PURPOSE:Despite a high prevalence of fatigue and its importance to patients, many people with long-term conditions do not receive fatigue management as part of their treatment. This review is aimed to identify clinical guidance for the management of fatigue in long-term physical health conditions. METHODS:A systematic mapping review was conducted in accordance with Social Care Institute for Excellence systematic review guidance. Bibliographic databases and guideline repositories were searched for clinical guidelines for long-term conditions, published between January 2008 and July 2018, with a search for updates conducted in May 2023. Data were extracted on the recommendations made for managing fatigue and, where cited, the underlying research evidence used to support these recommendations was also extracted. RESULTS:The review included 221 guidelines on 67 different long-term conditions. Only 30 (13.6%) of the guidelines contained recommendations for managing fatigue. These were categorised as clinical (e.g. conduct further investigations), pharmacological, behavioural (e.g. physical activity), psychological, nutritional, complementary, environmental, and multicomponent. The guidelines rated much of the evidence for fatigue management as fairly low quality, highlighting the need to develop and test fatigue-management strategies in high-quality trials. CONCLUSION:This review highlights that management of fatigue is a very important neglected area in the clinical guidelines for managing long-term conditions.

ObjectivesSubjective reports of cognitive impairment following chemotherapy are frequent in cancer patients. Objective cognitive impairment has been observed in cancer patients regardless of treatment regimen suggesting the relationship between cognitive impairment and chemotherapy is not clear cut. Little research has explored the effects of chemotherapy on cognition following surgery in colorectal cancer (CRC). The present study explored the effects of chemotherapy on cognitive performance in a sample of CRC patients. Methods136 participants were recruited into a prospective cohort study: 78 CRC patients undergoing surgery and adjuvant chemotherapy, 58 CRC patients undergoing surgery only. A battery of neuropsychological tests was administered to participants 4 weeks post-surgery (T1), 12 weeks after first chemotherapy (T2) and 3 months after last chemotherapy (T3) or equivalent time-points. ResultsUsing the criterion of scoring at least two standard-deviations below the group norm on at least one neuropsychological test, 45%-55% of all CRC patients showed cognitive deficits 10 months after surgery (T3) and 14% on at least 3 tests. However, cognition did not significantly differ between patients who had chemotherapy and those who did not. A time by group interaction effect was found on the composite cognition score using multi-level modelling suggesting a greater improvement in cognition in the surgery only group over time (p < 0.05). ConclusionsCRC patients display cognitive impairment 10 months after surgery. Chemotherapy did not worsen cognitive impairment but did appear to slow cognitive recovery relative to those undergoing surgery only. The findings demonstrate a clear need for supportive cognitive interventions for all CRC patients following treatment.

In 2014 Parkinson’s UK conducted a research prioritisation exercise with stakeholders highlighting important clinical research questions. The exercise highlighted the need for effective interventions to be developed and tested to tackle a range of non-motor symptoms including: sleep quality, stress and anxiety, mild cognitive impairment, dementia and urinary problems. The present work set out to build on this exercise by prioritising types of non-pharmacological interventions to be tested to treat the identified non-motor symptoms. A Patient and Public Involvement exercise was used to reach consensus on intervention priorities for the treatment of non-motor symptoms. A Delphi structure was used to support the feedback collected. A first-round prioritisation survey was conducted followed by a panel discussion. Nineteen panellists completed the first-round survey (9 people with Parkinson’s and 10 professionals working in Parkinson’s) and 16 participated in the panel discussion (8 people with Parkinson’s and 8 professionals working in Parkinson’s). A second-round prioritization survey was conducted after the panel discussion with 13 people with Parkinson’s. Physical activity, third wave cognitive therapies and cognitive training were rated as priority interventions for the treatment of a range of non-motor symptoms. There was broad agreement on intervention priorities between health care professionals and people with Parkinson’s. A consensus was reached that research should focus on therapies which could be used to treat several different non-motor symptoms. In the context of increasing digitisation, the need for human interaction as an intervention component was highlighted. Bringing together Parkinson’s professionals and people with Parkinson’s resulted in a final treatment priority list which should be both feasible to carry out in routine clinical practice and acceptable to both professionals and people with Parkinson’s. The workshop further specified research priorities in Parkinson’s disease based on the current evidence base, stakeholder preferences, and feasibility. Research should focus on developing and testing non-pharmacological treatments which could be effective across a range of symptoms but specifically focusing on tailored physical activity interventions, cognitive therapies and cognitive training.

Background Coordinated care and telehealth services have the potential to deliver quality care to chronically ill patients. They can both reduce the economic burden of chronic care and maximize the delivery of clinical services. Such services require new behaviors, routines, and ways of working to improve health outcomes, administrative efficiency, cost-effectiveness, and user (patient and health professional) experience. Objective The aim of this study was to assess how health care organization setup influences the perceptions and experience of service managers and frontline staff during the development and deployment of integrated care with and without telehealth. Methods As part of a multinational project exploring the use of coordinated care and telehealth, questionnaires were sent to service managers and frontline practitioners. These questionnaires gathered quantitative and qualitative data related to organizational issues in the implementation of coordinated care and telehealth. Three analytical stages were followed: (1) preliminary analysis for a direct comparison of the responses of service managers and frontline staff to a range of organizational issues, (2) secondary analysis to establish statistically significant relationships between baseline and follow-up questionnaires, and (3) thematic analysis of free-text responses of service managers and frontline staff. Results Both frontline practitioners and managers highlighted that training, tailored to the needs of different professional groups and staff grades, was a crucial element in the successful implementation of new services. Frontline staff were markedly less positive than managers in their views regarding the responsiveness of their organization and the pace of change. Conclusions The data provide evidence that the setup of health care services is positively associated with outcomes in several areas, particularly tailored staff training, rewards for good service, staff satisfaction, and patient involvement.

Non-motor symptoms of Parkinson's disease have a significant impact on quality of life. Despite this, many non-motor symptoms remain unreported by patients and consequently untreated. This study explored barriers to help-seeking using two theoretical frameworks, the Common Sense Model of illness perception and Theoretical Domains Framework. A total of 20 participants completed semi-structured interviews to explore symptom beliefs and help-seeking behaviour. Uncertainty about the relationship of non-motor symptoms to Parkinson's disease and lack of clarity around treatments were common. Embarrassment and communication difficulties were common for potentially sensitive symptoms such as sexual dysfunction. Symptom perceptions and beliefs about help-seeking acted as barriers to reporting non-motor symptoms.

BACKGROUND:Although language and communication difficulties are common in secondary school students, there has been limited research into the efficacy of interventions for adolescents with language and communication difficulties.AIMS:To investigate the efficacy of teaching assistant (TA)-delivered narrative and vocabulary interventions to mainstream secondary school-aged students with language disorder.METHODS & PROCEDURES:A randomized controlled trial (RCT) of a language and communication intervention was used to evaluate the efficacy of vocabulary and narrative interventions to improve the vocabulary and narrative performance of adolescents (mean age = 12.8 years) with language disorder. The language and communication programmes (narrative, vocabulary and combined narrative and vocabulary) were delivered by TAs in the classroom, three times per week, for 45-60 min each, over 6 weeks, totalling 18 sessions. Standardized and intervention-specific measures were used as outcomes.OUTCOMES & RESULTS:Twenty-one schools with 358 eligible participants were recruited. The three intervention groups showed significant improvements (d = .296) on a narrative latent variable defined by a standardized narrative assessment (the Expression, Reception and Recall of Narrative Instrument-ERRNI), but there were no significant improvements on an overall vocabulary latent variable compared with the waiting control group. Differential effects were found on some non-standardized intervention-specific measures with the narrative group making significantly more progress on narrative tasks compared with the waiting control group, the vocabulary group showing the same pattern on specific vocabulary tasks, and the combined narrative and vocabulary group making significantly more progress on some of the intervention-specific narrative, and all the intervention-specific vocabulary outcomes compared with the waiting control group.CONCLUSIONS & IMPLICATIONS:It is possible to improve narrative but not vocabulary skills, as assessed by standardized measures, in secondary school students with a relatively brief group TA-delivered intervention. There were differential effects for both narrative and vocabulary with intervention-specific measures. Future work is required to explore whether more intensive and longer lasting interventions would be more effective and to identify which students in this age group are most likely to benefit from such interventions.

Background Non-motor symptoms (NMS) are common in Parkinson's disease (PD) and cause significant distress. A high rate of non-declaration of NMS by patients to healthcare providers (HCP) means that many NMS remain untreated. Current understanding of the factors preventing disclosure of NMS to HCPs is limited. The present study aimed to i) further assess the prevalence of NMS and associated distress, ii) establish current rates of NMS reporting across a range of sources, and iii) explore overall and any symptom specific barriers to help-seeking for NMS. Methods 358 PD patients completed a cross-sectional survey of NMS severity, reporting and barriers to help-seeking. A series of Generalised Estimating Equations were used to determine whether barriers were symptom specific. Results A mean of 10.5 NMS were reported by each patient. Rates of non-reporting of NMS ranged from 15 to 72% of those experiencing distressing symptoms. The most commonly reported barriers to help-seeking were acceptance of symptoms; lack of awareness that a symptom was associated with PD, and belief that no effective treatments were available. Symptom specific barriers were found for sexual dysfunction (embarrassment), unexplained pain and urinary problems (belief about lack of treatment availability). Conclusion A diverse range of barriers prevent PD patients reporting NMS to HCPs and these barriers differ between NMS. The study provides the foundations for developing interventions to increase reporting by targeting individual NMS. Increasing rates of help-seeking for NMS by patients to their Parkinson's healthcare providers will increase appropriate clinical care which may improve quality of life and well-being.

Introduction Telehealth (TH) is a potential solution to the increased incidence of chronic illness in an ageing population. The extent to which older people and users with chronic conditions accept and adhere to using assistive technologies is a potential barrier to mainstreaming the service. This study reports the development and validation of the Whole Systems Demonstrator (WSD) Service User Technology Acceptability Questionnaire (SUTAQ). Methods Questionnaires measuring the acceptability of TH, quality of life, well-being and psychological processes were completed by 478 users of TH. The 22 acceptability items were subject to principal components analysis (PCA) to determine sub-scales. Scale scores, relationships between scales and other patient-reported outcome measures (PROMs), and group differences on scales were utilised to check the reliability and validity of the measure. Results PCAs of SUTAQ items produced six TH acceptability scales: enhanced care, increased accessibility, privacy and discomfort, care personnel concerns, kit as substitution and satisfaction. Significant correlations within these beliefs and between these scales and additional PROMs were coherent, and the SUTAQ sub-scales were able to predict those more likely to refuse TH. Discussion The SUTAQ is an instrument that can be used to measure user beliefs about the acceptability of TH, and has the ability to discriminate between groups and predict individual differences in beliefs and behaviour. Measuring acceptability beliefs of TH users can provide valuable information to direct and target provision of services to increase uptake and maintain use of TH.

Background This systematic review examines whether there is a relationship between objective measures of chemotherapy-related cognitive impairment in patients with solid cancer tumours and health-related quality of life (HRQoL). Methods Multiple online databases were searched (including Ovid MEDLINE, EMBASE, PsycINFO, PsycARTICLES, CINAHL, PubMed, and Web of Science) to identify articles published between 1980 and 2016 examining the extent of chemotherapy-related cognitive deficit and its relationship with HRQoL in cancer patients. Of 2769 potentially relevant articles, 17 studies met the inclusion criteria for the current review. Results Evidence for the presence of cognitive impairment in patients treated with chemotherapy was found in 15 of the 17 studies. Of the 15 studies finding some sort of cognitive impairment, 12 were in female breast cancer patients, 2 in bowel cancer, and 1 each in ovarian and lung cancer. Three of the 15 studies found a significant relationship between various objectively measured cognitively impaired domains and specific HRQoL outcomes. There was, however, only limited testing of the relationships between quantifiable cognitive dysfunction and HRQoL domains. Conclusions This review suggests that in patients with solid tumours, where there is a relationship between chemotherapy treatment and cognitive impairment, the type and level of cognitive decline does not consistently appear to affect such patients' HRQoL. This could be partly explained by variations in study design, measures used, definitions of cognitive impairment, varying measurement time frames, small sample sizes, and differences in disease severity and type of treatment regimes.

Background Much is written about the promise of telehealth and there is great enthusiasm about its potential. However, many studies of telehealth do not meet orthodox quality standards and there are few studies examining quality of life in diabetes as an outcome. Objective To assess the impact of home-based telehealth (remote monitoring of physiological, symptom and self-care behavior data for long-term conditions) on generic and disease-specific health-related quality of life, anxiety, and depressive symptoms over 12 months in patients with diabetes. Remote monitoring provides the potential to improve quality of life, through the reassurance it provides patients. Methods The study focused on participant-reported outcomes of patients with diabetes within the Whole Systems Demonstrator (WSD) Telehealth Questionnaire Study, nested within a pragmatic cluster-randomized trial of telehealth (the WSD Telehealth Trial), held across 3 regions of England. Telehealth was compared with usual-care, with general practice as the unit of randomization. Participant-reported outcome measures (Short-Form 12, EuroQual-5D, Diabetes Health Profile scales, Brief State-Trait Anxiety Inventory, and Centre for Epidemiological Studies Depression Scale) were collected at baseline, short-term (4 months) and long-term (12months) follow-ups. Intention-to-treat analyses testing treatment effectiveness, were conducted using multilevel models controlling for practice clustering and a range of covariates. Analyses assumed participants received their allocated treatment and were conducted for participants who completed the baseline plus at least one follow-up assessment (n=317). Results Primary analyses showed differences between telehealth and usual care were small and only reached significance for 1 scale (diabetes health profile-disinhibited eating, P=.006). The magnitude of differences between trial arms did not reach the trial-defined minimal clinically important difference of 0.3 standard deviations for most outcomes. Effect sizes (Hedge's g) ranged from 0.015 to 0.143 for Generic quality of life (QoL) measures and 0.018 to 0.394 for disease specific measures. Conclusions Second generation home-based telehealth as implemented in the WSD evaluation was not effective in the subsample of people with diabetes. Overall, telehealth did not improve or have a deleterious effect quality of life or psychological outcomes for patients with diabetes over a 12-month period.

OBJECTIVE:We carried out a cross-sectional study to assess cognitive function in a sample of adult CHD patients, within the Functioning in Adult Congenital Heart Disease study London. The association between cognitive functioning and disease complexity was examined. METHODS:A total of 310 patients participated in this study. Patients were classified into four structural complexity groups - tetralogy of Fallot, transposition of the great arteries, single ventricle, and simple conditions. Each patient underwent neuropsychological assessment to evaluate cognitive function, including memory and executive function, and completed questionnaires to assess depression and anxiety. RESULTS:Among all, 41% of the sample showed impaired performance (>1.5 SD below the normative mean) on at least three tests of cognitive function compared with established normative data. This was higher than the 8% that was expected in a normal population. The sample exhibited significant deficits in divided attention, motor function, and executive functioning. There was a significant group difference in divided attention (F=5.01, p=0.002) and the mean total composite score (F=5.19, p=0.002) between different structural complexity groups, with the simple group displaying better cognitive function. CONCLUSION:The results indicate that many adult CHD patients display impaired cognitive function relative to a healthy population, which differs in relation to disease complexity. These findings may have implications for clinical decision making in this group of patients during childhood. Possible mechanisms underlying these deficits and how they may be reduced or prevented are discussed; however, further work is needed to draw conclusive judgements.

BACKGROUND:The American Behaviour Change Consortium (BCC) framework acknowledges patients as active participants and supports the need to investigate the fidelity with which they receive interventions, i.e. receipt. According to this framework, addressing receipt consists in using strategies to assess or enhance participants' understanding and/or performance of intervention skills. This systematic review aims to establish the frequency with which receipt is addressed as defined in the BCC framework in health research, and to describe the methods used in papers informed by the BCC framework and in the wider literature. METHODS:A forward citation search on papers presenting the BCC framework was performed to determine the frequency with which receipt as defined in this framework was addressed. A second electronic database search, including search terms pertaining to fidelity, receipt, health and process evaluations was performed to identify papers reporting on receipt in the wider literature and irrespective of the framework used. These results were combined with forward citation search results to review methods to assess receipt. Eligibility criteria and data extraction forms were developed and applied to papers. Results are described in a narrative synthesis. RESULTS:19.6% of 33 studies identified from the forward citation search to report on fidelity were found to address receipt. In 60.6% of these, receipt was assessed in relation to understanding and in 42.4% in relation to performance of skill. Strategies to enhance these were present in 12.1% and 21.1% of studies, respectively. Fifty-five studies were included in the review of the wider literature. Several frameworks and operationalisations of receipt were reported, but the latter were not always consistent with the guiding framework. Receipt was most frequently operationalised in relation to intervention content (16.4%), satisfaction (14.5%), engagement (14.5%), and attendance (14.5%). The majority of studies (90.0%) included subjective assessments of receipt. These relied on quantitative (76.0%) rather than qualitative (42.0%) methods and studies collected data on intervention recipients (50.0%), intervention deliverers (28.0%), or both (22.0%). Few studies (26.0%) reported on the reliability or validity of methods used. CONCLUSIONS:Receipt is infrequently addressed in health research and improvements to methods of assessment and reporting are required.

Background There is considerable heterogeneity in effectiveness of telehealth interventions for COPD patients quality of life, psychological distress and healthcare utilisation. One potential reason for the variations in results is that some telehealth interventions are not effective in changing patient self-care behaviours. This research focuses on the extent to which providing people with tools to monitor their condition can improve self-care behaviours. Methods The Chronic Obstructive Pulmonary Disease cohort of the Whole Systems Demonstrator Trial is a pragmatic GP clustered RCT evaluating TH in the UK from three regions in England. All patients at a participating GP practice were deemed eligible for inclusion in the study if they were diagnosed with COPD. Findings 447 participants completed baseline and either a short (4 months) or long term (12 months) follow up. There was a trend of improved self-care behaviours, but there were no trial arm differences between telehealth and usual care groups (p>0.05) Discussion Although TH showed minimal benefit in COPD patients who were not preselected to be at increased risk of acute exacerbations, in the longer term follow up, not shorter-term, these improvements could not be explained by self-care behaviours or self-efficacy to perform self-care behaviours. TH is a complex intervention and should be embedded in a service that is evidenced based. Future research should monitor the fidelity of telehealth interventions to assess their internal validity, along with the monitoring of process variables that are sensitive enough to detect changes in the target population for the specific telehealth intervention.

Background: Patients with Parkinson’s disease (PD) frequently experience non-motor symptoms (NMS) (e.g. sleep, bladder, or bowel problems, sexual dysfunction) which significantly impact upon quality of life. Up to 65% of patients do not report these symptoms to healthcare professionals. Barriers to help-seeking were explored in previous research using the Theoretical Domains Framework (TDF). The present study aims to develop and test the feasibility of an individualised online intervention using Lifeguide to empower patients to report these symptoms to neurologists. Methods: A pre-post intervention design will be used. 30 PD patients with undisclosed NMS will be recruited. Participants will complete online questionnaires measuring NMS (NMSQuest), help-seeking (GHSQ and AHSQ), PD severity (PADL) and intervention acceptability. Descriptive data will be presented including the proportion of patients self-reporting help-seeking post-intervention. Expected results: The results will provide an estimate of the proportion of patients help-seeking post-intervention, testing the validity of self-reported help-seeking by comparing patient self-report with clinical notes, ascertaining completion rates of the intervention and online questionnaires, and determining the proportion of patients who fail to attend their neurology clinic appointment. Current stage of work: Ethical approval has been granted. The intervention is currently under development. Appropriate Behaviour Change Techniques are being selected to target the theoretical domains that act as barriers to help-seeking. Discussion: This research represents a new application of the TDF in the development of help-seeking interventions. The individualised nature of the intervention targeting barriers specific to each patient may provide new insights into the development of effective help-seeking interventions.

Background: Chemotherapy-related cognitive impairment – known anecdotally as ‘chemobrain’ – is often reported by cancer patients. This condition has primarily been investigated in breast cancer populations, where perceived cognitive impairment (PCI) has been linked to fatigue, anxiety, and mood. This study explores whether colorectal cancer (CRC) patients report similar experiences of PCI during chemotherapy. Methods: Post-surgery CRC patients due to receive adjuvant chemotherapy (n=24) completed the FACT-Cognitive Scale, FACIT-Fatigue Scale, and the Hospital Anxiety and Depression Scale prior to starting treatment (T1) and again 12 weeks later (T2). Assessments were also completed by a surgery-only control group (n=10) at comparative time-points. Analysis explored between-group comparisons, changes over time, and relationships between variables. Findings: At T1 there were no significant differences in PCI between chemotherapy (M=50.67, SD=15.69) and surgery-only patients (M=58.60, SD=12.62; t[32]=1.42, p=0.19); however, at T2, PCI was significantly higher in chemotherapy (M=47.14, SD=15.23) compared to surgery-only patients (M=59.90, SD=7.3; t[28]=2.19, p=0.016). At T2, there were significant correlations between PCI and fatigue (r=0.724, p=<0.001), anxiety (r=-0.681, p=0.001), and mood (r=-0.574, p=0.005) in chemotherapy patients; whilst anxiety alone was significantly correlated with PCI in surgery-only patients (r=-0.759, p=0.029). There were no significant changes in PCI between T1 and T2 in either group; however, surgery-only patients did experience significantly reduced fatigue. Discussion: Chemotherapy-related PCI occurs in CRC, with links to experiences of fatigue, anxiety, and mood. Although causality remains unclear, it is possible that PCI is part of a wider psychological response to treatment, presenting opportunities for cognitive-behavioural interventions to improve outcomes.