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1.
BMC Cancer ; 24(1): 160, 2024 Jan 31.
Article in English | MEDLINE | ID: mdl-38297192

ABSTRACT

BACKGROUND: This study aims to explore the priorities and counselling needs of patients with muscle-invasive bladder cancer faced with a decision between radical cystectomy and trimodality therapy. METHODS: We performed a qualitative study according to the phenomenological approach. Sixteen muscle-invasive bladder cancer survivors who underwent radical cystectomy or trimodality therapy completed a semi-structured interview between May 2022 and February 2023. Patients were recruited via Ghent University Hospital and a patient organisation. Data were analysed with inductive thematic analysis by a multi-disciplinary team using an iterative approach and investigators' triangulation. RESULTS: Four main priorities determining the treatment decision were identified. (1) curing the disease; (2) health-related quality of life (physical, mental and social); (3) confidence in the treatment, which was mainly based on trust in the clinician; and (4) personal attributes. Trust in the clinician can be achieved by fulfilling the patient's information needs (accurate, complete, clear, impartial, personalised, realistic, and transparent information), ensuring accessibility of the clinician, and creating a clear and personalised treatment plan, involving patients to the extend they desire. Many patients considered a patient decision aid as a valuable asset in this process. CONCLUSION: Priorities vary between patients with muscle-invasive bladder cancer. Identifying individual priorities and offering personalised information about them is crucial for ensuring trust in the clinician and confidence in the treatment. Use of a patient decision aid can be beneficial in this process.


Subject(s)
Urinary Bladder Neoplasms , Urinary Bladder , Humans , Cystectomy , Quality of Life , Urinary Bladder Neoplasms/surgery , Counseling , Muscles , Neoplasm Invasiveness , Treatment Outcome
2.
Psychooncology ; 31(2): 219-226, 2022 02.
Article in English | MEDLINE | ID: mdl-34449941

ABSTRACT

OBJECTIVES: Investigating supportive care (SC) needs and utilization/willingness to use SC services from diagnosis to one year after radical cystectomy in bladder cancer (BC) patients. MATERIALS & METHODS: A longitudinal cohort study was conducted in 90 BC patients at Ghent/Leuven University Hospitals between April 2017 and December 2020. The Supportive Care Needs Survey-short form (SCNS-SF34) was used before radical cystectomy, one, three, six and 12 months after radical cystectomy. Additional questions assessed utilization/willingness to use SC services. Linear mixed models were performed. RESULTS: The majority of BC patients report at least one moderate or high SC need at diagnosis (82%), month 1 (84%), month 3 (86%), month 6 (64%), and month 12 (60%). Significant decreases over time were seen for all domains (p < 0.001), except for sexuality (p = 0.275). From baseline to month 1, physical needs first significantly increased (p = 0.001) after which they decreased. Psychological (e.g. fears about the future) and informational (e.g. information on how to get better) needs were most common at baseline whereas physical (e.g. lack of energy) and informational needs were more common in the early postoperative phases. The majority of patients (ranging from 81% (month 1) to 91% (month 12)) did not make use of SC services and the majority of the patients (ranging from 81% (month 1) to 88% (month 12)) did not wish to talk about their problems to someone. Those willing to talk to someone preferred their physician. CONCLUSIONS: A clear gap exists between the large proportion of SC needs experienced by BC patients undergoing radical cystectomy and the low use of SC services.


Subject(s)
Cystectomy , Urinary Bladder Neoplasms , Fear , Female , Humans , Longitudinal Studies , Male , Rare Diseases , Urinary Bladder Neoplasms/surgery
3.
Future Oncol ; 18(18): 2201-2216, 2022 Jun.
Article in English | MEDLINE | ID: mdl-35382557

ABSTRACT

Aim: To evaluate the impact of the pandemic on the well-being of cancer staff and determine the uptake of opt-in mitigation strategies. Materials & methods: Staff at Guy's Cancer Centre (London, UK) participated in an anonymized survey between May and August 2021. Results: Of 1182 staff, 257 (21.7%) participated. Ethnicity (p = 0.020) and comorbidity burden (p = 0.022) were associated with SARS-CoV-2 infection status. Of 199 respondents, seven (3.6%) were vaccine-hesitant, which was associated with low flu vaccine uptake (p < 0.001). Greater stress was associated with younger age (p = 0.030) and redeployment (p = 0.012). Lack of time and skepticism were barriers to using mental well-being resources. Conclusion: Albeit cautious, numerous trends the authors observed echo those in the published literature. Improved accessibility, awareness and utility of mental well-being resources are required.


COVID-19 is caused by the SARS-CoV-2 virus. The pandemic has applied immense pressure to healthcare workers, putting their physical and mental well-being at risk. However, the impact for cancer staff, specifically, is less known. In a survey of 257 cancer staff at Guy's Cancer Centre (London, UK; May­August 2021), the authors found that staff of particular ethnic groups, or with pre-existing illnesses, appeared more likely to become infected with SARS-CoV-2. Few staff were hesitant about SARS-CoV-2 vaccination, appearing more common among those not receiving the flu vaccine. For many, stress increased over time. However, barriers prevent staff from using mental well-being resources. With findings from larger studies, this work will be useful for strategies protecting cancer staff well-being.


Subject(s)
COVID-19 , Neoplasms , COVID-19/epidemiology , COVID-19/prevention & control , COVID-19 Vaccines/therapeutic use , Humans , Neoplasms/epidemiology , Neoplasms/therapy , Pandemics , SARS-CoV-2 , State Medicine , Vaccination
4.
Support Care Cancer ; 30(2): 1427-1439, 2022 Feb.
Article in English | MEDLINE | ID: mdl-34524527

ABSTRACT

BACKGROUND: There exists scant evidence on the optimal approaches to integrating patient-reported outcomes (PROs) in clinical practice. This study gathered oncology practitioners' experiences with implementing PROs in cancer care. METHODS: Between December 2019 and June 2020, we surveyed practitioners who reported spending > 5% of their time providing clinical care to cancer patients. Respondents completed an online survey describing their experiences with and barriers to using PROs in clinical settings. RESULTS: In total, 362 practitioners (physicians 38.7%, nurses 46.7%, allied health professionals 14.6%) completed the survey, representing 41 countries (Asia-Pacific 42.5%, North America 30.1%, Europe 24.0%, others 3.3%). One quarter (25.4%) identified themselves as "high frequency users" who conducted PRO assessments on > 80% of their patients. Practitioners commonly used PROs to facilitate communication (60.2%) and monitor treatment responses (52.6%). The most commonly reported implementation barriers were a lack of technological support (70.4%) and absence of a robust workflow to integrate PROs in clinical care (61.5%). Compared to practitioners from high-income countries, more practitioners in low-middle income countries reported not having access to a local PRO expert (P < .0001) and difficulty in identifying the appropriate PRO domains (P = .006). Compared with nurses and allied health professionals, physicians were more likely to perceive disruptions in clinical care during PRO collection (P = .001) as an implementation barrier. CONCLUSIONS: Only a quarter of the surveyed practitioners reported capturing PROs in routine clinical practice. The implementation barriers to PRO use varied across respondents in different professions and levels of socioeconomic resources. Our findings can be applied to guide planning and implementation of PRO collection in cancer care.


Subject(s)
Medical Oncology , Neoplasms , Allied Health Personnel , Humans , Neoplasms/therapy , Patient Reported Outcome Measures , Surveys and Questionnaires
5.
Support Care Cancer ; 30(11): 9379-9391, 2022 Nov.
Article in English | MEDLINE | ID: mdl-36173560

ABSTRACT

PURPOSE: Evidence supports the role of prescribed exercise for cancer survivors, yet few are advised to exercise by a healthcare practitioner (HCP). We sought to investigate the gap between HCPs' knowledge and practice from an international perspective. METHODS: An online questionnaire was administered to HCPs working in cancer care between February 2020 and February 2021. The questionnaire assessed knowledge, beliefs, and practices regarding exercise counselling and referral of cancer survivors to exercise programs. RESULTS: The questionnaire was completed by 375 participants classified as medical practitioners (42%), nurses (28%), exercise specialists (14%), and non-exercise allied health practitioners (16%). Between 35 and 50% of participants self-reported poor knowledge of when, how, and which cancer survivors to refer to exercise programs or professionals, and how to counsel based on exercise guidelines. Commonly reported barriers to exercise counselling were safety concerns, time constraints, cancer survivors being told to rest by friends and family, and not knowing how to screen people for suitability to exercise (40-48%). Multivariable logistic regression models including age, gender, practitioner group, leisure-time physical activity, and recall of guidelines found significant effects for providing specific exercise advice (χ2(7) = 117.31, p < .001), discussing the role of exercise in symptom management (χ2(7) = 65.13, p < .001) and cancer outcomes (χ2(7) = 58.69, p < .001), and referring cancer survivors to an exercise program or specialist (χ2(7) = 72.76, p < .001). CONCLUSION: Additional education and practical support are needed to equip HCPs to provide cancer survivors with exercise guidelines, resources, and referrals to exercise specialists.


Subject(s)
Neoplasms , Referral and Consultation , Humans , Surveys and Questionnaires , Exercise , Attitude of Health Personnel , Counseling , Neoplasms/therapy
6.
Eur J Cancer Care (Engl) ; 31(3): e13571, 2022 May.
Article in English | MEDLINE | ID: mdl-35304799

ABSTRACT

OBJECTIVES: Investigating associations between self-efficacy, social support and quality of life (HRQoL) and mediating effects of coping among bladder cancer (BC) patients treated with radical cystectomy (RC). METHODS: A cross-sectional study was conducted from January 2012 to December 2014 with 99 BC patients. An online survey assessed patient characteristics, HRQoL, coping strategies, self-efficacy and social support. A stepwise multiple linear regression model was used. RESULTS: Self-efficacy and social support were significantly associated with HRQoL. Complete mediation effects of adaptive/maladaptive coping strategies emerged for the associations between self-efficacy and social support with functional well-being (B = 0.247, 95% CI 0.119-0.374, p < 0.001; B = -0.414, 95% CI -0.526 to -0.302, p < 0.001) and total Functional Assessment of Cancer Therapy-Bladder (FACT-BI) (B = 0.779, 95% CI 0.351-1.207, p < 0.001; B = -1.969, 95% CI -2.344 to -1.594, p < 0.001). Maladaptive coping mediated the associations of self-efficacy and social support with physical well-being (B = -0.667, 95% CI -0.752 to -0.516, p < 0.001) and disease-specific symptoms (B = -0.413, 95% CI -0.521 to -0.304, p < 0.001). A partial mediation effect of adaptive coping was found for the association between self-efficacy and social well-being (B = 0.145, 95% CI 0.016-0.273, p < 0.05). Social support was significantly associated with emotional (B = 0.067, 95% CI 0.027-0.108, p < 0.001) and social well-being (B = 0.200, 95% CI 0.146-0.255, p < 0.001). CONCLUSION: Interventions should tackle self-efficacy, social support and coping strategies to improve BC patients' HRQoL.


Subject(s)
Quality of Life , Urinary Bladder Neoplasms , Adaptation, Psychological , Cross-Sectional Studies , Cystectomy , Female , Humans , Male , Quality of Life/psychology , Rare Diseases , Self Efficacy , Social Support , Urinary Bladder , Urinary Bladder Neoplasms/surgery
7.
World J Urol ; 39(2): 357-364, 2021 Feb.
Article in English | MEDLINE | ID: mdl-32008114

ABSTRACT

PURPOSE: To determine the start exercise prescription dose in metastatic castrate-resistant prostate cancer (mCRPC) patients receiving second-line hormone treatment and recommended phase II exercise prescription. METHODS: Patients were enrolled in a 3 + 3 dose escalation phase I trial of aerobic, resistance, and flexibility exercises to evaluate dose-limiting tolerance and safety. Tolerance was defined as Borg score ≤ 16 and safety (pain) as a visual analogue scale score (VAS) ≤ 3 and CTCAE grade < 2. Dose level 1 (escalation start dose) was set at 15 min. Aerobic training (50-80% HRmax warm-up and cooling-down; and 65-80% HRmax. core), 1 set with 8-10 repetitions (reps.) resistance training (50-60% 1-RM, 8 exercises), and 1 set (30s) with 2 reps flexibility training (5 exercises). The prescription dose escalation was designed in four levels (from dose -1 to 3), with a dose escalation in volume and intensity of the exercises. RESULTS: Nine patients were included in two dosing cohorts and were under active treatment (n = 4 abiraterone acetate and n = 5 enzalutamide). Dose limiting safety concerns were observed in 2 out of 3 patients in dose level 2 and 1 patient out of 6 in dose level 1 due to VAS > 3 during resistance training and/or flexibility training. No tolerance issues were observed in the two dosing cohorts. The optimal start exercise prescription dose was set at dose level 1 due to safety issues at dose level 2. CONCLUSION: Our findings suggest that exercise is perceived tolerable in mCRPC patients receiving second-line hormone therapy. Caution is indicated on safety during performance of the exercises.


Subject(s)
Exercise Therapy/methods , Prostatic Neoplasms, Castration-Resistant/therapy , Aged , Combined Modality Therapy , Humans , Male , Middle Aged , Neoplasm Metastasis , Prostatic Neoplasms, Castration-Resistant/drug therapy , Prostatic Neoplasms, Castration-Resistant/pathology
8.
Future Oncol ; 17(28): 3667-3670, 2021 Oct.
Article in English | MEDLINE | ID: mdl-34213357

ABSTRACT

Tweetable abstract Need to add #PPI coordinator to required job profiles in #research: improve research quality, enthuse research team and ensure #patients and their families are the center of our research activities.


Subject(s)
Biomedical Research , Medical Oncology , Patient Participation , Humans
9.
BMC Urol ; 21(1): 110, 2021 Aug 17.
Article in English | MEDLINE | ID: mdl-34404373

ABSTRACT

BACKGROUND: Upper tract urothelial carcinoma (UTUC) is a rare urological cancer that is still an important public health concern in many areas around the world. Although UTUC has been linked to a number of risk factors, to our knowledge no systematic review has been published on the overall incidence and prevalence of de-novo UTUC. This review aimed to examine the global epidemiology of UTUC to provide clinicians and public health specialists a better understanding of UTUC. METHODS: A systematic search was conducted on MEDLINE, Embase, and the Web of Science using a detailed search strategy. Observational epidemiological studies describing the incidence and prevalence of de-novo UTUC in adults were included, and the Joanna Briggs Institute checklist was used for critical appraisal and data extraction of the studies selected. RESULTS: The systematic search identified 3506 papers, of which 59 papers were included for qualitative synthesis. The studies selected included data ranging from the years 1943 to 2018. A comprehensive qualitative synthesis of the data was performed. UTUC incidence generally varied according to age (higher with increasing age), sex (unclear), race (unclear), calendar time (increased, stable, or decreased according to region), geographical region (higher in Asian countries), occupation (higher in seamen and printers), and other population characteristics. Prevalence was only reported by one study, which showed UTUC to have the highest incidence of the rare urogenital cancers in Europe. CONCLUSION: This systematic review highlights an increased incidence of UTUC in certain groups, including increasing age and certain occupations such as seamen. The incidence of UTUC also varies between certain geographical regions. The trend of UTUC incidence for sex, race, and calendar time is less clear due to a wide variety of metrics used by the studies identified. More studies are also required on the prevalence of UTUC to understand its disease burden. Trial registration This review was registered on PROSPERO (registration number CRD42019134255).


Subject(s)
Carcinoma/epidemiology , Urologic Neoplasms/epidemiology , Age Distribution , Colorectal Neoplasms, Hereditary Nonpolyposis/epidemiology , Comorbidity , Geography , Humans , Incidence , Occupations , Prevalence , Race Factors , Sex Distribution , Time Factors
10.
Eur J Cancer Care (Engl) ; 30(2): e13363, 2021 Mar.
Article in English | MEDLINE | ID: mdl-33205552

ABSTRACT

INTRODUCTION: Uptake of sufficient physical activity before and after radical cystectomy is important to improve physical and psychosocial outcomes in bladder cancer (BC) patients. METHODS: In this paper, we describe the development of an evidence-based and theory-informed intervention, guided by the steps of the Intervention Mapping approach, to promote physical activity before and after radical cystectomy in patients with BC. RESULTS: The intervention is a home-based physical activity program. The preoperative timeframe of the intervention is 4 or 12 weeks, depending on administration of neoadjuvant chemotherapy. Postoperatively, the intervention will last for 12 weeks. The intervention consists of a digital oncological platform (DOP), several consultations with healthcare professionals, personal booklet and follow-up phone calls. DOP includes information, diaries, visual representation of progress, mailbox, videos of peers and treating physician explaining the benefits of physical activity, photo material of exercises and a walking program with an activity tracker. Individual goals will be set and will be self-monitored by the patient through DOP. Patients will receive alerts and regular feedback. CONCLUSIONS: Intervention Mapping ensures transparency of all intervention components and offers a useful approach for the development of behaviour change interventions for cancer patients and for translation of theories into practice.


Subject(s)
Urinary Bladder Neoplasms , Cystectomy , Electronics , Exercise , Exercise Therapy , Health Promotion , Humans , Urinary Bladder Neoplasms/surgery
11.
BMC Fam Pract ; 22(1): 233, 2021 11 18.
Article in English | MEDLINE | ID: mdl-34789153

ABSTRACT

BACKGROUND: Little is known about how patients with low socioeconomic status (SES) experience their chronic disease, and how it impacts health-related quality of life (HRQoL). Compared to their more affluent counterparts, worse outcomes have been reported. A better understanding of the domains of HRQoL that are relevant to these specific populations is therefore needed. We explored the experiences of living with a chronic disease in low SES persons. METHODS: A qualitative interview study was performed in Flanders, Belgium. Semi-structured interviews were conducted in chronically ill patients, selected through purposive sampling. Interviews were audio-recorded and transcribed verbatim. Analysis followed an inductive and iterative approach. RESULTS: Fifteen patients were interviewed. Six major themes were identified: a heavy bag to carry, loss of autonomous life, inner and outer loneliness, emotional imbalance, unmet need for support, and coping strategies. Patients experienced their illness as an additional problem on top of all other problems (i.e. financial/social problems, traumatic life events). In general, the disease burden and non-disease burden were mutually reinforcing, resulting in greater dependency, greater risk of social isolation, greater psychological distress, and greater risk of impaired HRQoL. CONCLUSIONS: This study is the first to provide detailed insight into the experiences of living with a chronic disease in low SES persons. A conceptual model is proposed that can be used in daily clinical practice to raise awareness among clinicians and health care providers that the patient's needs go beyond the disease itself. Future research is needed to validate and test the model.


Subject(s)
Adaptation, Psychological , Quality of Life , Chronic Disease , Humans , Qualitative Research , Social Class
12.
Qual Life Res ; 29(11): 2887-2910, 2020 Nov.
Article in English | MEDLINE | ID: mdl-32504291

ABSTRACT

PURPOSE: This umbrella review aims to evaluate the quality, summarize and compare the conclusions of systematic reviews investigating the impact of curative treatment options on health-related quality of life (HRQoL) in muscle-invasive bladder cancer (MIBC). METHODS: The Cochrane Library, MEDLINE, Embase and Web of Science were searched independently by two authors from inception until 06 January 2020. Systematic reviews and meta-analyses assessing the impact of any curative treatment option on HRQol in MIBC patients were eligible. Risk of bias was assessed using the AMSTAR 2 tool. RESULTS: Thirty-two reviews were included. Robot-assisted RC with extracorporeal urinary diversion and open RC have similar HRQoL (n = 10). Evidence for pelvic organ-sparing RC was too limited (n = 2). Patients with a neobladder showed better overall and physical HRQoL outcomes, but worse urinary function in comparison with ileal conduit (n = 17). Bladder-preserving radiochemotherapy showed slightly better urinary and sexual but worse gastro-intestinal HRQoL outcomes in comparison with RC patients (n = 6). Quality of the reviews was low in more than 50% of the available reviews and most of the studies included in the reviews were nonrandomized studies. CONCLUSION: This umbrella review gives a comprehensive overview of the available evidence to date.


Subject(s)
Quality of Life/psychology , Urinary Bladder Neoplasms/therapy , Humans , Urinary Bladder Neoplasms/psychology
13.
Strahlenther Onkol ; 195(5): 393-401, 2019 May.
Article in English | MEDLINE | ID: mdl-30406289

ABSTRACT

PURPOSE: The risk of developing acute radiotherapy(RT)-induced side effects may increase with hypofractionated RT. To detect treatment-related side effects, patient-reported outcomes (PROs) might be more reliable than physician-reported outcomes. Therefore, we tried to evaluate the rate of agreement between urinary and gastrointestinal (GI) side effects and the prevalence of side effects reported by patients and by physicians. METHODS: Data from a randomized controlled trial (RCT) comparing two hypofractionated RT schedules were used. Urinary (nocturia, incontinence, frequency, dysuria, and urgency) and GI (obstruction, diarrhea, vomiting, nausea, bloating, hemorragia, and incontinence) symptoms measured by the EORTC QLQ-C30 and PR-25 were used for PROs. The same symptoms were scored by the physician using the Common Terminology Criteria Adverse Events v4.0. Outcomes were reported at baseline, end of treatment, month 1, and month 3. PROs and physician-reported outcomes were converted in two categories (0 = no symptoms; 1 = symptoms of any severity) and were correlated using the kappa (κ) correlation statistics. Values below 0.40 were considered low agreement. In addition, the prevalence of symptoms was calculated. RESULTS: Data from 160 patients were used. The mean value for Cohen's κ was 0.31 (ranging between 0.04 and 0.55) and 0.23 (ranging between 0.04 and 0.47) for urinary and GI symptoms, respectively. Except for three symptoms at baseline, all symptoms reported by patients were higher than those reported by physicians. CONCLUSION: There is low agreement between symptoms reported by patients and physicians, with high rates of underreporting by the physician.


Subject(s)
Attitude of Health Personnel , Gastrointestinal Tract/radiation effects , Patient Satisfaction , Prostatic Neoplasms/radiotherapy , Radiation Dose Hypofractionation , Radiation Injuries/etiology , Urogenital System/radiation effects , Aged , Humans , Male , Middle Aged , Prevalence , Prospective Studies , Quality of Life , Radiation Injuries/epidemiology , Reproducibility of Results , Risk , Treatment Outcome
14.
Psychooncology ; 28(12): 2270-2285, 2019 12.
Article in English | MEDLINE | ID: mdl-31617635

ABSTRACT

OBJECTIVE: Existing research indicates that moderate-to-vigorous physical activity (PA) alleviates treatment side effects and is associated with survival in men with prostate cancer. We aimed to ascertain the state of research investigating barriers and facilitators to PA in men with prostate cancer and synthesise existing qualitative research on this topic. METHODS: A systematic review of qualitative and quantitative studies was conducted. MEDLINE, Embase, PsycINFO, Web of Knowledge, CINAHL, PEDro, OATD, and WorldCat were searched to June 2019 for quantitative studies investigating causes or predictors of PA or qualitative studies describing patient-reported barriers/facilitators to PA, amongst men with prostate cancer of any stage. Thirty-two studies (n = 17 quantitative; n = 15 qualitative) were included from 3698 screened articles. RESULTS: Heterogeneity and unsystematic reporting of quantitative study methods prohibited a quantitative data synthesis. Thematic synthesis of qualitative studies produced five analytical themes: individual needs by treatment pathway, self-determination and its relationship with prostate cancer-related events, co-ordination and support of the clinical care team, individual preferences in discrete aspects of PA engagement style, and the potential for a bidirectional facilitative relationship between structured group PA and spontaneous peer support. Both qualitative and quantitative studies indicated incontinence as a barrier. CONCLUSIONS: Unsystematic reporting of interventions hinders a robust quantitative understanding of behavioural intervention research in this subject area. Good co-ordination of multidisciplinary care personnel could facilitate PA, by enabling a more comprehensive approach to targeting social cognitive processes. Well-timed intervention and access to highly individualised PA support, including optional group PA classes, seem to also be important facilitators.


Subject(s)
Cancer Survivors/psychology , Exercise/psychology , Prostatic Neoplasms/psychology , Prostatic Neoplasms/rehabilitation , Behavior Therapy , Counseling , Humans , Male , Qualitative Research
15.
Qual Life Res ; 28(12): 3153-3161, 2019 Dec.
Article in English | MEDLINE | ID: mdl-31531840

ABSTRACT

PURPOSE: Chronic diseases are associated with impaired health-related quality of life (HRQoL) outcomes. Comparison of HRQoL outcomes between different diseases and with the general population is of major importance to health economists, epidemiologists, clinicians, and policy makers. The aim of this systematic literature review was to develop a catalogue with EQ-5D scores in chronic non-communicable diseases, and to compare these scores with reference values from the general population. METHODS: MEDLINE, Embase, and Web of Science were systematically searched independently by two reviewers. Studies were included if they reported mean EQ-5D index values for the adult population and if these scores were compared with the general population. The QualSyst tool for quantitative research was used for quality appraisal. RESULTS: Two hundred and seven articles met the inclusion criteria. An extensive catalogue summarizes the EQ-5D scores in a wide variety of chronic diseases. Mean EQ-5D index values ranged between - 0.20 and 1. Lower EQ-5D scores are reported in chronic diseases compared to the general population, specifically in neurological disorders. Most of the diseases demonstrate a substantial disutility, although a minority of diseases have equal or even higher index scores than the general population. CONCLUSION: A comprehensive, international catalogue has been developed to provide EQ-5D index scores for diverse chronic diseases compared with reference values based on the available literature. The catalogue gives a clear overview of the existing EQ-5D scores and can be rapidly accessed by researchers worldwide for different applications such as health economic evaluations, decision making, resource allocation, and other policy objectives. Future studies should focus on unexamined diseases and specific patient groups to expand the evidence base on HRQoL in chronic diseases.


Subject(s)
Chronic Disease/psychology , Health Status , Quality of Life/psychology , Adult , Cost-Benefit Analysis , Decision Making , Female , Humans , MEDLINE , Male , Middle Aged , Minority Groups , Surveys and Questionnaires
16.
Clin Rehabil ; 33(4): 750-761, 2019 Apr.
Article in English | MEDLINE | ID: mdl-30514109

ABSTRACT

OBJECTIVE:: To explore the determinants of physical activity in patients with bladder cancer before and after radical cystectomy. DESIGN:: A qualitative research design using semi-structured face-to-face interviews. SETTING AND SUBJECTS:: A total of 30 interviews were conducted with people diagnosed with bladder cancer and treated with radical cystectomy at Ghent University Hospital. MAIN MEASURES:: The interviews were audiotaped and transcribed verbatim. Framework analysis with constant comparison between and within interviews was applied until final topics were derived from interpreting the data. RESULTS:: Physical activity behavior in patients with bladder cancer is determined multifactorial with condition-related (e.g. urinary symptoms, comorbidities), therapy-related (e.g. fatigue, diarrhea), patient-related (e.g. outcome expectations, coping skills, definitions of physical activity), social/economic-related (e.g. social support, attractive environment) and health system-related (e.g. physicians' advice, information) factors. CONCLUSION:: The results of this study can guide the development of theory-based behavior change interventions to increase physical activity in bladder cancer patients.


Subject(s)
Cystectomy/psychology , Exercise/psychology , Life Change Events , Urinary Bladder Neoplasms/psychology , Aged , Aged, 80 and over , Attitude to Health , Fatigue/complications , Fatigue/etiology , Female , Humans , Interviews as Topic , Male , Middle Aged , Self Efficacy , Social Support , Urinary Bladder Neoplasms/surgery , Urinary Diversion/psychology
17.
BJU Int ; 121(4): 610-618, 2018 04.
Article in English | MEDLINE | ID: mdl-29194928

ABSTRACT

OBJECTIVES: To assess the effects of a prostate cancer (PCa) clinical pathway on the implementation of evidence-based strategies for the management of androgen deprivation therapy (ADT)-induced side effects. PATIENTS AND METHODS: A clinical pathway was introduced at hospital level in 2015. The pathway consists of evidence-based strategies for the management of ADT-induced side effects. All patients with PCa receiving ADT for >6 months were eligible to enter the clinical pathway. Data on recommended evidence-based strategies were retrospectively extracted from the electronic health records of all eligible patients in the year before (2014) and the year of implementation of the pathway (2015). Descriptive statistics were used for patient characteristics. The chi-squared test (or Fisher's exact test) and Mann-Whitney U-test were used to compare results in the control group with those in the intervention group. RESULTS: In total, 126 patients were included in the control group and 132 patients in the intervention group. Baseline patient characteristics were well balanced. After implementation of the pathway, metabolic, bone and cardiac risk assessment screenings were more frequently applied in the intervention group (metabolic 46% vs 4%; bone 58% vs 10%; cardiac 61% vs 16%; P < 0.001). Advice on strategies preventing ADT-induced side effects was more frequently provided in the intervention group (exercise 62% vs 11%; nutrition 58% vs 10%; psycho-education 54% vs 13%; P < 0.001). CONCLUSION: A clinical pathway for patients with PCa improved the implementation of evidence-based strategies for the management of ADT-induced side effects. A clinical pathway could serve as a method to bridge the gap between evidence-based guidelines and daily clinical practice.


Subject(s)
Androgen Antagonists , Prostatic Neoplasms , Aged , Aged, 80 and over , Androgen Antagonists/adverse effects , Androgen Antagonists/therapeutic use , Comorbidity , Evidence-Based Medicine , Humans , Male , Middle Aged , Prostatic Neoplasms/epidemiology , Prostatic Neoplasms/prevention & control , Prostatic Neoplasms/therapy , Risk Factors
18.
Clin Rehabil ; 32(5): 594-606, 2018 May.
Article in English | MEDLINE | ID: mdl-29231044

ABSTRACT

OBJECTIVE: Summarizing the evidence on the effects of pre- and postoperative exercise and psychosocial rehabilitation interventions on patient-reported outcomes (PROs) and physical fitness in bladder cancer patients undergoing radical cystectomy. DATA SOURCES: The Cochrane Central Register of Controlled Trials, MEDLINE, Embase, Web of Science and the Physiotherapy Evidence Database were searched independently by two authors from inception until 10 November 2017. Cited references of the studies and citing references retrieved via Web of Science were also checked. REVIEW METHODS: Randomized controlled trials (RCTs) and non-randomized studies assessing effects of exercise and psychosocial interventions in bladder cancer patients undergoing radical cystectomy were eligible. Primary outcome measures were PROs and physical fitness. Risk of bias was assessed using the Cochrane Collaboration tool and the Newcastle-Ottawa Scale. RESULTS: Five RCTs (three exercise and two psychosocial studies) and one non-randomized psychosocial study comprising 317 bladder cancer patients were included. Timing of the intervention was preoperative ( n = 2), postoperative ( n = 2) or both pre- and postoperative ( n = 2). Positive effects of exercise were found for physical fitness ( n = 3), some health-related quality-of-life (HRQoL) domains ( n = 2), personal activities in daily living ( n = 1) and muscle strength ( n = 1). Psychosocial interventions showed positive effects on anxiety ( n = 1), fatigue ( n = 1), depression ( n = 1), HRQoL ( n = 1) and posttraumatic growth ( n = 1). Quality assessment showed most shortcomings with sample sizes and strong heterogeneity was observed between studies. CONCLUSION: The evidence relating to the effects of exercise in bladder cancer is very limited and is even less for psychosocial interventions.


Subject(s)
Cystectomy/psychology , Exercise Therapy , Urinary Bladder Neoplasms/psychology , Urinary Bladder Neoplasms/surgery , Anxiety/therapy , Depression/therapy , Humans , Physical Fitness , Quality of Life
19.
BMC Cancer ; 17(1): 308, 2017 05 02.
Article in English | MEDLINE | ID: mdl-28464906

ABSTRACT

BACKGROUND: Neo-adjuvant chemotherapy followed by radical cystectomy with extended pelvic lymph node dissection is considered to be the treatment of choice for patients with muscle invasive bladder cancer (MIBC). Despite this aggressive treatment the outcome is poor and ultimately, 30% of the patients with ≥pT3 tumors develop a pelvic recurrence. We hypothesize that postoperative adjuvant external beam radiotherapy (EBRT) might prevent local and lymph node recurrence and improve disease free- and overall survival as loco-regional recurrence is linked to the development of distant metastasis. METHODS: We plan to perform a multicentric prospective phase two study including 76 patients. Eligible patients are patients with MIBC, treated with radical cystectomy and presenting with ≥1 of the following characteristics: Pathological (p)T3 stage + presence of lymphovascular invasion on pathological examination pT4 stage <10 lymph nodes removed positive lymph nodes positive surgical margins Patients will have a 18F-FDG PET-CT to rule out the presence of distant metastasis prior to EBRT. A median dose of 50 Gy in 25 fractions is prescribed to the pelvic lymph node regions with inclusion of the operative bladder bed in case of a positive surgical margin. Patients with suspected lymph nodes on PET- CT can still be included in the trial, but a simultaneous integrated boost to 74Gy to the positive lymph nodes will be delivered. Blood and urine samples will be collected on day-1 and last day of EBRT for evaluation of biomarkers. The primary endpoint is evaluation of acute ≥Grade 3 intestinal or grade 4 urinary toxicity, in case of a neo-bladder reconstruction, within 12 weeks after EBRT. Secondary endpoints are: assessment of QOL, late RTOG toxicity, local control, disease free survival and overall survival. Biomarkers in urine and blood will be correlated with secondary survival endpoints. DISCUSSION: This is a prospective phase 2 trial re-assessing the feasibility of adjuvant radiotherapy in high-risk MIBC. TRIAL REGISTRATION: The Ethics committee of the Ghent University Hospital (EC2014/0630) approved this study on 31/07/2014. Trial registration on Clinicaltrials.gov ( NCT02397434 ) on November 19, 2014.


Subject(s)
Urinary Bladder Neoplasms/radiotherapy , Urinary Bladder Neoplasms/surgery , Adult , Cystectomy , Female , Humans , Male , Prospective Studies , Radiotherapy, Adjuvant
20.
JCO Oncol Pract ; 20(6): 816-826, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38457755

ABSTRACT

PURPOSE: Implementation of patient-reported outcomes (PROs) collection is an important priority in cancer care. We examined perceived barriers toward implementing PRO collection between centers with and without PRO infrastructure and administrators and nonadministrators. PATIENTS AND METHODS: We performed a multinational survey of oncology practitioners on their perceived barriers to PRO implementations. Multivariable regression models evaluated for differences in perceived barriers to PRO implementation between groups, adjusted for demographic and institutional variables. RESULTS: Among 358 oncology practitioners representing six geographic regions, 31% worked at centers that did not have PRO infrastructure and 26% self-reported as administrators. Administrators were more likely to perceive concerns with liability issues (aOR, 2.00 [95% CI, 1.12 to 3.57]; P = .02) while having nonsignificant trend toward less likely perceiving concerns with disruption of workflow (aOR, 0.58 [95% CI, 0.32 to 1.03]; P = .06) and nonadherence of PRO reporting (aOR, 0.53 [95% CI, 0.26 to 1.08]; P = .08) as barriers. Respondents from centers without PRO infrastructure were more likely to perceive that not having access to a local PRO expert (aOR, 6.59 [95% CI, 3.81 to 11.42]; P < .001), being unsure how to apply PROs in clinical decisions (aOR, 4.20 [95% CI, 2.32 to 7.63]; P < .001), and being unsure about selecting PRO measures (aOR, 3.36 [95% CI, 2.00 to 5.66]; P < .001) as barriers. Heat map analyses identified the largest differences between participants from centers with and without PRO infrastructure in agreed-upon barriers were (1) not having a local PRO expert, (2) being unsure about selecting PRO measures, and (3) not recognizing the role of PROs at the institutional level. CONCLUSION: Perceived barriers toward PRO implementation differ between administrators and nonadministrators and practitioners at centers with and without PRO infrastructure. PRO implementation teams should consider as part of a comprehensive strategy including frontline clinicians and administrators and members with PRO experience within teams.


Subject(s)
Patient Reported Outcome Measures , Humans , Surveys and Questionnaires , Male , Neoplasms/therapy , Female , Middle Aged
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