Patient- and caregiver-related factors affecting family caregiver burden of urologic cancer patients.

OBJECTIVE: This study aimed to investigate the level of family caregivers' (FC) burden and the extent to which patient- and caregiver-related factors influence the caregiving burden among FCs of urologic cancer (UC) patients. METHOD: A cross-sectional survey was conducted on caregivers of UC patients who sought cancer care. The modified caregiver strain index (MCSI) was used to assess FC burden. RESULTS: Just over half (54.3%) of FCs had moderate/high MCSI scores (score 9-26). By demographics, FCs who were unemployed (OR = 5.55, 95%CI 1.50-20.60) and perceived their current health condition as moderate/poor (OR = 6.05, 95%CI 1.95-18.78) reported higher odds of increased FC burden. Patient performance status played a pivotal role in exacerbating FC burden, whereby the odds of higher FC burden was 13 times higher in caregivers of UC patients having an Eastern Cooperative Oncology Group (ECOG) performance rating score of 3-4 (OR = 13.06, 95%CI 1.44-111.26) than those with a score of 0. Perceived lower levels of confidence in care provision were significantly associated with a higher level of strain (OR = 6.76, 985%CI 1.02-44.90). CONCLUSION: Care recipient performance status was a strong patient-related factor associated with higher FC burden regardless of duration of caregiving and other caregiver-related factors after adjusting for caregiver demographics.

Response shift effects in the assessment of urologic cancer patients' quality of life.

OBJECTIVE: Urologic cancer patients often assess their quality of life (QoL) as being relatively good. Response shift (change in internal standards) may be one reason for that effect. The aim of this study was to test such response shift effects. METHODS: A sample of 197 male urologic cancer patients was tested while hospitalised (t1) and three months later (t2). The participants had to assess their current health state and the health state of two anchoring vignettes. They also completed the EORTC QLQ-C30 and PHQ-4 questionnaires, including a retrospective thentest. The control sample was comprised of members of the general population. RESULTS: The patients rated their general health as being worse than people from the general population did (effect size: d = 0.73, p < 0.001). Moreover, the patients assessed the vignette presenting physical problems as being significantly healthier than people from the general population did (d = 0.42, p < 0.001). Under the retrospective thentest condition, the patients rated their QoL and their mental burden as being significantly worse than in the pre-test condition. Both methods showed response shift effects. CONCLUSION: Urologic cancer patients' assessments of their QoL should be handled with caution because of possible shifts in their internal standards of judgement.

[Social medical/public health assessment of the ability to work regarding urological and urooncological diseases]. / Sozialmedizinische Begutachtung der Arbeits- und Erwerbsfähigkeit bei urologischen/uroonkologischen Erkrankungen.

The primary objectives of modern urooncological treatment concepts are quality of life, reintegration and participation. Urological rehabilitation supports the overcoming of side effects of disease and treatment, which is necessary for the timely return to work life. Social medical assessment reflects the individual overall results of the entire treatment process concerning oncological prognosis, physical and mental capacity and resilience.

Basic methods for the assessment of health-related quality of life in uro-oncological patients.

BACKGROUND: The evaluation of patients' expectations and quality of life in uro-oncology is considered an important outcome of treatment efficacy and satisfaction. Aim of this systematic review was to evaluate the most frequently adopted tools in uro-oncology to assess Health Related Quality of Life (HRQoL). EVIDENCE ACQUISITION: A systematic literature search until October 2015 was performed on MEDLINE, Cochrane Library, PubMed combining the following terms: "quality of life," "health-related quality of life," "kidney cancer," "bladder cancer," "prostate cancer." Additional references were obtained from the reference list of full-text manuscripts. Data were synthesized using meta-analytic methods conformed to the PRISMA statement. EVIDENCE SYNTHESIS: HRQoL is a fundamental step in evaluating treatment outcome in patients with urological cancers. HRQoL is mostly measured through several questionnaires, which are generally categorized in generic questionnaires, exploring the patient's well-being en bloc; specific questionnaires, assessing each single domain of health status; and uro-oncological specific questionnaires, mainly characterized by a modular approach. Although different questionnaires have been proposed and validated, the standard method to be adopted in urology is far from the solution and further studies should investigate the strength and weakness of the different questionnaires. CONCLUSIONS: HRQoL questionnaires should become a standard method to evaluate medical/surgical outcomes in uro-oncology. Their implementation may significantly improve patients' satisfaction and help physicians in the decision-making process and possibly reduce health care costs.

Distress in cancer patients and their caregivers and association with the caregivers' perception of dyadic communication.

BACKGROUND: Discrepancies within cancer-affected couples can disrupt security within the dyadic relationship during cancer treatment. This study investigated the patients' and caregivers' distress and associations between the caregivers' perception of the patients' degree of open communication and their distress. PARTICIPANTS AND METHODS: In a cross-sectional survey, 189 pairs of cancer patients (31% gastrointestinal, 34% lung, 35% urological cancers) and their partners were assessed for distress (QSC-R10), depression and anxiety (PHQ-2/GAD-2). The caregivers also reported their perception of the patients' degree of disclosure regarding cancer-relevant topics (CCAT-F Disclosure subscale), caregiver strain (CSI), and unmet needs (SCNS-P&C). Prevalences of clinically significant distress were calculated. Associations were calculated between the caregivers' and the patients' ratings and between the caregivers' distress and their perception of the patients' degree of disclosure. RESULTS: 33% of the caregivers and 25% of the patients exhibited significant anxiety, with a tendency towards a higher frequency in the caregivers (p = 0.10). The prevalence of depression was lower but equally high in caregivers and patients. The caregivers' perceived non-disclosure by the patients was primarily associated with their anxiety (r = 0.31), disease-specific distress (r = 0.32), and psychological/emotional needs (r = 0.35). CONCLUSION: The identification of caregivers reporting problems in communicating with patients should be pursued in clinical practice as this might indicate that caregivers are particularly burdened.

The PACT study protocol: a time series study investigating the impact, acceptability and cost of an integrated model for psychosocial screening, care and treatment of patients with urological and head and neck cancers.

INTRODUCTION: While there is good evidence of the effectiveness of a variety of interventions and services to prevent and/or relieve distress experienced by people affected by cancer, much of this psychosocial morbidity is undetected and untreated, with consequent exacerbated suffering, decreased satisfaction with care, impaired adherence to treatment regimens and poorer morbidity and mortality outcomes. The objective of this study is to develop, implement and assess the impact, acceptability and cost of an integrated, patient-centred Psychosocial Assessment, Care and Treatment (PACT) model of care for patients with urological and head and neck cancers. METHODS AND ANALYSIS: A time series research design will be used to test the PACT model of care, newly introduced in an Australian tertiary hospital. The primary outcome is system-level impact, assessed through audit of patients' medical records and Medicare claims for follow-up care. The secondary outcomes are impact of the model on patients' experience and healthcare professionals' (HCPs) knowledge and confidence, assessed via patient and HCP surveys at baseline and at follow-up. Acceptability of the intervention will be assessed through HCP interviews at follow-up, and cost will be assessed from Medicare and Pharmaceutical Benefits Scheme claims information and information logged pertaining to intervention activities (eg, time spent by the newly appointed psycho-oncology staff in direct patient contact, providing training sessions, engaging in case review) and their associated costs (eg, salaries, training materials and videoconferencing). ETHICS AND DISSEMINATION: Ethics approval was obtained from the Human Research Ethics Committees of Hunter New England Local Health District and the University of NSW. RESULTS: The results will be widely disseminated to the funding body and through peer-reviewed publications, HCP and consumer publications, oncology conferences and meetings. TRIAL REGISTRATION: The study is registered with the Australian New Zealand Clinical Trials Registry with registration number ACTRN12613000916741.

Information needs and Internet use in urological and breast cancer patients.

AIMS: This study aims to describe the information needs of urological and breast cancer patients and factors related to use of the Internet as a source of health information. METHODOLOGY: A cross-sectional descriptive study was carried out, using individual questionnaire-based interviews held during the oncology appointments of 169 patients with urological cancer and 100 with breast cancer at the Virgen de las Nieves University Hospital in Granada, Spain. The variables studied were use of the Internet as a source of health information, health status, patient's role in the decision-making process, information sources, satisfaction with the health-care system, type of information received, and Internet use. A multivariate logistic regression analysis was carried out. RESULTS: Breast cancer patients are more concerned with long-term results and the effects on their family and personal life. They are also interested in the experiences of other patients and support groups or staff who could help them to cope with their illness. The information needs of patients with urological cancer are linked to short-term alternative treatments, their sex life, keeping healthy, and exercise. More clinical aspects, such as tests and experiments linked to their treatment, are not a frequent information need. The factors linked to use of the Internet as a source of health information are younger age, high level of education, the patient's active role in the decision-making process, and undergoing more aggressive treatment. There is no link between using the Internet as a source of health information and level of satisfaction with the health-care system, or with Internet use in general. CONCLUSION: Patients need additional information about their illness on top of that given to them by health-care staff, and they often use the Internet to find it. The greatest information need is related to the effects of their illness on their day-to-day life. Health-care staff should provide patients with advice about reliable websites and how to search the Internet.

Communicating good care: a qualitative study of what people with urological cancer value in interactions with health care providers.

PURPOSE: Communication with health care providers is important to help meet cancer patients' information and support needs. It can significantly affect the extent to which patients feel cared for, respected and involved, and it can influence a range of cancer care processes and outcomes. This paper presents findings from a study which explored urological cancer patients' experiences of care, focussing on insights into what they appeared to value in their interactions with health care providers and why. METHOD: In-depth interviews were undertaken with 20 men and 6 women with different types of urological cancer at a range of times since diagnosis. Interviews were audio-recorded, transcribed and thematically analysed using an established interpretive approach. RESULTS: Patients valued being treated as someone who mattered and was worthy of care; being recognised and responded to as an individual; and experiencing support for autonomy/agency. Reasons for their valuations related to the implications of communicative interactions for the ways patients thought health professionals related to them 'as persons'. Our findings highlight the value of relational aspects of communication for: indicating to patients what clinicians think of their worth; facilitating individualised care; and enabling patients to contribute to their own care. CONCLUSIONS: Efforts to improve health care provider-patient communication should attend not only to the transfer of information about the condition and its management but to the range of features of interactions that can signal to people how health care providers relate to them as persons.

Response shift in the assessment of anxiety, depression and perceived health in urologic cancer patients: an individual perspective.

The assessment of quality of life in cancer patients is hampered because patients may change their frames of reference during the course of the disease. The aim of this study was to test individual differences in these response shift effects. Urologic cancer patients (n= 275) were examined during the stay in the hospital (T1), 2 weeks later (T2) and 3 months later (T3). Furthermore, at T3 they were asked to retrospectively assess their situation at T1 (then-test). The difference between this retrospective assessment and the original assessment at T1 was used to determine the response shift effect (recalibration). Anxiety (Generalized Anxiety Disorder Questionnaire-2), depression (Patient Health Questionnaire-2) and health dissatisfaction (Questionnaire on Life Satisfaction) were obtained at all points in time. The effect sizes of the mean response shift effects (recalibration) ranged between 0.26 and 0.48. Nevertheless, a large proportion of the sample showed no response shift (22-38%) or even negative response shift effects (20-30%). There were significant correlations among the response shift measures of the domains (anxiety, depression and health dissatisfaction) with coefficients between 0.29 and 0.51. The results indicate that response shift should not only be assessed on the mean score level, since it is also a dimension of individual difference.

Need for and access to bereavement support after loss of a husband to urologic cancers: a nationwide follow-up of Swedish widows.

OBJECTIVE: Widowhood imposes difficult psychological, social and practical challenges. We investigated the prevalence and predictors of access to bereavement interventions during the first 6 months after the loss of a husband/male partner to prostate or urinary bladder cancer. MATERIAL AND METHODS: All women (n = 506) aged < 80 years living in Sweden who lost their husband/partner owing to cancer of the prostate in 1996 or of the urinary bladder in 1995 or 1996 were asked to answer an anonymous postal questionnaire 2-4 years after their loss. RESULTS: Thirty percent of the widows stated that they would not have needed psychological support by caregivers during the first 6 months of bereavement. Two-thirds of the others (162/242) (those who did not state that they had no need of support) did not have any access to psychological support, 10% (25/242) had little access, 11% (27/242) had moderate access and 12% (28/242) had a large amount of access to psychological support. Similar figures were observed for other bereavement interventions, such as information, economic counselling and support groups. Emotional relations during the last months prior to bereavement, intensity of faith, education, prior mental health problems and a diagnosis of prostate cancer were all positively correlated with access to psychological support by caregivers, whereas previously identified risk factors for excess morbidity in widowhood were not. CONCLUSIONS: A large majority of Swedish widows who lost their husband to urologic cancers in 1995 or 1996 indicated a need for psychological support, information and economic counselling. This need was not met by caregivers and help was not aimed at important groups at risk of morbidity.