How to Intervene in the Health Management of the Oncological Patient and of Their Caregiver? A Narrative Review in the Psycho-Oncology Field.
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SUBMITTER: Turchi GP
PROVIDER: S-EPMC8301046 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectiveClinical experience reveals a gap between recommended psychosocial care and actual support for psycho-oncology. Physicians are essential for managing psychosocial distress and for the successful implementation of psycho-oncology. The aim was to explore physician's attitudes towards psycho-oncology, their self-perceived barriers towards referral to psycho-oncology, and their personal psychosocial competencies in a maximum-care hospital.MethodSemistructured interviews informed the development of a questionnaire administered to a monocentric sample of 120 physicians at the University Hospital Frankfurt. The data were exploratively analysed.ResultsOne hundred two physicians completed the questionnaire. Physicians provided high ratings concerning the value of psycho-oncology, beliefs about its efficacy, and their personal commitment to psycho-oncology. Physicians noticed especially barriers that originated from patients themselves. They estimated their own psychosocial education and knowledge as moderate but rated their psychosocial skills and abilities as higher. Frequency of integration of psychosocial care was most strongly influenced by physicians' psychosocial competencies and their personal commitment to psycho-oncology. Integration of psycho-oncological issues occurs in 43% of patients.ConclusionPhysicians are an important indicator of successful implementation. The discrepancy between the positive evaluation and actual support for psycho-oncology may be explained by several factors, eg, the lack of support from clinic leaders. Patient-related barriers, most often identified by physicians, seem to be an indication of actual lack of psychosocial competencies. Physicians' psychosocial competencies positively affect the implementation of psycho-oncology. Sound knowledge of psychosocial topics may result in increased integration of psychosocial aspects into treatment. Therefore, medical training should focus more on psychosocial issues.
| S-EPMC7497064 | biostudies-literature
Project description:BACKGROUND/AIM:Psycho-oncological distress is a relevant clinical problem. The aim of this study was to administer a standardized psycho-oncological distress screening for early identification and indication-based treatment of highly distressed orthopedic cancer patients as well as the evaluation of distress patterns. PATIENTS AND METHODS:In total, 35 patients with cancer were psycho-oncologically screened using a cancer-specific expert rating scale (Basic Documentation for Psycho-Oncology Short Form) at three different time points (day of admission, day before discharge, 3 months postoperatively). Psycho-oncological support was offered to all patients whose distress exceeded a defined cut-off value. RESULTS:Levels of distress in approximately 51% of patients exceeded the cut-off value at the time of admission and these patients received psycho-oncological support. The high distress levels decreased significantly over time. Patients whose distress did not exceed the cut-off value at the first assessment showed low distress levels at all time points. CONCLUSION:A relevant number of orthopedic tumor patients suffer from psychosocial distress. Standardized screening might help to identify and adequately treat those patients.
| S-EPMC6199587 | biostudies-literature
Project description:BackgroundCancer patients often suffer from psychological distress. Psycho-oncological services (POS) have been established in some health care systems in order to address such issues. This study aims to identify patient and center characteristics that elucidate the use of POS by patients in prostate cancer centers (PCCs).MethodsCenter-reported certification and patient survey data from 3094 patients in 44 certified PCCs in Germany were gathered in the observational study (Prostate Cancer Outcomes). A multilevel analysis was conducted.ResultsModel 1 showed that utilization of POS in PCCs is associated with patients' age (OR = 0.98; 95%-CI = 0.96-0.99; P < .001), number of comorbidities (1-2 vs 0, OR = 1.27; 95%-CI = 1.00-1.60; P=.048), disease staging (localized high-risk vs localized intermediate risk, OR = 1.41; 95%-CI = 1.14-1.74; P < .001), receiving androgen deprivation therapy before study inclusion (OR = 0.19; 95%-CI = 0.10-0.34; P < .001), and hospital teaching status (university vs academic, OR = 0.09; 95%-CI = 0.02-0.55; P = .009). Model 2 additionally includes information on treatment after study inclusion and shows that after inclusion, patients who receive primary radiotherapy (OR = 0.05; 95%-CI = 0.03-0.10; P < .001) or undergo active surveillance/watchful waiting (OR = 0.06; 95%-CI = 0.02-0.15; P < .001) are less likely to utilize POS than patients who undergo radical prostatectomy. Disease staging (localized high-risk vs localized intermediate risk, OR = 1.31; 95%-CI = 1.05-1.62; P = .02) and teaching status (university vs academic, OR = 0.08; 95%-CI = 0.01-0.65; P = .02) are also significant predictors for POS use. The second model did not identify any other significant patient characteristics.ConclusionsFuture research should explore the role of institutional teaching status and whether associations with therapy after study inclusion are due to treatment effects - for example, less need following radiotherapy - or because access to POS is more difficult for those receiving radiotherapy.
| S-EPMC7286449 | biostudies-literature
Project description:PurposeThe aim of this systematic literature review was to describe patient-reported outcomes, mental health and caregiver burden in patients with neovascular age-related macular degeneration (nAMD) treated with anti-vascular endothelial growth factor (VEGF) agents in routine clinical practice.MethodsElectronic searches were conducted in Embase and MEDLINE according to pre-defined criteria.ResultsOf 856 records identified, 63 met inclusion criteria. Depression or depressive symptoms were reported in up to 42% of patients with nAMD. Of 25/63 (40%) studies evaluating quality of life (QoL) and using various tools, eight studies reported composite National Eye Institute Visual Functioning Questionnaire scores following anti-VEGF treatment. Of these, seven reported a statistically significant improvement at the earliest time point measured (Month 3-12) and approximately 50% reported sustained QoL benefits at 12 months. In studies comparing the attributed or different regimens, the most important factor from the patient's perspective was the likelihood that a particular regimen would maintain vision. There was a preference towards treat and extend, which was associated with a perceived reduction in patient and caregiver burden, compared to fixed dosing.ConclusionsA coordinated holistic approach to patient care is key to optimizing patient well-being as well as visual outcomes. Further research regarding the patient-reported impact of nAMD management outside the trial setting (particularly international longitudinal studies) is warranted. Standardization of QoL studies would assist in establishing whether sustained QoL improvement, rather than prevention of QoL decline, should be a realistic expectation of treatment of nAMD in the longer term.
| S-EPMC10084380 | biostudies-literature
Project description:ObjectivesTo explore patient and caregiver experiences, preferences, and attitudes toward the provision and receipt of caregiving assistance with medical tasks.DesignQualitative study consisting of in-depth interviews with 20 patient-caregiver dyads.SettingCommunity and academic-affiliated primary care clinics.ParticipantsIndividuals aged 65 or older with 2 or more health conditions and their family caregivers (n=20 patient-caregiver dyads).MeasurementsOpen-ended questions were asked about the tasks that the patient and caregiver performed to manage the patient's health conditions; questions were designed to elicit participant reactions and attitudes toward the help they provided or received. Transcripts were analyzed using the constant comparative method.ResultsParticipant preferences and attitudes toward the receipt and provision of disease management tasks were highly personal. Participant responses clustered into 2 caregiving typologies: supportive caregiving relationships and conflicted caregiving relationships. Supportive relationships were characterized by patient-caregiver agreement about caregiver level of involvement, agreement about one another's competency to perform disease-related tasks, mutual understanding, collaborative decision-making and disease management, and use of family and formal caregiving. Conflicted relationships were characterized by disagreement about caregiver level of involvement, disagreement about one another's competency to perform disease management tasks, underappreciation of one another's experiences, disagreement over decision-making and disease management, and use of formal caregiving.ConclusionsThe views that patient-caregiver dyads expressed in this study illustrate the varied preferences and attitudes toward caregiving assistance with multiple health conditions. These findings support a dyadic approach to evaluating and addressing patient and caregiver needs and attitudes toward provision of assistance.
| S-EPMC6710828 | biostudies-literature
Project description:PurposeAdequate, needs-oriented psycho-oncological care contributes to reducing psychological distress in cancer patients and their relatives and improving quality of life. Regarding the precise determination of objective and subjective needs, there are often discrepancies in practice between the screening instrument completed by patients, the clinical impression of the treatment team, and the judgment of the psycho-oncology team.MethodsThe present multicenter study "OptiScreen", involving three German Comprehensive Cancer Centers (Hannover, Leipzig, Dresden), aims to professionalize psychosocial screening to enable targeted and needs-based allocation to psycho-oncological support. Optimization and professionalization of the screening process will be achieved by training of oncological nursing staff to improve the targeted identification of distressed patients and provide them with needs-based psycho-oncological care. The non-randomized pre-post study will include inpatients with gastrointestinal cancers from the visceral oncology centers at the three sites. First, the comparison group (CG) will be assessed of N = 300. After completion of nursing training, the intervention group (IG) with N = 600 patients will be evaluated by validated questionnaires.ResultsThe aim is to reduce barriers on both the patient and treatment side by promoting interdisciplinary dialogue and linking the screening with a personal consultation offer provided by the nurses, which should help to increase utilization and reduce patients' fears, shame and information deficits.ConclusionIt is not sufficient to establish a well-validated screening procedure, it also has to be feasible and useful in clinical practice. "OptiScreen" aims to improve the psycho-oncological care situation. In parallel, the study enables the professionalization of psycho-oncological care with the involvement of important professional groups (e.g. nursing) and thus aims to develop a "best practice model".
| S-EPMC9514185 | biostudies-literature
Project description:The primary goal of patient and public involvement (PPI) in healthcare is to improve individual and population health outcomes. This study reports on the successful training of patients to be involved in patient education as peers and clinical research at Grenoble Patients' School (GPS). GPS was founded by patients as an independent association to train patients to the above objectives tasks. The training team was multi-professional and included expert PPI who were part of the professional team. Medical faculty members and 45 patients, 59% females, 52 ± 6.4 years old, trained between 2016 and 2017, showed high satisfaction at the end of the training courses. Almost all the trained patients were involved as peer educators and 4 were involved in clinical research projects at different stages under the guidance of medical teams. Patient involvement at GPS provided strong benefits to trainees and had some impact on education and obtaining research grants. The outcome of this patient training program resulted in the creation of a Patients' Department within the Medical and Pharmacy Schools at the Université Grenoble Alpes in 2020, https://medecine.univ-grenoble-alpes.fr/departements/departement-universitaire-des-patients/.
| S-EPMC8793428 | biostudies-literature
Project description:IntroductionDevastating cancer-related events are not uncommon, and these events have weakened communication performance and induced stress among health care providers (HCPs), particularly physicians. This study aimed to investigate the perspective of HCPs emotionally affected by poor clinical outcomes due to the failure of cancer therapy.MethodsA cross-sectional, online survey was conducted over 3 months among HCPs practicing in the field of oncology in Saudi Arabia, comprising physicians, pharmacists, and nurses. Data were analyzed using Statistical Package for Social Sciences version 26.0. A P-value <.05 was considered statistically significant.ResultsThis study demonstrated a positive correlation between HCPs' length of experience and emotional impact of treatment failure, albeit this was not statistically significant (P = .071). Analysis of their perspective toward failure of cancer therapies revealed a significant impact of occupation and sex (P = .014 and P = .047, respectively). Moreover, occupation played a significant role in shaping the viewpoint of HCPs toward the need for conducing further research to test the appropriateness of treatment protocols on local patients (P = .022). Despite the emotional responses of HCPs to suboptimal clinical outcomes, factors such as work burnout, lack of concentration and patience, work or personal problems, and under appreciation were frequently identified as triggers of such outcomes.ConclusionOur results revealed that poor clinical outcomes observed among cancer patients are emotional triggers for HCPs practicing in the oncology field. The emotional response is often perceived negatively, and can potentially lead to a decline in the quality of care provided to these patients.
| S-EPMC10134170 | biostudies-literature
Project description:BackgroundTuberous sclerosis complex (TSC) is a rare multisystem disorder often associated with treatment-resistant epilepsy. Cost-effectiveness analysis for new antiseizure medications typically requires health state utilities (HSUs) that reflect the burden of a given condition.ObjectiveThis study aimed to estimate HSUs, with a focus on valuing the impact of seizure type and seizure frequency on health-related quality of life (HRQL) for patients with TSC and their caregivers.MethodsA targeted literature review and qualitative research with healthcare professionals and caregivers informed the development of health state vignettes describing the experience of living with TSC or caring for a child with TSC. Vignettes were evaluated in interviews with the UK general population using the time trade-off (TTO) method.ResultsSixteen vignettes were developed describing patient HRQL (n = 8) and caregiver HRQL (n = 8). Two hundred interviews were conducted via online video calls due to COVID-19 pandemic restrictions. Two hundred participants evaluated the patient (n = 100) and caregiver (n = 100) health state vignettes. Estimated utility scores varied consistently according to seizure type and seizure frequency. Patient TTO utility scores ranged between -0.234 (highest seizure frequency and multiple seizure types) and 0.725 (seizure-free state). Caregiver TTO utility scores ranged from 0.221 to 0.905.ConclusionsFindings highlight the substantial burden of living with TSC and caring for a child with TSC. Patient and caregiver burden was greater for generalised versus focal seizures. The burden was greatest for a combination of both seizure types and worsened with increasing seizure frequency.
| S-EPMC8441242 | biostudies-literature
Project description:Personal health records (PHRs) may address the needs of children with attention deficit hyperactivity disorder. Among parents, we assessed acceptance, barriers, and intentions regarding use of PHR for their children with attention deficit hyperactivity disorder.Survey of parents from 3 practices in Rochester, NY. Stepwise logistic regression analysis explored factors predicting respondents' intentions for future use of PHR, accounting for care coordination needs, caregiver education, socioeconomic status, and satisfaction with providers.Of 184 respondents, 23% had used the PHR for their child, 82% intended future use. No difference was observed between users and nonusers regarding gender, age, race, or education. Users were more likely than nonusers to reside in the suburbs (P = .03). Caregivers were more likely to plan future use of the PHR if they felt engaged as partners in their child's care (adjusted odds ratio = 2.3, 95% confidence interval = 1.2, 4.5).Parents are enthusiastic about PHRs. Future work should focus on engaging them as members of the health care team.
| S-EPMC4474750 | biostudies-literature