ORCID Profile
0000-0002-5013-8361
Current Organisations
Universiteit Gent
,
University of Sydney
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Publisher: Springer Science and Business Media LLC
Date: 19-01-2023
DOI: 10.1007/S11060-023-04239-0
Abstract: High-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience high levels of distress. We aimed to deliver a nurse-led intervention (Care-IS) to carers to improve their preparedness to care and reduce distress. We conducted a randomised controlled trial (ACTRN:12612001147875). Carers of HGG patients were recruited during patients’ combined chemoradiation treatment. The complex intervention comprised four components: (1) initial telephone assessment of carer unmet needs (2) tailored hard-copy resource folder (3) home visit and, (4) monthly telephone support for up to 12 months. Primary outcomes included preparedness for caregiving and distress at 2, 4, 6 and 12 months. Intervention effects were estimated using linear mixed models which included a time by group interaction. Secondary outcomes included anxiety, depression, quality of life, carer competence and strain. We randomised 188 carers (n = 98 intervention, n = 90 control). The intervention group reported significantly higher preparedness for caregiving at 4 months (model β = 2.85, 95% CI 0.76–4.93) and all follow-up timepoints including 12 months (model β = 4.35, 95% CI 2.08–6.62), compared to the control group. However, there was no difference between groups in carer distress or any secondary outcomes. This intervention was effective in improving carer preparedness. However, carer distress was not reduced, potentially due to the debilitating rogressive nature of HGG and ongoing caring responsibilities. Future research must explore whether carer interventions can improve carer adjustment, self-efficacy and coping and how we support carers after bereavement. Additionally, research is needed to determine how to implement carer support into practice.
Publisher: Springer Science and Business Media LLC
Date: 16-03-2020
Publisher: Springer Science and Business Media LLC
Date: 12-05-2022
DOI: 10.1007/S11136-022-03127-W
Abstract: Failure to incorporate key patient-reported outcome (PRO) content in trial protocols affects the quality and interpretability of the collected data, contributing to research waste. Our group developed evidence-based training specifically addressing PRO components of protocols. We aimed to assess whether 2-day educational workshops improved the PRO completeness of protocols against consensus-based minimum standards provided in the SPIRIT-PRO Extension in 2018. Annual workshops were conducted 2011–2017. Participants were investigators/trialists from cancer clinical trials groups. Although developed before 2018, workshops covered 15/16 SPIRIT-PRO items. Participant feedback immediately post-workshop and, retrospectively, in November 2017 was summarised descriptively. Protocols were evaluated against SPIRIT-PRO by two independent raters for workshop protocols (developed post-workshop by participants) and control protocols (contemporaneous non-workshop protocols). SPIRIT-PRO items were assessed for completeness (0 = not addressed, 10 = fully addressed). Mann–Whitney U tests assessed whether workshop protocols scored higher than controls by item and overall. Participants ( n = 107) evaluated the workshop positively. In 2017, 16/41 survey responders (39%) reported never applying in practice barriers included role restrictions (14/41, 34%) and lack of time (5/41, 12%). SPIRIT-PRO overall scores did not differ between workshop ( n = 13, median = 3.81/10, interquartile range = 3.24) and control protocols ( n = 9, 3.51/10 (2.14)), ( p = 0.35). Workshop protocols scored higher than controls on two items: ‘specify PRO concepts/domains’ ( p = 0.05) ‘methods for handling missing data’ ( p = 0.044). Although participants were highly satisfied with these workshops, the completeness of PRO protocol content generally did not improve. Additional knowledge translation efforts are needed to assist protocol writers address SPIRIT-PRO guidance and avoid research waste that may eventuate from sub-optimal PRO protocol content.
Publisher: Elsevier BV
Date: 08-2022
DOI: 10.1016/J.YGYNO.2022.05.024
Abstract: The Measure of Ovarian Symptoms and Treatment (MOST) concerns is a validated patient-reported symptom assessment tool for assessing symptom benefit and adverse effects of palliative chemotherapy in women with recurrent ovarian cancer (ROC). We aimed to examine (i) how symptoms within MOST symptom indexes track together (i.e. co-occur) and (ii) the association between MOST symptom indexes and key aspects of health-related quality of life (HRQL). A prospective cohort of women with ROC completed the MOST-T35, EORTC QLQ-C30 and EORTC QLQ-OV28 at baseline and before each cycle of chemotherapy. Analyses were conducted on baseline and end-of-treatment data. Exploratory factor analysis and hierarchical cluster analysis identified groups of co-occurring symptoms. Path models examined associations between MOST symptom indexes and HRQL. Data from 762 women at baseline and 681 at treatment-end who completed all 22 symptom-specific MOST items and at least one HRQL measure were analysed. Four symptom clusters emerged at baseline and treatment-end: abdominal symptoms, symptoms associated with peripheral neuropathy, nausea and vomiting, and psychological symptoms. Psychological symptoms (MOST-Psych) and symptoms due to disease (ovarian cancer) or treatment (MOST-DorT) were associated with poorer scores on QLQ-C30 and OV28 functioning domains and worse overall health at both time points. Four MOST symptom clusters were consistent across statistical methods and time points. These findings suggest that routine standardized assessment of psychological and physical symptoms in clinical practice with MOST plus appropriate symptom management referral pathways is an intervention for improving HRQL that warrants further research.
Publisher: Elsevier BV
Date: 07-2022
Publisher: Wiley
Date: 10-06-2022
DOI: 10.1111/CGE.14169
Abstract: It is important to understand how in iduals perceive uncertainties and the consequent impact on their psychological well‐being and health behavior. The Perceptions of Uncertainties in Genome Sequencing (PUGS) scale measures clinical, affective, and evaluative uncertainties about information from sequencing. The PUGS scale has been shown to be valid and reliable among in iduals receiving results about their genomes. This study assessed whether its validity generalized to patients with cancer undergoing tumor sequencing. Exploratory factor analysis (EFA) was conducted on data from the Molecular Screening and Therapeutics Program ( n = 310) to identify a measurement model. Confirmatory factor analysis (CFA) was used to determine the adequacy of the resulting fit. EFA identified the same three‐factor structure reported previously. CFA confirmed that the measurement model yielded a good fit ( χ 2 /df = 3.72, CFI = 0.96, SRMR = 0.05, and RMSEA = 0.09) and satisfied convergent and discriminant validity. These findings provide further evidence of the validity and reliability of the PUGS scale in measuring three types of uncertainty. Continued application will facilitate an evidence‐based approach to intervention and enhance understanding of what it is like to receive results. In turn, this will improve clinical outcomes as undergoing sequencing becomes an increasingly common experience.
Publisher: SAGE Publications
Date: 19-06-2020
Abstract: In two diary studies, we examined the reciprocal daily association between the satisfaction and frustration of adolescents’ basic psychological needs and sleep, and the role of stress and fatigue in these associations. In Study 1 ( N = 211 52% female Mage = 15.86 years, SD = 1.18 years), daily need experiences were unrelated to daily fluctuations in subjective sleep outcomes. However, shorter daily sleep quantity was related to higher daily fatigue, which in turn related to more daily need frustration and less need satisfaction. Study 2 ( N = 51 49% female Mage = 15.88 years, SD = 2.88 years) extended these findings by demonstrating that daily need frustration related to shorter objective sleep quantity and longer wake after sleep onset, indirectly through higher symptoms of stress. Poor sleep quality also related to worse need experiences via higher daily fatigue. These findings underscore the dynamic interplay between daily need experiences and adolescent sleep.
Publisher: JMIR Publications Inc.
Date: 24-11-2021
DOI: 10.2196/32327
Abstract: Evidence supports several countries introducing legislation to allow cannabis-based medicine as an adjunctive treatment for the symptomatic relief of chronic pain, chemotherapy-induced nausea, spasticity in multiple sclerosis (MS), epileptic seizures, depression, and anxiety. However, clinical trial participants do not represent the entire spectrum of disease and health status seen in patients currently accessing medicinal cannabis in practice. This study aims to collect real-world data to evaluate health-related quality of life in patients prescribed medicinal cannabis oil and describe any differences over time, from before starting therapy to after 3 and 12 months of therapy. Adult patients newly prescribed medicinal cannabis oil by authorized prescribers and under the Special Access Schemes across Australia will be screened for eligibility and invited to participate. A s le size of 2142 is required, with a 3-month follow-up. All participants will complete the EuroQol 5-Dimension European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-30 Depression, Anxiety, and Stress Scale-21 Patients’ Global Impression of Change Patient-Reported Outcomes Measurement Information System (PROMIS) Short Form (SF) version 1.0: Sleep Disturbance 8b and PROMIS SF Fatigue 13a questionnaires. Patients with chronic pain conditions will also complete the PROMIS SF version 1.0: Pain Intensity 3a and PROMIS SF version 1.0: Pain Interference 8a. Patients with movement disorders will also complete Quality of Life in Neurological Disorders (Neuro-QoL) SF version 1.0: Upper Extremity Function (Fine Motor and Activities of Daily Living) and if chorea is indicated, the Neuro-QoL SF version 2.0: Huntington’s Disease health-related Quality of LIFE-Chorea 6a. All questionnaires will be administered at baseline, 2 weeks (titration), monthly up to 3 months, and then every 2 months up to 1 year. Recruitment commenced in November 2020. By June 2021, 1095 patients were screened for the study by 69 physicians in centers across 6 Australian states: Australian Capital Territory, New South Wales, Queensland, South Australia, Victoria, and Western Australia. Of the patients screened, 833 (39% of the target s le size) provided consent and completed baseline questionnaires. Results are expected to be published in 2022. Results of this study will show whether patient-reported outcomes improve in patients accessing prescribed medicinal cannabis from baseline to 3 months and whether any changes are maintained over a 12-month period. This study will also identify differences in improvements in patient-reported outcomes among patients with different chronic conditions (eg, chronic pain, MS, epilepsy, Parkinson disease, or cancer). This protocol contains detailed methods that will be used across multiple sites in Australia. The findings from this study have the potential to be integral to treatment assessment and recommendations for patients with chronic pain and other health indicators for accessing medicinal cannabis. Australian New Zealand Clinical Trials Registry: ANZCTRN12621000063819 www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=380807& isReview=true DERR1-10.2196/32327
Publisher: Elsevier BV
Date: 09-2022
Publisher: Oxford University Press (OUP)
Date: 24-06-2023
DOI: 10.1093/NOP/NPAD035
Abstract: People living with high-grade glioma (HGG) have erse and complex needs. Screening aims to detect patients with some level of unmet need requiring triaging and further assessment. However, most existing measures of unmet need are not suitable for screening in this population due to their length. We aimed to explore the clinical utility of a brief screening tool (SCNS-ST9) in people with HGG in detecting unmet needs. Secondary analysis of data collected in a prospective cohort study of 116 people with HGG who completed the Supportive Care Needs Survey (SCNS-SF34) and a brain cancer-specific needs survey (BrTSCNS) during chemoradiation (T1) and 6 months later (T2). The SCNS-ST9 contains a subset of 9 items from the SCNS-SF34. Data analysis determined the number of in iduals with unmet needs on the SCNS-SF34 and the BrTSCNS, not identified as having some level of need by the SCNS-ST9. Overall, 3 in iduals (T1: 2.6% [3/116] T2: 4.8% [3/63]) at each time point reported other unmet needs on the SCNS-SF34 that were missed by the SCNS-ST9. Domain-specific screening items missed a higher proportion of in iduals (3.2%–26%), particularly in the psychological and health systems domains. Only 1 in idual with brain cancer-specific needs was missed by SCNS-ST9 overall. Findings demonstrate the sensitivity and clinical utility of a brief screening tool (SCNS-ST9) of unmet needs in people with HGG. Routine use of this screening tool, supported by clinical pathways, may improve access to support services, potentially reducing the burden of disease for these patients.
Publisher: Institute of Electrical and Electronics Engineers (IEEE)
Date: 07-2022
Publisher: Springer Science and Business Media LLC
Date: 22-08-2022
DOI: 10.1007/S11136-022-03222-Y
Abstract: Compare the health-related quality of life (HRQL) of the Australian general population during the COVID-19 pandemic (2020) with pre-pandemic data (2015–2016) and identify pandemic-related and demographic factors associated with poorer HRQL. Participants were quota s led from an online panel by four regions (defined by active COVID-19 case numbers) then by age and sex. Participants completed an online survey about their HRQL [EORTC QLQ-C30 questionnaire and General Health Question (GHQ)], demographic characteristics, and the impact of the pandemic on daily life. HRQL scores were compared to a 2015–2016 reference s le using independent t-tests, adjusted for multiple testing. Associations between 22 pre-specified factors (pandemic-related and demographic) and 15 QLQ-C30 domains and GHQ, were assessed with multiple regressions. Most domains were statistically significantly worse for the 2020 s le ( n = 1898) compared to the reference s le ( n = 1979), except fatigue and pain. Differences were largest for the youngest group (18–29 years) for cognitive functioning, nausea, diarrhoea, and financial difficulties. Emotional functioning was worse for 2020 participants aged 18–59, but not for those 60 +. All models were statistically significant at p .001 the most variance was explained for emotional functioning, QLQ-C30 global health/QOL, nausea/vomiting, GHQ, and financial difficulties. Generally, increased workload, negative COVID-19 impacts, COVID-19-related worries, and negative attitudes towards public health order compliance were associated with poorer HRQL outcomes. During the COVID-19 pandemic, Australians reported poorer HRQL relative to a pre-pandemic s le. Risk factors for poor HRQL outcomes included greater negative pandemic-related impacts, poorer compliance attitudes, and younger age. ANZCTR number is: ACTRN12621001240831. Web address of your trial: www.anzctr.org.au/ACTRN12621001240831.aspx . Date submitted: 26/08/2021 2:56:53 PM. Date registered: 14/09/2021 9:40:31 AM. Registered by: Margaret-Ann Tait. Principal Investigator: Madeleine King.
Publisher: Wiley
Date: 03-04-2017
DOI: 10.1002/SMI.2751
Abstract: Grounded in self-determination theory, this study tested the hypothesis that the satisfaction and frustration of the psychological needs for autonomy, competence, and relatedness would relate to fatigue and subjective and objective sleep parameters, with stress and negative sleep cognitions playing an explanatory role in these associations. During a stay at a sleep laboratory in Belgium, in iduals with unexplained chronic fatigue (N = 160 78% female) underwent polysomnography and completed a questionnaire at 3 different points in time (i.e., after arrival in the sleep lab, before bedtime, and the following morning) that assessed their need-based experiences and stress during the previous week, fatigue during the preceding day, and sleep-related cognitions and sleep during the previous night. Results indicated that need frustration related to higher stress, which in turn, related to higher evening fatigue. Need frustration also related to poorer subjective sleep quality and shorter sleep duration, as indicated by both subjective and objective shorter total sleep time and subjective (but not objective) longer sleep latency. These associations were accounted for by stress and negative sleep cognitions. These findings suggest that health care professionals working with in iduals with unexplained chronic fatigue may consider focusing on basic psychological needs within their therapeutic approach.
Publisher: Public Library of Science (PLoS)
Date: 06-09-2023
Publisher: Springer Science and Business Media LLC
Date: 02-12-2022
DOI: 10.1186/S41687-022-00524-0
Abstract: Patient-reported experience measures (PREMs) assess quality-of-care from patients’ perspectives. PREMs can be used to enhance patient-centered care and facilitate patient engagement in care. With increasing quality improvement studies in clinical practice, the use of PREMs has surged. As a result, knowledge about stakeholder experiences of using PREMs to assess quality of care across erse clinical settings is needed to inform PREM implementation efforts. To address this, this review examines the qualitative literature on patient and healthcare provider experiences of using PREMs in clinical practice. Medline, Embase and PsycInfo were systematically searched from inception to May 2021. Additional searching of reference lists for all included articles and relevant review articles were performed. Retrieved articles were screened for eligibility by one reviewer and 25% cross-checked by a second reviewer across all stages of the review. Full texts meeting eligibility criteria were appraised against the COREQ checklist for quality assessment and thematic analysis was used to analyze textual data extracted from the results. Electronic searches identified 2683 records, of which 20 studies met eligibility criteria. Extracted data were synthesized into six themes: facilitators to PREM implementation barriers to PREM implementation healthcare providers’ perspectives towards using PREMs patients’ perspectives towards using PREMs advantages of using PREMs in clinical practice limitations and practical considerations to reduce resistance of PREM usage. The primary factors facilitating and impeding the use of PREMs include organizational-, staff- and patient-related factors. Results can be used to guide the usage and implementation of PREMs in clinical settings by addressing the identified barriers and building on the perceived benefits to encourage adoption of PREMs. Results around facilitators to PREM implementation and practical considerations could also promote appropriate use of PREMs by healthcare providers, helping to improve practice and the quality of care based on patient feedback.
Publisher: MDPI AG
Date: 27-04-2023
Abstract: COVID-19 booster vaccinations have been recommended as a primary line of defence against serious illness and hospitalisation. This study identifies and characterises distinct profiles of attitudes towards vaccination, particularly the willingness to get a booster dose. A s le of 582 adults from Australia completed an online survey capturing COVID-related behaviours, beliefs and attitudes and a range of sociodemographic, psychological, political, social and cultural variables. Latent Profile Analysis (LPA) identified three subgroups: Acceptant (61%), Hesitant (30%) and Resistant (9%). Compared to the Acceptant group, the Hesitant and Resistant groups were less worried about catching COVID-19, used fewer official COVID-19 information sources, checked the news less, were lower on the agreeableness personality dimension and reported more conservatism, persecutory thinking, amoral attitudes and need for chaos. The Hesitant group also reported checking the legitimacy of information sources less, scored lower on the openness to new experiences personality dimension and were more likely than the Resistant and Acceptant groups to report regaining freedoms (e.g., travel) and work requirements or external pressures as reasons to get a booster. The Resistant group were higher on reactance, held more conspiratorial beliefs and rated their culture as being less tolerant of deviance than the Hesitant and Acceptant groups. This research can inform tailored approaches to increasing booster uptake and optimal strategies for public health messaging.
Publisher: Elsevier BV
Date: 02-2018
DOI: 10.1016/J.RIDD.2017.12.012
Abstract: Research in parents of youngsters with Autism Spectrum Disorder (ASD) increasingly documents associations between children's problem behaviors and symptom severity and more dysfunctional and less adaptive parenting behaviors. However, the mechanisms underlying these associations have not been examined thoroughly. This study examines the mediating role of parental need frustration in the relation between child maladjustment (i.e., problem behavior and autism severity) and parenting behavior (i.e., controlling and autonomy-supportive parenting). The s le included 95 parents of adolescents/emerging adults with ASD (M
Publisher: Wiley
Date: 30-03-2019
DOI: 10.1111/WRR.12716
Abstract: Patient-reported outcomes can be included as end points in pressure ulcer (PU) intervention trials to provide information to inform decision-making and improve the lives of patients. However, the challenge for researchers and clinicians is identifying and choosing an appropriate instrument for each particular application that suits their research questions and clinical context. To provide researchers and clinicians with the information needed to inform choice of patient-reported outcome measures, we compared a generic and disease-specific measures' ability to discriminate between clinical groups known to differ, and determined their responsiveness to change. We performed analyses on a subset of patients recruited to the PRESSURE 2 trial that completed the pressure ulcer quality of life instrument-prevention version (PU-QOL-P) and Short Form 12 Questionnaire (SF12) measures at baseline and 30-day posttreatment. Known-group validity and responsiveness-to-change analyses were conducted. The analysis s le consisted of 617 patients that completed both measures at baseline. Known-group validity revealed that some PU-QOL-P symptoms and function scales differentiated between people with category 2 PUs and those without PUs. A less meaningful pattern of results was observed for the SF12 scales, suggesting that the PU-QOL-P is more sensitive to differences between PU and non-PU populations. Responsiveness analysis revealed that the PU-QOL-P was more responsive in detecting disease severity than the SF12. The PU-QOL-P provides a standardized method for assessing PU-specific symptoms and functioning outcomes and is suitable for quantifying the benefits of PU interventions from the patient's perspective. Generic measures are useful for group comparisons of global quality of life domains. Choice of measure for each particular application should be determined by the purpose of the measurement and the information required.
Publisher: Springer Science and Business Media LLC
Date: 17-05-2018
Publisher: Elsevier BV
Date: 02-2022
DOI: 10.1016/J.YGYNO.2021.12.006
Abstract: Knowledge on the course of symptoms patients with ovarian cancer experience is limited. We documented the prevalence and trajectories of symptoms after first-line chemotherapy using the Measure of Ovarian Symptoms and Treatment concerns (MOST). A total of 726 patients who received platinum-based chemotherapy for ovarian cancer were asked to complete the MOST every 3 months, beginning 6 months post-diagnosis and continuing for up to 4 years. We used descriptive statistics to examine temporal changes in MOST-S26 index scores for disease or treatment-related (MOST-DorT), neurotoxicity (MOST-NTx), abdominal (MOST-Abdo), and psychological (MOST-Psych) symptoms, and wellbeing (MOST-Wellbeing) and selected in idual symptoms. We used group-based trajectory models to identify groups with persistently poor symptoms. The median MOST-Abdo, MOST-DorT and MOST-Wellbeing score were worst at chemotherapy-end but improved and stabilised by 1, 3 and 12 months after treatment, respectively. The median MOST-NTx score peaked at 1 month after treatment before improving, while the median MOST-Psych score did not change substantially over time. Long-term moderate-to-severe fatigue (32%), trouble sleeping (31%), sore hands and feet (21%), pins and needles (20%) and anxiety (18%) were common. Trajectory models revealed groups of patients with persistent symptoms had MOST-DorT scores above 30 and MOST-NTx scores above 40 at treatment-end. Although many patients report improvements in symptoms by 3 months after first-line chemotherapy for ovarian cancer, patients who score > 30/100 on MOST-S26-DorT or > 40/100 on MOST-S26-NTx at the end of chemotherapy are likely to have persistent symptoms. The MOST could triage this at-risk subset for early intervention.
Publisher: Springer Science and Business Media LLC
Date: 20-01-2021
Publisher: Elsevier BV
Date: 11-2021
DOI: 10.1016/J.YGYNO.2021.08.022
Abstract: The Measure of Ovarian Symptoms and Treatment (MOST-T35) is a patient-reported symptom index, developed and validated in the context of palliative chemotherapy for recurrent ovarian cancer (OC). We aimed to develop and validate a version suitable for surveillance of symptoms following first-line treatment for OC to support clinical follow-up. In a prospective study of women following completion of first-line chemotherapy for OC, patients completed MOST-T35 every 3 months for up to 3.5 years and other patient-reported outcome measures. Construct validity (Spearman's correlations), discriminative validity (t-tests/ANOVAs assessing differences between clinically distinct groups), ability to detect clinically important symptoms (receiver operating characteristic analysis), and responsiveness (t-tests examining change) were assessed. Data from 726 women who received ≥3 cycles of chemotherapy, did not progress within 3 months, and completed ≥one MOST-T35 were analysed. The revised version, MOST-S26, has 26 items and 5 multi-item indexes: peripheral neuropathy (MOST-NTx), disease or treatment-related (MOST-DorT), abdominal (MOST-Abdo), and psychological symptoms (MOST-Psych), and MOST-Wellbeing, plus 9 in idual items. Construct validity was confirmed (r range = 0.43-0.88). Discriminative validity confirmed expected differences between groups. MOST-NTx and MOST-Psych detected improvements in peripheral neuropathy and psychological symptoms respectively, whereas MOST-Abdo detected worsening of abdominal symptoms pre-recurrence. This study developed and validated the MOST-S26, for surveillance of women in follow-up after first-line chemotherapy for OC. MOST-S26 reliably detected improvement in symptoms of peripheral neuropathy, psychological distress and may detect symptoms of relapse. Administration of MOST-S26 in follow-up consultations could identify concerning symptoms and facilitate timely and appropriate intervention.
Publisher: Springer Science and Business Media LLC
Date: 04-11-2017
Publisher: Springer Science and Business Media LLC
Date: 18-06-2020
Publisher: American Psychological Association (APA)
Date: 12-2018
DOI: 10.1037/HEA0000621
Abstract: Previous findings indicate that patients with chronic fatigue syndrome (CFS) report significant day-to-day fluctuations in subjective energy and sleep. Herein, we examined whether daily variation in the satisfaction and frustration of the basic psychological needs for autonomy, competence, and relatedness would contribute to daily variation in subjective energy and quality and quantity of sleep. In addition, we examined whether daily variation in sleep would contribute to daily need-based experiences through (i.e., mediated by) daily fluctuations in subjective energy. CFS patients (N = 120 92% female M Results indicated that subjective energy, sleep, and need experiences fluctuated significantly from day to day. Daily need satisfaction related to less daily fatigue and more daily vitality, while the opposite pattern was observed for daily need frustration. Daily need frustration was also uniquely related to poorer daily sleep quality. Lastly, better daily sleep quality was also uniquely related to more daily need satisfaction and less daily need frustration via (i.e., mediated by) daily variation in subjective energy. These reciprocal within-day associations remained significant after controlling for the previous day's level of each outcome, with the exception of the relation between need frustration and sleep quality. The present findings underscore the reciprocal day-to-day association between need-based experiences and subjective energy in CFS. (PsycINFO Database Record (c) 2018 APA, all rights reserved).
Publisher: Elsevier BV
Date: 10-2022
DOI: 10.1016/J.PEC.2022.06.009
Abstract: The Knowledge of Genome Sequencing (KOGS) questionnaire was recently developed to measure knowledge of genomic sequencing (GS), with preliminary psychometric data supporting its reliability and validity. The aim of this study was to test the reliability and validity of the KOGS in a larger s le, and to confirm its utility in a cancer setting. The Genetic Cancer Risk in the Young (RisC) study recruits participants with a personal history of cancer, to investigate heritable cancer causes and future cancer risk using germline GS. Participants (n = 261) in a psychosocial substudy of RisC completed a questionnaire after consent to RisC but before GS, including the KOGS, the Intolerance of Uncertainty Scale, the Chew health literacy scale and items assessing demographic and disease variables. Confirmatory factor analysis (CFA), Cronbach alpha and correlational analyses were undertaken. The CFA testing a single-factor model yielded a good model fit, χ2/df = 2.43, comparative fit index (CFI) = 0.97, root mean square error of approximation (RMSEA) = 0.07 and weighted mean root square (WRMR) = 1.03. Factor loadings of all items were above 0.60 and ranged between.66 and.93. The single factor score demonstrated excellent internal consistency (α = 0.82). KOGS scores were significantly associated with health literacy (r = 0.23, p < .001), having a university education [t(258) = -4.53, p < .001] and having a medical or science background [t(259) = -3.52, p < .001] but not with speaking a language other than English at home, time since diagnosis, previous genetic counselling/testing or intolerance of uncertainty. This study confirmed a single-factor structure for the KOGS, and its reliability and validity in a cancer population. Associations with measures of health literacy and education were significant and positive as expected, supporting the KOG's construct validity. Previous genetic counselling may not be sufficient to provide specific knowledge of GS.
Publisher: Wiley
Date: 08-2021
DOI: 10.1016/J.ADOLESCENCE.2021.07.005
Abstract: Although associations between Blatt's personality dimensions of self‐criticism and dependency and adolescents' depressive symptoms are well‐established, only few studies have examined associations between these variables at the level of daily, within‐person fluctuations. Moreover, our understanding of the mechanisms underlying this personality vulnerability to depressive symptoms is limited. Therefore, we studied (a) daily fluctuations in both personality and depressive symptoms over a 7‐day period and (b) the possible interplay between daily variations in personality vulnerability, need‐based experiences (as conceptualized in Self‐Determination Theory), and depressive symptoms. This interplay was examined in terms of both a mediational and a moderating role of the need‐based experiences. Participants were 121 Belgian adolescents ( M age = 15.81 SD age = 1.50 52 % male) who completed questionnaires tapping into daily self‐criticism, dependency, need‐based experiences, and depressive symptoms every evening during seven consecutive days. Multilevel analysis revealed that self‐criticism and dependency fluctuated substantially on a daily basis. These daily fluctuations in personality were related to daily fluctuations in depressive symptoms, with daily variation in need‐based experiences mediating these associations. We found no evidence for interactions between personality and the need‐based experiences. The findings underscore the importance of considering daily fluctuations in in iduals’ personality vulnerability and point to the explanatory role of need‐based experiences in the relation between personality and depressive symptoms on a daily basis.
Publisher: Informa UK Limited
Date: 14-02-2023
Publisher: Elsevier BV
Date: 04-2015
Publisher: SAGE Publications
Date: 24-11-2016
Abstract: Research has not yet examined the relationship between psychological need satisfaction, sleep, mindfulness, and health-related quality of life in people living with HIV. This cross-sectional study ( N = 101 84% male mean age = 45.48, SD = 12.75) found need satisfaction to relate positively to physical and mental health. Sleep quality fully mediated the association with physical health and partially mediated the association with mental health. Furthermore, mindfulness related to higher sleep quality through higher need satisfaction. Findings underscore the role of need satisfaction in determining health-related quality of life and sleep quality in people living with HIV and suggest that mindfulness may facilitate need satisfaction.
Publisher: Elsevier BV
Date: 11-2022
Publisher: Springer Science and Business Media LLC
Date: 30-11-2017
Publisher: Informa UK Limited
Date: 17-05-2019
Publisher: Informa UK Limited
Date: 05-2023
DOI: 10.2147/PROM.S297301
Publisher: Springer Science and Business Media LLC
Date: 30-07-2019
DOI: 10.1007/S11136-019-02255-0
Abstract: The prognostic value of patient-reported outcomes (PROs) has been determined in some cancers, but a focussed review in colorectal cancer (CRC) has not yet been conducted. We systematically reviewed PRO predictors of CRC patient survival. We searched four electronic databases (from inception to May 2018), reference lists and professional organisations to identify studies reporting pre-treatment PRO predictors of overall survival (OS) or progression-free survival (PFS) in CRC identified through univariate or multivariate models. Two reviewers independently applied inclusion criteria and extracted data on study characteristics, median and 1-year survival rates, PROs assessed and model results. In 25 of 27 studies (n = 12,544), at least one PRO was significantly associated with survival. Physical functioning, fatigue, pain and appetite loss predicted OS more often than other PROs in metastatic disease (19/27 studies). One study explored PRO predictors in early-stage CRC, finding emotional well-being and mood predicted OS. In mixed-stage s les (7/27 studies), physical functioning predicted OS more often than other PROs. Few studies modelled PFS, for which few PROs had predictive value. Physical and psychological functioning, pain, fatigue and appetite loss had prognostic significance above and beyond clinical predictors in CRC. Routine monitoring of these PROs may allow earlier detection and amelioration of problems, which may improve quality of life and perhaps extend survival. More research is needed to determine prognostic value of PROs in early-stage CRC, and prognostic significance of changes in PRO scores.
Publisher: Springer Science and Business Media LLC
Date: 24-08-2022
DOI: 10.1007/S00520-022-07305-X
Abstract: Cancer-related fatigue (CRF) is a common and debilitating consequence of cancer and its treatment. Numerous supportive care interventions have been developed to alleviate CRF however, the ersity of outcome measures used to assess CRF limits comparability of findings. We aimed to evaluate the content and psychometric properties of measures used to assess CRF in interventions targeting fatigue, to inform the selection of suitable measures in future research. Included measures were identified from a systematic review of interventions targeting CRF. General characteristics of each measure were extracted, and item content was assessed against domains specified by the National Comprehensive Cancer Network (NCCN) definition of CRF. Psychometric properties were evaluated against COnsensus-based Standards for the selection of heath Measurement INstruments (COSMIN) criteria. Of 54 measures identified, 25 met inclusion criteria. Seventeen were fatigue-specific and eight a fatigue subscale or single item within a broader measure. Only 14 (56%) were specifically developed for cancer populations. Content coverage according to the NCCN CRF definition ranged from 0 to 75%. Evidence for fulfilment of COSMIN criteria in cancer populations ranged from 0 to 93%, with only five measures meeting 70% of the COSMIN criteria. The Piper Fatigue Scale-Revised had good content coverage, but did not comprehensively address COSMIN criteria. The EORTC-FA12 and FACIT/FACT-F had excellent psychometric properties, with each capturing different aspects of fatigue. Ultimately, the choice of CRF measure should be guided by the research question and the CRF domains most relevant to the particular research context.
Publisher: JMIR Publications Inc.
Date: 26-07-2021
Abstract: vidence supports several countries introducing legislation to allow cannabis-based medicine as an adjunctive treatment for the symptomatic relief of chronic pain, chemotherapy-induced nausea, spasticity in multiple sclerosis (MS), epileptic seizures, depression, and anxiety. However, clinical trial participants do not represent the entire spectrum of disease and health status seen in patients currently accessing medicinal cannabis in practice. his study aims to collect real-world data to evaluate health-related quality of life in patients prescribed medicinal cannabis oil and describe any differences over time, from before starting therapy to after 3 and 12 months of therapy. dult patients newly prescribed medicinal cannabis oil by authorized prescribers and under the Special Access Schemes across Australia will be screened for eligibility and invited to participate. A s le size of 2142 is required, with a 3-month follow-up. All participants will complete the EuroQol 5-Dimension European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-30 Depression, Anxiety, and Stress Scale-21 Patients’ Global Impression of Change Patient-Reported Outcomes Measurement Information System (PROMIS) Short Form (SF) version 1.0: Sleep Disturbance 8b and PROMIS SF Fatigue 13a questionnaires. Patients with chronic pain conditions will also complete the PROMIS SF version 1.0: Pain Intensity 3a and PROMIS SF version 1.0: Pain Interference 8a. Patients with movement disorders will also complete Quality of Life in Neurological Disorders (Neuro-QoL) SF version 1.0: Upper Extremity Function (Fine Motor and Activities of Daily Living) and if chorea is indicated, the Neuro-QoL SF version 2.0: Huntington’s Disease health-related Quality of LIFE-Chorea 6a. All questionnaires will be administered at baseline, 2 weeks (titration), monthly up to 3 months, and then every 2 months up to 1 year. ecruitment commenced in November 2020. By June 2021, 1095 patients were screened for the study by 69 physicians in centers across 6 Australian states: Australian Capital Territory, New South Wales, Queensland, South Australia, Victoria, and Western Australia. Of the patients screened, 833 (39% of the target s le size) provided consent and completed baseline questionnaires. Results are expected to be published in 2022. Results of this study will show whether patient-reported outcomes improve in patients accessing prescribed medicinal cannabis from baseline to 3 months and whether any changes are maintained over a 12-month period. This study will also identify differences in improvements in patient-reported outcomes among patients with different chronic conditions (eg, chronic pain, MS, epilepsy, Parkinson disease, or cancer). his protocol contains detailed methods that will be used across multiple sites in Australia. The findings from this study have the potential to be integral to treatment assessment and recommendations for patients with chronic pain and other health indicators for accessing medicinal cannabis. ustralian New Zealand Clinical Trials Registry: ANZCTRN12621000063819 www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=380807& isReview=true ERR1-10.2196/32327
Publisher: Springer Science and Business Media LLC
Date: 27-09-2021
DOI: 10.1007/S11136-021-03003-Z
Abstract: Patient-reported outcome measures (PROMs) are increasingly used in clinical settings to inform in idual patient care. In-depth understanding of end-users' experiences may help identify factors that promote or hinder their use in clinical decision-making. We aimed to examine stakeholder perceptions of the utility of using PROMs in clinical practice based on real-life experience. Systematic review searching Medline, Embase and PsychINFO from inception to May 2021. Qualitative studies examining patients' and/or clinicians' experiences of using PROMs in clinical settings were included. Study screening and data extraction were performed by two independent reviewers. Qualitative data from included studies was analysed thematically. Of 2388 abstracts retrieved, 52 articles reporting 50 studies met eligibility. Five key benefits were identified: (1) promotes active patient involvement (enables goal setting and discussion of sensitive topics) (2) enhances the focus of consultations (prioritizes patient needs) (3) improves quality of care (enables tailored, holistic care and prompts action) (4) enables standardized monitoring of patient outcomes and (5) enhances the patient-clinician relationship (provides reassurance). Perceived limitations included the capacity of PROMs to shift the focus of consultations inaccurately estimate problems raise unrealistic expectations for care inhibit patient-clinician interaction lack clinically meaningful information and not be suitable for all patients. Both patients and clinicians reported benefits of using PROMs across erse health conditions and clinical settings, but also highlighted several limitations. These limitations shed some light on why PROM use may not always improve patient outcomes and provide considerations for the design and implementation of future PROM initiatives.
Publisher: Informa UK Limited
Date: 28-03-2014
DOI: 10.1080/10640266.2014.898983
Abstract: Hilde Bruch (1978) was one of the first to describe the phenomenon of anorectic patients experiencing a critical inner voice. Although several qualitative studies regarding eating disorder patients report this experience, few quantitative studies have been conducted in which hearing voices was examined in eating disorder patients. This motivated us to investigate whether eating disorder patients (N = 74) experience critical inner voices significantly more often than a healthy control group (N = 58). Is voice hearing related to the severity of the eating disorder and to low self-esteem and high self-criticism? These questions will be addressed in this article.
Publisher: Wiley
Date: 30-04-2018
DOI: 10.1002/JCLP.22628
Abstract: The identification of transdiagnostic risk factors and processes that explain the comorbidity between depressive symptoms and eating disorder symptoms is critical. We examined the mediating role of the frustration of adolescents' psychological needs for autonomy, competence, and relatedness in the association between self-critical perfectionism, depressive symptoms and eating disorder symptoms. A cross-sectional study (N = 248 58% female, mean age = 14 years) and a two-wave longitudinal study (N = 608 59% female mean age = 16 years) were conducted. At the level of inter-in idual differences and intra-in idual change, self-critical perfectionism was a robust predictor of both symptoms. After introducing need frustration as an underlying mechanism, the relation between self-critical perfectionism and the two types of symptoms, as well as the relation between the symptoms themselves, decreased. Need frustration represents a transdiagnostic vulnerability process that helps to explain why self-critical perfectionism relates to depressive symptoms and eating disorder symptoms.
Publisher: BMJ
Date: 22-09-2022
Abstract: Physical symptoms, anxiety, depression, fear of recurrence, sexual dysfunction, and social withdrawal are common in women after treatment for ovarian cancer. Most patients would like and need help dealing with these symptoms. The traditional model of follow-up care is unstructured and largely focused on diagnosing recurrent disease, and most oncologists lack skills to identify and manage psychosocial issues. No high quality prospective clinical trials have been conducted to determine the optimal follow-up regimen or the cost effectiveness of ovarian cancer surveillance strategies. To assess emotional wellbeing, acceptability, safety, and cost effectiveness of nurse led follow-up via telehealth for women with ovarian cancer following completion of primary treatment. We hypothesize that compared with routine clinic based follow-up, nurse led follow-up via telehealth, including serum CA125 monitoring and completion of a patient reported outcome instrument, the Measure of Ovarian Symptoms and Treatment concerns-Surveillance (MOST-S26), will improve emotional wellbeing in women with ovarian cancer be feasible, safe, acceptable, and not delay the time to diagnosis of recurrent disease will result in greater patient satisfaction will identify more patients with psychological distress, lead to better care, and improved psychological outcomes and be cost-effective. Phase II multicenter randomized trial comparing 3 monthly nurse led telehealth consultations that include serum CA125 monitoring and completion of the MOST-S26, with routine clinic based follow-up. The allocation ratio will be 1:1. Eligible patients will be women with high grade epithelial ovarian cancer who have normalized serum CA125 (to kU/L) at completion of first line chemotherapy. Emotional wellbeing at 12 months. 150 patients. July 2023. Results expected in 2025, 24 months after the last participant is enrolled. ACTRN12620000332921
Start Date: Start date not available
End Date: End date not available
Funder: Fonds Wetenschappelijk Onderzoek
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