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Frailty in older adults with cancer is complex, evolving, and often overlooked in care. This qualitative study explored how frailty is experienced and reported using patient-reported outcome measures (PROMs) and visualized over time through journey maps. Eleven participants (65+) completed the Comprehensive Frailty Assessment Instrument (CFAI) and semi-structured interviews. Individual journey maps combined CFAI scores with personal narratives to track changes in physical, mental, and social aspects of frailty over time. While PROMs showed variability in frailty severity, narratives revealed discrepancies, such as low frailty scores despite significant treatment-related challenges. Fatigue, emotional distress, and isolation were common during treatment, with lasting impacts post-treatment. Findings suggest PROMs alone may not fully capture lived experience. Integrating narrative dialogue provides a more person-centred approach to frailty assessment and care planning.
Investigations of computerised cognitive training (CCT) show heterogeneous results in slowing age-related cognitive decline.
Aims
To comprehensively evaluate the effectiveness of serious games-based CCT, integrating control conditions, neurophysiological and blood-based biomarkers, and subjective measures.
Method
In this bi-centric randomised controlled trial with parallel groups, 160 participants (mean age 71.3 years) with cognitive impairment ranging from subjective decline to mild cognitive impairment, were pseudo-randomised to three arms: an intervention group receiving CCT immediately, an active control (watching documentaries) and a waitlist condition, which both started the CCT intervention after the control period. Both active arms entailed a 3-month intervention period comprising a total of 60 at-home sessions (five per week) and weekly on-site group meetings. In the intervention group, this was followed by additional 6 months of CCT, with monthly booster sessions to assess long-term training effects. Behavioural and subjective changes were assessed in 3-month intervals. Biological effects were measured by amyloid blood markers and magnetic resonance imaging obtained before and after training.
Results
Adherence to the training protocol was consistently high across groups and time points (4.87 sessions per week). Domain-specific cognitive scores showed no significant interaction between groups and time points. Significant cognitive and subjective improvements were observed after long-term training. Voxel-based morphometry revealed no significant changes in grey matter volume following CCT, nor did amyloid levels moderate its effectiveness.
Conclusions
Our study demonstrates no benefits of 3 months of CCT on cognitive or biological outcomes. However, positive effects were observed subjectively and after long-term CCT, warranting the inclusion of CCT in multicomponent interventions.
Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are increasingly acknowledged as critical tools for enhancing patient-centred, value-based care. However, research is lacking on the impact of using standardized patient-reported indicators in acute psychiatric care. The aim of this study was to explore whether subjective well-being indicators (generic PROMs) are relevant for evaluating the quality of hospital care, distinct from measures of symptom improvement (disease-specific PROMs) and from PREMs.
Methods
Two hundred and forty-eight inpatients admitted to a psychiatric university hospital were included in the study between January and June 2021. Subjective well-being was assessed using standardized generic PROMs on well-being, symptom improvement was assessed using standardized disease-specific PROMs, and experience of care using PREMs. PROMs were completed at admission and discharge, PREMs were completed at discharge. Clinicians rated their experience of providing treatment using adapted PREMs items.
Results
Change in subjective well-being (PROMs) at discharge was significantly (p < 0.001), but moderately (r2 = 28.5%), correlated to improvement in symptom outcomes, and weakly correlated to experience of care (PREMs) (r2 = 11.0%), the latter being weakly explained by symptom changes (r2 = 6.9%). Patients and clinicians assessed the experience of care differently.
Conclusions
This study supports the case for routinely measuring patients’ subjective well-being to better capture the unmet needs of patients undergoing psychiatric hospital treatment, and the use of standardized patient-reported measures as key indicators of high quality of care across mental health services.
Patient-reported outcome measures are commonly used to evaluate the effectiveness of treatments. CHD remains the most common congenital malformation. There has been a gradual shift in evaluating the outcome of surgery for CHD from mortality to morbidity and now to self-reported outcomes.
Aims:
We aimed to review studies assessing patient-reported outcome measures as a useful marker of outcome for patients, both children and adults, who underwent surgery for CHD.
Methods:
A systematic database search was conducted of original articles that explored the application of patient-reported outcome measures in the CHD surgical setting in PubMed and SCOPUS from inception to February 2022.
Results:
Our search yielded 1511 papers, of which six studies were included in this review after screening abstract and full-text, with a total sample size of 5734 patients. The main areas of discussion were the utility of patient-reported outcome measures, determinants of patient-reported outcome measures, and the need for a congenital cardiac surgery-specific patient-reported outcome measure for paediatric patients and their parents/guardians and adult patients.
Conclusion:
This systematic review reports the use of patient-reported outcome measures to be a useful indicator to gain insight into the patients’ perspective to provide holistic and patient-centred management. However, further studies are required to assess the utility of patient-reported outcome measures in a congenital cardiac surgical setting.
BACKGROUND Against the treatment gap and the long delays in seeking treatment for mental health problems, primary care psychology (PCP) was added to reimbursed outpatient mental health services in the Belgian healthcare system. PURPOSE Within the Evaluation of Primary Care Psychology study (EPCAP), which provides evaluation of the measure of reimbursement of PCP, the objectives were: (1) To describe the patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) of patients treated with PCP and (2) formulate guidelines to integrate patient-related findings and experiences within community mental health services. METHOD 428 patients participated in an online survey at the start of their PCP treatment in Belgium and after 3 and 6 months. Besides sociodemographic characteristics, DSM-5 mental disorders, suicidality, and service use, they were questioned about their findings (PROMs) and experiences (PREMs). RESULTS Almost 90% met the criteria of a lifetime as a 12-month DSM-5 mental disorder or STB at the start of PCP treatment. Both subjective well-being and the proportion of patients who had positive experiences regarding their PCP treatment increased with 46% resp. 23.2% after 3 months and remained stable after 6 months. CONCLUSION Although PCP in Belgium serves a clinical patient population with high proportions of lifetime and 12-month mental disorders and suicidality, their subjective well-being increased after 3 months and remained stable after 6 months. Despite differences between groups of patients, PCP seems to have a positive effect on subjective well-being of these patient in short term. Integration of PROMs and PREMs into PCP were recommended.
In recent years, there has been a growing interest to enhance patients’ symptom management during routine cancer care using patient-reported outcome measures. The goal of this study is to analyse patients’ responses to the Edmonton Symptom Assessment System (ESAS) to determine whether patient-reported outcomes could help characterise those patients with the highest supportive care needs and symptom burden in order to help provide targeted support for patients.
Methods:
In this study, we analysed ESAS questionnaire responses completed by patients as part of their routine care and considered part of patients’ standard of care. Statistical analyses were performed using the IBM SPSS Statistics version 26.0. Descriptive statistics are used to summarise patient demographics, disease characteristics and patient-reported symptom severity and prevalence.
Results:
The overall mean age is 65.2 ± 12.8 years comprising 43.8% male and 56.2% female patients. The five common primary disease sites are breast (26.2%), haematology (21.1%), gastrointestinal (15.3%), genitourinary (12.7%) and lung (12.0%) cancers. The mean severity for each symptom is all mild (score: 1–3). The three most common reported symptoms causing distress are tiredness, poor overall wellbeing and anxiety, and the least reported symptom is nausea.
Conclusions:
Systematic self-reporting of patients’ symptoms is important to improve symptom management, timely facilitation of appropriate intervention, patient experience, and patient and family satisfaction. The awareness of disease site, gender and age-related symptom variations should help in the design and provision of appropriate symptom-directed, tumour-specific and patient-focused interventions to meet patients’ immediate needs.
The study aimed to assess the reliability and validity of the IPOS-Pol for patient self-reporting.
Method
Patients (>18 years of age) with advanced cancer admitted to three palliative care centers (inpatient units and home-based) were recruited to a multicenter, cross-sectional, observational, prospective study. Participants provided responses to the IPOS-Pol Patient version and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire – Core 15 – Palliative Care (EORTC QLQ-C15-PAL) Polish version at baseline (T1) and four to seven days later (T2). We assessed test–retest reliability, internal consistency, and construct validity of the tool.
Results
One hundred and eighty patients were included. Test–retest reliability demonstrated no statistically significant differences in the average outcomes of the IPOS-Pol between T1 and T2 (27.2 ± 9.2 vs. 26.5 ± 8.7; p > 0.05). The intra-class correlation coefficient between T1 and T2 was r = 0.83 (p < 0.0001), the intra-class correlation coefficient for test–retest reliability of the IPOS-Pol items ranged from 0.63 to 0.84 (p < 0.0001), and the Cronbach's α coefficient for internal consistency was 0.773. The correlation coefficient between the IPOS-Pol and EORTC QLQ-C15-PAL total score was 0.79 (p < 0.001).
Significance of results
The patient version of the Polish adaptation of IPOS is a valid and reliable outcome measure for assessing symptoms and concerns of individuals receiving palliative care, as well as the quality of care provided.
Many older adults experience memory changes that can have a meaningful impact on their everyday lives, such as restrictions to lifestyle activities and negative emotions. Older adults also report a variety of positive coping responses that help them manage these changes. The purpose of this study was to determine how objective cognitive performance and self-reported memory are related to the everyday impact of memory change.
Methods:
We examined these associations in a sample of 94 older adults (age 60–89, 52% female) along a cognitive ability continuum from normal cognition to mild cognitive impairment.
Results:
Correlational analyses revealed that greater restrictions to lifestyle activities (|rs| = .36–.66), more negative emotion associated with memory change (|rs| = .27–.76), and an overall greater burden of memory change on everyday living (|rs| = .28–.61) were associated with poorer objective memory performance and lower self-reported memory ability and satisfaction. Performance on objective measures of executive attention was unrelated to the impact of memory change. Self-reported strategy use was positively related to positive coping with memory change (|r| = .26), but self-reported strategy use was associated with more negative emotions regarding memory change (|r| = .23).
Conclusions:
Given the prevalence of memory complaints among older adults, it is important to understand the experience of memory change and its impact on everyday functioning in order to develop services that target the specific needs of this population.
This study aimed to examine: (1) patient–proxy agreement on executive functioning (EF) of patients with primary brain tumors, (2) the relationships between patient- and proxy-report with performance-based measures of EF, and (3) the potential influence of performance-based measures on the level of agreement.
Methods:
Meningioma and low-grade glioma patients and their informal caregivers completed the Behavior Rating Inventory of Executive Function (BRIEF-A) 3 months after surgery. The two index scores of the BRIEF-A, Behavioral Regulation and Metacognition, were evaluated. Mean scores of patients and proxies were compared with normative values and with each other. Patient–proxy agreement was evaluated with Lin’s concordance correlation coefficients (CCCs) and Bland–Altman plots. Pearson correlation coefficients between reported EF and performance-based measures of EF were calculated. Multiple regression analysis was used to evaluate the potential influence of test performance on differences in dyadic reports.
Results:
A total of 47 dyads were included. Patients reported significantly more problems on the Metacognition Index compared to norms, and also in comparison with their proxies. Effect sizes indicated small differences. Moderate to substantial agreement was observed between patients and proxies, with CCCs of 0.57 and 0.61 for Metacognition and Behavioral Regulation, respectively. Correlations between reported EF and test performance ranged between −0.37 and 0.10. Dyadic agreement was not significantly influenced by test performance.
Conclusions:
Patient–proxy agreement was found to be moderate. No clear associations were found between reported EF and test performance. Future studies should further explore the existing and new methods to assess everyday EF in brain tumor patients.
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