes concerning their current or planned treatment. 42/121 (34,7â%) of the patients were clinically distressed (DT ≥â5). A possible overload of the health care system was the most commonly reported COVID-related concern (77,9â%, nâ=â95/122), followed by being concerned that their family members might be additionally worried about them (56,2â%, nâ=â68/121). 71,2â% (nâ=â74/104) of the patients are willing to be vaccinated; 60â% (nâ=â18/30) of those undecided or refusing at the time of the survey expressed a desire to have a consultation with an oncologist before giving their final consent to vaccination. DISCUSSION: Corona-specific distress of cancer patients relates in particular to the course of therapy, but also to a possible overload of the health care system. Oncology care teams should allow space for questions from their patients, acknowledge possible uncertainties, provide emotional support, and draw attention to reliable sources of information.
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COVID-19 , Neoplasias , COVID-19/epidemiologia , Humanos , Neoplasias/epidemiologia , Neoplasias/terapia , Pacientes Ambulatoriais , Pandemias/prevenção & controle , SARS-CoV-2RESUMO
OBJECTIVE: To improve allocation of psychosocial care and to provide patient-oriented support offers, identification of determinants of elevated distress is needed. So far, there is a lack of evidence investigating the interplay between individual disposition and current clinical and psychosocial determinants of distress in the inpatient setting. METHODS: In this cross-sectional study, we investigated 879 inpatients with different cancer sites treated in a German Comprehensive Cancer Center. Assessment of determinants of elevated distress included sociodemographic, clinical and psychosocial characteristics as well as dimensions of personality. Multiple linear regression was applied to identify determinants of psychosocial distress. RESULTS: Mean age of the patients was M = 61.9 (SD = 11.8), 48.1% were women. In the multiple linear regression model younger age (ß = -0.061, p = 0.033), higher neuroticism (ß = 0.178, p = <0.001), having metastases (ß = 0.091, p = 0.002), being in a worse physical condition (ß = 0.380, p = <0.001), depressive symptoms (ß = 0.270, p = <0.001), not feeling well informed about psychological support (ß = 0.054, p = 0.046) and previous uptake of psychological treatment (ß = 0.067, p = 0.020) showed significant associations with higher psychosocial distress. The adjusted R2 of the overall model was 0.464. CONCLUSION: Controlling for sociodemographic characteristics and dispositional vulnerability, that is neuroticism, current clinical and psychosocial characteristics were still associated with hospitalized patients' psychosocial distress. Psycho-oncologists should address both, the more transient emotional responses, such as depressive symptoms, as well as more enduring patient characteristics, like neuroticism.
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Neoplasias , Estudos Transversais , Feminino , Humanos , Pacientes Internados/psicologia , Masculino , Neoplasias/psicologia , Neuroticismo , Personalidade , Estresse Psicológico/psicologiaRESUMO
BACKGROUND: Individuals affected by cancer need to integrate this experience into their personal biography as their life continues after primary therapy, leading to substantial changes in self-perception. This study identified factors uniquely associated with 5 different cancer-related identities in order to improve the understanding of how self-perception in men affected by prostate cancer is associated with certain clinical and psychosocial characteristics. METHODS: In this cross-sectional study, long-term prostate cancer survivors after radical prostatectomy were asked to choose one of 5 cancer-related identities that described them best. Associations with sociodemographic, clinical, and psychological variables were investigated using multivariable logistic regression. RESULTS: Three thousand three hundred forty-seven men (mean age 78.1 years) surveyed on average 15.6 years after prostatectomy were included. Most men favored the terms "someone who has had cancer" (43.9%) which was associated with a mild disease course, and "patient" (26.3%) which was associated with ongoing therapy and biochemical disease recurrence. The self-descriptions "cancer survivor" (16.8%), "cancer conqueror" (10.9%) and "victim" (2.1%) were less common. "Cancer survivor" was associated with high perceived disease severity (OR: 1.86 [1.44-2.40]). "Cancer survivor" and "cancer conqueror" were related to high benefit finding (OR: 1.89 [1.48-2.40], OR: 1.46 [1.12-1.89] respectively), and only "cancer conqueror" was associated with high well-being (OR: 1.84 [1.35-2.50]). Identification as "victim" was associated with a positive depression screening and low well-being (OR: 2.22 [1.15-4.31], OR: 0.38 [0.20-0.72] respectively) (all p < 0.05). CONCLUSIONS: Although long-term survival is common among men affected by PCa, they display a large diversity in cancer-related identities, which are associated with unique clinical and psychological characteristics. These cancer-related identities and their distinctive properties are associated with psychological well-being even after a long follow-up.
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Sobreviventes de Câncer/psicologia , Prostatectomia , Neoplasias da Próstata/psicologia , Autoimagem , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Autobiografias como Assunto , Estudos Transversais , Alemanha , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/sangue , Razão de Chances , Neoplasias da Próstata/cirurgia , Autoavaliação (Psicologia) , Fatores Socioeconômicos , Fatores de TempoRESUMO
BACKGROUND: Although fear of cancer recurrence (FCR) or disease progression is among the most endorsed unmet needs and concerns of cancer survivors, research on the course of FCR in long-term survivors is scarce. The objective of this study was to assess longitudinally the prevalence and predictors of FCR in long-term prostate cancer (PCa) survivors. METHODS: In all, 2417 survivors from the multicenter German Familial Prostate Cancer Database completed the Fear of Progression Questionnaire-Short Form on average 7 years (T1 in 2010) after radical prostatectomy and at follow-up 9 years later (T2 in 2019). Hierarchical multivariable logistic regression was used to assess predictors of FCR at follow-up. RESULTS: The mean age at the initial assessment was 69.5 years (standard deviation, 5.9 years); 6.5% and 8.4% of patients reported clinical FCR at the initial assessment (T1) and at the follow-up (T2), respectively. In a multivariable analysis controlling for concurrent associations, longitudinal predictors of FCR 9 years later included a lower level of education (odds ratio [OR], 4.35; 95% confidence interval [CI], 2.33-8.33), years since radical prostatectomy (OR, 1.10; 95% CI, 1.03-1.18), biochemical recurrence (OR, 1.67; 95% CI, 1.02-2.72), no current adjuvant therapy (OR, 2.38; 95% CI, 1.19-4.76), FCR (OR, 10.75; 95% CI, 6.18-18.72), and anxiety (OR, 1.35; 95% CI, 1.06-1.72). CONCLUSIONS: FCR remains a burden to certain PCa survivors even many years after their diagnosis and treatment. Health care professionals should monitor for FCR and identify patients at risk to provide appropriate psychosocial care because FCR is leading to limitations in quality of life and psychological well-being.
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Sobreviventes de Câncer , Sobreviventes de Câncer/psicologia , Progressão da Doença , Medo/psicologia , Humanos , Estudos Longitudinais , Masculino , Recidiva Local de Neoplasia/epidemiologia , Recidiva Local de Neoplasia/psicologia , Próstata , Prostatectomia , Qualidade de VidaRESUMO
Background: Fear of progression (FoP), or fear of cancer recurrence (FCR), is characterized by worries or concerns about negative illness-related future events. Actually, to worry is a common cognitive process that, in its non-pathological form, belongs to daily life. However, worry can also become pathological appearing as a symptom of mental disorders. This study aimed at investigating the associations among daily worry, pathological worry, and FoP in patients with cancer. Methods: This is a cross-sectional study that includes 328 hospitalized patients with cancer. Patients filled out the FoP Questionnaire (FoP-Q), the Worry Domains Questionnaire (WDQ) for the assessment of daily worry, and the Penn State Worry Questionnaire (PSWQ) for the assessment of pathological worry. Depressive, anxiety, and somatic symptoms were measured with modules of the Patient Health Questionnaire [Patient Health Questionnaire-Depressive Symptoms (PHQ-2), Generalized Anxiety Disorder-2 (GAD-2), and Patient Health Questionnaire-Somatic Symptoms (PHQ-15)]. Furthermore, a structured clinical interview was conducted for the assessment of anxiety disorders. The hierarchical multiple linear regression analysis was used to identify factors independently associated with FoP. Results: Mean age of the participants was M = 58.5 years (SD = 12.8), and 64.6% were men. FoP and worry were significantly intercorrelated (r = 0.58-0.78). The level of FoP was most strongly associated with daily worry (ß = 0.514, p < 0.001), followed by pathological worry (ß = 0.221, p < 0.001). Further significant determinants were younger age and depressive and anxiety symptoms. Clinical variables were not independently associated with FoP. The final model explained 74% of the variance. Discussion: Fear of progression is strongly associated with daily worry and pathological worry. These results bring up the question of whether FoP is an expression of a general tendency to worry. Whether a general tendency to worry, in fact, represents an independent vulnerability factor for experiencing FCR/FoP needs to be investigated in a longitudinal research design.
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COVID-19 , Neoplasias , Humanos , Oncologia , Neoplasias/epidemiologia , Neoplasias/terapia , Pandemias , SARS-CoV-2RESUMO
BACKGROUND: End of life symptoms and symptom management as well as the quality of dying (QoD) of persons with advanced dementia (PWAD) have not yet been systematically studied in Germany. OBJECTIVE: 1) To investigate symptoms, treatment and care at the end of life, advance care planning, and circumstances of death of recently deceased PWAD; 2) To determine whether there are differences between young and late onset dementia (YOD and LOD). METHODS: The study was performed in the context of the project EPYLOGE (IssuEs in Palliative care for persons in advanced and terminal stages of Young-onset and Late-Onset dementia in Germany). Closest relatives of recently deceased patients with advanced YOD (Nâ=â46) and LOD (Nâ=â54) living at home or in long term care were interviewed. RESULTS: Circumstances of death, symptoms, and treatment appeared to be similar between YOD and LOD, except that persons with LOD had significantly more somatic comorbidities and were admitted to hospital in the last three months of life more often than persons with LOD. At end of life, 60% of PWAD appeared to be "at peace". Difficulty swallowing, gurgling, shortness of breath, and discomfort were observed most frequently. Large interindividual differences in suffering and QoD were present. Determinants of QoD were not identified. CONCLUSION: Our findings suggest that low QoD was caused by inadequate recognition and/or insufficient treatment of burdensome physical and emotional symptoms. PWADs' needs should be assessed regularly, and strategies focusing on treatment and implementing support for both the patient and caregiver must be established.
Assuntos
Idade de Início , Cuidadores/psicologia , Demência/psicologia , Cuidados Paliativos/psicologia , Planejamento Antecipado de Cuidados , Idoso , Idoso de 80 Anos ou mais , Demência/reabilitação , Feminino , Humanos , Assistência de Longa Duração , Masculino , Qualidade de VidaRESUMO
PURPOSE: Health care systems in most European countries were temporarily restructured to provide as much capacity as possible for the treatment of coronavirus disease 2019 (COVID-19) patients. Subsequently, all elective surgeries had to be cancelled and postponed for months. The aim of the present study was to assess the pretreatment health status before and after COVID-19-related cancellation and the psychosocial distress caused by the cancellation. METHODS: For this study, a questionnaire was developed collecting sociodemographic data and information on health status before and after the cancellation. To assess psychosocial distress, the validated depression module of the Patient Health Questionnaire (PHQ-9), was implemented. PHQ-9-Scores of 10 and above were considered to indicate moderate or severe depressive symptoms. In total, 119 patients whose elective orthopaedic surgery was postponed due to the COVID-19 pandemic were surveyed once at least 8 weeks after the cancellation. RESULTS: Seventy-seven patients (65%; 34 female, 43 male) completed the questionnaire and were included. The predominant procedures were total knee arthroplasty (TKA), hip arthroscopy and foot and ankle surgery. The mean pain level significantly increased from 5.5 ± 2.2 at the time of the initially scheduled surgery to 6.2 ± 2.5 at the time of the survey (p < 0.0001). The pain level before cancellation of the surgery was significantly higher in female patients (p = 0.029). An increased analgetic consumption was identified in 46% of all patients. A mean PHQ-9 score of 6.1 ± 4.9 was found after cancellation. PHQ-9 scores of 10 or above were found in 14% of patients, and 8% exhibited scores of 15 points or above. Significantly higher PHQ-9 scores were seen in female patients (p = 0.046). No significant differences in PHQ-9 scores were found among age groups, procedures or reasons for cancellation. CONCLUSION: Cancellation of elective orthopaedic surgery resulted in pain levels that were significantly higher than when the surgery was scheduled, leading to increased analgesic use. Additionally, significant psychosocial distress due to the cancellation was identified in some patients, particularly middle-aged women. Despite these results, confidence in the national health care system and in the treating orthopaedic surgeons was not affected. LEVEL OF EVIDENCE: Level III.